The Transprofessional Model of Terminal Care Reforming End Stage Care in HIV AIDS

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THE TRANSPROFESSIONAL MODEL OF TERMINAL
CARE: REFORMING END-STAGE CARE IN
HIV/AIDS
by
David A. Cherin
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(Social Work)
August 1996
© 1996 David A. Cherin
UMI Number: 9705083
UMI Microform 9705083

Copyright 1996, by UMI Company. All rights reserved.
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UNIVERSITY OF SOUTHERN CALIFORNIA
THE GRADUATE SCHOOL
u n iv e r s it y p a r k
LOS ANGELES. CALIFORNIA 90007
This dissertation, written by
Dav id A l e x Ch er in
under the direction of hi.?........ Dissertation

Committee, and approved by all its members,
has been presented to and accepted by The
Graduate School, in partial fulfillm ent of re
quirements for the degree of
DOCTOR OF PHILOSOPHY
Dean of Graduate Studies
Date . I?.?.?.........
DISSERTATION COMMITTEE
Chairperson
ACKNOWLEDGMENTS
Just once during the process of writing this dissertation, I would have loved
to have heard aloud my mother and father asking, “How is our son the doctor
coming with his work?” No greater joy has any immigrant parent than to ask that
question, and no greater joy has any first generation American child of immigrant
parents than to answer that question. Both of my parents are deceased, but I
played that brief conversation in my head night after night as I worked on this
dissertation. I want to thank my parents for being with me through this process.
To my wife and best friend in the whole world, Tricia, thank you for your
love, your caring, your support, and for doing just about everything around the
“pond” and managing to make me feel like this project was “doable." To the rest
of the Cherin clan—Alexander Hamilton, Dylan Thomas, and Sarah Isadora Esther,
I appreciated the encouragement and the acknowledgments of my efforts that you
took the time to give.
I feel very lucky to have been mentored in this process by Fred DeJong, who
mixed well his roles of task master, friend, and colleague. Thank you, Fred, for
both the late night editing sessions and the early morning encouragement
sessions. I was also extremely lucky to have support and encouragement from
Michal Mor-Barak. Thank you, Michal, for providing that.
I would also like to thank those at the University of Southern California
School of Social Work who provided me with constant encouragement by both
their words and their deeds: Rino Patti, John Brekke, Francis Caple. Ramon
Salcido, Sam Taylor, and Bruce Jansson. A special thank you to Bill Meezan for
the guidance he provided and the unselfish giving of friendship.
Without June Simmons, Kris Hillary, Cathy Winteringham, and Theresa
Loftus of the Visiting Nurse Association of Los Angeles, none of this effort would
have been possible. Thank you all for your guidance, support, and for making work
fun.
Finally, a large, unqualified set of thank you’s are necessary for two friends,
James Kincaid and Gayla Blackwell. Thank you, Jim, for being there for me.
Thank you for playing important roles in my life at important times and being what
true friendship is all about. Gayla, thank you for providing me with encouragement,
relevance, and true friendship. Your unabashed support kept me going just so I
would not let you down.
iv
TABLE OF CONTENTS
ACKNOW LEDGM ENTS..................................................................................... ii
LIST OF T A B L E S ................................................................................................ ix
LIST OF F IG U R E S ............................................................................................. xi
ABSTRACT.......................................................................................................... xii
PR EFA C E ............................................................................................................ xiv
Chapter
1. IN TR O D U C TIO N ................................................................................ 1
Focus of Research ..................................................................... 1
Patient-Level Characteristics ............................................. 2
Organizational F a c to rs ........................................................ 3
Regulatory Iss u e s................................................................ 4
Definition and Magnitude of the Problem ............................... 4
Costs of Terminal C a re ........................................................ 6
The Changing Epidemiology of Terminal Diseases ___ 7
Terminal Care Costs/Patient Quality of Life Not
Altered by Hospice and Advance Directives 10
Hospice ......................................................................... 11
Advance directives........................................................ 13
Barriers to the Realization of Improved Quality of
Life and Cost Reductions.................................................... 14
Patient Level Characteristics ............................................. 15
Attitudes and awareness of the terminal
prognosis................................................................ 15
Disease s ta g e ................................................................ 17
Patient sociodemographics ........................................ 19
Organizational Level Factors ............................................. 20
Models of C a r e ..................................................................... 21
Regulatory Level Is s u e s ...................................................... 23
V
Chapter Page
Relevance of the Study to Social W o rk ................................... 25

The Problem Restated ....................................................... 26
2. THE HISTORICAL AND SOCIOLOGICAL ROOTS

OF THE CURRENT TERMINAL CARE PR O B LEM ...................... 27
Emergence and Dominance of the Medical Model
of Care .................................................................................. 27
Palliative Orientation and Hospice Care: Overview
And Service Intent .............................................................. 34
3. LITERATURE REVIEW AND THEORETICAL FRAME

WORK ................................................................................................. 37
The Terminal P atien t.................................................................. 38
Overview of Awareness, Acknowledgment,
And Communications About D yin g ............................. 39
Awareness ........................................................................... 42
Individual awareness of death ................................... 43
Acknowledgment of Dying ................................................. 47
The Patient’s R o le................................................................ 53
Empirical research on patient system
acknowledgment ................................................... 56
Advance directives and acknowledgment.................. 62
Disease Stage and Patient Dem ographics...................... 65
Disease stag e................................................................ 67
Patient demographics................................................... 70
Quality of Life ...................................................................... 74
Organization of Terminal Care S e rv ic e s ................................. 83
Intent of Terminal Care Services Theory ........................ 85
Empirical Research on Intent of Terminal
Care S ervices................................................................ 88
Arrangement of Terminal Care S ervices........................... 93
Hospice care arrangem ents........................................ 97
Empirical Research on Models of Terminal
C a r e ............................................................................... 99
Case management: Continuity of c a r e ...................... 100
The trajectory m odel..................................................... 104
Blended intent m o d e l................................................... 106
Hospice Adm issions........................................................... 108
Regulatory Environm ent..................................................... 116
Costs of Terminal C a re ....................................................... 120
vi
Chapter Page
Empirical Research on the Costs of Terminal

C a r e ................................................................................ 122
The State of the Current Research: A Synthesis.................... 131
Intent of Terminal C a r e ........................................................ 131
Acknowledgment ................................................................. 133
Costs .................................................................................... 135
Quality of L if e ....................................................................... 136
Models of Terminal Care Services .................................... 137
The Transprofessional Model of Terminal Care:
Combining the Intents of Terminal Care and
Facilitating the Terminal Acknowledgment
Process.................................................................................. 140
Proposed Model of Care To Be T e s te d .................................... 143
4. STUDY M ETH O D O LO G Y................................................................ 147

Study O verview ........................................................................... 147
The Study S am ple....................................................................... 150
Description of the Overall S am p le............................................ 153
Sociodemographics of the Overall S am p le...................... 154
Health-Related Overall Sample Demographics .............. 162
Subsample Demographic Com parisons........................... 167
External Validity ................................................................... 170
Determining Sample S iz e ................................................... 171
Study D esign................................................................................ 173
Referral and Intake P ro cess............................................... 173
Randomization Procedures................................................. 176
Measurement and Concepts D e fin e d ............................... 177
The Transprofessional Model ................................................... 179
Demographics....................................................................... 182
Disease Stage ..................................................................... 183
Intent of Services ................................................................ 184
Acknowledgment ................................................................. 185
Hospice Days and Adm ission............................................. 186
Costs...................................................................................... 188
Quality of Life ....................................................................... 190
Internal Validity of S tu d y ..................................................... 192
Data Gathering ........................................................................... 195
MIS Package ....................................................................... 195
The Reid Package .............................................................. 196
The Telephone P ackage..................................................... 197
Analysis P lan ................................................................................ 198
VII
Chapter Page
5. RESULTS .......................................................................................... 202

Intent of the Models of Care ..................................................... 203
The Context of Intent .......................................................... 204
The Content of Intent .......................................................... 208
Acknowledgment......................................................................... 216
Group Differences Regarding Acknowledg
ment ............................................................................... 217
Acknowledgment and D e a th ............................................... 219
Understanding Acknowledgment ...................................... 220
The Hospice Admission.............................................................. 223
Understanding the Hospice Adm ission............................. 227
Costs of Care ............................................................................. 228
Overall Costs of C a r e .......................................................... 229
Hospice Costs Versus Standard Care Costs .................. 237
Factors Impacting Costs of Care ...................................... 238
Quality of Life ............................................................................. 240
The Kamofsky Rating S c a le ............................................... 241
The SF-21: Quality of L ife ................................................... 242
General functioning and cognitive func
tioning evaluation ................................................... 244
6. DISCUSSION .................................................................................... 249

The Intent of the Transprofessionai Model ............................. 251
Acknowledgment......................................................................... 254
The Hospice Admission.............................................................. 256
Costs of Terminal Home C a re ................................................... 261
Medication Costs ................................................................ 262
Labor Costs ......................................................................... 263
Hospice Versus Nonhospice C osts.................................... 264
Study Im plications....................................................................... 266
Gaps in the R esearch.......................................................... 269
Future Research P la n s ........................................................ 271
BIBLIO GRAPHY................................................................................................. 273
Appendix
1. MODULE 3: JOHNS HOPKINS HIV/AIDS

DISEASE C LU S TE R S ....................................................................... 295
2. APPROVAL OF STUDY .................................................................. 297
V III
Appendix Page
3. CONSENT F O R M S .......................................................................... 300
4. AGENDA AND ABSTRACT OF T R A IN IN G ................................... 303
5. DEMOGRAPHIC M EA SUR ES........................................................ 312
IX
LIST OF TABLES
Table Page
1. Clinical Categories: AIDS Case Definition for Ado

lescents and Adults, 1 9 9 3 ................................................................ 152
2. Demographic Comparison of Sample with Los An

geles County HIV/AIDS Patients...................................................... 155
3. Sociodemographic Characteristics of Study Sample ...................... 156
4. Health-Related Demographic Characteristics of Study

Sample ............................................................................................... 157
5. Admitting Disease Stage at Intake of Study Participants ............... 158
6. Patient Knowledge at Intake of Diagnosis and Prognosis................ 159
7. Service-Related Demographics by Study Groups, 8/1/95-

3/31/96 ............................................................................................... 160
8. Sociodemographic Characteristics of Study Sub

sample (N = 6 0 ).................................................................................. 168
9. Analysis Plan ........................................................................................ 199
10. Home Care Visits by Discipline, 8/1/95-3/31/96 ............................... 205
11. Examples of Patient Care Medical Record E n tries........................... 210
12. Logical Regression of Determinants of the Model (N = 1 6 8 )........... 212
13. Logical Regression of Determinants of the Model (N = 1 6 8 )........... 212
14. Differences in Acknowledgment Between Study Groups

8/1/95-3/31/96 .................................................................................... 217
X
Table Page
15. Comparison of Days to Acknowledgment.......................................... 219
16. Logistic Regression of Factors in Acknowledgment of

Terminal Prognosis (£4= 1 6 8 ) ......................................................... 221
17. Hospice Admissions Compared to National Medicare

Average, 8/1/95-3/31/96 .................................................................. 225
18. Comparison of Days to Hospice Admission and Days on

Hospice, 8/1/95-3/31/96 .................................................................. 225
19. Total Costs and Costs by Subcategories (H = 168),

8/1/95-3/31/96 .................................................................................... 231
20. Medications and Costs Utilized in Treatment of Study

Patients, 8/1/95-3/31/96 .................................................................. 233
21. Comparison of Costs Between Study Groups, 8/1/95-

3/31/96 ............................................................................................... 235
22. Comparison of Costs Between Hospice and Nonhos

pice Patients, 8/1 /95 -3/3 1/9 6............................................................ 238
23. Results of the Regression of Total Episode Costs (N =

168) 239
24. Confirmatory Factor Analysis of Quality of Life (N = 3 2 ) .................. 245
xi
LIST OF FIGURES
Figure Page
1. Critical constructs in the referral to hospice....................................... 37
2. Conceptual model of health-related quality of life in

terminal c a r e .................................................................................... 84
3. Conceptualization of the shift in terminal care in te n t....................... 139
4. The impact of the transprofessional model of care on

end-stage outcomes ....................................................................... 142
5. Study design: Time on home care service......................................... 174
6. Study concepts operationalized: Transprofessional

model of c a re .................................................................................... 178
ABSTRACT
This study evaluated the impact of models of care for terminally ill HIV/AIDS
patients with respect to their acknowledgment of the terminal prognosis,
admissions to hospice, and costs of service delivery. Terminal patients (N = 168)
were randomly assigned for home care services either to a conventional model of
home care, case managed by a registered nurse (N = 78), or to the transprofes
sional model of care, case managed by a registered nurse and a clinical social
work team (N = 81). The transprofessional care providers were competent in both
medical/ surgical care and palliative care. All patients were admitted by their
physicians for home based medical services. Patients entered home care after
having experienced at least one acute hospital episode with one of the opportunis
tic infections that define full blown AIDS.
Results showed that the conventional model of care was focused on the
biological and physiological aspects of the disease, while the transprofessional
model focused on bio-psychosocial aspects of the care. The two models of care
differed with regard to arrangement of sen/ice delivery. Skilled nursing was the
predominant mode of care in the conventional model, while the transprofessional
model was a blending of nursing and social work service delivery.
The transprofessional model of care produced a greater number of acknowl
edgments of the terminal prognosis by patients (p. = .002) than was so for the
alternate treatment group. Acknowledgments occurred earlier in the care process
in the transprofessional model than in the conventional model (p = .07). The
percentage of patients admitted to hospice from the transprofessional model was
significantly larger than the national average of hospice admits for terminal patients
(p = .001); and the transprofessional model produced twice as many days on
hospice service than the conventional model (p = .08). Overall, the trans
professional model of care reduced costs of terminal care by $2,612 per patient
over the conventional model of care (p = .02). The transprofessional model
demonstrated both lower labor costs and lower medication costs.
x iv
PREFACE
The author wishes to express his deep sense of gratitude to both the Visiting
Nurse Association of Los Angeles (VNA-LA) and the Health Resources and Service
Administration (HRSA), Bureau of Health Resources Development, Special
Projects of National Significance for making this dissertation possible. The HRSA
funded the VNA-LA’s study under grant number BRU-900120-01-0, and the VNA-
LA made the study data available to the researcher. If it were not for the rela
tionship formed by these two organizations and the support provided to this
researcher, the present study would never have been realized.
1
CHAPTER 1
INTRODUCTION
"Please do everything to make her comfortable" was hardly a simple

command with one meaning shared by family and medical team alike . . .
To the resident, it clearly meant mechanical ventilation, dialysis, keeping the
patient alive at all costs. . . To them [the family of the dying patient], "please
make her comfortable" might easily mean—keep her off machines, use
necessary pain medication to prevent suffering, and do something to stop
her gasping for air. (Glaser & Strauss, 1965, p. 1)
Focus of Research
The portrayal of a terminal patient’s and her family's encounter with the
medical system during the patient's last few hours of life have become all too
common today. The terminal phase of the disease process has become
dominated by what Callahan (1993) has called the "moral logic" of medical prog
ress. In the ever-increasing momentum of conquering disease and inventing med
ical technologies, medical institutions and medical practitioners are to blame if
everything is not done for and used on all patients in all phases of the disease
process. This "do something" dynamic of care (Glaser & Strauss, 1965) now
permeates the treatment of the terminally ill up to and including the last moments
of life.
2
The focus of this research was to evaluate a model of end-stage care and
service delivery that is dually focused on providing active medical treatment and
active psychosocial care for terminal patients. The aim of the proposed model is
to improve the quality of life for terminal patients and to reduce the costs of end-
stage terminal care. The current dichotomy between active treatments and abate
ment of active care when death is eminent has failed to provide the quality of life
and cost outcomes now desired by reformers of end-stage care. The model of care
evaluated in this study is predicated on the simple principle that the blending of the
intents of care of terminal patients throughout the end-stage care process,
eliminating the artificial creation of dichotomies between active treatment and
palliative care, will bring about the desired changes. Focus on pain and symptom
management versus active curative treatment is referred to as "palliative care."
The magnitude and scope of the problem as well as two relevant com
ponents, hospice care and advance directives, are presented. The discussion is
organized around three barriers which impede the reform of end-stage care:
patient-level characteristics, organizational factors, and regulatory issues.
Patient-Level Characteristics
Patient-level characteristics refer to attitudes toward death and dying
(awareness and acknowledgment of the terminal prognosis), patient demographics,
and disease stage. Currently, utilization of end-stage sen/ices that are lower cost
alternatives to aggressive medical treatment require that patients be aware of and
3
acknowledge their impending death. Palliative care, which is care that focuses on
both physiological and psychosocial needs, is currently, as a product of the
configuration of treatment services, not offered to patients until they acknowledge
their terminal prognosis. The lack of blending of treatment intents during end-stage
care, providing palliative care with curative treatment, is an integral part of current
concerns over terminal care. The hypothesis of this study was that this lack of
blending of treatment intents negatively impacts patients' quality of life and results
in higher costs in end-stage care. As a society we do not confront the final
prognosis of impending death; and, as a consequence, quality enhancing services
remain significantly underutilized. Palliative care remains trapped behind the
"acknowledgment curtain." Also discussed are disease stage and patient socio
demographics which act as intervening or moderating variables in achieving
desired patient outcomes in end-stage care.
Organizational Factors
Organizational level issues refer to the models of terminal care and service
delivery, the arrangement of those services, and the intent (focus) of the services
provided. Health care services in this country are now organized on the premise
that diseases are predominantly acute episodes of care. This discussion shows
that the acute care bias in terminal care is out of "sync" with the chronic nature of
terminal illness prevalent in the United States today.
Regulatory Issues
Regulatory issues refer to both reimbursement for services made by insurers
and the regulations that govern treatment. While desiring lower cost alternatives
to end-stage care, insurers and governmental regulatory bodies impose restrictions
on the use of end-stage alternative care services. Payments for services are
primarily focused on the acute hospital setting; less costly alternatives are
regulatorily governed through adjunct modalities to mainstream acute services.
Each of these concepts is defined in greater detail when presented.
Definition & Magnitude of the Problem
Health care costs at the end of life remain the highest expenditures in our
health care delivery system. The acute care bias often sacrifices the patient’s
quality of life during the end stage of life.
Terminal care reform efforts since the 1970s have not been suc
cessful in balancing the provision of active medical treatment, or curative care, with
the management of psychosocial patient problems and management of patient
symptoms and pain, or palliative care. Studies conducted during the past several
decades on death and dying provide a portrait of terminal patients undergoing
active treatments replete with radiation therapy, surgical interventions, and
cardiopulmonary resuscitation as close to death as 2 days before dying. Advances
in modem diagnostic modalities and treatment modalities have brought care in this
country to the stage where, according to Callahan (1993), death has no place in
modem medicine.
Two health care service policy initiatives, hospice benefits under Medicare
and federal legislation encouraging advance directives, were attempts to refocus
treatment in terminal care from active curative intervention to palliative care earlier
than days before death. Hospice, which by regulation stresses palliative care
(mediation of pain and suffering and attention to patient psychological issues) over
active curative treatments, is viewed as a means to accomplish the abatement of
active and costly life-sustaining efforts. Currently, hospices serve only 10% of all
Medicare decedents in a given year and account for less than 1% of yearly
Medicare payments (Scitovsky, 1994). The numbers of HIV+/AIDS patients re
ceiving hospice care is only slightly higher than the Medicare yearly average
(Scitovsky, 1994).
Advance directives empower patients to restrain curative treatment during
the terminal treatment process. Patients utilize advance directives to declare their
wishes and desires regarding life-sustaining treatment when cure no longer is an
option. Advance directive legislation, the Patient Self-Determination Act of 1990,
was designed to increase patient involvement in decisions of medical treatment
(Greco, Schulman, Lavizzo-Mourey, & Hansen-FIaschen, 1991). Studies show that
this form of patient involvement in decision making has had little or no impact in
changing the nature of end-stage care or reducing costs (Schneiderman et al.,
1992).
6
Costs of Terminal Care
Since the early 1960s, we as a nation have spent between 27% and 30%
of our total annual health care dollars on treatment for patients in their last year of
life (Emanuel, Barry, Stoeckle, Ettelson, & Emanuel, 1991; Scitovsky, 1994). This
translated to a total of $184 billion dollars in 1992 (Singer et al., 1992), with roughly
60% of these dollars being spent in the last 3 months of life (McCall, 1984) and
30% expended in the last 30 days of life (Long et al., 1984). The spending of
dollars for health care costs in the last year of life has remained consistently high
and seemingly impervious to controls. Even with the advent of managed care,
prospective payment, hospice terminal care, and advance directives in the last
decade, spending during the last year of life on medical care has remained
unchanged (Scitovsky, 1994).
End-stage costs are incurred by a small percentage of the population. Ap
proximately 2.1 million people die each year. This figure encompasses 1.5 million
people over the age of 65 and 680,000 people under the age of 65 (Emanuel et
al., 1991). Given these rates of mortality, approximately 1% of the population
consumes between 27% and 30% of the medical costs in any given year. On an
individual patient basis, this means that in the last year of life, costs for terminal
care average $31,000. For those patients under the age of 65, the costs of terminal
care in the last year of life are slightly higher at $34,000 (Emanuel et al., 1991).
The costs of terminal care for those under 65 include a significant amount of dollars
being spent annually on end-stage care for those with HIV/AIDS. The leading
7
cause of death for males between 25 and 44 years of age is HIV/AIDS (Center for
Disease Control [CDC], 1995a).
The terminal phase of HIV/AIDS has a lingering trajectory, which makes
treatment and service delivery susceptible to the high cost of chronic terminal care.
It is HIV/AIDS, one of this decade's most tragic chronic illnesses, that both forces
public policy to address the shift in terminal illness from acute, traumatic deaths
to chronic illness and mandates the reform of end-stage care service delivery and
treatment.
The Changing Epidemiology of Terminal

Diseases
The epidemiology of diseases is important to consider in understanding the
definition and magnitude of the problem of care at the end of life. No one would
consider it wrong to apply all the care that is possible and available if it is directed
at "saving" a life that has been victimized by unintentional injury or attempted hom
icide or suicide. However, of the 2.1 million deaths annually in the United States,
unintentional injuries, suicide, and homicide account for only 145,000 deaths, or
7% of the annual total deaths (U.S. Department of Health and Human Services
[DHHS], 1990). The remaining deaths annually in this country are attributable to
chronic diseases—those diseases that are progressive over a number of years and
that can seen to have phases, inclusive of a terminal phase. The leading causes
of death in the United States, in order of annual prevalence are as follows:
8
diseases of the heart, 34%; malignant neoplasm, 24%; cardiopulmonary disease.
11%; diabetes, 2%; HIV infection/AIDS, 2%.
While medical care in this country continues to direct much of its skill and
resources to reversible medical conditions that may result in death if not ag
gressively treated, the bulk of life-threatening illness has shifted to chronic diseases
(Glaser & Strauss, 1968,1965). As Corbin and Strauss (1992) pointed out.
current debate about what is wrong with our health care system is of course
vigorous and complex. Even those who advocate for increasing the funding of
home care don’t go far enough. They, too, are trapped by the dominant image of
acute illness and its concomitant physician-dominated care.
When we discuss the shift of terminal illness from the acute illness to chronic
illness, it is impossible to ignore HIV/AIDS. It is currently the eighth leading cause
of death in this country. As of 1994, according to the CDC, HIV/ AIDS is the
number one leading cause of death among men 25-44 years of age and the fourth
leading cause of death among women in the 25- to 44-year-old bracket. As of
September of 1993, there were 328,392 reported cases of AIDS in the United
States and 152,153 reported deaths; the average annual death rate for HIV
infection/AIDS as of 1991 was 29,000 (CDC, 1994).
Estimates of the lifetime costs of treatment for an HIV/AIDS patient and
costs in the last year of life range from $3 billion to $13 billion annually, or between
1.2% and 2.4% of the total U.S. personal health care expenditures (Morrison,
9
1993). Costs per individual HIV/AIDS patient over a lifetime of treatment have been
estimated to be between $60,000 and $75,000 (Morrison. 1993).
Recent studies conducted on the last 6 months of life for HIV/AIDS patients
(Scitovsky, 1994) have revealed that monthly costs of care averaged $9,000. or
approximately $54,000 in total. This figure is almost $20,000 or 1.5 times greater
than the average cost in the last year of life of terminal patients under the age of
65. Costs for HIV/AIDS patients who have died in any given year have been
estimated to be as high as 3 times greater than those of patients who survived
during that year (Hellinger, Fleishman, & Hsia, 1994). Using the CDC-reported
annual death rate due to HIV infection/AIDS (29,000) and the end-stage cost-of-
care numbers reported by Scitovsky (1994), the annual cost for terminal care for
HIV/AIDS is approximately $1.6 billion. This means 2% of those who die in any
given year are consuming close to 3% of all U.S. health care costs in that year.
The condition and disease stage of HIV/AIDS patients upon entering the
health care system affects the end-stage treatment issue. The further advanced
a case is, the greater the amount and frequency of services that are required in
managing the illness (Bartlett, 1994). In Los Angeles County's largest HIV/AIDS
clinic in 1995, the majority of new cases were AIDS patients who had never pre
viously accessed the formal health care system for services for a particular HIV/
AIDS condition. The majority of new cases were full blown AIDS patients.1 This
1"Full blown" means that these patients were suffering from one or more
conditions that represent the opportunistic infections that define AIDS.
10
category represented 60% of new cases for this clinic in 1995 (Los Angeles County
Department of Health Sen/ices, 1996). The time from full blown AIDS to death is
approximately 13-18 months (Martin, 1991). If the Los Angeles experience is
representative of the majority of HIV/AIDS care experiences, patients are entering
the system of care for the first time in the terminal phase of their illness. Combined
with current health cost issues, the HIV/AIDS pandemic will force the U.S. system
of terminal care to reconsider approaches to care and orientation of services.
HIV/AIDS represents a significant issue in dealing with the reform of terminal
care in this country. Unlike cancer care, upon which many of the recent alternatives
to acute terminal care were based, HIV/AIDS does not follow a predictable staging
from onset to death. Not only does HIV/AIDS end-stage treatment challenge our
current organization of end-stage care, but an analysis of AIDS end-stage care may
well provide insights regarding the ineffectiveness of services and policies currently
in use for other end-stage disease treatment protocols.
Terminal Care Costs/Patient Quality

of Life Not Altered bv Hospice and
Advance Directives
The fact that dying occurs almost exclusively in hospitals leads to a more
medicalized approach to the final days of life. Medicalization of death is a
euphemism to characterize medical treatment aimed at forestalling death by
utilization of treatment methods and modalities aimed at fighting the terminal
disease, as opposed to treatments and modalities that provide comfort for the
11
patient with a terminal illness. More than 80% of persons in the United States die
in institutions (McCue, 1995). In the recent literature regarding HIV/AIDS, the
percentage of hospital deaths is almost identical to the national average for other
terminal illnesses. In the end, the medical approach to dying incurs costs that are
extreme and compromise quality of life for terminal patients. Terminal patients that
do reach hospice in many cases receive this service too late for palliative services
to have profound effects.
Hospice. The literature review indicated that hospice service does not
effectively achieve its original mission, i.e., to provide an alternative to continued
utilization of expensive terminal treatments that reduce the quality of life. In
addition, palliative care, which is identified as the hospice care model, has
remained principally the province of hospice and is sparingly utilized in conjunction
with active, curative treatments during terminal illness. This reality is one of the
roots of the problem of high costs and compromised quality of life now associated
with terminal care.
Recognition in the 1960s of the high cost of terminal care and the negative
impact that an exclusively medical model of care was having on terminal patients
led to the importation of the hospice concept of care from England. The hospice
model focused on the dying patient's needs and the alleviation of pain as opposed
to curative-focused care. As delineated by Mor and Masterson-Allen (1987),
hospice care emerged in the United States during the early 1970's within
the contexts of dissatisfaction with the approach of modern medicine to
12
caring for the terminal p atien t. . . a growing willingness of society to talk

about death and dying, and a sober realization of the rising cost of health
care. (p. xii)
Hospice care was designed and is currently practiced in the United States with a
focus on pain and symptom management of the terminal patient in the patient's
home environment or in specially designated hospice units within acute care
hospitals. Hospice care seeks to enhance the patient’s quality of life and the
psychosocial needs of the patient and family—a palliative focus (Mor & Masterson-
Allen, 1987).
In order to validate the effectiveness of hospice in cost reduction and
improved patient quality of life, the federal government initiated in 1981 a national
study of hospice care versus conventional terminal care. This study found potential
for hospice care to reduce terminal care cost (Mor & Masterson-Allen, 1987). Sub
sequently, in 1982 the U.S. Congress enacted hospice legislation, as part of the
Tax Equity and Fiscal Responsibility Act (TEFRA), Section 122, making hospice
a reimbursable benefit under Medicare. The legislation established requirements
for utilization of hospices designed to place hospice as an adjunct service to acute
care services so that a competition for patients between acute hospitals and
hospice was not created. Primary among these regulations was the requirement
that patients be certified by a physician as having 6 months or less to live. In opting
for hospice care, a patient waives all rights to other Medicare benefits. Physicians
in this circumstance also must make an either-or care decision in certifying patients:
curative or palliative care (Mor & Masterson-Allen, 1987). These regulations
13
actually reduced lengths of stay in hospice from over 60 days prior to 1982. before
regulations were adopted, to 35-45 days after the hospice regulations were passed
(Carney, Brobst, & Bums, 1989).
While studies demonstrate that hospice care is the lowest cost alternative
for terminal care, hospice and the palliative services have not made an overall
impact on costs of terminal care as a product of low levels of utilization by terminal
patients. Current regulatory policies have produced this dilemma in part. As noted
earlier, hospice serves only 10% of terminal patients annually (Scitovsky, 1994).
Underutilization of hospice also produces an Underutilization of palliative care
throughout the terminal illness phase.
Advance directives. While hospice care is an adjunct delivery model for end-
stage care, advance directives put the patient's voice in the terminal treatment
process. Advance directives dictate what measures of care patients find accept
able and which ones they do not in terms of life saving measures in end-stage care.
Advance directives were therefore conceived as a means to involve patients in
treatment decision making at the end of life: patient decision autonomy to make
cost effective, individually appropriated treatment decisions.
The preponderance of studies on this subject compare the acuity and
volume of services received by terminal patients with and without advance direc
tives. In general, advance directives have had no effect on service utilization or
on the abatement of curative focused care. As summarized by Schneiderman et
R eproduced with permission of the copyright owner. Further reproduction prohibited w ithout permission.
14
al. (1992), the impact of advance directives on abating acute oriented curative
services during the terminal phase of illnesses is negligible: "Executing the
California Durable Power of Attorney [advance directives]. . . had no significant
positive or negative effect on a patient’s well-being, health status, medical treat
ments or medical treatment charges" (p. 601). Advance directives appear to be
executed too far in advance to have an impact when a critical medical event occurs
or too late in the treatment process to reverse regimens already begun. Advance
directives have neither altered the intent of terminal medical care nor reduced the
costs of service.
Barriers to the Realization of Improved Quality

of Life and Cost Reductions
The keys to reforming the terminal care process rests with recognizing that
barriers exist on three levels in the context in the terminal treatment process: the
patient level, the organizational or service delivery level, and the regulatory level.
Patient level barriers refer to the attitudes of patients, lay caregivers, and health
professionals toward death and dying and the awareness and acknowledgment
of a terminal prognosis. Organizational barriers include the intent of the delivery
system, its orientation in treating diseases, and the arrangement of services. Within
the arrangement of sen/ices, current models of service delivery are currently
barriers to impacting terminal care. Regulatory barriers include the regulations
which govern access to services and the fiscal policies that reimburse providers
of care for services rendered.
15
Patient-Level Characteristics
Patient-level issues that form barriers can be grouped into issues about
attitudes and awareness of death and dying, terminal illness disease stage con
siderations, and patient sociodemographic characteristics.
Attitudes and awareness of the terminal prognosis. Integrating palliative
services into the mainstream of treatment at end-stage care and affecting earlier
admissions to hospice for terminal patients will accomplish a reorientation of service
delivery but will not be realized until communications improve between health pro
viders, patients, and patients' families about the terminal prognosis.
Under the current system of terminal care, hospice services commence only
when the patient acknowledges the terminal diagnosis and not until the physician
acknowledges the patient’s awareness that he/she is dying. Advance directives,
as has been seen, do not facilitate the communication process between patient
and physician. In the medical model of care, where failure to cure a patient is
paramount to failure, acknowledgment of the inevitability of death (i.e., defeat)
becomes a difficult if not taboo subject.
At the heart of this drama is the lack of communication about the terminal
prognosis within the patient system (Glaser & Strauss, 1965). Individuals—the
patient, family, and physician—may all be aware of the terminal prognosis, but the
relevant parties hold back in discussing care options that are important as death
16
moves closer. Therefore, acknowledgment does not happen and the service
delivery process remains acutely focused.
Patients often adopt a wait-and-see attitude toward physicians and. as a
consequence, wait to respond to physician leads in discussions regarding care
decisions (Glaser & Strauss, 1965). Consequently physicians, who are largely
unskilled and untrained in the dying process, do not initiate the discussion of
alternatives to curative services, hospice, or terminality (McNeilly, 1994). Eighty
five percent of the information that physicians require in order to make diagnoses
and alternative treatment decisions is supplied to them by patients—patients who
remain silent until spoken to. This notion applies equally to the treatment process.
Given this fact, it becomes imperative that the communications between physician
and patient be open and continuous, yet the medical model of care has established
a subject/object communications style between physician and patient. The pa
tient's disease is the object of medical attention—not necessarily communications
with the patient about the disease or treatment decisions.
The communications process between physician and patient in the terminal
phase of an illness is the essential prerequisite for the patient's acknowledgment
of the dying process. In the hospice model, palliative care stresses this communi
cations process as a primary element of providing the patient care. The critical role
that acknowledgment of the terminal prognosis plays in treatment and treatment
decisions at end stage is emphasized in the majority of hospice care models. A
cornerstone of palliative care is the focus on assisting patients to work through
acknowledgment of the impending death (Makusch, 1975).
The literature indicates the importance of training in psychosocial aspects
of care for those working in the terminal setting (Strauss, 1988). As presently con
figured, the psychosocial work that is necessary to facilitate an acknowledgment
of the dying process is locked behind the referral to hospice services (McNeilly.
1994). Timely and appropriate utilization of hospice cannot be achieved without
the acknowledgment of the terminal prognosis preceding the decision to utilize
palliative care (Glaser & Strauss, 1965). This integration of services is difficult to
achieve with the dichotomies that characterize our current system of terminal care
(Starr, 1982).
Disease stage. The terminal medical care system has had a longer experi
ence with treating and understanding the disease stages of cancer than with HIV/
AIDS. Experience with treatment of cancer permits the development of end-stage
biological markers that often signal when curative services are no longer advan
tageous. These markers permit external signs to trigger the discussion about
utilization of hospice service in terminal cancer treatment. Such markers are less
well established with regard to HIV/AIDS, so that health professionals and patients
cannot as easily use disease stage as a predictor of when hospice may be an
appropriate alternative in the care process. Often in the treatment of end-stage
18
HIV/AIDS, the care process awaits these significant markers; and, as a con
sequence, hospice treatment decisions are made very close to death.
HIV/AIDS is an illness that inevitably results in death; there is no known cure
for AIDS (Emi, 1994). Active medical treatment for AIDS inevitably fails. While the
manifestation of illness may not always be uniform, death will be the universal result
(Emi, 1994). While one can make gross estimates of life span based on condition
markers, prognostication is still very difficult. As reported by Martin (1991).
the median incubation period from time of infection [HIV virus] with HIV to
diagnosis with AIDS in homosexual men is approximately 11.0 years___
Once diagnosed with one of the several opportunistic infections and/or
secondary cancers characteristic of AIDS, however, life expectancy be
comes short—approximately 18 months, (p. 32)
Martin used a descriptive topology of the HIV/AIDS continuum to present disease
stages; (a) Stage 1—well, with asymptomatic HIV disease; (b) Stage 2—acutely
ill with symptomatic HIV disease or AIDS; (c) Stage 3-chronically ill with sympto
matic H IV disease or AIDS; and (d) Stage 4—terminally ill with AIDS.
W hile disease stage models are helpful in understanding the disease phe
nomenon, HIV/AIDS does not necessarily follow an even course of decline, as
intimated by the disease trajectory concept (Fagerhaugh, Strauss, Suczek, &
Wiener, 1987; Strauss, 1984; Strauss 1988,1992). As Foley et al. (1995) pointed
out, "they [terminal AIDS patients] often come with multiple opportunistic infections.
. . . The prognosis, treatment, and recurrence of illness is variable, making it difficult
to decide when to initiate palliation [hospice services] versus intensive treatment"
(P- 20).
19
Disease stage is an important concept requiring consideration when investi
gating referral from acute settings of care to palliative settings like hospice.
However, given the unpredictability of HIV/AIDS stages and the current inability
to correlate specific conditions with appropriate timing of treatment decision,
disease stage does not represent a well enough defined prognostic concept to be
useful in determining care decisions. At the present time, used as a prognosti
cation device to shift to palliative care, disease stage is actually a barrier in the use
of palliative treatment modalities and hospice services.
Patient sociodemographics. Patient sociodemographic characteristics,
inclusive of social support, play a critical intervening role in the treatment and
patient process and decisions. In a study on the patient's role during hospitalized
illness episodes, Gordon (1966) found that patient income and ethnicity differenti
ated groups with regard to views of the illness and views of the patient role, which
are further discussed in Chapter 3.
In studies conducted by Bonham, Gochman, Burgess, and Fream (1986);
Glaser and Strauss (1965); and Gochman and Bonham (1988), the physician, the
terminal patient, nurses, social workers, family, and immediate support networks
outside of the family were identified as those most significantly involved in the
decision to move from curative modalities of care to hospice services. The inter
action amongst this group, which is covered in Chapter 3, with regard to coming
to full awareness of the terminal patient's proximity to dying was the most critical
20
aspect of the decisions about care made during the terminal phase (Glaser &
Strauss, 1965).
For the most part, however, sociodemographic characteristics are often not
a consideration in terminal care decisions. The disease and not the person with
a disease is the focus of treatment in the acute care setting. An understanding of
these characteristics and their impact on the terminal treatment process are factors
when care turns to palliation, which much more fully considers personal as well as
disease attributes in the care process.
Organizational Level Factors
Organizational level factors refer to the services which terminal patients
receive, the intent of those sen/ices, the arrangement of service providers and
institutions, and the models of care that are used to engage in treatment. For the
majority of HIV/AIDS patients, organization of services focuses on an acute care
hospital setting, even though over 60% of their care is provided in home-care or
community-based settings (Visiting Nurse Association of Los Angeles [VNA-LA],
1995). Estimates of AIDS patients and other terminal patients who die in hospitals
range from 78.7% (Kelly, Chu, & Buehler, 1993) to over 85% (McCue, 1995)
annually. The intent of hospital services, therefore, have a significant impact on
the nature of services and the type of care that terminal patients receive. Research
efforts have continued to point to the fact that hospitals are currently organized
around the notion of curing (Strauss, 1988). In addition, hospitals are also
21
organized to handle brief, acute episodes of care. In combination, the intent of
hospital services, which is the focal point of care for the majority of HIV/AIDS
patients, is diametrically opposed to the needs of terminal patients, who require
a balance between curative and palliative care rather than acute, short-term
curative services (Foley et al., 1995).
An emphasis on the organization of services rather than individual providers
is supported by the work of sociologists Freidson (1970a) and Glaser and Strauss
(1965). They believe that contexts and the interaction between people within those
contexts help establish a clearer understanding of a system intent rather than
approaches that focus on individual behaviors. Freidson suggested that a focus
on individual behaviors exclusively leads to efforts to change individuals rather than
systems and misses the intent of services being provided.
Models of Care
Hospice and home health services, developed to deal with patients at the
very end stages of a terminal illness, were modeled on empirical work and case
studies of cancer patients. A myth has been generated in decades of work with
terminal stage cancer patients that a disease trajectory, an orderly progression of
stages, can be discerned and services developed that are aligned with particular
disease stages (Corbin & Strauss, 1992).
The short average length of stay in hospices nationally, which is currently
under 30 days (McNeilly, 1994), demonstrates the absence of a neatly packaged
22
continuum of services for most terminal illness. Hospice is the last modality utilized
in terminal care; but because sen/ice providers are awaiting clear signs of the
movement to the final stage, looking for predictability when none clearly exists,
hospice and palliative care often enter the picture too late to be effective. Patients
often enter hospice too late in the treatment process to respond to the psychosocial
benefits of palliative care as well as adequate management of pain and symptoms
(McNeilly,1994).
The limited amount of time that is afforded hospice professionals as a
product of late hospice admissions, in turn, is a result of prioritization of curative
outcomes of active medical interventions that patients encountered before the
hospice admission. What is sacrificed is the true purpose of hospice care, attention
to quality of life, and patient caring. In the final analysis, hospice care is trapped
by the myth of an orderly disease trajectory that will signal providers with respect
to initiation of the terminal phase of the disease. Consequently, terminal patients
do not receive timely palliative care that could be an effective part of treatment
throughout the terminal care process.
As a product of the Lazarus Syndrome (Foley et al., 1995), HIV/AIDS chal
lenges the construction of hospice and palliative care as last stage modalities
(treatment options) as is now the case under the medical model. The Lazarus
Syndrome refers to the trajectory of end-stage AIDS with its ebb and flow of
deterioration and improved functioning. HIV/AIDS does not neatly fit into a
trajectory model of care; consequently, the arrangement of services for HIV/AIDS
23
need to be reconceived. The nature of AIDS requires a mixing of treatment
orientations, palliative and curative care to be utilized throughout the terminal phase
of care. Attention to the disease and the person share equally with medical and
psychosocial considerations in the treatment process. Rather than hospice being
an ancillary modality in the arsenal of the medical model of care, palliation and
psychosocial need to be integrated into end-stage care throughout the treatment
process (Anderson & MacElveen-Hoehn, 1988; Foley et al., 1995).
Regulatory Level Issues
Both the regulations that dictate hospice utilization and the fiscal policies
which provide compensation for provider services were designed to assure that
terminal care would not compete with existing services. Hospice care, as deline
ated above, was conceived to be an adjunct to acute medical services—a phase
in the overall treatment of terminal illness (Mor, 1987). Beyond the 6-month re
quirement for a terminal prognosis and foregoing any curative services, patients
must designate a primary care physician for care and forego any further Medicare
benefits. As a result, hospice becomes their caregiver of last resort once death
is acknowledged. In essence, not only do these decisions require that a patient
become aware of the impending loss of life, but also the reward for such acknowl
edgment is the loss of her/his treating physician and loss of control in the direction
of care. These realities fly in the face of the intent of hospice care to give the
24
patient autonomy in care-related decisions and support for the pervasive psycho
logical issues that are present in the terminal phase of a disease.
Regulations governing hospice have so amplified the differences between
curative care and palliative care that choice of hospice care is extremely limited.
While not aiming to create two competing systems of care, hospice regulations
have preserved the dichotomy between the purely medical model of terminal treat
ment and the hospice model, resulting in the reluctance of providers and patients
to select hospice care (Scanlan, 1994).
Reimbursement for hospice services tends to exclude rather than include
the utilization of hospice and palliative care in the end-stage care of patients.
Reimbursement, as conceived today, inhibits patients' access to psychosocial serv
ices until hospice has been selected. Treating physicians are forced, upon
certification of a prognosis of 6 months to live for a patient, which is the key to a
hospice referral, to give up payment for care and control of their patient’s treatment.
The hospice physician assumes responsibility for patient care and receives
reimbursement for sen/ices. Both the loss of control over care and lost income to
attending physicians have been noted as barriers impacting hospice utilization
(McNeilly, 1994).
At the heart of the reimbursement issue, however, are the provider
exclusions—services which are not reimbursable until hospice services are provided
for. Key among these excluded services are visits by medical social workers (VNA-
LA, 1995). A key focus of terminal patient care should be on the psychosocial
25
issues that surround dying and death as well as on the physiological aspects of
dying. Social work as a profession, its foundation in the psychosocial casework
model, could be a critical component in developing and maintaining the palliative
focus during the entire end-stage care process.
Relevance of the Study to Social Work
Social work in health care has always served as the profession bridging the
needs of patients with the other health care professionals. Nowhere in the current
health care arena is this bridge between patients' needs and services more crucial
than in the end-stage care process. Given the ecological perspective at the core
of social work practice and the profession’s dedication to vulnerable clients,
development of the psychosocial medical model of care for end-stage treatment
should in large measure be heavily engaged in by the profession of social work.
It is in the orientation of social work, with its focus on the whole person, working
with nursing and other health care professionals, that the blending of active
treatment and palliative concerns can be achieved.
The model of care being evaluated in this study requires that health pro
fessionals be trained in the bio-psychosocial approach to the care of terminal pa
tients. Along with hospice nursing, no other profession has as much at stake in
proving the effectiveness of a blended model of care for terminal patients than
social work.
26
The Problem Restated
At the confluence of organization of services, acknowledgment of the
terminal prognosis, and the regulations and reimbursement that govern terminal
care, there exists a delivery system where lower costs of care and improved quality
of life for terminal patients cannot possibly be achieved within current models of
care. The earlier use of palliative care; improved communications between health
professionals, patients, and patients’ families; and psychosocial attention to patient
needs are discouraged under the current system until the very final days of life.
Reductions in cost of end-stage care and improved quality of life for terminal pa
tients are contingent upon a modei of care that provides continuity of sen/ices,
curative and palliative, throughout the entire terminal phase of an illness.
The model being evaluated in this study challenges the assumptions of
dichotomy of services that drive current delivery of end-stage services by blending
the palliative care philosophy with the core philosophy of medical acute care for
the terminal patient. As has been stated, the nature of HIV/AIDS requires that we
reconceptualize end-stage care. Current models of care have not proven to reduce
costs in terminal care and, in fact, make current end-stage treatment costs of
HIV/AIDS remain as expensive as cancer end-stage care.
27
CHAPTER 2
THE HISTORICAL AND SOCIOLOGICAL ROOTS OF THE
CURRENT TERMINAL CARE PROBLEM
If one were to draw a cartoon of the American health care system,

it would look something like this: a huge unwieldy creature with several
highly sophisticated and complex appendages tenuously attached to a soft
and clumsy body. The appendages are the high-technology specialities,
such as organ transplants . . . which operate almost independently of the
ill-coordinated main body of primary care. What is entirely missing is a
neurological network to coordinate the activities of the assorted components
of the system. (Goston, 1990, p. 35)
The medical model of treatment, focused on cure and acute episodic serv
ices, sustains the dichotomy between active and palliative treatment The following
discussion includes a history of how the medical model became dominant and the
emergence of palliative care services in the United States in response to growing
compromises in patient quality of life resulting from the medical model as it has
been applied to terminal care.
Emergence and Dominance of the Medical Model of

Care
Terminal care in the United States can be divided into two unequal systems
of care: curative and palliative. The current system of care for terminal patients
is oriented toward an acute care medical approach to treatment, which focuses on
cure and attempts to identify clusters of symptoms causally related to establish the
28
etiology, course, and treatment of a particular entity (the disease) (Mechanic,
1976). Those who wish to reform terminal care suggest that in the medical model
the patient's voice, patient work and effort (Strauss, 1984), and patient psychoso
cial issues are missing considerations in treatment and care. These considerations
are the cornerstones of palliative care which, for the most part, is practiced almost
exclusively in hospice settings.
Palliative treatment has become a last resort modality in the arsenal of the
acute care approach to the treatment of dying patients. This can best be under
stood by first discussing the history of the development of the medical model of
care in the United States. In 1835 Joseph Bigelow, as cited by W eir (1989),
declared that "the unbiased opinion of most medical men of sound judgement and
long experience was that the amount of death and disaster in the world would be
less, if all disease were left to itself (p. 41). The nature of medical care in this
country at the beginning of the 19th century was that medical science and medical
practitioners tended to the care and comforting of the sick and dying. There was
simply no choice but to leave disease and death to themselves. Hospitals were
constructed as places to house "exiled" human wreckage and places where people
went to be cared for and not cured (Starr, 1982). In the early 19th century critical
illness remained in the home as critically ill people struggled to continue living
(Weir, 1989). Weir went on to say
that hospitals didn’t offer effective alternatives to home care for critically ill
patients. Hospitals, after all, were built to house and care for seamen,
29
strangers, or indigents . . . hospitals were considered to be places where

one was more likely to get sick than well. (p. 14)
For most of the early history of medicine, caring and not cure was the issue: and
practitioners mainly functioned to sustain persons in distress, to alleviate pain if
they could, and to provide hope (Mechanic, 1976).
Technology, the developments of techniques and the application of science
to the caring art of medicine, began to emerge in the 19th century and rapidly
changed the profile of medicine. Two advances in medical treatment, both tech
nological advances, characterized the shift in medicine during the 19th century from
a caring art to a curing science. As described by Starr (1982), the first crude
stethoscope was introduced allowing physicians to penetrate into the living: "As
is often said, doctors previously observed patients; now they examined them. And
in a further critical step [medicine] began to evaluate the effectiveness of thera
peutic techniques statistically" (p. 54). The second technological advance, which
again replaced the physician's observation of patients with an invasive gaze, was
the development of the x-ray, as pointed out by W eir (1989): T h e visualization of
physiological functions has traditionally been carried out by a physician's trained
e y e . . . supplemented by X-Ray (discovered in 1895 by Wilhem Roentgen). . . the
cathode rays could reveal the skeleton within its covering of flesh . . . " (p. 56).
This movement of advances in technology became to be known as the age
of the technological imperative (Strauss, 1988; Strauss, Fagerhaugh, Suczek, &
Wiener, 1985; Weir, 1989). This imperative created a focus on the diagnosis and
30
treatment of disease and inevitably the desire and hope for successful treatment
and cure. Even more than treatment as pointed out by Weir, the technological im
perative demands that if a technology exists, even if it is not yet proven to be totally
effective in treating disease, medicine must try to conquer disease by using it. The
technological imperative in medicine is a core value that declares "that if we can.
we must. . . " (Weir, 1989, p. 31).
The advance in technology and the curative focus in care have led medical
sociologists like Thomas McKeown (1971) to declare the emerging form of medical
practice in the 19th century (and still prevalent today) as the engineering approach
to care:
Given the traditional form of doctor-patient interaction [care versus

cure], it was inevitable that doctors would strive to get better and better at
intervening in their patients' illnesses. . . . When doctors drew from the
emerging biological science of the nineteenth century, they chose . . .
science of the organized individual. . . this is the historical foundation of the
engineering approach. . . . In medicine this theoretical foundation lent
support to the view that it was the doctor's role to intervene chemically [by
drugs] or physically [by surgery] in order to restore [cure] the patient's dis
ordered system or systems to normal, (p. 36)
While medicine was entering the era of medical science and the "curative
belief," hospitals and care received in those institutions were changing on a parallel
course. In the 19th century, hospitals begin to move from hopeless patient
institutions to the embodiment of the advances being made in technologies and
the curative approach to treatment (not care).
X-ray technology not only altered the focus of medical care in the United
States, but it also changed forever the nature of hospitals and hospital care. Early
31
machines, too bulky and costly to be located in individual doctors' offices, were
collectively purchased and centrally housed in hospitals (Hoefler. 1994): "these
windows on the body drew middle-class and upper-class families out of their
domiciles and into the hospital for the first time" (p. 69).
As a product of the new technology, hospitals made a shift to the institutions
housing the technological imperative of the new science of medicine. Hospitals
became places of active surgical and medical treatment; and as both Hoefler
(1994) and Starr (1982) pointed out, many hospitals began to limit care and service
to curable, acute episodes of illness in order to alter earlier societal views that
hospitals were places to die. As hospitals began to grow not only in number but
in size to accommodate the growing forms of technology, they came to be known
as physicians' workshops (Starr, 1982). It was inevitable that the formalization of
this relationship would occur in the form of both sophisticated medical practice and
formal medical education.
Based on a critique of medical education in 1910, Abraham Flexner, in the
Flexner Report of 1910 (cited in Ebert, 1977), extolled the virtues of the Johns
Hopkins model of medical education. The Johns Hopkins University Medical
School and Hospital were affiliated, both intellectually and physically; and medical
training was conducted as a continuum from classroom to clinical experience under
the auspices of the university. This model, which came to be known as the
"Flexner Model," 171), is the model of training in use today with classroom phases,
32
clinical work, internship training, and the potential for post-graduate residence
training.
The synergy created by the merging of medical training with academic le
gitimacy, housed in institutions, which focused on cure and which could bring
together many physicians simultaneously, set in motion by the early 20th century
the rapid development and legitimacy of the curative model of medical practice.
The manifestation of this synergistic relationship between hospitals and physicians
was an interactive process of technological advances, creating the need for more
sophistication in training of physicians and specialization in specific uses of new
technologies. The specialization of practitioners created the demand for more
sophisticated technologies and procedures. One consequence of increasing
knowledge and technological potential was the growth of specialization and frag
mentation in delivery of services in all modem medical care systems (Mechanic.
1976). As described by Goston (1990), Mechanic (1976), Starr (1982), and Strauss
(1984), hospitals and the medical system moved, over the course of the first half
of the 20th century, toward bureaucracy in organizational temperament and
practices. As posed by Veatch (1989), "these bureaucratic organizations were
engaged in a struggle against death itself. . . mobilizing technology in an all-out
war against it W e are being forced to ask the question, Is death moral in a
technological age?" (p. 3).
With the successes of technological advances in health care and the
conquering of many diseases, the nature of illness was also changing during the
33
19th and 20th centuries. While hospitals and physicians were focusing on acute
episodes of care and battling illness and death, critical illnesses became chronic
diseases—long-term illnesses that cannot be cured but must be managed (Strauss
et al., 1985). Strauss et al. described this management process in cyclic fashion:
Chronic illnesses are uncertain, their phases unpredictable. . . and episodic

. . . requiring acute care and large palliative efforts [relief from pain.
dizziness, and nausea] The cycle of chronic illness [care] goes through
the hospital, then to the clinic or doctor’s office, a return home, a trip back
to the hospital, and home again, (pp. 14-15)
Hospitals, as noted, have evolved into acute care, curative institutions that
see patients during the acute phases of chronic illness (Fagerhaugh et al., 1987).
It is estimated that due to the chronic nature of disease today, i.e., death lingering
in nature and associated with chronic conditions, is responsible for 87% of the
deaths in the United States annually (Veatch, 1989). In research conducted
regarding time of diagnosis to death, Veatch indicated that approximately half of
the population of individuals who die in any given year die of an illness diagnosed
at least 29 months earlier.
This misalignment in the nature and focus of services offered by medical
institutions today and the needs of terminal patients account for much of the highest
cost and low quality of life of many dying patients. As Strauss et al. (1985) pointed
out, health care today, which is primarily dominated by hospital organizations, is
machine work (technological work), while patients require machine work as well
as comfort work, sentimental work, and articulation work. As delineated by Strauss
et al., comfort, sentimental, and articulation work refer to the palliative intent of
34
services—a focus on the biological as well the psychosocial requirements of
patients. Comfort work means an attention to the dying patient's physical
environment; sentimental work means an attention to the patient's life memories:
and articulation work means helping patients to voice their concerns about
treatment and their fate. The ultimate impact of this misalignment has been the
development of palliative forms of treatment for dying patients housed in hospice
programs. Hospice has been developed in response to meeting the needs of dying
patients, during the terminal phase of their illness, whose requirements encompass
more than technological machine work.
Palliative Orientation and Hospice Care:

Overview and Service Intent
As delineated by Mor and Masterson-Allen (1987),
hospice care emerged in the United States during the early 1970's within
a context of dissatisfaction with the approach of modern medicine to caring
for the terminal patient, a growing willingness of society to talk about death
and dying, and a sober realization of the rising cost of health care. (p. xii)
Hospice care was designed for and is currently practiced with a focus on pain and
symptom management of the terminal patient. Care is delivered within the context
of patient quality of life concerns and the psychosocial needs of the patient and
family (Mor & Masterson-Allen, 1987). As Dr. Cicely Saunders, Director of St.
Christopher’s Hospice in London, stated in discussion with W eir (1989):
Hospice wasn't conceived as a place where patients went when nothing

more could be done for critically ill, terminal patients [once life-sustaining
treatment was stopped]. Hospice was devoted to better pain control and
symptom management for patients who could not be cured. . . . St.
35
Christopher [hospice care] was founded on the idea that patients in the
terminal phase of life should be given palliative care to enhance their living,
(p. 9)
Hospice emphasizes the caring aspects of terminal care, a role that was exclusively
the province of hospitals before the 19th century. In looking at the history and
evolution of the medical-curative model of care for dying patients, it can be said
that we have truly come full circle in the last century and a half. Hospitals, once
the places where care and comfort for dying patients was the main focus, have
turned to the centerpiece of a curative system of care and new institutions—the
hospices—have been developed to reinsert the caring aspects of terminal care into
the overall system of medical services to dying patients. "In its current usage, the
term hospice represents . . . a philosophy and practice . . . that differs from
conventional care" (Weir, 1989, p. 50). From a philosophical perspective (intent
of the system), Weir outlined eight hospice core values:
(1) Knowledge about the condition of the patient is critical to the terminal
phase of care; (2) maximizing quality of life is better than prolonging life with
regard to quality; (3) medical technology should be adapted to terminal care
rather than to place terminal care beyond the boundary of medical
technology; (4) terminal care should be coordinated instead of fragmented
services; (5) the final days of life should be lived among friends and the
family as opposed to strangers; (6) caring for patients in isolation is not
preferable to inclusion of the patients’ families and friends; (7) pain and
symptom relief is better dealt with through effective medical management
rather than curative alternatives that worry about drug addiction or relief of
pain through passive euthanasia, withdrawing or withholding of treatment;
and (8) it is better to go through the terminal phase of life without worry over
medical costs that may bankrupt the family, (pp. 51 -54)
According to Mor and Masterson-Allen (1987), from a practice perspective, hospice
care focuses on
36
(1) the patient and patient support system as the client; (2) an interdisci
plinary team composed of physician, nurse, social worker, volunteer, and
spiritual specialist comprise the care givers that staff hospices:
(3) intervention care focuses on the active management of physical and
psychological symptoms; (4) continuity of care is provided across service
systems inclusive of inpatient care; and (5) services are provided 24 hours
a day, seven days a week. (p. 4)
The focus of hospice services with the palliative intent delineated here varies
significantly from the intent and focus of the prevailing model—medical curative
care—received by terminal patients.
Within this historical context and explication of the intent and focus of
palliative services and hospice care, we can now better understand the impact that
modem health care service systems have on terminal patients and the barriers that
currently exist with regard to linking both acute medical treatment for terminal
patients and palliative care. In the final analysis, it is the organization of medical
care for terminal patients, the orientation of services, and the arrangement of
service, under the predominant curative medical model, that pose a significant
barrier to access to palliative treatment and hospice services.
37
CHAPTER 3
LITERATURE REVIEW AND THEORETICAL FRAMEWORK
Appropriate and timely utilization of hospice services and palliative care
during the terminal phase of HIV/AIDS were the key dependent variables in this
research effort. The barriers discussed in Chapter 1 are reorganized into two
complex constructs: organizational level factors and patient level factors (Figure
1). These two constructs are used to frame the literature review.
PATIENT CONSTRUCTS ORGANIZATIONAL CONSTRUCTS

• Awareness • Intent
• Acknowledgment • Arrangement
• Role • Models
• Demographics • Regulations
• Disease Stage • Costs
• Quality of Life • Hospice referral
Figure 1 Critical constructs in the referral to hospice
The patient construct includes patient awareness and acknowledgment of
the terminal prognosis, the patient's role as it is socially defined during illness,
patient sociodemographics that have a bearing on utilization decisions during
terminal illness, the terminal illness disease stage, the conditions that have a
bearing on terminal treatment decisions, and quality of life. The organizational
38
construct is made up of the intent (orientation and focus) of the services provided
to terminal patients, the arrangement or relationship between service providers in
caring for terminal patients, the models of care used to deliver terminal care
services, and the regulatory and fiscal policies that govern access and reimburse
ment for services. The dependent variable, hospice referral, is seen in traditional
evaluations of terminal care services as the key variable impacting both patients'
quality of life and the costs of the terminal care episode.
should be viewed as a process model of flow of patients through the health
care system with the patient as input into the system, the organization of services
as thruput, and hospice referral and utilization of palliative care as output. This
model is intended, therefore, to reflect the current flow of service provision. The
flow then provides a reality-based means of exploring the literature with regard to
terminal HIV/AIDS care. The major constructs form the major sections of the
literature review, and each concept listed under that construct is a subarea to be
investigated.
The Terminal Patient
Terminal patients bring into the system of care themselves with their fears
and concerns about death and dying. The convergence of the terminal patient's
concerns and roles are most clearly manifested at the point in the terminal disease
process where patients, encountering lay caregivers and professional care
39
providers must confront acknowledgment of the immediacy of their own death and
resultant treatment decisions.
In reviewing the literature and research on awareness of death and dying
and acknowledgment of the terminal prognosis, it is helpful first to have an overview
of the complete context of the issues that have been identified throughout the
literature with regard to awareness and acknowledgment as well as the communi
cations process about acknowledgment between patient and caregivers. This brief
section is followed by discussions of the theoretical foundations of awareness of
death and dying, the theoretical foundations of the terminal prognosis acknowledg
ment, and a theoretical discussion of the patient's role in this end-stage process.
These discussions, which are important in creating an understanding of the
foundations of patient's and the patient care system's awareness and acknowledg
ment about dying, is followed by empirical work that has been done with regard to
acknowledgment of the terminal prognosis and critical communications issues
around death and dying reflected in research on advance directives. The final
sections of the patient construct include brief discussions of patient socio
demographics, disease stage, and quality of life.
Overview of Awareness. Acknowledgment.

and Communications About Dying
Rrst, before a patient would consider enrollment in a terminal care

program, s/he would have to consider him/herself eligible for such services.
Stated differently, a patient would not think about the use of hospice
services i f . . . s/he did not perceive they were terminally ill. . . The only
patient variable which has a significant effect on the probability of hospice
40
use is the patient's death acknowledgment. Given that the patient’s death
acknowledgment is quite closely associated with the physician's . . .
disclosure of the terminal prognosis to him/her [the patient]. (Prigerson.
1991, pp. 88, 91)
The above statements, based on research regarding the determinants of
hospice utilization, make very clear the pivotal nature of acknowledgment and
communication between patient and physician on the hospice referral in terminal
care. This research establishes the critical nature of communications in the
terminal patient system of care. The patient system consists of the patient/
physician dyad and the support of patient caregivers. Given that one of the criteria
for admission to hospice, and therefore access to palliative care, is the patient"s
acknowledgment that he/she has 6 months or less to live (Martin, 1991; Prigerson,
1991; Seale, 1991), the communications process concerning prognosis acknowl
edgment is of critical importance in the study of hospice referrals.
Prigerson's (1991) study was conducted among 76 physicians, 76 caregiv
ers, and 76 patients. This triad came from northern and southern California hos
pitals and were interviewed by Prigerson with regard to determinants of hospice
utilization in terminally ill patients. The variables considered were treatment prefer
ences, physician fears of malpractice, caregivers' perceptions of patient treatment
preferences, past experiences with dying, and patients' death acknowledgment.
Death acknowledgment was defined as a patient's rating of his/her current
condition as seriously ill and terminal (acknowledgment) or as seriously ill but not
terminal (non-acknowledgment). The only patient level variable that was significant
41
in determining hospice utilization was the acknowledgment of impending death (p
= .02). The acknowledgment by the patient of the terminal prognosis, according
to Prigerson, establishes a communication system in which patient acknowledg
ment triggers the physician's discussion and validation of the patient's perception.
As reported by Prigerson:
the findings indicate that the doctor's disclosure of the terminal prognosis
has a very strong positive effect on the patient’s receipt of hospice services.
. . . The odds that the patient will be admitted to a hospice program are
multiplied by 7.1 if the physician tells the patient [validates acknowledgment]
that s/he is dying, (p. 99)
The modem tragedy of lack of acknowledgment communications results in
one out of five patients receiving hospice care with only 10 days left to live
(Solomon, 1994). Commonly, patients report having to guess about their terminal
prognosis without being informed about the reality of their condition by anyone
(Seale, 1991).
The avoidance of death is manifest everywhere in the behavior of health
care professionals. Studies reveal that nurses take longer to answer bedside calls
of terminally ill patients. Other studies show that physicians avoid patients alto
gether once they begin to die. This behavior has perhaps been explained by the
fact that medical professionals tend to define dying as deviant and see themselves
as purveyors of hope and not of bad news (Hoefler, 1994; Kastenbaum &
Aisenberg, 1972).
While failure of the medical system to ultimately forestall death is one
explanation for lack of communications about the prognosis, theoreticians and
42
researchers who write about and study death and dying suggest that the commu
nication of the terminal prognosis and acknowledgment of that prognosis by the
patient’s system has as much to do with the impact of the psychosocial/emotional
aspects of dying on both individual patients well as professional and lay caregivers.
It is this breakdown in communications, or reluctance to acknowledge the inevitable
in the terminal phase of illness, that perpetuates the curative focus of the
medicalization of terminal care and acts as a barrier to the referral to hospice and
hospice services.
Awareness
Theories of death and dying that assist in an understanding of the barriers
to hospice referral can be divided into those that deal with individuals' interior mon
ologues about death and dying and the social interaction theories that deal with
the dialogues between participants in the death and dying process. Role theories
about the actors engaged in the death and dying process also play a critical part
in the awareness process, but these will be discussed in a separate section.
The interior monologue theories are best understood as those that deal with
individual patient levels of denial and the processes of confronting the terminal di
agnosis, as developed by Kubler-Ross (1969) and Weisman (1972). Researchers
Glaser and Strauss (1965, 1968) and Sudnow (1967) have developed models
based on empirical research on the awareness contexts of the terminal prognosis.
These can best be understood as exterior dialogue acknowledgment models.
43
These theoretical models are critical because they influence care decisions and
service utilization.
Individual awareness of death. Kubler-Ross’s (1969) five stages of terminal
illness acceptance have become the most well known model describing the
individual patient's struggle with acceptance of a terminal prognosis. The stages
of the model, which have been referred to as the "stages of dying." are as follows:
1. Denial, which is a patient's denial of the terminal prognosis (the
inevitability of death) upon first learning of the diagnosis.
2. Rage and anger, characterized by a patient being furious about having
been the "one" who must die. Anger is openly directed at an external force, e.g.,
God.
3. Bargaining—while there is an acceptance of death in this stage, patients
bargain for more time, again with an external force.
4. Depression—the idea of death is omnipresent and all past life losses are
reviewed by patients.
5. Acceptance, which is the patient recognizing that the time of death is
very near.
These stages were developed through decades of work by Dr. Kubler-Ross from
interviewing and observing terminal patients in both hospital and home settings.
Of key importance in the Kubler-Ross model of acceptance of the terminal
prognosis is that the patient works through these stages, whether assisted by
44
anyone or alone (Rosel, 1978). While the outcome of the process is that the patient
arrives at a sense of awareness, this does not necessarily mean acknowledgment
of the prognosis to anyone in the patient's system of care. For acknowledgment
to be achieved, a climate of support and facilitation (active listening and acceptance
of the patient) are required by caregivers and the patient’s formal support system
(Kubler-Ross, 1987; Makusch, 1975). As Kubler-Ross suggested, dying "AIDS
patients can reach the stage of acceptance. . . if they receive and give themselves
enough permission to express their anguish . . . [and] if they have enough of a
support system with people who simply love and accept them . . (pp. 10-11).
As both Makusch (1975) and Rosel (1978) pointed out, the care system for
terminal patients needs to assist dying patients in the stages of acceptance, yet
this is difficult since neither patients nor providers have been socialized to this
process. Therefore, the social-psychological problems of coping [acceptance of
dying] are socially determined without a support system [for the dying patient]"
(Rosel, 1978, p. 54). In essence, if the health care system is not geared to listen
and assist the dying patient to move through the stages of denial and acceptance,
while the patient works through this emotional territory unassisted, acknowledgment
of the terminal prognosis may never reach the patient's care system. This situation
inevitably leads to late hospice admissions and the extreme costs at the end of life
as the curative intent of the system of care marches forever onward.
Weisman (1972), like Kubler-Ross, has developed a stage-like progressive
model of the emotional (psychosocial) process that terminal patients go through
45
in achieving awareness of their terminal prognosis. But unlike Kubler-Ross.
Weisman focused his attention on the levels of denial and knowledge a patient
gains through three phases of the terminal disease trajectory. The terminal trajec
tory for Weisman, which is defined from the patient's perspective and not the
medical system, can be defined as three psychosocial phases: (a) primary
recognition of the disease—the time period from patient awareness that something
is wrong to formal diagnosis; (b) established disease—patient reactions from the
initial diagnosis to the onset of the terminal phase-decline; and (c) final decline, or
patient's recognition of unmistakable and progressive decline (pp. 98-99).
Key to Weisman’s conceptualization of the dying process are the psychoso
cial events (interior monologues) of patients as they move through these terminal
psychosocial disease stages. Weisman characterized these monologues as
moving from denial to acceptance mediated by what he called "middle knowledge."
Middle knowledge is the transition from denial of the prognosis or an event that
validates the terminal diagnosis to awareness of the terminal prognosis. "As a
rule, middle knowledge tends to occur at serious transition points, such as when
a patient begins the descent to death, undergoes a setback, or finds obvious
equivocation among the people on whom he depends" (p. 65). This middle knowl
edge works in concert for the patient with levels of denial operating at each of the
three stages of the terminal psychosocial trajectory.
For Weisman, then, there were three stages of the terminal trajectory with
3 times that the patient uses denial and 3 times that the denial moves from middle
46
knowledge to acceptance of the terminal prognosis. Critical here is that patients,
as in the Kubler-Ross model, will move through the phases of denial and accept
ance on their own. Weisman, however, went a step further in declaring that an
"appropriate patient death" is when facilitation and communication with the patient
are present during the terminal trajectory (Weisman, 1988). "There are four
principal and characteristic signs of appropriate death: awareness, acceptance,
propriety, and timeliness" (p. 67). These characteristics, as explicated by Weisman
are
the patient’s awareness that psychosocial needs and nursing supersede the
continuance of curative care; patient acceptance is achieved once the
awareness of impending death is reached and the patient’s struggle is in
coping with death; propriety is the patient controlling the environment of
her/his death; timeliness refers to the patient's resolution of emotional
issues, (pp. 68-69)
Weisman's theory of the appropriate death is focused on the patient's
resolution and acceptance of the terminal diagnosis but does raise the issues of
how an appropriate death is achieved by discussing the necessary and sufficient
conditions that must be present in the patient's system of care and support.
According to Weisman (1988), the qualities in the patient system that must be
present to facilitate an appropriate death are as follows:
Care, focused on pain management and symptom relief, must be the intent
of care givers; the patient must be the center of decisions; care givers must
attend to the emotional aspects of care; communications between care
givers and patients must be continuous and directed at listening to the
patient's needs; continuity and closure, focus on life review and celebration
of a life lived, must be a primary modality in patient support and care. (pp.
71-74)
47
While Weisman's theory extends beyond the personal struggle to include
the support and focus needed in the patient care system, it does not bridge how
the awareness of death is acknowledged in the patient’s care and support system.
As with the Kubler-Ross’s theory, the work of awareness is left to the terminal
patient and it is assumed that a supportive care system will create an acknowledg
ment of the terminal prognosis.
Acknowledgment of Dying
The acknowledgment process focuses on the patient’s external declaration
and recognition to caregivers that death is imminent. Once the patient makes this
declaration, the system of caregiving is ready to suggest and facilitate alternate
forms of care and disease management other than curative services. The paradox
in this seemingly simplistic dynamic is that patients wait for physicians to begin the
process, while physicians and other caregivers take their cues of what can be
discussed from the patient. In the final analysis, acknowledgment rarely happens
in a timely fashion because each player awaits each other’s initiation. The work
of Glaser and Strauss (1965,1968) and Sudnow (1967) is distinguished from the
interior monologue theories discussed above by their focus on acknowledgment
of death and their focus on those involved in the terminal illness, the patient, and
those who surround the patient. Their concepts were developed from decades of
observations made in acute care hospitals in studying hospital staffs and dying
patients.
48
The work of Glaser and Strauss led to the development of the quantitative
methodology known as "grounded theory." Grounded theory is an inductive proc
ess that builds theory from observations. In a sense, the focus of these theories
is on the acknowledgment of the terminal prognosis by the patient’s caregiving and
support system—exterior dialogues as opposed to interior monologues. According
to Glaser and Strauss (1965), "what each interacting person knows of the patient’s
defined status, along with his recognition of the other’s awareness of his own
definition—the total picture as a sociologist might construct it—we shall call an
awareness context" (p. 10). The Glaser and Strauss conceptualization of the
acknowledgment process is inclusive of the individual theories discussed earlier
and the recognition that acknowledgment of the terminal prognosis is a social act,
requiring the interaction of the individual with the system in openly acknowledging
the prognosis so that action can be initiated. Social awareness contexts, formal
acknowledgment of the terminal prognosis, are characterized as four types by
Glaser and Strauss: closed awareness, suspected awareness, mutual pretense
awareness, and open awareness. Closed awareness contexts are those where
the patient is not aware of the terminal diagnosis and the physician and profes
sional care staff maintain the patient's lack of awareness through continued cura
tive care or by explaining any care provided as an attempt at cure. Suspected
awareness comes as the patient’s condition continues to deteriorate and informa
tion and cues are picked up by him/her. While the patient is hunting for clues and
becoming aware of the impending inevitability of death, the care staff and physician
49
do not discuss information with the patient, believing that "even if a patient does
not talk about his impeding death . . . nevertheless he recognizes that he is dying"
(Glaser & Strauss, 1965, p. 50). Mutual pretense awareness can be characterized
as everyone in the care system knowing but no one speaking to the issue. The
mutual pretense awareness phase should be seen as the "Catch-22" of the
acknowledgment of the terminal prognosis. While everyone knows, no one
engages in acknowledgment until the patient verbally asks; however, the patient,
as discussed earlier, is waiting to follow the lead of the physician and the
professional staff: "A prime structural condition in the resistance and maintenance
of mutual pretense is that unless the patient initiates conversation about his
impending death, no staff member is required to talk about it with him" (Glaser &
Strauss, 1965, p. 67).
The awareness framework enables us to operationalize the individual aware
ness frameworks of death and dying to better understand the health care system's
singular focus on curative care. The acknowledgment of the terminal prognosis
is the critical signaling event that allows the patient care system to shift from
curative to palliative intent. Until the acknowledgment is verbalized, the intent of
care, whether a reality or based on pretense, continues on a course of "doing
something" care (Glaser & Strauss, 1965).
The model developed by Glaser and Strauss suggests that the patient's
awareness and then acknowledgment of the terminal prognosis is the critical barrier
in the system that impedes the taking of appropriate treatment actions, which may
50
be the introduction of palliative intent and the hospice referral. It is important to
understand that in the theory espoused by Glaser and Strauss, even though the
physician, other professional care providers, and significant others may be aware
of the terminal prognosis, there is no obligation to acknowledge it unless the patient
initiates the conversation (Glaser & Strauss, 1965).
The irony of this acknowledgment process is that the current system of
terminal care, singularly focused on the physiological aspects of the patient's con
dition, does not offer facilitation to the patient so that acknowledgment can be
achieved. While the focus of the awareness context is the patient, the current care
system is poised on the lead of the patient's physician to initiate the acknowl
edgment process. While the most direct means of moving to full awareness of the
terminal diagnosis would then be the physician's declaration of the terminal
condition to the patient, Glaser and Strauss (1965) pointed out that the physician
awaits the patient's initiation of the acknowledgment conversation: "American
physicians very infrequently make such announcements. Much more frequently
they drop gentle, oblique references, relying on the patient’s willingness to read
those references correctly" (p. 22). In the final analysis, in the research and theory
developed by Glaser and Strauss, the acknowledgment process moves very
slowly—almost to the point where, as we have seen, referrals to palliative services
may occur within days of death.
As noted in later research efforts by Glaser and Strauss (1968), the open
awareness context requiring the patient's verbalization of the terminal prognosis
51
is further exacerbated by the fact that the terminal phase of care does not occur
in a single locus and certainly not entirely in the acute care hospital. It is the
hospital context where the patient and the physician are most likely to come to
gether. As noted in the research on venues of care and treatment for terminal pa
tients between home/community care and hospital care, the average experience
during the last year of life in the acute hospital medical setting is approximately 40
days of care. This translates to lingering trajectories (disease stage progression)
for patients outside of the hospital setting (Glaser & Strauss, 1968). This lingering
"outside" of the medical contexts translates to discontinuity in the communications
process itself, with shifts from home or community to hospital becoming new
encounters each time they happen. The facilitation of emotional issues and work
on acknowledgment is lost in this disjunctive process.
The communications barriers that exist in hospitals with regard to acknowl
edgment of death and dying receiving considerable attention in the theoretical work
of David Sudnow (1967). For Sudnow, communications and encounters with death
and dying for patients take place with staff members lower in the hospital care
hierarchy. Nurses’ aides and housekeeping staff, as opposed to nurses and
physicians, have been observed by Sudnow to encounter patients' actual deaths
or engage in conversations about death and dying. In discussing the visibility of
death both in a temporal and structural sense, Sudnow observed in studying staff
interactions with dying patients in two acute care hospitals that departmental
structures of hospital care and hierarchies made it clear that communications about
52
dying patients and death were disjointed throughout the hospital. In fact, Sudnow
observed that the higher a care professional was in a hospital, the less likely he/
she was to actually be involved directly in the communications about death and dy
ing: "The deaths [and dying trajectories] of patients are learned of more directly
by medical and nursing staff depending in part upon their particular service location
in the hospital. .. . the higher one's position as a nurse or doctor in the . . .
[hierarchy of care], the less likely one is directly to . . . be exposed" (p. 43).
The theories developed by both Glaser and Strauss and Sudnow from their
research efforts suggest that acknowledgment of the terminal prognosis is a
product of the interaction of those engaged in the patient's terminal care. A basic
requirement of the actualization of acknowledgment is the verbalization of the
terminal prognosis by the patient system. Barriers to acknowledgment and there
fore barriers to hospice referrals and the palliative focus of care are most likely to
be produced by the lack of facilitation and support for patients in verbalizing their
awareness of their prognosis.
In his work on The Organizational Context of Dving. Makusch (1975) coined
the term transprofessional to describe the professional in the care process who
bridges the gap between a curative focus and a more caring, palliative focus. This
professional, who could conceivably facilitate the acknowledgment process, is seen
as being responsible for the gaps between curative and palliative care that are
currently claimed by no one within the terminal care process. The Makusch
conceptualization is only theoretical at this point but does highlight the
53
conceptualization of the need for a role in the terminal care system to facilitate the
acknowledgment process.
However, the Transprofessional domain is one which is not owned by any

one profession the relationship with the dying patient, the privilege of
helping the human being who is dying to work through to the stage of
acceptance and to help his or her fam ily. . . (Makusch, 1975, p. 12)
The Patient's Role
With regard to acknowledgment of the terminal prognosis being dependent
upon the patient's initiation of his/her awareness, the greatest opportunity for that
verbalization of awareness to occur is contingent on the patient's physician facili
tating the process. The physician/patient role structure, therefore, becomes a
critical context in understanding the acknowledgment process. The patient's role
in the terminal care drama is one of compliance and silence. As the system of care
suffers from dichotomization, as was pointed out in Chapter 1, the terminal patient
is also dichotomized. The patient and the patient's terminal illness are separated,
and interaction between the care system and the patient is primarily focused on
the terminal disease.
Talcott Parsons (1951) was responsible for creating the seminal work on
the dynamic process of patient/physician interaction. Parsons's model is pervasive
in medical writing and has provided the foundation for a plethora of research efforts
on the interactions between patients and physicians. Parsons made a clear
distinction between the physician and the patient, with the physician taking on the
role of medical professional with high technical competence—the applied scientist
54
in medical settings (Parsons, 1951). In contrast to the physician in the medical
setting, Parsons placed the patient in the role of the sick person: "the sick role [the
sick person] is helpless and therefore in need of help. . . the sick person is not, of
course, competent to help himself (pp. 439-440). Four characteristics of the sick
role were delineated by Parson. This role essentially relieves the patient from any
responsibility in the treatment process. The sick person is excused from any social
responsibilities or responsibilities for self care. Essentially the sick person is not
held accountable for the illness or given any control over its trajectory. In addition,
the patient is expected to hold a strong view to want to get well and to seek and
trust in competent technical help.
The sick role definition was criticized by Twaddle and Hessler (1987), who
believed that while it permeated all physician and patient interaction, it only applied
to a limited set of illnesses, especially those where recovery was possible. T h e
sick role is not as useful for incurable conditions" (p. 147). The Parsonian con
ceptualization of the sick role provides several barriers in attempting to insert the
patient’s emotional needs into the terminal phase of illness, as has been discussed
above with regard to the acknowledgment of the terminal prognosis.
The physician is characterized by Parsons (1951) as engaged in a technical
job to restore the patient's health. While Parsons acknowledged that physicians
must be aware of and carry the burden of the patient’s emotional attachments
regarding the patient's concerns for his/her health and welfare, "the primary
definition of the physician's responsibility is to do everything possible to forward
the complete, early and painless recovery of his patient" (p. 450). Parsons went
on to state that the patient’s emotional needs put a strain on the physician—one
that must be managed carefully and skillfully by the physician in the pursuit of the
prime directive of painless cure. As Gallagher (1978) posited in criticizing the
Parsonian patient model, part of the difficulty with the Parsonian framework is that
it is "medico-centric." It places the figure of the doctor at the center of health care
processes, giving strategic recognition to the implications of the fact that the doctor
attempts to ground his treatment in rational scientific knowledge.
Parsonian physician/patient role theory has become institutionalized in most
conceptualizations of the medical system. It is a pervasive aspect of the curative
model. In the terminal phase of an illness, the Parsonian model of the compliant,
uninvolved patient is a counterproductive framework. This is most disconcerting
when models of appropriate death, like the Weisman (1988) model, are dependent
on active communications and interactions between professional caregivers and
patients.
The theoretical work that has been presented sets a foundation for the
understanding of the realities of terminal care presented in the empirical work that
follows. Referrals to hospice services and the introduction of palliative measures
in the terminal phase of treatment are dependent, as has been seen, on patient
system acknowledgment of the terminal prognosis. This acknowledgment is
constrained by a social structure that is dependent on the physician and other
56
professional caregivers as primary but reluctant initiators of patient treatment
transition discussion (Prigerson, 1991).
Empirical research on patient system acknowledgment. What is apparent
in the empirical research that has been done on communications about care
transitions in the terminal phase of illness is that acknowledgments of terminal
illness decisions, if they happen at all, happen too late in the dying trajectory to
effectively introduce palliative measures of care. Studies consistently demonstrate
that patients desire to "know" about their conditions exceeds physicians’ capacities
and willingness to provide that information in a timely manner. As a consequence
of this communications misalignment, advance directives have been introduced
into the terminal care process in order to bring about prognosis acknowledgment.
Advance directives, while executed by patients as a means of directing the
care they would prefer to receive in emergency situations, will be seen to be either
executed too close to or too far away from acute care events to be effective. The
research that has been reviewed here demonstrates that in order to effect appro
priate care transitions into terminal treatment, both a communications process and
a communications facilitator need to be introduced into the terminal care system
to make an impact on introduction of palliative intent in the curative care model and
to effect transitions to palliative treatment.
The dying person is a deviant in the medical subculture. Much of the

research. . . supports this view. The dying person elicits aversive attitudes
from his audience and these attitudes often result in avoidance behaviors
on the part of physicians and nurses. (Schultz & Aderman, 1976, p. 19)
57
The comments of Schultz and Aderman were taken from a meta-analysis
on physician behaviors regarding the communication about the patient’s terminal
condition. As cited by Schultz and Aderman, the majority of studies indicated a
range of between 70% and 90% of physicians who did not tell their patients their
diagnosis. Those who did tell were found to employ euphemisms for incurable
cancer.
While a body of research indicates that more physicians than was historically
the case do communicate terminal prognoses to patients, the facts still support the
conclusion that communications with patients during the terminal phase of illness
are sporadic, come too late in the process for alternative service decisions to be
made, and are not always clear (Schultz & Aderman, 1976).
In research conducted by Carey and Posavac (1978-1979) with regard to
informing patients of their terminal diagnosis, the results clearly indicated that
physicians and other professional caregivers only favored providing patients with
limited information about the terminal prognosis. The study was conducted among
four disciplines: 45 physicians, 56 nurses, 28 chaplains, and 97 psychology stu
dents. The study was conducted at two medical centers in suburban Chicago and
focused on terminal prognosis communications behaviors and attitudes toward the
communications process among these caregiving professionals. Several findings
in this study are of critical interest in understanding acknowledgment of terminal
prognosis communications. Over 79% of the respondents in each group and 87%
of the physicians felt that patients were entitled to the "unqualified" right to know
58
the truth about their terminal condition "if they requested the information" (p. 70).
In addition, only 29% of physician respondents felt that the complete and honest
information should be given the patient without waiting for the patient to ask. Forty-
two percent of the physician respondents did feel that physicians should take the
initiative in revealing a terminal condition but qualified this answer with "but only
respond to specific questions that the patient asks" (p. 71). Similar results with
regard to the qualified advising of patients about their terminal prognosis were
reported in a study of Iowa physicians by Travis, Noyes, and Brightwell (1974), with
53% of all physicians responding affirmatively to revealing the prognosis but with
qualified and limited information.
These two studies indicated that while revealing the prognosis to patients
is acceptable in a number of instances, it was recommended that communication
be done in a limited fashion. This literature suggests, as delineated by Glaser and
Strauss (1965,1968), that the patient care system, specifically physicians, should
provide limited communications to patients while waiting for the patient to initiate
communications and acknowledgment of the terminal prognosis. These research
efforts also validated the core value of the Parsonian physician/patient role theory,
with 93% of physicians stating in the Travis et al. (1974) study that the physician
should be the one to tell the patient of the terminal condition and the terminal
prognosis.
Similar research findings with regard to the physician's role as primary
communicator were reported by Gordon (1966) and Siminoff and Fetting (1991).
59
In the latter research, 100 women with breast cancer responded to questions
regarding who should tell them about the status of their condition. As reported by
Siminoff and Fetting,
despite notions that patients are now playing a more proactive role in
directing their own health care, our study of breast cancer patients making
decisions ab o u t. . . therapy indicates that, at least for a life-threatening
illness, patients still rely heavily on their physicians to make treatment
decisions, (p. 817)
Given the predominance of the physician’s place in the communications
process and their reluctance to fully communicate the terminal prognosis, preferring
patient initiated acknowledgment, it is important to understand under what con
ditions the physician is most likely to acknowledge the terminal prognosis or
respond to the patient’s inquiries. As reported by Carey and Posavac (1978-1979).
their sample of physicians considered the factor of the patient's emotional stability
as the single most important factor in the decision to tell or not to tell patients about
their terminal condition. Emotional stability referred to the physicians' perceptions
that patients could "handle the news." While emotional stability and psychological
functioning were identified as the critical catalyst in the physician's initiation of the
prognosis acknowledgment process, only 36% of the physician respondents in this
study would consider replacing current physiological information about patients in
their medical charts with psychological data. While patient psychosocial data are
critical to physicians in determining when and if to begin the prognosis
acknowledgment process, the desire for such information was only reported by a
minority of physician study respondents.
60
In-depth Interviews with physicians about communications with patients and
their families revealed that physicians almost never openly discussed quality of life
issues with their patients and families, although they perceived the importance of
those issues and deeply cared about quality of life issues (Solomon, 1994). In an
exploratory study on the hospice decision, McNeilly (1994) also validated the
importance of patient emotional status and well-being data on the decision and
communications process with respect to the terminal prognosis and treatment de
cisions but indicated that these data were often not available to physicians or
openly requested by them.
In the final analysis, these findings suggest that the physician has the lead
role in the acknowledgment process but essentially forestalls his/her initiator role
until acknowledgment of the terminal prognosis is verbalized by the patient. Pa
tients expect that the physician will initiate communications, especially in cases with
terminal prognoses. Even when communications are initiated, information may not
be complete. This depends on the physician’s perceptions of the patient’s
emotional stability in "taking the news." More often than not, the emotional
information and quality of life data that would assist the physician in this assess
ment are not available or not requested. Apparently the process of terminal
prognosis acknowledgment depends on a weakly constructed communications sys
tem.
Another aspect of the acknowledgment process is the physician’s perception
of the patient's ability to cope with the terminal prognosis. Very often physicians
61
perceive that patients will be harmed by the news and subsequently information
is withheld. Many physicians and nurses believe that the patient, who they believe
could not take the news about poor terminal prognosis directly, will somehow
achieve awareness of the prognosis without their direct involvement (Glaser &
Strauss, 1965). This is an openly stated theme in the majority of the research that
has examined the acknowledgment process. T o begin with, physicians with
greater exposure [to terminal patients] more often felt that terminal patients realized
they were dying" (Travis et. al., 1974, p. 22). While physicians’ perceptions were
that the patient was aware of the terminal prognosis and therefore open acknowl
edgment was not required, research conducted to ascertain the accuracy of
physicians' perceptions of patients' awareness and satisfaction with sen/ices
demonstrated that in only 20% of the cases were the physicians' perceptions about
the awareness of their patients' conditions accurate (Merkel, 1984). Similar results
of the patient/physician misalignment in perceptions were demonstrated in a study
about patients' willingness to forego treatment (Tsevat et al., 1995).
The paradox in this dynamic of awaiting patient acknowledgment, as
highlighted by Glaser and Strauss (1965), is that the patients continue to receive
costly treatment while the patient care system awaits acknowledgment. As Rizzo
(1993) pointed out in researching uncertainty of care decisions by physicians, when
there is a lack of acknowledgment about prognosis or treatment decisions, the
approach most often taken by physicians is "when in doubt, do it" (p. 1452).
62
Advance directives and acknowledgment. On December 1, 1991. the
Patient Self-Determination Act became law. This act requires health care providers
to distribute information to patients concerning advance directives (Paridy, 1993).
Advance directives can be described as patients' treatment requests about heroic,
life-sustaining measures of care during emergency medical situations. In the
terminal care setting these life-sustaining measures involve most commonly
restarting a patient's heartbeat or breathing (i.e., cardio-pulmonary resuscitation).
Where a patient does not desire such heroic measures, he/she executes an
advance directive declaring that no heroic actions should be taken. Advance
directives can be seen as the initiation by the patient of the acknowledgment of the
terminal prognosis or, at the very least, the patient’s openly stated awareness of
his/her condition.
Overall, physicians do not respond to the instructions in advance directives
when making treatment decisions (Bedell & Delbanco, 1984; Crane, 1975; Emanuel
et al., 1991; Merkel 1984; Schneiderman et al., 1992). Circumstances rarely arise
in which the presence of advance directives in medical records is a significant factor
in treatment decisions (Schneiderman et al., 1992). The study by Schneiderman
et al. also reported that in comparisons of patients with advance directives and
those without them, the cost and level of care at end stage were not significantly
different between the two groups.
In research about advance directives and patient and physician perceptions
of their utility, the majority of physicians (70% of the sample) reported that living
63
wills and advance directives were a way to explore a patient’s treatment prefer
ences (Pfeiffer et al., 1994). Advance directives were perceived as the beginning
of alternative treatment discussions and acknowledgment of prognosis. Seen as
"ice breakers" or communications devices toward initiation of the acknowledgment
process, the question is raised as to how effective advance directives (living wills)
have been in achieving acknowledgment.
In research efforts to assess end-of-life communication preferences between
physicians and patients, Pfeiffer et al. (1994) questioned ambulatory 47 clinic
patients, 18 years of age or older, in eight states in the United States and 43
general practice physicians in these eight states. Overwhelmingly, patients had
little concern for their ability to handle frank and possibly adverse information and
also felt prognosis discussions should come earlier in the terminal phase of illness
than later. In contrast, physicians felt that they should initiate end-of-life discus
sions, inclusive of advance directives, but were disconcerted with the paradox of
promoting health and simultaneously discussing its inevitable failure. Physicians
in the study were also uncomfortable with "early" discussions, citing risk to the hope
that patients brought to the patient/physician relationship. With regard specifically
to advance directives, the physicians in this research effort concurred in their
distrust for living wills (advance directives).
If advance directives are not effective in allowing patients to voice their
treatment preferences, are they at least, as mention in the Pfeiffer et al. studies,
"ice breakers" that enable physicians and patients to acknowledge the terminal
64
prognosis and discuss treatment options? Silverman, Tuma, Schaeffer, and Singh
(1995) found in interviews with 219 terminal patients that only 53 of the patients
reported engaging in advance directive discussions. The majority of the discus
sions (70% of the 53 patients reporting discussions) were with family members.
Only 8 patients in the study reported having discussions of advance directives with
a physician. In a study of 126 elderly nursing home patients, the presence of
written advance directives in the medical records of these patients did not facilitate
treatment consistent with the expressed wishes of these patients (Danis et al.,
1991). While treatment was consistent with patients' desires in 75% of the cases,
inconsistent care occurred more often when patients were incompetent and when
the advance directive was available. This aspect of the study findings suggests
that at the time of the event, where a patient was competent or a family member
was available for discussion, treatment preferences were followed by physicians.
Communications were facilitated at the moment of crisis and not as a product of
the advance directive.
Limited communications about either patient treatment preferences in
threatening situations or advance directives in general were demonstrated in a
study by Bedell and Delbanco (1984), who interviewed 157 physicians about their
communications patterns with patients. While the overwhelming majority of
physicians interviewed (93%) believed that patients should at least sometimes
participate in decisions about resuscitation, only 15 of these physicians (10%) who
believed in discussing resuscitation actually talked to the patient before the arrest.
65
"Our study suggests that physicians frequently form opinions about a patient’s atti
tude toward cardio-pulmonary resuscitation. Yet they are unlikely to talk to their
patients about resuscitation, even when they state that patients should always par
ticipate in decisions" (p. 1091).
In a mail survey returned by 1,970 physicians dealing with reasons for
declining advance directive requests by patients for nonresuscitation, understand
ing the patients' desires was not a reason listed by any physicians (Asch, Hansen-
Raschen, & Lanken, 1995). In all cases of noncompliance with advance directives,
physicians' reasons for not following the advance directive were based on their
beliefs about the patients’ desires or what they perceived as the possible prognosis.
As reported in this research, the vast majority of decisions about advance directive
requests are made unilaterally by the physician and not based on communications
with the patient. From the empirical studies presented here, it appears that as
communications devices, advance directives fail to engage the physician and the
patient in verbalizing the terminal prognosis.
Disease Stage and Patient Demographics
Disease stage and patient demographics (age, gender, and ethnicity) are
factors that interact within the patient system regarding the utilization of hospice
services and palliative care. The disease stage factor has been used in the
curative model to predict when the patient’s terminal illness has reached its final
stage and no further curative treatment is warranted. Patient demographics,
66
especially age and ethnicity, influence the decision to utilize hospice services. A
caveat as the utility in studying the impact of these factors on care decisions for
HIV/AIDS patients is the fact that research in this area has been exclusively
developed from the study of cancer. In studying the acknowledgment process and
hospice utilization patterns for HIV/AIDS, the impact and interaction of these factors
are essentially unexplored.
HIV/AIDS does not have the same terminal trajectory as cancer and does
not lend itself to pinpointing the disease stage period 6 months prior to death that
has been asserted as possible with cancer patients and permits timely utilization
of hospice or signals the need to engage in palliative care. According to G rathe
and Brody (1995), AIDS may not lend itself to be as accommodating in finding the
point of predictability that has been achieved in cancer care.
Generally speaking, the course of cancer is predictable. . . once it begins

to affect the patient's functional ability. . . . With cancer the transition
between curative and palliative care is relatively easily marked.. . . AIDS
has a course like a roller coaster ride, from the low of one serious oppor
tunistic infection to the high of treatment and response, and then another
dip due to the next infection, (p. 48)
AIDS is not a single diagnosis but rather a mosaic of diseases and symp
toms that converge as the disease known as AIDS. It is this constellation effect
that makes prediction difficult and creates the difficulty in applying to HIV/AIDS the
templates of disease stage developed for hospice, based on experience with
cancer treatment. The discussion of these structural and patient system factors
must be understood in light of this dynamic.
67
Disease stage. Disease stage was a patient level factor in the establishment
of hospice regulations and care. Cancer is perceived to have identifiable stages
of deterioration that make it more likely that a point in care can be found when
curative services should be abated and the entire focus should be on palliative care
only. Callahan (1993) called this the myth of futility of care. Essentially, the
dichotomy between curative and palliative care is artificial and is never truly
achieved (emotionally) by physicians or patients in making treatment decisions.
Even though disease stage was a major factor in understanding timing with regard
to hospice admissions, the majority of hospice studies that have looked at hospice
referrals have identified patient functional status and the complexity of patient care
requirements as key determinants of hospice admissions, as opposed to disease
stages.
Mor and Masterson-Allen (1987) reported the fact that with regard to patient
disease stage and hospice admissions, in the majority of studies reviewed, inclus
ive of the National Hospice Study, only severity of functional impairment was a
determinant of which hospice was selected. Hospital-based hospice programs
were selected over home-care hospice programs as patient functional impairment
increased; disease stage was not a consideration. Studies by Greer et al. (1986);
Kane, Bernstein, Wales, Leibowitz, and Kaplan (1984); and Mor and Kidder (1985)
are reflective of a number of studies analyzed by Mor and Masterson-Allen (1987),
who concluded that hospice admissions are made at points very close to death
where the patient has serious functional impairments and requires intense re
68
sources on a daily basis. As Mor and Masterson-Allen, reported, "the National
Hospice Study showed that 51% of all hospital based hospice patients and 38%
of home-care hospice patients had a length of stay on service of under 22 days"
(P- 45).
If there exists no clear means of using disease stage to predict or suggest
hospice admission in cancer, the path to a disease stage model of admission to
hospice is even more complex in HIV/AIDS. In many cases of HIV/AIDS, as
highlighted by Anderson and MacEiveen-Hoehn (1988), the fact that death is
imminent in patients may not be known until hours before death. As these re
searchers pointed out, "care providers do not know which scenario [disease trajec
tory] any particular client may follow, which complications cause death, or when
death will occur. Therefore, it is extremely difficult to know when a person with
AIDS should be considered 'terminal'" (p. 40).
Patients follow differing patterns, going from asymptomatic to symptoms that
move along a continuum from disease clusters characterized as opportunistic
infection, from pneumonia through wasting and toxoplasmosis (Anderson &
MacElveen-Hoehn, 1988; Foley et al., 1995). According to Foley et al. and Grothe
et al. (1995), wasting, which usually occurs 9-10 years after disease transmission,
possibly signals a predictable decline toward death. It is during the occurrence of
infections that cluster around the karposi sarcoma or lymphoma, pinpointed as
occurring approximately 8 years after disease transmission, that patients require
outpatient and home-care sen/ices for infusion therapy and other skilled nursing
69
services (Foley et al., 1995). It is at this point that the need for alternative services
to curative care becomes a major concern. Notwithstanding these observations
by researchers, correlating disease stage with need for hospice, the concept of
disease stage remains an exploratory enterprise.
Given the exploratory nature of correlating disease stage in HIV/AIDS with
shifts in needs of care, a natural history of the disease has been developed by
physician researchers at the Johns Hopkins University Medical School (Bartlett,
1994). The disease history in Appendix 1 depicts years from time of disease
transmission to patients for different CD4 counts and disease clusters. Imposed
on the chart is a survival curve, which attempts to relate disease stage and poten
tial proximity to death.
The Hopkins disease history does provide the beginnings of exploring rela
tionships between HIV/AIDS and changes in the events of treatment and patient
experiences. With regard to research in this area, the Hopkins Natural History grid
in Appendix 1 provides a template to understand the relationships of the quality of
life trajectory and disease stages as well as the relationship between acknowledg
ment of the terminal prognosis, hospice admissions, and disease stage. The
Hopkins model was the first attempt at developing a topology of the stages of
HIV/AIDS. The majority of other information is anecdotal that can be attributed to
the evolving nature of the disease and our emerging understanding of the
relationship between disease conditions and changes in the prognosis of AIDS.
70
Patient demographics. Much of the research on terminal illness treatment
decisions and demographic characteristics of patients is, at best, exploratory. Most
of the demographic work has focused on ethnicity as a key characteristic in
influencing decisions of patients to utilize hospice services. The single largest
source of information about demographics and utilization of end-stage services has
come from the National Hospice Study. Mor and Masterson-Allen (1987) sug
gested that Hispanic patients, among all other ethnic groups, were underrep
resented in this study. While Hispanics are approximately 10% of the U.S. popula
tion, Hispanic patients comprised only 4% of the entire study. Other ethnic groups
were not distinguished as being underrepresented in the study. The average age
of respondents in the National Hospice Study was 68 years. These two variables,
age and ethnicity, along with gender, have been noted as the most significant de
terminants of hospice utilization in the studies that have examined demographic
variables in relation to the referral to hospice services.
In the National Hospice Study, logistic regression analysis on the patients
from 20 home-care hospices and 20 hospital based hospice programs (N = 13,374)
revealed that ethnicity had the largest, statistically significant impact on choice of
home-care (HC) hospice over hospital-based (HB) hospice over all other demo
graphic variables (Mor, Wachtel, & Kidder, 1985): "If a patient were black or
Hispanic, there was 1.3 greater chance that home care hospice would be selected
over a hospital based hospice” (p. 1117). Smaller effects but in the same direction
(selection of HC hospice or HB hospice) were noted in this study with gender. A
71
patient being female suggested that HC hospice would be selected over HB
hospice. The association of minority status with choice of home care was
consistent with the voluminous literature noting the underutilization of nursing
homes by Blacks and regarding the solidarity of the Hispanic family's support struc
ture.
A Rhode Island study of 2,104 terminal cancer deaths between 1980 and
1981, conducted by Spector and Mor (1984), examined demographic variables and
their impact on end-of-life expenditures by patients. The study findings indicated
from regression analysis performed on age, sex, race, and marital status that age
had an significant impact on costs, i.e., for each additional year of age, costs in the
last 6 months of life declined. Additionally, non-Whites experienced lower costs
than Whites in the last 6 months of life.
Spector and Mor explained the differences in charges among demographic
cohorts showing lower costs and older, non-White patients as being related to a
greater percentage of these patients selecting hospice. As has been the situation
with most hospice case studies, the referral to hospice occurred in the last month
of life and lower costs were associated with lower costs in the last 30 days of life.
While the Spector and Mor study was a nonrandomized, retrospective review of
patient records, it did imply that non-White terminal patients might opt for less
institutionalized, acute care in the terminal phase of their illness. Similar findings
with regard to age and expenditures was found in a study by Riley, Lubitz, Prihoda,
and Rabey (1987) of a 5% probability sample for 1979 Medicare deaths (N =
72
58,382). This study, however, did not report on ethnic differences or examine the
utilization of hospice services.
Research is limited with regard to the impact of age, sex. and gender on the
terminal prognosis acknowledgment process and the hospice referral process. At
best, research efforts looking at these variables have been limited to studies of
cancer patients drawn as subsamples from the National Hospice Study. Therefore,
the impact of these demographic variables on end-of-life acknowledgment and care
choice with regard to HIV/AIDS is nonexistent at the current time.
In general, demographics take on different meanings with the HIV/AIDS pop
ulation than with cancer populations that have been studied. If one looks at the
demographics of AIDS in Southern California, new cases are greatest in number
among Hispanic populations and current patients on service in the county's largest
clinic, Los Angeles County-University of Southern California Medical Center
(USCMC). This center represents in excess of 45% of all county AIDS cases, out
of which Latinos comprise 44% of all cases and African-Americans comprise 16%
(Los Angeles County-USCMC, 1995). Combined, people of color represent over
60% of current HIV/AIDS cases under treatment in this major clinic.
The effect of ethnicity on the acknowledgment process and the referral to
hospice services with regard to HIV/AIDS is unknown. Extrapolation from the
limited research that exists would suggest that minority patients might select home
hospice services over HB hospice. It is unknown whether this same affinity for HB
73
programs translates to lower utilization of curative services as the disease
progresses.
General research on ethnic minorities with regard to health care in general
sheds very little light on the subject. Minority populations’ utilization of formal health
care services consistently points to a lower rate of utilization among Hispanic and
African-American patients that for Caucasian patients (Ailinger & Causey, 1993:
Green, 1982; Lieu, Newacheick, & McManus, 1993). Consistently, these studies
demonstrate that minority populations show between a 100% to 400% lower use
of formal health services than Caucasians. As reported by Green (1982) and Lum
(1986), the reasons for lower utilization levels of health services are in large
measure are attributable to the existence of kinship and strong, extended family
networks among Hispanics and African-Americans. These support networks sub
stitute for the caregiving provided in many formal health care settings, especially
home health care services (Ailinger & Causey, 1993). In addition, Lum pointed out
that there are indigenous health providers among Hispanic communities who are
known and trusted in their communities.
While these investigations and studies are useful in understanding general
health care choices among minority communities, they do not address the interac
tion of ethnicity with HIV/AIDS. The stigma of an AIDS diagnosis may well subvert
the patient's access to support and care from kinship networks. The impact of this
disease on terminal care choices interacting with conceptualizations of minority
health care behaviors is simply unknown.
74
Quality. Qt Life
While the research with regard to costs and utilization of hospice have been
extensive since the National Hospice Study, quality of life as a measure, while
incorporated within the same national study, remains at best an exploratory con
cept. Quality of life brings to clinical treatment issues that differ from physiological
outcomes of the services provided or the absence of disease. Health-related
quality of life (HRQOL), according to Albrecht and Fitzpatrick (1994) and Lerner
and Levine (1994), deals with the subjective experiences of illness treatment,
inclusive of concepts like well-being, satisfaction, morale, functional effectiveness,
and social interaction. According to Lemer and Levine,
biological facts assume overwhelming importance in patient care. Conse

quently, within medical care settings, little attention has been devoted to
obtaining information about dimensions of health and well being such as a
patient's perceived health or ability to perform important social ro le s .. . .
These dimensions begin to describe an individual's health-related Quality
of Life. (p. 44)
Incorporating these subjective, patient-related concepts loosely known as quality
of life into terminal care situations is extremely important in assessing outcomes
of treatment and care and in making decisions about treatment alternatives. Up
to this point, quality of life measures have been used almost exclusively with regard
to patient outcomes. This concept may well have a place with respect to treatment
decisions prospectively. Because the traditional measurements of treatment
effectiveness, the restoration of health, and the absence of disease have little
relevance in the terminal care setting, the quality of life perceived by patients may
75
have a profound place in assessing the impact of ongoing terminal care. If the
impact of curative and palliative care is to be measured in the terminal setting, then
subjective patient experience measures become critical. A recent Lancet editorial
(Horton, 1995) suggests, in fact, that the best application of quality of life measures
may be with seriously ill patients and those who are receiving hospice care and
palliative treatment.
The World Health Organization (WHO), which historically considered health
as a state of complete physical, mental, and social well-being, added the dimension
of "individual autonomy" to capture the patient voice in treatment situations
(Albrecht & Fitzpatrick, 1994). Since the inclusion of the more subjective realm of
HRQOL was created by the WHO, researchers have attempted to develop
definitions of HRQOL that would be inclusive of curative as well as palliative
treatment. Erickson and Patrick (cited in Albrecht & Fitzpatrick, 1994) considered
HRQOL to be a value assigned to the duration of life as modified by the
impairments, functional states, perceptions, and social opportunities. This definition
points to the development of an instrument to assess quality of life in treatment
situations and lend credence to patients' concerns as well as social and functional
states.
While a number of models of quality of life follow the definitions and factors
expressed in the conceptualizations quoted earlier, there remains varied utilization
of HRQOL measures. As Albrecht and Fitzpatrick (1994) indicated,
76
while HRQOL measures are useful to improve clinicians' awareness of the

broader consequences of treatm ent. . . and supplement doctor-patient com
munications, such uses remain uncommon in clinical practice. The disuse
is due to lack of demonstrated practical value of incorporating such
instruments into the routines of care and lack of clear meaning of current
HRQOL instruments, (p. 13)
As will be seen from uses of quality of life measurement in the National
Hospice Study and exploratory development of instruments with regard to HIV/
AIDS patients, much of the current concerns over use are valid. Measures that
have been validated are limited in their application to a variety of patient treatment
experience issues. The vast majority of instruments that have been used
extensively in clinical situations are heavily weighted toward physical functioning,
specifically with regard to pain, which does not extend HRQOL beyond historic
concepts. Moreover, the study populations for quality of life issues in terminal
situations have been predominated by cancer. Other chronic illnesses like HIV/
AIDS have remained relatively unexplored with respect to HRQOL issues.
Between 1975 and 1986, as reported by Mor and Masterson-Allen (1987),
a total of 23 studies focusing on hospice quality of life issues were conducted. Two
of the studies were analyses of the National Hospice Study, which remains the
single largest study looking at HRQOL in a terminal care setting. The vast majority
of these studies defined quality of life as an issue of pain (19 studies) and other
physical symptoms (8 studies). The only cognitive aspect of quality studied prior
to 1984 was mental confusion. Functional and emotional factors defined as quality
of life were not included in HRQOL studies until 1984. Between 1984 and 1986,
77
only 5 studies credenced the combination of functional and emotional experiences
of patients as quality of life. Study samples were predominated by cancer as the
diagnosis of study subjects. Other terminal diagnoses were not identified. Study
designs were predominated (15 of 23) by single-subject designs with single groups
of hospice users. Seven additional studies were quasi-experimental designs, in
clusive of the National Hospice Study, leaving a single experimental design. Where
pain was the primary measure of quality of life, findings of comparison and control
group designs have consistently shown that fewer hospice patients than
comparison patients reported having sustained or significant pain—a pain reporting
ratio of between 1:2 and 1:3. In comparison, studies of pain between types of
hospice care (HB and HC), HB service patients reported less pain than did HC-
based patients. Mor and Masterson-Allen suggested that this finding might have
been due to more liberal use of analgesics in HB hospices. In the few studies
during this review period that used expanded measures of quality of life (i.e.,
emotional aspects of patient reaction to the treatment experience), there were no
statistically significant differences reported between hospice care and conventional
care (CC) patients.
Only one study reports interesting findings with regard to HRQOL that have
a direct impact on the focus of treatments provided in the palliative care/hospice
setting and the acknowledgment process. Mor and Masterson-Allen (1987) com
pared hospice patients (N = 500) who definitely knew their diagnosis, who possibly
knew their diagnosis, and who did not know their diagnosis. Knowledge of
78
diagnosis, a critical hospice concept, was correlated by Wilkes to quality of life.
Of the 29% of study patients who rated their quality of life as excellent. 20% of
those patients were from the group who were confirmed as knowing their diagnosis.
Of the 70% of study patients who rated their quality of life as satisfactory. 635
members of this group were from the cohort that definitely knew or possibly knew
their diagnosis. This was the only study found that suggested that acknowledgment
of the terminal diagnosis had a possible correlation with respect to quality of life.
Analyses of the National Hospice Study with regard to HRQOL were done
by Greer and Mor (1986); Mom's et al. (1986a); and Moms, Suissa, Sherwood.
Wright, and Greer (1986b). A number of established measures of quality of life and
functional status as well as a number of either patient or caregiver self-reports on
social and emotional status were used in the National Study. Overall quality of life
was measured using a composite pain index, the HRQOL Index: the Kamofsky
Performance Status (KPS) scale, a scale assessing patients’ physical functionality
from complete (100 points) to death (0 points); and primary caregivers’ self-reports
of patients’ awareness of their situation and emotional status (Greer & Mor, 1986).
In addition to this composite quality of life measure, social quality of life and
symptoms were gathered on patients in the National Study from reports of primary
caregivers (Greer & Mor, 1986). As noted earlier with regard to the National Hos
pice Study sample, the diagnosis of the vast majority of patients in the study was
cancer; no other diagnoses were identified.
79
One of the difficulties with regard to quality of life measurement as reported
by Greer and Mor is that a number of the scales, which focus on health status, had
to be modified for use with terminally ill patients. In reviewing quality of life
measurements from the National Hospice Study, Mor (1986) reminded researchers
that "considerable care is required in interpreting the results of psychosocial meas
ures taken of hospice patients, due to both the difficulties in obtaining responses
and the lack of variation among responders" (p. 29).
The level of pain was the most often and consistent measure of quality of
life reported in the analyses from the National Hospice Study. Measures were
reported for the periods 3 weeks prior to death and 1 week prior to death; and as
noted by both the Greer and Mor (1986) and Moms et al. (1986a), the lowest per
centage of patients in persistent pain were HB hospice patients (3% -5% ). Seven
to 13% percent of the HC hospice patients reported persistent pain, while the
numbers at both low ends were 1.6 times greater for CC patients (Morris et al.,
1986a). Mom's et al. (1986b), in comparing the measures of quality of life in the
National Hospice Study, concluded basically that pain indexes were the most useful
of the myriad of indicators. Pain indexes and symptom records are independent,
not easily influenced by other conditions, and very sensitive to change throughout
the treatment process inclusive of the last week of life.
Mom's et al. (1986b) also suggested that functional performance indicators
like the Kamofsky Performance Index were also useful measures. The Kamofsky
scale and the pain index do not follow what has been called the "terminal decline
80
phenomenon" (p. 52). The absence of this phenomenon means that measures
hold more constant over time and do net necessarily interact with time in producing
a steady decline or deterioration as death approaches. These measures are
sensitive to small changes throughout the terminal process, including the period
of 1-2 weeks prior to death, and may provide significant indications as to quality
of life.
Other measures of quality of life reported in the National Hospice Study,
those that focus on social interaction and emotional and cognitive functioning, did
not receive significant coverage in the outcome studies reported here. Only Greer
et al. (1986) reported on patient and primary caregiver self-reports of social interac
tion. The results were varied and inconclusive by treatment setting. While HC
hospice patients received more hours of social visiting at 3 weeks prior to death
and had the highest hours recorded of chatting with visitors, none of the differences
between the HC, HB, and CC patients was statistically significant.
The only social interaction quality of life rating reported to be statistically
significant between these three groups was the primary caregiver rating concerning
patient's quality of life. Caregivers' ratings of CC patients were higher than
caregivers in the other two settings (Greer et al., 1986). How well social interaction
reported by caregivers constitutes quality of life for patients or something else is
a secondary issue, as Mor and Masterson-Allen (1987) suggested: measurement
of psychosocial domains in terminal care is complex and misleading.
81
In summary, pain and functional measures perform well in comparison to
other quality of life measures in assessing quality of life. These domains, however,
restrict quality of life to physiological aspects of the terminal experience. Psycho
social measures present significant problems in rater reliability or in demonstrating
sensitivity to care and treatment situations. Mor (1986) suggested that a model
of quality of life measurement be built with physical measures and patient
symptoms as key components. Focus on these issues would permit the care team
to stabilize symptoms and sustain the patient's functional status for as long as
possible: "When patients' optimal status . . . and symptom control have been
facilitated, interventions [and measurement] directed exclusively toward improving
other psychosocial states have a chance of being effective" (Mor, 1986, p. 33).
Mor's points suggest that quality of life is a complex set of interactions
between biological and psychosocial concepts of patient functioning. Extending
Mor’s notion, if the outcome of quality of life is directed at understanding the impact
of the terminal care setting on these domains, then the system of care must also
be focused on service delivery inclusive of bio-psychosocial domains. This places
a demand on quality of life in that it measure physiological aspects of care; pain
and symptom control; and social and emotional reactions to care, patient social
interaction and awareness of treatment conditions and prognosis. In utilizing
HRQOL information that is inclusive of the social and psychological realms of
patient experience, Tsevat et al. (1994) pointed out that the impact of care on
patients and their social and emotional evaluations are important considerations
82
in decision making for both patients and families. Since physicians’ preferences
are often misaligned with patient reaction to care, subjective quality of life measures
could well supply physicians with evidence and patient reaction to the care being
provided. Health Related Quality of Life as an outcome of terminal care is still, as
seen in the findings of the several studies presented here, very much an explora
tory proposition.
Cleary, Wilson, and Fowler (1994) suggested that a more refined and
differentiated "model" of HRQOL needs development and that such a model might
be a useful place to start in understanding how HRQOL can support and supple
ment current outcome measures of care and treatment. One of the major problems
inhibiting a broader consensus about how to conceptualize and measure HRQOL
is that there is no common framework to guide either theoretical or empirical work
in this area. Cleary et al. theorized that measures of health could be thought of as
a continuum of increasing biologic, social, and psychologic complexity. Further,
in suggesting a model to incorporate psychosocial aspects of quality of life, they
suggested that complex concepts would be easier to understand and interpret
when their relationship to simpler, more familiar concepts was made clear. For
example, in the HIV-infected patient, the meaning and significance of a decrement
in role functioning is facilitated by understanding how role functioning relates to
clinical variables such as CD4 counts, specific opportunistic infection, depression,
and pain.
83
The conceptual model suggested by Cleary et al. is depicted in Figure 2.
These concepts form a potential model to conceive of the interrelation of potential
biologic and physiologic factors, disease symptoms, patient functioning, patients'
perceptions of their general health status, and psychosocial issues of living and
functioning with a terminal illness. The key is to understand that while quality of
life is a desirable outcome, its elevation to a point of consideration, equal to cost
outcome data, requires further exploration and development. Validation of a model
of HRQOL will eventually permit the utilization of quality of life as an accepted and
valued outcome in terminal care. In addition, the validation of a quality of life
framework with HIV/AIDS patients will provide a significant opportunity to better
understand and design treatment of end-stage care for this population.
Organization of Terminal Care Services
While Chapter 2 described the historical development and continuing impact
of the medical model of care, this section specifically presents the organization of
terminal care services. Specifically, this construct is developed by presenting the
theory and empirical research that focuses on the intent (orientation) of the care
provided to terminal patients, the arrangement (referral patterns and relationships)
between service providers, and models of service delivery for HIV/AIDS patients.
Three final sections explore the results of the organization of terminal care services:
a discussion of the hospice referral, the regulatory environment that creates the
B iologic & Physiologic
Patient
Symptoms
Functional Status
Global Health
Perception
Pyschosocial Factors
H g u re.2. Conceptual model of health-related quality of life in

terminal care
85
context in which services are provided, and a discussion of the costs of terminal
care services.
Intent of Terminal Care Services

Theory
The culture of major hospitals emphasizes technological attacks on diseases
and keeping lives going. Doctors do not listen to what patients want; they aren’t
honest with bad news. They manage pain poorly, and their decisions leave an
alarming number of families broke or near broke (Annas, 1995, cited in Brink.
1995).
Intent of care is at the crux of the medical-curative approach to terminal care.
It is the physician's intent, in particular, that can present a significant barrier or
gateway to other treatment modalities that would be more appropriate for the care
and treatment of terminal patients.
If we are looking for the theoretical foundations upon which the medical
model of care is built, several writers have suggested that the overriding intent to
cure in the current medical model of care is best understood in the relationship
between the art of medicine and the machine. The longest and most significant
amount of research contributing to an understanding of the orientation and intent
of the medical system in interaction with the terminal patient has been done by
Glaser and Strauss (1965, 1968) and by Strauss et al. (1985). In a series of
studies spanning over 2 decades of work, 1960 through the early 1980s, they
conducted interviews combined with onsite observation in nearly a dozen California
86
medical centers. There research efforts, which resulted in a series of monographs
fAwareness of Dving. 1965; Time for Dving. 1968; and Social Organization of
Medical Work. 1985), have captured the dynamics between the medical model of
care and the terminal patient in a longitudinal effort unequaled by other research
efforts on the subject. Using grounded theory development, Glaser and Strauss
have turned their observations into a theoretical framework that delineates the
medical model of care. Strauss et al. (1985) have been quoted as theorizing that
the majority of medical practice in hospitals directed at terminal patients can be
described as "machine work" (p. 40). In the conceptualization of Strauss et al., ma
chines—the diagnostic and invasive tools of medicine—dictate both the organization
and process of work flow in a hospital. Patients are moved from one specialized
area of the hospital to another to be surveyed by machines and the technicians who
are specially trained to utilize those machines.
Machine work, as the organizing aspect of patient care, fragments what is
known about the patient and the patient's disease. Patient knowledge is, at best,
under the guiding principle of machine work, a mosaic of bits and pieces of
information. Machines, housed in different areas of the hospital, requiring different
and often unique technical expertise to operate, create a system where work on
the patient and care of the patient are isolated. Patient work is incrementally
accomplished and performed (Strauss et al., 1985). The only organizing principle
then becomes the disease and not the patient. This dynamic has resulted in the
fragmentation of chronic care with increasing possibilities that continuity of care
87
will go awry, accompanied by accusatory cries of dehumanization (Strauss et al..
1985).
Critical among those who write about services necessary for the terminal
AIDS patient (Martin, 1991; Morrison, 1993; Von Gunten, Martinez, Neely, & Von
Roenn, 1995) is the need for "a continuum of services linked by . . . [an intent] to
coordinate services along that continuum (Morrison, 1993, p. 319). This quest for
continuity comes as a cry to understand and respond to the needs of the person
with AIDS and not just the medical conditions of the disease AIDS. This lack of
connecting patient needs with the conditions produced by the disease in terminal
care services, as suggested by Strauss et al. (1985), is due to the secondary status
of the other work rather than the machine work that is required for terminal patients.
The "other" work entails comfort work, sentimental work, and articulation
work. Comfort work deals with work directed at understanding and addressing dis
ease symptoms and side effects produced by invasive machine work. This means
attention to symptoms and pain, i.e., tender loving care and attention to physical
comfort. In medical situations, a sick person is reacting to (a) the illness and its
symptoms with anxiety, fear, panic, and depression; and (b) the medical treat
ments, which can frighten, wound sensibilities, and even threaten self-esteem.
Alleviation of these patient issues is best done with a focus on the patient's
experiences during care, i.e., attention to the psychosocial patient issues. The
articulation work is done to assure that the individual work of hospital staff in
carrying out their machine work adds up to more than discrete and conflicting bits
88
of accomplished work. In a sense, articulation work means that both patient and
disease are treated and that the patient and disease are not organizationally dif
ferentiated and dissected. In a sense, articulation is a bridging between curative,
acute care and palliative care. The modem focus and intent of the system of care
does, in fact, distinguish between patient and disease. As pointed out by Strauss
and Corbin (1988) in their work, Shaping a New Health Care System
diagnosis and treatment of disease, mortality and morbidity, pathophysiol

ogy and other similar concerns frequently dominate the interests and efforts.
. . . These concerns are important to the management of disease.. . . Too
seldom, however, do physicians attend to the patient's ability to cope, level
of discomfort, patterns of living,. . . and emotional status, (p. 29)
In substantiation of this point with regard to the intent of treatment of terminally ill
patients to fight disease, Seravalli (1988) indicated
that physicians feel a mandate to help other human beings in need. . . .

Once the imminence of death has been acknowledged, physicians, who
want to keep healing . . . become frustrated. Thus, some physicians show
their discomfort and uneasiness [with the frustration of losing a battle to
disease] either by continuing useless therapies or detaching themselves
from the case. (pp. 1729-1730)
Empirical Research on Intent of Terminal

Care Services
A number of empirical studies undertaken to examine both the use of
palliative care and the nature and quantity of medical treatment during the last
weeks and days of life validate the almost singular focus of the medical model of
care for terminal patients on cure. As one Intensive Care Unit (ICU) technician
89
stated, "We focus on a disease, not a person When death becomes imminent
. . . we have trouble deciding to stop using technology" (Brink, 1995, p. 72).
Much the same attitude with regard to intent of medical care at the end of
life is expressed in the research of Crane (1975) in her work, The Sanctity of Social
Life: Physicians' Treatment of Critically 111 Patients. Crane's research covered a
5-year period which combined 125 physician interviews with a total of 3,000
questionnaires completed by physicians both in university- and non-university-
affiliated hospitals. In response to a question on when curative treatment might
be withheld, one specialist suggested:
If one resolves in advance to do everything possible for every patient, one

is spared many of the difficult decisions you ask about. Our training is to
preserve life and function. . . not only where it is desirable and convenient,
but where it is possible. We are not trained (and should not be!) to decide
who is better off dead. (p. 35)
Several studies on costs of end-stage care demonstrate the heavy utilization
and reliance of the terminal treatment system on curative machines and procedures
that the majority of terminally ill patients are subjected to just months and weeks
prior to their death (Bloom & Kissick, 1980; Brooks & Smyth-Staruch, 1984; Greer
et al., 1986; Long et al., 1984; McCall, 1984; Mor & Kidder, 1985; Rosenheimer,
1991; Seale, 1991). In summarizing the studies cited, samples in each case were
randomly drawn from Blue Cross, Blue Shield, and Medicare records at the end
of a 12-month period for those who died during the year. Sample sizes ranged
from 171 (Seale, 1991) to 10,000 (McCall, 1984). In each of the studies, costs and
services were analyzed for each month from 12 months before death to the month
90
of death. Consistent across the studies, inpatient hospital days represented the
largest single expenditure with between 61% and 73% of inpatient hospital costs
coming in the last 90 days of life for these terminal patients. This was the fact even
though 60% of the patients’ time during this period was spent outside the hospital
setting.
In the McCall (1984) study, the sample of over 10,000 persons averaged
1.8 surgeries per person during the last 12 months of life, with 44% of those sur
geries coming in the last 3 months of life. Seale (1991) reported similar findings
with regard to surgeries during the last trimester of life and further reported that
76% of those procedures involved a curative or investigative intent as opposed to
a palliative/symptom relief intent.
Bloom and Kissick (1980) and Greer et al. (1986), aside from looking at
inpatient hospital days, focused on specific ancillary curative services provided
during the last 2-3 weeks of life for terminally ill patients. In the Bloom and Kissick
study, terminally ill patients in the 2 weeks of life who were enrolled in either home
care or home hospice programs accrued approximately $500 in ancillary costs
compared to a 2-week expenditure of over $3,000 for hospital bound patients.
Greer et al. reported a differential between home-bound and hospital-bound pa
tients of 100%, with 32% of hospital-bound patients receiving radiation therapy and
surgery 3 weeks prior to death and 64% of hospital-bound patients given diagnostic
tests inclusive of x-rays and scans. It is also interesting to note that while over 61 %
of home-bound patients in the Greer et al. study received social services during
91
the last 3 weeks of life, only 49% of hospitalized patients received social services,
e.g., counseling.
A final point has to be considered in attempting to understand the continued
use of active treatment by physicians in the last hours, day, and weeks of life. The
fact remains that the singular focus on active treatment and life-sustaining efforts
is a core value of medical training and practice in this country. In research
conducted by Solomon et al. (1993) that explored physicians’ and nurses' attitudes
about stopping life-sustaining treatments once begun or not starting life-sustaining
treatments at all, findings indicated a strong preference in favor of stopping or not
starting treatment. Of the 687 physicians and 759 nurses from five East Coast
medical centers participating in the study, an overwhelming 87% of the sample in
dicated that they were in favor of allowing patients to die by forgoing or stopping
treatment. Fifty percent of the survey respondents, however, reported acting
against their conscience in providing care. Most concern centered on over-treat
ment rather than under-treatment. Follow-up interviews were conducted by the
researchers to resolve the paradox of personal beliefs against life-sustaining
treatments for terminal patients and actual practices to the contrary. In these
follow-up interviews, respondents often cited issues of prevailing practices in their
institutions that guided treatment decisions and felt that actions to the contrary
would bring sanctions and peer review.
Similar types of research in the abatement of treatment for terminally ill
patients have been done by Asch et al. (1995) and Travis et al. (1974) with similar
92
results, showing strong feelings among medical personnel about withholding or
withdrawing life-sustaining treatment, yet in large measure life-sustaining treatment
was utilized on terminal patients. What is striking about this research, however,
is the fact that discussions of decisions about terminal patient care did not include
discussions of alternate forms of treatment. The decision presented was to go from
a state of "do something care" to a state of "nothing more to do" (Glaser & Strauss,
1965). Within the medical model of care, it appears that the predominant decision
has to do with continued treatment or no treatment at all. In this model, patients
move from a state of hopefulness as treatment is progressing to a state of
hopelessness as treatment is withdrawn.
This dichotomy is best demonstrated by the end-of-life treatment decisions
offered by a physician as part of a study by Hyman and Bulkin (1990) on physician
decisions to utilize hospice services for terminal patients. When asked if patients
followed the physician’s recommendations for hospice care at the end stage of a
terminal illness, the physician replied, "They usually g o . . . Almost all. I usually pick
well. I pick so late on that they always go. Usually they’re, they really don't have
any options, or they have options but they’ll go" (p. 49). This comment highlights
the fact that, as Hyman and Bulkin pointed out, physicians singularly focused on
the curative intent of services wait to discuss hospice and palliative care until there
are no options, when all forms of active treatment have been exhausted and
symptoms and quality of life have reached a state of unmanageability.
93
This final event, the focus on palliative care, comes very late in the treatment
process, with very little time remaining to work with the patient on pain and
symptom management and issues of death and dying. Shared by many studies
on service utilization at the end of life are the findings of a comparative study of
hospice and CC utilization for terminal patients conducted by Brooks and Smyth-
Staruch (1984), where hospice patients showed lower cost of care in the last 3
months of life than conventional medical model care patients. As reported by
Brooks,
this general comparison is problematic, however, in that all hospice patients

are assumed to be on hospice care the entire last 24 weeks of life 51 %
of the hospice patients were served by a hospice program less than four
weeks . . . and only 23% received hospice care for longer than 12 weeks,
(p. 696)
Palliative intent is provided at the very end of "exhaustive" active treatment where
up until the final days of life, cure and activity had been the intent (Foley et al..
1995). The focus of palliative intent is on the patient's adjustment to his/her
impending death, which is facilitated by careful attention to the alleviation of pain
and the patient's cognitive functioning.
Arrangement of Terminal Care Sen/ices
This reality leads to the second aspect of organization of services: service
arrangement. Arrangements have to do with the structure of services and the
relationship between service providers and patient flow through the system of care.
94
The preceding discussion suggests strongly that the medical model deter
mines arrangement of terminal care services, continuity of care between providers,
and the referral of patients to differing levels of care. Following the medical model
can be characterized as the acute care setting, the hospital, being the center of
care with other services, e.g., hospice and palliative care, being a secondary con
sideration in treatment decisions. Starr (1982) has pointed out that the modern
hospital has become the center of our system of acute care in the United States
and, according to Freidson (1970b), "the physician is the structural hub that
patterns the relationship among other occupations [and services] that provide
health and health related services" (p. 128).
Modem hospitals are professional bureaucracies (Freidson, 1970b; Twaddle
& Hessler, 1987). Patients tend to be lost in the hierarchical nature of hospital
structure and the formal bureaucratic referral relationships that hospitals have with
other institutions and community-based providers. Hospital structure is a key
determinant of the attitudes and behaviors of staff and patients (Twaddle & Hessler,
1987). As described by Hudson (cited in Twaddle & Hessler, 1987), hospital
structure often approximates the Weberian model (Max Weber) and is called a
"serial structure." Serial organizations can be depicted as organizations with
centralized authority, hierarchical communications and rules, with authority vested
in the office (positions) people hold or the functions they are charged with
performing. Communications and control in theses types of organizations tend to
be centralized.
Fox (1994) utilized the image of the monolith to describe hospital organiza
tion and its presence on the landscape of care providers. Standing like a monolith,
the hospital and its physicians tend to control patient flow to other providers: and
while community-based sen/ices or services beyond the curative practices of
hospitals are required by patients, hospitals and physicians tend to "inscribe" their
practices upon patients and define the needs of patients. In a real sense, the
curative model of care, centered in hospitals and controlled by physicians, tends
to regulate patient flow and service access for the terminally ill patient. Yet. due
to loose coupling and lack of formal organizational relationships and control
between other providers and the hospital, the physician and hospital tend to be
poor conductive sources for terminal patient connections throughout the com
munity-based and other services available to them, e.g., hospice and palliative
care.
As delineated by Freidson (1970a, 1970b), physicians within hospitals and
medical clinics, because of their professional dominion over illness and health, tend
to control medical and health work while having little direct control and authority
over services related to health care outside of the acute care setting. According
to Freidson (1970b), "the medical division of labor is functionally incomplete" (p.
146).
By and large, within the . . . division of labor dominated by the profession

[physicians]. . . most work is limited to that which conforms to the special
perspective. . . a perspective that emphasizes. . . the treatment of rare and
interesting over common and uninteresting disorders, the cure rather than
96
the prevention [or care] of illness, and preventive medicine rather than what
might be called preventive welfare. (Freidson, 1970a, p. 148)
Freidson's conceptualization can be characterized as the physician, domi
nated by and dominating the curative model of care in the terminal phase of
disease, having control over referrals and access to services. This control, how
ever, is informal by nature but formalized by virtue of the health system’s recogni
tion that physicians are the individuals defining and treating health and illness. As
a product of this social authority given to the physician and the fact that the
physician dominates outside services to hospital and clinic, access to other serv
ices for terminal patients tends to be uneven and restrictive but always curatively
focused. According to Freidson (1970a),
I wish to suggest that when some of the relevant services lie outside the
medical division of labor [and control]. . . some serious problems of access
to care and of the rational coordination of care are created by the barriers
that the profession erects between the segm ent. . . it does dominate and
the segment it does not. (p. 149)
Community-based hospice services and home hospice tend to be those services
outside of the direct domination, where access is made difficult for patients.
Chronic illness and specifically AIDS, as has been pointed out by Corbin and
Strauss (1992), Sankar (1991), Strauss (1988), requires a continuum of services
inclusive of hospital inpatient care but also the linking of community- based health
and social services. In the studies of service utilization at the end of life cited
earlier, the average number of hospital days in the last year of life for terminal
patients was between 40 days (McCall, 1984) and 48 days (Long et al., 1984). The
97
remaining 300+ days of life were spent by patients in outpatient settings and at
home. The majority of non-inpatient hospital days of care, on average, would
suggest that terminal care takes place in a variety of settings with a demand for
medical and psychosocial care and coordination outside of the acute hospital
setting. Levine (1990) posited that the AIDS epidemic is challenging American
health care to become a true system:
Webster's Ninth Collegiate Dictionary defines system as a regularly

interacting or interdependent group of items forming a unified whole. That
definition does not fit the multitude of organizational structures [arrange
ments] . . . that provide health care to Americans The ideal for A ID S . . .
infected patients, as well as those with other chronic illnesses, is an
interdisciplinary continuum of care that offers to patients levels of medical
care and social services they n eed . . . (p. 45)
This creation of a continuum of services, the bridging or linking of services
—specifically in terminal care, the linking of hospice and palliative care with curative
services—is limited by the nature of health care service structures and referral
mechanisms. As pointed out by Salcido and Jansson (1985), the American health
care system is characterized by an entrepreneurial spirit of independent providers
that can be described as a "disaggregated atomistic non-system." At best, services
can be linked through loosely coupled affiliations between providers. This is most
true when we look at access to hospice care and palliative sen/ice for the terminal
patient.
Hospice care arrangements. Hospice services are predominantly seen in
three forms: inpatient HB units, free-standing facilities, or as an array of services
98
provided to a patient in the patient's home (home-based hospice care). As reported
by Greer et al. (1986) and Mor and Masterson-Allen (1987), over half of hospice
programs are located within the acute care hospital and were established as
adjuncts to acute care services—services that would remain under the direct control
of the medical institution.
In studying the negotiations between acute care hospitals and hospice pro
grams over a 15-month period in the midwestem United States in the late 1970s,
Levy (1982) made two observations drawn from over 70 in-depth interviews of both
inpatient HB and home-based hospice executives regarding referral of patients to
hospice services:
High technology medical centers appear more resistant to situating [and

utilizing] a hospice within their organizational structures.. . . Their reputa
tions as citadels of scientific medicine make it difficult for them to reconcile
their emphasis on active treatm ent. . . by encouraging patients to forego
. . . active treatment, hospice programs directly threaten a center's core
technology, (p. 297)
Levy (1982) goes on to indicate that in the case of a HB hospice program, the
motivation for establishment of the palliative program is to retain control of the
patients and not to lose them to other services. In discussing the referral relation
ship between home-based and free-standing hospice programs and medical insti
tutions, Levy summarized the perspective as follows:
The weak position of hospice organizations relative to organized

medicine makes deference behavior a commonly used posture in relations
with medical staffs— Deference gets expressed, for example, in hospice
statements. . . that play down its challenging role by assuring others that
hospice is meant to supplement, not supplant traditional medical services,
(p. 307)
99
In contrast to other adjunct systems of care like osteopathy, which have
developed their own etiology and treatment, hospice programs draw their core
technology from mainstream medical sources. Consequently, physicians and
policy makers interested in reducing alternate systems to compete with the medical
model control access to hospice care, making hospice a medical modality and
service in the arsenal of the curative process (Levy, 1982; Mor & Masterson-Allen,
1987). The arrangement discussion leads to a review of the models of terminal care
that have evolved to meet terminal patient needs within the current medical model
of care.
Empirical Research on Models of Terminal

Carg
Three distinct models of terminal care, the continuity-case management
model, the trajectory model, and the blended intent model, aimed at bridging the
gaps between curative and palliative terminal care, have been identified in the
literature. These models can be characterized as the case management or
continuity of service models. The desired outcome of the continuity-case man
agement model is to arrange, as seamlessly as possible, all the services a patient
may require, when they are required.
The first model remains embedded in the medical model of care and is more
of a structural device than one aiming at changing the intent of care provided by
the system. The second model is a trajectory model (Corbin & Strauss, 1992).
This model takes a view that the patient disease has to be managed and that this
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is done through the services of a nurse case manager. The case manager is
responsible for mediating the types of services and the intent of services provided
for the patient. The model is a HB model that leaves gaps in managing services
provided in other venues. In addition, the model is based on an orderly disease
progression which follows the medical model of care.
The third model, the blended intent model, is focused on bringing curative
and palliative intent into the treatment of patients throughout the care process. This
model, while being the only one of the three models to focus on intent of care, is
HB and does not offer coordination of services in other, nonhospital care venues.
Of the three models, only the continuity of care model has been tested empirically
to date.
Case management: Continuity of care. The oldest of the models is the case
management model as developed by San Francisco physicians and other care
providers working with HIV/AIDS patients (Morrison, 1993). According to Morrison,
"the San Francisco Model consists of a spectrum of coordinated services ranging
from residential to acute care, which allow or provide for continuity outside of the
hospital setting..." (p.319). The San Francisco model is also strongly based on
the continuum of services that include home care, community-based support
services, hospice care, and dedicated case management to link service provision.
Many communities have built programs based on the San Francisco model
in recognition that care for AIDS patients is characterized as working with a chronic
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illness that moves between health care settings and through many disease phases.
As Beddar and Aikin (1994) reported, as chronic diseases "move across the illness
trajectory, patient transitions involve shifts in the roles and responsibilities of care
providers, patients, and families. . . the possibility of discontinuity exists (p. 254).
What was suggested by Beddar and Aikin is that an ambulatory case manager is
required instead of the referral system driven by the acute care hospital under the
current model of terminal care.
Another aspect of the case management and continuity model, besides

stressing the community as opposed to hospitals, as highlighted by Gordon
(1994), is that the voice and needs of the patient become the center focus
of care: Patient [patient-centered care] needs are part of this model in
opposition to a pure medical model that prioritizes the disease. Patient-
centered care involves respect for patients' values, preferences, and
expressed needs as well as the involvement of family and friends in the care
and cure process, (p. 6)
While the focus and core values of continuity of care models are in syn
chronization with the terminal patient's needs and the trajectory of terminal ill
nesses, little research has been conducted on the impact of this model on the
current medical model of terminal care. One research effort was conducted in
Missouri that examined the AIDS case management program of the Missouri
Department of Health for the years 1988-1992. The researchers, Twyman and
Libbus (1994), gathered a random sample of complete case records of HIV/AIDS
patients who had died during the period 1988-1992. The overall purpose of the
study was to compare the use of inpatient hospital services for patients in the last
6 months of life and assess the degree of fragmentation in service provisions for
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each group of patients. AIDS was the reported cause of death for these patients,
and an almost equal number of patient records representing those who had been
under case management services (n = 100) and those who had not been under
case management (n = 99) constituted the experimental and control groups,
respectively. While the patients’ records were selected at random, the researchers
conducted comparisons along key demographic and disease specific variables and
determined there was no significant differences between the two groups. The
findings demonstrated no significant differences in hospital utilization by either
group and indicated that case management clients did not use fewer patient days
than clients without case management. The researchers concluded that case
managers who were not adequately trained in case management might, in fact,
utilize all available services. Utilization management would be a key part of their
performance, including hospitalization without considering cost and other implica
tions.
Another conclusion that could be drawn from this study is that case man
agement and continuity models, while focusing to a greater degree on patient/ client
needs, are still anchored to the medical model of care. This point was made by
Allen and Fleishman (1992) in discussing patient flow and referrals for services to
community-based home health service delivery models of care. These community-
based programs, which are forms of the case management/continuity models, offer
a full range of services including infusion therapy, social work, respite care, and
case management.
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In a survey of community-based service delivery agencies which repre
sented a significant amount of community-based care for terminal patients, over
two thirds of the 68 agencies interviewed reported that their main referral source
and treatment orders for patients with AIDS was from acute care medical centers
(Rosenheimer, 1990). The medical model of care continued to hold the access
to services, even with the advent of continuity of care models. These findings were
further amplified by a Robert Wood Johnson Foundation report (Weisfeld, 1991)
on its 11 funded community-based continuity of care and case management pro
grams in major U.S. cities like New York, Atlanta, Seattle, and New Orleans. In
reporting about the problems presented by the acute care system in treatment of
AIDS patients and their access to other than curative services, the summary essen
tially concluded that the case management approach encountered considerable
resistance by many traditionalists in the health care establishment. Providers
believed that they must give up control over decision making; sometimes they
objected to changing the focus of care from the acute to the chronic or community-
based setting..
While the case management approach attempts to link services in treating
the terminal patient, it remains in tied to the medical curative model of terminal care.
Case management/continuity of care models have taken a structural approach in
an attempt to make palliative and other services available to terminal patients. As
a structural approach, case management fails to alter the intent of the model of
care received by terminal patients. If terminal patients are to receive palliative care
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and gain appropriate access to hospice services, the intent of care provided will
have to include both curative and palliative attempts throughout the entire trajectory
of the diseases. In the final analysis, the intent of services must become inclusive
before provision of services become inclusive (Foley et al., 1995): "Defining and
understanding palliative care for persons living with HIV/AIDS has been a
challenge, as the divisions between curative/aggressive care and support*
ive/palliative care are variable and less well defined" (p. 19). This conceptualization
suggests that for more timely referral to hospice, palliative care must be added to
the intent of care provided by the current curative medical model of care throughout
the entire terminal phase of illness.
The trajectory model. The work of Corbin and Strauss (1992) has resulted
in the development of a Trajectory Framework, a recognition of the continuum or
progression of disease stages. The model is built on the recognition of the need
to accomplish inclusion of intents in the care provided terminal patients as well as
a linking of services. To date, however, the model has been explicated in theory
only and has not been tested empirically.
The trajectory model, which can be defined as a complete vision of the
illness course, suggests that as the illness/chronic condition progresses, treatment
requires the combined efforts of the affected individual, the family, and health care
practitioners in order to shape the course of the disease. Shaping the disease can
be seen as a combination of anticipating eventual outcomes, management of
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symptoms proactively, and the anticipation of disease-associated disability (Corbin
& Strauss, 1992). The model is built on a disease stage approach and requires
that both curative sen/ices and palliative services be considered at all stages of
treatment and provision of services.
The trajectory framework includes seven disease phases that require dif
ferent combinations of curative and palliative services. The phases are described
as (a) the trajectory onset—diagnostic period of the terminal illness; (b) crisis/life-
threatening events; (c) acute, active illness periods requiring active treatment;
(d) stable phases; (e) unstable, requiring hospitalizations; (f) downward, progres
sive deterioration requiring both curative and palliative care; and (g) dying—the im
mediate weeks and days before death, requiring primarily palliative services
(Corbin & Strauss, 1992). As described by Strauss et al. (1985), the nurse in the
acute care setting or primary setting of care assumes the position of the trajectory
manager working with the care system, family, and patient to help everyone
understand the phases of the illness and shape the trajectory of care for the
terminal illness. Strauss et al. described this process of trajectory shaping as
planting seeds in the care system. By "seeds," Strauss et al. were referring to the
counseling and psychosocial work the trajectory manager engages in helping the
patient, family, and physicians to continuously explore treatment options in relation
to the patient’s phase of illness.
The idea of the trajectory approach to terminal illness captures aspects of
the temporal phases of the illness; the work, the interplay of workers, and the
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nonmedical features of management of the disease along with relevant medical
ones (Strauss & Corbin, 1988). Patient-focused work in the trajectory model fo
cuses both on differing modalities and in differing sites of care: in the hospital and
at home. What the trajectory model offers, with its concept of coming from within
the medical model of care, is a methodology of expanding the intent of care for
terminal patients to have a blended focus on curative and palliative care. The
trajectory model offers the possibility that the inclusion of the palliative focus during
early phases of the terminal illness will permit utilization of hospice care earlier and
more appropriately during the end stage of the disease. The focus on the patient
with the disease, as proposed by the trajectory theory, would permit patients’ needs
and care to be considered in conjunction with acute curative services.
What needs to be achieved is a fuller definition of the trajectory manager
and a test of the trajectory model to assess its impact on treatment decisions and
referral to hospice care at the end stage of terminal illness. The trajectory model
still clings to the orderly progression of disease stage. This alone may trap the
desire to blended intents of care in the medical model's focus on waiting for distinct
shifts in the disease to dictate when certain focuses of care are to be utilized.
Blended intent model. A similar model of care to the trajectory model for
terminal cancer patients has been proposed for utilization by the Cleveland Clinic
Cancer Center in Cleveland, Ohio (Coyle & Portenoy, 1990). The philosophy of
the Palliative Care Sen/ice, as the model is called at the Cleveland Clinic, is based
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on providing integrated, multi-disciplinary continuing care for the patient and family
suffering advanced cancer. In essence, this is similar to that which has evolved
in hospice care.
The Cleveland Clinic Model is integrated into the inpatient clinic services and
offers symptom and pain management as an ongoing aspect of curative care; the
two intents are blended in the Cleveland model. Case management and assess
ments are carried out by both nursing and social work so that there is continuity
in the biological, social, and psychological aspects of care and treatment. There
is ongoing coordination in this model of both inpatient and HC experiences so that
continuity of the patient condition and patient needs is constant throughout
treatment. The Cleveland model is described as providing coherent management
that is essential for good terminal care.
The one gap in this model identified by the development team at the
Cleveland clinic is that coordination with HC services is still managed by the
hospital and maintained through the use of a 24-hour hospital service hot line for
patients. This type of model may well be suited for use by home agencies that see
and deal with terminal patients for longer sustained periods than do acute hospital
settings.
The Cleveland model may therefore may be more appropriate in the HC/
community settings. Additionally, Twyman and Libbus (1994) noted that "more
than one third of HIV/AIDS cases have no recorded inpatient hospital days in the
last six months prior to death, which could be seen as a reflection of expanded
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availability and use of home sen/ices" (p. 409). However, the model, while inte
grating intent and reflecting a palliative orientation, remains a part of hospital
services. Even with the multi-disciplinary approach suggested in this model, the
Cleveland Clinic staff has made it clear that they are part of the acute hospital
setting. As such, they have reported problems in coordination of community-based
care for their patients (Coyle & Portenoy, 1990).
While the models presented here have been designed to provide seamless
terminal patient sen/ice and, in many cases, make more hospice and palliative
services more accessible, a review of hospice admissions may reveal that these
models have had little impact on the use of hospice care and palliative services.
Hospice Admissions
There exists only a handful of studies that have looked at the decision
making process with regard to hospice referral. These studies have been explora
tory in nature and, for the most part, have been done as post mordems—after the
fact—through patient medical records and/or interviews with family members. Ad
ditionally, as is the case with the death and denying acknowledgment process in
general, these studies have specifically focused on the elderly, chronic cancer
patient and not patients with HIV/AIDS. Notwithstanding their limitations, they do
provide insight into the hospice referral process and, in a less direct way, the
terminal prognosis acknowledgment process.
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What the studies highlight is that referrals to hospice and the discussions
about patient prognosis are still significantly tied to the intent of the medical model
of service provisions. The studies further highlight how critical acknowledgment
of the terminal prognosis is to referral of hospice services. Acknowledgment of the
terminal prognosis is unlikely to be initiated in an environment where the intent of
care and the organization of services are continuously attempting cure and acute
intervention into the disease process.
The seminal exploratory work on the hospice referral and acknowledgment
process has been done by Gochman and Bonham (1988, 1990). In a set of
studies, they explored both the decision process of physicians in making a hospice
recommendation to patients (i.e., formalizing the acknowledgment process) (1988)
and the social structure of the hospice decision process (1990). The researchers
operationalized social structure with a framework of physician, patient, professional,
and lay caregivers, similar to the social interaction patient care system delineated
by Glaser and Strauss (1965). In the 1988 study, the work on the physician’s
decision process, two distinct phases or research were engaged in: a mailed
questionnaire followed by one-on-one interviews. The questionnaires were mailed
to all physicians in three Kentucky counties who engaged in direct patient care (849
physicians). Questions focused on awareness of hospices, referral to hospice, and
patients' choices with regard to hospice. Of the 849 physicians receiving
questionnaires, 385 responded (45%). Of those, only 11 physicians were excluded
from the study. While 93% of respondents reported that they were aware of
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hospice services in the areas where they practiced, slightly over half of them (53%)
reported having hospice discussions with their terminal patients whom they
considered appropriate for hospice services. In following up on the initiation
(acknowledgment) of the terminal prognosis to the patient and discussion of
hospice referrals with patients, physicians in this segment of the study reported that
approximately four fifths (83%) of those patients where the discussion took place
utilized hospice services.
In the second part of this study, a sample of physicians and lay caregivers
from the larger pool of the study were selected to be interviewed. This resulted in
a total of 150 cases being selected. Of those, 711 physicians and 142 caregivers
were interviewed regarding the reasons for selecting hospice as an alternative to
continued curative services. Thirty-three percent of the physician respondents
considered support in managing pain and symptoms as their primary reason for
referral to hospice, while caregivers selected manner of dying and the type of
nursing and medical care offered in hospice (35% each) as the basis for decisions.
Essentially this finding highlighted the fact that hospice was the last and latest
referral in the medical model of care when no further hope of cure or success in
acute medical interventions was possible. Additionally, both parts of the study
identified that the physician was the single most potent source about hospice
services. Missing from this study, however, was any exploration of the
’Physicians were involved in multiple cases.
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acknowledgment process with regard to terminal prognosis and under what condi
tions and circumstances physicians initiate/open the patient care dialogue about
hospice services.
The focus of the Gochman and Bonham’s (1990) second set of studies,
using the same sample and extending the interview data, was focused specifically
on the social structure of the hospice decision process. Interviews about the
hospice decision were directed at how hospice information was communicated, the
initiation of the hospice discussion, and participation in decision making. These
interviews were done shortly after the hospice decision was made; therefore, a
number of patients were available to be interviewed (N = 48). In addition. 150
caregivers, at least 1 from each case identified, was interviewed, along with 71
physicians. The acknowledgment questions in the interviews focused on the first
time hospice was considered, "who began the discussion . . . who else discussed
hospice with the patient before the decision was made?" (Gochman & Bonham,
1990, p. 20). Among the caregivers, patients, and physicians who answered the
question about who began the discussion, the modal response (54% , 41% , and
80%, respectively) was that the discussion was initiated by a professional outside
the patient's household who was also not a household caregiver. During the
illness, following diagnosis but after initial awareness of the existence of hospice,
caregivers and patients reported that information on hospice was provided by
physicians in 58% of the cases in which hospice was discussed and by nurses in
31% of the cases where hospice was discussed. Problematic in the reporting of
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results, however, was that the specific professional caregiver, who actually initiated
the acknowledgment process between physician and nurse is not identified. What
is interesting to note is that with regard to how patients and caregivers became
aware of hospice, the responses were friends and/or relatives (Gochman &
Bonham, 1990).
While actual verbalization of the hospice discussion process came from a
professional caregiver, acknowledgment of the patient's need for hospice was
reported by the patient to have taken place earlier than the caregiver discussion
about hospice. Patients reported this earlier communication to have been facili
tated by someone outside of the professional caregivers attending him/her. The
referral process in the majority of cases was not begun by a physician or nurse
involved with the patients. As theorized by Glaser and Strauss (1965), awareness
precedes communications and the acknowledgment process; formalization of
communications waits for a professional caregiver. This study highlights the fact
that the medical model of terminal treatment does not initiate the hospice referral
discussion.
As part of the interviews conducted, the researchers also asked for the
timing of all information that patients and caregivers received about hospice and
preformed logistic regression on timing of awareness before, before and during
illness, and the impact of timing on the actual hospice decision. Families (patients
and caregivers) who had heard of hospice prior to the terminal illness of the patient
but who received no additional "communication" during the illness were about 7
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times less likely to report considering use of hospice than families who received
information before and during the illness (Gochman & Bonham, 1990).
The body of exploratory work put forth by Gochman and Bonham began to
establish the existence of an acknowledgment process and the fact that awareness
is only the first phase in the acknowledgment process. Awareness only moves to
the stage of open communications when the acknowledgment is openly made by
the patient’s professional caregivers. In addition, the acknowledgment process
appears to be most effective when it takes place both at time of diagnosis and
again during the early stages of the terminal illness. Notwithstanding the impor
tance of acknowledgment, these studies further confirmed that the acknowl
edgment process is locked inside the organization of terminal care services.
Additional exploratory studies have been done with regard to the acknowl
edgment process (Hyman & Bulkin, 1990; McNeilly, 1994); but these studies, like
the predecessors, while validating the critical aspect of acknowledgment, failed to
explore the actual acknowledgment process and established the link between or
ganization of services/intent of services and hospice referral and terminal prognosis
acknowledgment.
What the research on the hospice admission does provide is a small body
of work that suggests the skills and competencies of hospice nurses and hospice
social workers are the skills required of caregivers to facilitate communications in
the terminal care process. Research conducted on both hospice nurses' and
hospice social workers' perspectives of care in general and terminal care has
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specifically been done by Hull 1990), Halladay (1995), Kruzich and Powell (1995).
McGinnis (1986), and Perkins and Joneson (1985) all points to the fact that these
professionals brought a unique perspective to the terminal care process that
uniquely qualified them to bring palliative intent into the curative care arena and
to act as transprofessionals, bridging intents and bridging the continuum of terminal
trajectories.
The Perkins and Joneson (1985) research highlighted the fact that in
comparison with acute medical facilities, hospice nurses focused attention on the
medical effects of patient care and the psychosocial qualities of patient experience
equally. However, through review of nursing entries into daily patient records,
hospice nurses focused almost 200% more on the nonmedical effects of patient
care over their counterparts in the acute hospital setting. It has been validated that
hospice nurses work with patients as part of their orientation in the bio-psychosocial
model of care, in both curative and palliative intent. As noted by Von Gunten et
al. (1995), in discussing the focus of hospice nurses and social workers dealing
with HIV/AIDS patients, the goal of care is to provide appropriate care, to relieve
symptoms and pain, and to enhance quality of life.
In the exploratory work by McGinnis (1986), 20 caregivers of hospice pa
tients who had recently died were asked in open-ended interviews to identify the
most helpful behaviors of nurses and social workers that contributed to the patients’
well-being and quality of life. Behavior categories were drawn from the content of
the interviews with these caregivers. The most useful behaviors identified by
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caregivers were the abilities (a) to teach the caregiver about signs of dying; (b) to
remain with the family and patient during difficult times; (c) to answer caregivers’
questions honestly, openly and willingly; and (d) to talk to the patient to reduce his/
her fears. These behavioral qualities could be characterized as facilitative qualities
between the caregiver, patient, and care system—or the very qualities that can act
as the facilitative catalyst in bringing about acknowledgment in the terminal care
process.
Similar focus in social work is demonstrated in Halladay’s (1995) work with
social work in general and Kruzich and Powell's (1995) work with regard to the
positive influence on the treatment process that social workers bring to nursing
homes. In similar interviews with caregivers after the hospice experience,
caregivers identified the fact that hospice nurses and social workers were perceived
as more caring, open, and attentive to the patient than their hospital counterparts
(Hull, 1990). Among the qualities that caregivers were able to describe that
distinguish hospice nurses from acute hospital nurses were the hospice nurses'
effective communication skills and nonjudgmental attitudes: T h e nurses take time
to talk to you . . . they start out talking to us and . . . Emotionally, like when things
happen, the nurses let you know what's going on and what to expect. .." (Hull,
1990, p. 67). What was identified by Hull's study participants was the hospice
nurse's ability to engage with the patient and patient’s family and to facilitate
communications and understanding. These are critical qualities, as already
identified, in facilitating the acknowledgment process within the patient care system.
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In hospice practice this acknowledgment is known as "anticipatory guidance"
(Anderson & MacEIveen-Hoehn, 1988):
Anticipatory guidance is one of the real strengths of hospice care. Staff

members believe that giving information early enough, at an appropriate rate
and at appropriate intervals will decrease stress. . . and provide the patient
. . . with a sense of mastery over information, (p. 43)
Regulatory Environment
Patients, physicians, caregivers, and other providers meet a web of
constrictive policies when utilizing regulations that impact the decisions of the
terminal care patient system. The constraints and implicit caution built into hospice
regulation by the Health Care Financing Administration (HCFA) are due to two
factors:
1. Hospice benefits were passed prior to the completion of the National
Hospice Study; and
2. The amended hospice regulations passed in 1982 were careful not to
create in hospice a competing health care system with the acute, curative system
(Mor & Masterson-Allen, 1987)
In order to utilize hospice services, patients must acknowledge that they
have 6 months or less to live and must assign their Medicare benefits to hospice
(hospice then becomes the patient’s intermediary with regard to all medical re
imbursement decisions and therefore care decisions). Patients are limited to a total
benefit of approximately $13,000, even though the time of care is unlimited.
Patients must opt for palliative care over curative care and must have a primary
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caregiver available to supplement their medical care (Martin, 1991: Mor &
Masterson-Allen, 1987). The creation of Medicare certified hospices in acute hos
pital settings makes it possible, however, for patients who do not have primary
caregivers in the home setting to elect hospice care (Mor & Masterson-Allen, 1985).
As pointed out by Butterfield-Picard and Magno (1982), the primary caregiver
criterion with respect to hospice admission is the most problematic criterion due
to the commitment a family member or friend must make to attendant care of the
patient, yet 67% of all hospices, whether home or hospital based, enforce this
criterion.
The admission criteria for hospice were built on a terminal cancer patient
profile of patients over 65 years of age in the final stages of terminal cancer
(Butterfield-Picard & Magno, 1982). This profile does not fit the profile of HIV/ AIDS
terminal patients, who are typically between the ages of 35 and 45 (Los Angeles
County Department of Health Services [LACDHS], 1995). Even though the hospice
benefit may have been designed for terminal cancer patients over 65 and available
to all eligible Medicare beneficiaries, the hospice benefit experiences limited use;
under 10% of eligible beneficiaries utilize the benefit annually (Scitovsky 1994).
Limited use of hospice care, in general, is tied to a number of the admission
criteria. As noted by Carney et al. (1989), the length of hospice enrollment declined
by an average of 20 days after the passage of the TEFRA legislation of 1982. It
is interesting to note that the decreases were experienced for patients both over
65 and under 65 years old. Camey et al. attributed this decline in utilization to the
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interaction of hospice regulations limiting patients to no curative services and the
assignment of the full benefits to hospice. Patients are forced to "work" the system
in order to preserve options and maintain control over their benefits with regard to
these regulations. Patients enroll and then disenroll in hospice in order not exhaust
their Medicare benefit if they feel that hospital services are required. As observed
by Camey et al. in their research," . . . if the patient was stable and comfortable,
the family may have chosen to withdraw from hospice for a period of time in order
to conserve eligibility" (p. 79). As a product of hospice eligibility criteria, terminal
case management becomes focused on benefit management as opposed to
patient-focused management. The management of benefits creates a context in
the medical management where sound case management means bridging the gaps
between services and not necessarily fitting patient needs and concerns with the
right type and level of care.
In addition to management between the curative and palliative care para
digms, patients must also manage between the provision of home care services
and hospice services. In the transition between the acute setting and the hospice
setting are home services that still preserve the patient's ability to receive curative
care. The differentiation in the medical model, supported by regulations and
reimbursement, dichotomizes services to reduce costs with unintended conse
quences. Both Camey et al. (1988) and Rosenheimer (1990) reported that many
terminal patients delay their selection of hospice until their home care benefits are
completely exhausted. Home health curative services enable hospitals to shorten
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lengths of stay in curative care while preserving their right to the provision of
curative care. This makes home health curative services an add-on cost to hospital
care rather a substitute (Rosenheimer, 1990).
Unfortunately for patients, the home care curative benefit is restrictive with
regard to multi-disciplinary care and limits access to social work and other psy
chosocial terminal care that are the cornerstones of palliative terminal care (Ros
enheimer, 1990). In addition, hospital-controlled home health services cost more.
Cost containment provisions in TEFRA encouraged hospitals to vertically integrate.
Many hospitals started their own HB home agencies. Because of add-on amounts
allowed hospitals, each home visit costs Medicare several more dollars than would
be so with free-standing home care (Rosenheimer, 1990).
AIDS patients confound the current hospice regulations and reimbursement
formulas that enforce hospice and home health regulations. While the underlying
immuno-suppression of AIDS is not curable, many opportunistic infections can be
cured. Hospices, therefore, may have patients appropriately receiving curative
treatments for palliation (i.e., symptom and pain relief) (Grothe & Brody, 1995).
Curing certain conditions underlying the diseases that are AIDS may very well be
palliative (Grothe & Brody, 1995; Martin, 1991). Current regulations limiting access
to hospice service and palliation put AIDS in direct conflict with the intent and focus
of terminal care for this disease. Only the research of Camey et al. (1989), which
studied the hospice referral and care patterns for Medicare patients (N = 307) prior
to the 1982 TEFRA regulations and after, 1984-1985, demonstrated the decline
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in utilization of hospice services because of the impact of regulations and reim
bursement. This study, however, did not look at the interaction of AIDS, its unique
care needs, and the current regulations and reimbursement.
Reimbursement and regulations that must be managed by patients, care
givers, and professionals are complex and, in many circumstances, force a
dichotomy in the intent of terminal care services. Current regulations and reim
bursement have a significant impact on the referral of AIDS patients to hospice and
on the terminal prognosis acknowledgment. Palliative intent of services, now
trapped within the hospice decision, are delayed until curative benefits and home
service benefits are exhausted. In the final analysis, regulations currently sen/e
to solidify the medical model of care with benefits and policies that maintain
dichotomies in service delivery.
Costs of Terminal Care
The high cost of terminal care permeates the literature with regard to
reforming the model of care for terminal patients. Cost has been the driving force
for this country in the search for different models of terminal care for 2 decades.
With the initiation of the National Hospice Study and demonstration project un
dertaken between 1980 and 1983 under the auspices of the HCFA and the Robert
Wood Johnson Foundation, decisions that affect formalization of hospice care for
terminal patients were predicated on the cost reductions achieved by hospice care
versus conventional terminal care.
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The focus of the National Hospice Study and demonstration project, as well
as follow-up research, has exclusively been on the comparison of hospice costs
versus CC costs at the last stages of terminal illness. Essentially, studies have
taken the hospice philosophy and put it to a series of tests against end stage
terminal care provided under the medical model in acute care inpatient hospital
settings. As delineated by Mor and Masterson-Allen (1987), "the hospice cost
philosophy provides a noncompetitive alternative to conventional [cancer] care
which would essentially reduce reliance upon expensive ancillary tests . . . and
reduce the number of days of inpatient care by substituting home services" (p. 186).
Inclusive of the National Hospice Study, there were 30 studies conducted
in the "decade of terminal care testing," 1981-1986, designed to answer three
hypotheses as delineated by Greer et al. (1986):
(1) What is the difference between hospice and conventional care; (2) what
is the differential impact of hospice and conventional care on the quality of
life . . . ; (3) What is the impact of hospice on health care costs incurred by
terminal patients? (p. 10)
Of the 30 studies that were conducted, the majority focused on cost of care. It
should be noted that a smaller number of follow-up studies have been done on the
costs of hospice to continue to validate the National Hospice Study findings that
home-based hospice care consistently is less costly than conventional terminal
care (Lewin-VHI, Inc. & National Hospice Organization, 1995; Scitovsky, 1994).
122
Empirical Research on the Costs of

Terminal Care
The National Hospice Study was a quasi-experimental design, taking cancer
patients who were Medicare Part A- and Part B-certified from three terminal care
settings: HC Hospice, HB Hospice, and CC. Conventional care denoted hospital-
controlled HC services. Conventional care patients spent a portion of their time
in home-based care and experienced home visits just as the other types of patients
spent a portion of their time in acute care settings. The designation of sites should
be seen, although not highlighted by the researchers, as the intent of the systems
of care, either curative or palliative models.
There were a total of 5,883 patients in the study with a primary diagnosis
of cancer. Of these, 3,641 patients were cared for in the HC setting; 1,654, in the
HB setting; and 588, in the CC setting (nonhospice settings). These patients re
ceived care in 25 demonstration hospices, 14 HC hospices, and 11 HB hospices.
In addition, 14 nondemonstration hospices were included in the study: 6 HC
hospices and 8 HB hospices. All participants in the study were selected competi
tively from over 200 interested applicants by the HCFA. With regard to length of
stay on hospice, 50% of the study population had lengths of stay less than 35 days;
20%, lengths of stay of a week or less; 8% stayed in hospice over 90 days; and
10% were discharged from the service alive. Cost samples for the study included
complete costs for demonstration project Medicare patients admitted at the
beginning of the study's operationalization on October 1, 1980. Costs were
123
reported in 1982 dollars and were taken from the Medicare bill history file inclusive
of total inpatient costs, ancillary service charges, home service costs, and physician
costs (Birnbaum & Kidder, 1984; Greer & Mor, 1986; Greer et al., 1986; Mor &
Masterson-Allen, 1987).
Several research groups published reports from the National Hospice Study
prior to the completion of the study and as follow-ups to it. The sponsoring gov
ernmental agency for the project, the HCFA, supported legislation authored by U.S.
Congressional Representative Leon Penetta (D-CA) and Senator Bob Dole (R-KS)
to establish hospice as a Medicare benefit in 1981 (Mor & Masterson-Allen, 1987).
The bill was based on preliminary data from the study gathered by the Con
gressional Budget Office that showed a savings of $1,120 for each new hospice
user. The hospice service became a Medicare benefit in 1982 with the passage
of TEFRA in 1982; the hospice benefit had passed the cost test prior to completion
and final analytical work of the study results (Mor & Masterson-Allen, 1987). It
should be noted that in passage of TEFRA regulations concerning hospice, no
distinction was made between HC-based hospice and HB hospice, services even
though the most substantial savings and for longer periods of time prior to death
were achieved by hospices without inpatient beds (HC hospices) (Aiken, 1986).
The conclusions of those studies, which utilized data from the National
Hospice Study, consistently found that the hospice saves money over nonhospice
care in the 6-12 months preceding death; "Careful analysis . . . reveals that
hospice-no hospice is the dominant effect" (Greer & Mor, 1986, p. 21). As reported
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by Mor and Kidder (1985), "in the last year of life, unadjusted for differences in the
samples, the home care hospice patients averaged $10,798, hospital based
hospice patients averaged $12,698, and conventional care patients averaged
$14,799" (p. 413). Greer and Mor have broken these total numbers down to
average cost per day and calculated that total costs per day for the study indicate
that HC hospice patients costs were $101 per day; HB hospice patient costs, $146
per day; and CC patient costs, $149 per day (p. 19). In all three reports, the
findings were reported to be produced by two effects: substitution of inpatient
hospital days in hospice versus conventional care and the reduction in ancillary
services for hospice patients versus CC patients (Bimbaum & Kidder, 1984; Greer
& Mor, 1986a; Mor & Kidder, 1985). The longer patients remain in hospice care,
the higher the costs in the last year of life. The closer the total costs are to CC
costs, the differential in savings disappears (Mor & Kidder, 1985). This is due in
large part to higher use of inpatient acute care hospital days.
Making a closer examination of this issue, Bimbaum and Kidder (1984)
reported comparisons between the two types of hospices, HB and HC, and dis
covered that HC hospice was nearly $ 1,000 less on the average per patient for the
entire hospice episode compared to HB hospices. This overall saving is achieved
by virtue of the fact that HB hospice patients receive 4 times more inpatient acute
hospital days than HC hospice patients. Reported by both groups of researchers
was the fact that for lengths of stay greater than 2 months, the HB hospices lost
their cost advantages compared to CC, while HC hospices sustained the difference.
125
Among all the studies, the only note on pre-hospice characteristics, that
suggests introduction of a palliative philosophy into the care process before actual
hospice admission were made by Bimbaum and Kidder (1984). These researchers
noted that to understand the differential between hospice type costs, a study of pre
hospice patient service utilization may be warranted. Their inference was that work
with patients' pre-hospice admission may have something to do with the shaping
of the disease trajectory and future service utilization. Their reference would
suggest that changing the intent of the curative model of care by including pre
hospice palliative intent may be a critical factor in sustaining cost reductions
throughout the entire episode of care.
Thirteen additional studies on comparisons of hospice and CC costs were
made during this period with similar results to those of the National Hospice Study.
The vast majority of the studies involved small samples of cancer patients, were
quasi-experimental in nature, with the groups divided between hospice and non
hospice patients (Mor & Masterson-Allen,1987). The post-hoc nature of these
studies highlights the problems with cost research on end-stage care. There exists
limited research on patients as they move through the terminal care systems, and
no studies exist that deal with the effect of models of care on costs and decisions
prior to hospice selection.
Savings reported between hospice and nonhospice patients for periods of
care before death averaging between 3 months and 2 weeks were between 100%
and 900% lower costs in hospice care versus nonhospice care (Mor and
126
Masterson-Allen, 1987). Only one of these studies, a small sample of Veterans
Administration (VA) patients, was a randomized design that assigned patients to
either a HB VA hospice, HC hospice, or to CC. The HC hospice program was.
however, was heavily linked to the hospital and offered patients access to
admissions to the hospital at any time. The study utilized 137 CC patients and 110
hospice-assigned patients who received both inpatient and home hospice care
under the auspices of an inpatient unit. Patients were followed until death in all
cases (Kane et al., 1984). Costs and quality of life measures, inclusive of pain,
were monitored for all patients. Costs of care, which were inclusive of all costs
considered in the National Hospice Study, resulted in almost similar costs for the
entire episodes of care for hospice patients and control patients. Hospice patients'
costs, inclusive of inpatient days, were between $15,262 and $17,770 versus CC
costs of $15,493; the differences were not statistically significant. Other variables
measured also showed no statistical significance between the groups. The re
searchers concluded that hospice choice should therefore become a matter of
personal choice, since costs were not significantly different with regard to treatment
type.
What the researchers inadvertently established was a similar distinction as
the one made in the National Hospice Study between home-based hospice care
controlled by the inpatient setting and hospice provided and sponsored by the
inpatient setting. Again, the intent of the system throughout the care process may
well be the major factor in determining overall cost of care. As suggested by
127
Bimbaum and Kidder (1984) in their discussion of pre-hospice care shaping the
costs of the latter stages of care, this study may further demonstrate that site or
location of treatment is not the critical variable in studying costs. In fact, system
intent may well be more meaningful in understanding terminal care costs. This
point is only peripherally made in the studies cited here and requires that a
distinction be made between type of service and the intent of the system offering
that service as a focus of study (Kane et al., 1984).
The diversity among hospice auspice and structure requires an examination
of the intent of care—whether intent is purely curative or inclusive of palliative con
siderations. This focus may provide more meaningful understandings with regard
to terminal care costs. Following the National Hospice Study, subsequent studies
made with regard to hospice costs versus nonhospice costs have continued to
validate earlier findings on this subject. A study sponsored by the HCFA, con
ducted in 1988-1991 and using similar methods to the National Hospice Study,
showed that for this 3-year period, Medicare saved approximately $1.26 for every
$1.00 spent on hospice care and that savings were a result of the substitution of
services between home and hospital in the last month of life (Scitovsky, 1994). In
a much larger study conducted by Lewin-VHI, Inc. and the National Hospice Or
ganization (1995), 191,545 Medicare beneficiary records, both Part A and Part B,
for persons who died between July 1 and December 31, 1992 were reviewed.
Their claims were for the 2 years prior to death: January 1, 1991 through De
cember 31,1992. All beneficiaries who had one or more hospice claims during this
128
period were considered hospice users, and those with no claims were considered
the comparison group or non-users. In the final analysis of the sample, hospice
users cost Medicare $2,737 less than non-users over the 12 months preceding
death. The most significant cost saving differences were seen, in ascending order,
in the 60 days preceding death and in the last month of life: last month of life costs
were 100% less for hospice users over nonhospice users. The major area of cost
savings in this study, consistent with the majority of similar research efforts, was
in Part A expenditures, hospital costs.
This study raises an interesting issue—that while the findings of hospice as
a lower cost alternative to CC are sustained, these savings may in fact be
underestimated. As pointed out by Brooks and Smyth-Staruch (1984) in a hospice
user and nonhospice user research effort in Ohio, classification of user and non
user categories may in fact understate savings from hospice care earlier in the
terminal process, i.e., periods beyond 60-180 days before death:
This general comparison [classification of hospice users and non-users] is

problematic, however, in that a ll. . . hospice patients are assumed to be on
hospice care the entire 24 weeks of life [preceding death, the time period
of their particular study]. Quite the contrary, 51% of the hospice patients
were served by a hospice program less than 4 weeks, (pp. 695-696)
When the researchers in this study adjusted costs to reflect only actual days of
service spent on hospice by patients, it was discovered that 77% of the costs
actually occurred before hospice care was selected. Notwithstanding this problem,
patients who used hospice services in any duration were considered hospice users
and their costs were considered to be hospice user costs. This same problem
129
exists in the 1995 National Hospice Organization study cited above, with a single
hospice claim being classified as full hospice use regardless of when the service
actually began. A review of the National Hospice Study research project
classifications of hospice users and non-users is not discemable, and this problem
may exist in these studies as well. The implication of this issue is that cost savings
may be understated and that the true impact that palliative care may have on the
terminal care system is likewise underrepresented. Given this potential problem,
it is difficult to ascertain the degree that the intent of terminal services has on the
overall cost profile of end-stage care.
The cost studies which profile a distinct difference between the cost of
hospice services and conventional services are consistent in their findings but
present several significant problems. Only one study (Kane et al., 1994) used a
randomized design, and that study only compared a HB hospice service to CC.
While the remaining studies distinguished between the three types of existent hos
pice services, the CC groups were comparison groups. Significant selection bias
with regard to patients may have existed, thereby confounding results as was
pointed out in the Lewin-VHI and National Hospice Organization study (1995).
Even beyond these issues, what remains is the definition of a hospice user
versus a nonhospice user, as discussed above. If a hospice claim signifies a
hospice user and all costs for that hospice user are applied in the cost analysis,
a question is raised with regard to results. In this circumstance, the impact of
palliative/hospice care is negligible, with only a slight impact on cost being
130
produced by the very late admissions to hospice. This type of problem regarding
criteria would certainly explain why hospice and nonhospice study results
consistently show significant savings in the last 2 months before death and savings
almost disappearing in the 6- to 12-month period before death. In addition, this
problem suggests that the impact of palliative intent on the terminal care system
is not being observed, when in fact it may have influence earlier in the care process
until the hospice admission is actually made.
The average length of stay in hospice nationally is approximately 30-45 days
(Brooks & Smyth-Staruch, 1984; and Mor & Kidder, 1985). This average length
of stay coincides with the periods of significant savings in the majority of hospice
studies. The issue raises another significant problem with regard to the attributes
of hospice and palliative care that produce saving over CC. In relegating the study
of hospice savings to the last 30-60 days of life, cost savings are demonstrated by
substituting inpatient acute care for home care. This portrays hospice as limiting
patient care choice and, in fact, might be perceived as relegating patients to less
intensive forms of treatment. As portrayed by Anderson (1988), recently developed
models of hospice care are not about restricting choices but about balancing
patients' needs and caring and curing—or palliative intent. A significant comparison
not permitted in current study samples is to compare the application of both
curative and palliative intent throughout the entire episode of terminal care versus
the conventional model of curative oriented terminal care.
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In addition to the issues raised here, the studies presented, including the
Kidder (1992) study and the Lewin-VHI and National Hospice Organization study
(1995), have almost exclusively used cancer patients as study subjects. Of the 16
studies collected by Mor and Masterson-Allen (1987), all studies used cancer
samples. Both Corbin and Strauss (1992) and Martin (1991) pointed out that HIV/
AIDS does not fit easily into conceptualizations of hospice care based on cancer
models.
The State of the Current Research: A Synthesis
The literature review has demonstrated what is known from the research
and where gaps exist in our understanding of end-stage palliative treatment and
hospice services. Evidence thus far supports several conclusions that will be
delineated in this synthesis. The key concepts affecting end-stage care are (a) the
intent of medical care services, (b) the acknowledgment of the patient’s terminal
prognosis, (c) costs and quality of life issues, and (d) the existing models of care
for terminal HIV/AIDS patients. A final chapter presents the proposed model of
care that was evaluated in this research effort: the Transprofessional Model of
Care for End-Stage HIV/AIDS patients.
Intent of Terminal Care Services
The intent of treatment and service delivery is a critical factor in determininn
th em ixcf curative and palliative services. The "do something" perspective, aimed
at forestalling death but resulting in limited communications between physicians
132
and patients about the terminal prognosis and hospice services, accurately portrays
the current intent of terminal care services (Crane, 1975; Foley et al., 1995: Glaser
& Strauss, 1965 1968; Starr, 1982). The effect of this intent is that terminal patients
are subjected to invasive, diagnostic, and surgical procedures up to and inclusive
of the last 2 weeks of life (McCall, 1984; Greer & Mor, 1986; Seale, 1991).
The intent of the medical model is summarized well by Crane (1984) and
Solomon (1994), who reported that physicians, even though they do not support
acute interventions when a patient is close to death, respond to peer pressure and
utilization review scrutiny by doing everything possible. The patient then experi
ences a great flurry of activity until all "do something" care is exhausted and then,
in the last weeks of life, is finally referred to hospice. The patient drops from
hopeful signs of active treatment to a state of hopelessness and then, with little
preparation, must begin confronting the terminal prognosis (Foley et al., 1995).
In the final analysis, even hospices are dominated by the medical model.
While the hospice care philosophy is one of attention to the whole person and a
focus on the psychosocial, 50% of hospices are located in acute care hospital set
tings. As established by Levy (1982), acute care facilities sire threatened by the
hospice concept, fearful of the notion that hospices affiliated with hospitals will
"tarnish" a hospital’s reputation as a healing place. As a consequence, acute care
facilities monitor and control admissions to hospice care and palliative services.
It is further understood, as posited by Freidson (1970b), that the medical
model controls patient referrals and access to treatment. Foley et al. (1995)
133
recognized in their blended intent description of end-stage care that making the
intent of end-stage care inclusive of both curative and palliative consideration would
change the current practice of terminal care. However, the means to make
inclusive intent a reality for patients is missing in the literature.
While a considerable amount of research and theoretical frameworks exist
with regard to hospice admissions and palliative service utilization, a clear under
standing of how to make accessibility to hospice services and palliative care
happen is not provided. Throughout the terminal care process, the critical issue
in achieving an earlier hospice admission in terminal care, or at least more
appropriate use of palliative services, is clarity with regard to intent of sen/ices
provided and facilitating communications with patients about the terminal prognosis
(acknowledgment). These two factors appear key in utilization of palliative care,
yet both the intent and models of care (organization) of the medical model of care
make this accomplishment seemingly impossible.
Acknowledgment
The referral and the admission to hospice depends on acknowledgment of
thelerminal prognosis by the physician, the patient, and significant others. Open
acknowledgment of the terminal prognosis by patient, professional caregiver(s),
and significant others allows the integration of palliative intent and eventual hospice
referral into the final care plans and treatment decisions (Glaser& and Strauss
1965,1968). Patients who are aware of their terminal prognosis are 7 times more
134
likely than patients who do not openly confirm the terminal prognosis to seek
hospice referrals (Prigerson 1991).
Research on the initiation of the terminal prognosis confirms that acknowl
edgment typically does not occur (Kubler-Ross, 1969; Weisman. 1972). Patients
are often provided limited communications about the terminal prognosis by
physicians (Bedell & Delbanco, 1984). Advance directives research also demon
strates that while they are potentially useful for initiating patient and physician
discussion of the terminal prognosis, physicians frequently ignore advance direc
tives and rarely are use them in communications between themselves and patients
(Danis et al., 1991; Emanuel et al., 1991; Schneiderman et al., 1992).
Persons outside the care system of the patient are generally identified as
those that most often initiate the discussions about utilization of hospice services
(Gochman & Bonham, 1990). Corbin and Strauss (1992) and Strauss (1988) pro
vided a description of a trajectory manager who would help the patient and care
givers shape the course of end-stage treatment. Makusch (1975) discussed a
transprofessional professional caregiver to bridge communications between
professionals and patients in the terminal care process. Regardless of how com
munications eventually transpire, researchers, while credencing the importance
of acknowledgment, have provided little evidence on how to enable acknowledg
ment.
135
Costs
Hospice admissions produce lower costs in end-stage care. Hospice is less
costly than CC during the last months of life care due to the substitution of hospital
days for HC days and the prohibition of curative modalities of care (Greer & Mor.
1986; Mor & Masterson-Allen, 1987; Scitovsky, 1994. While establishing hospice
as a lower cost alternative, hospice also appears to be, as a product of study focus
and results, a place where less care is provided. It is little wonder that hospice is
utilized by only 10% of terminal Medicare patients who are eligible (Scitovsky.
1994).
When pre-hospice, palliative-like services were received by patients, costs
of care throughout the terminal care episode were lower than for conventional,
medical model, care patients (Bimbaum & Kidder, 1984). In other words, the intent
of sen/ice provision may well impact costs throughout the entire care episode as
opposed to just the last months of life when patients are admitted to hospice. This
point is not followed in any other research and is a gap in an area like terminal care
that is so dependent on the nature and intent of service provision.
The absence of random assignment in over 90% of hospice cost studies is
a major flaw in the cost research literature. Secondly, the cost studies utilize the
hospice and nonhospice distinction and base findings on the substitution of service
provision. No studies have credenced the comparison of a palliative focused model
of care and a conventional model of care. In other words, studies have included
contamination on the hospice side inasmuch as all patients were treated in the
136
conventional model of care until hospice was elected. In addition, the HC service
venue, which is where patients receive a majority of their care, has been
aggregated in the majority of the studies. What is proposed here is a cost study
which looks at groups in alternative models of care and in the HC venue. This
portion of the terminal care process, i.e., home services, needs to be explored and
expanded. Services in a conventional model of care and palliative model need to
be compared and evaluated. Costs critical in this venue but not addressed specif
ically in the literature include visits, supplies, equipment, and drugs. These costs
need separate examination instead of being aggregated as they have been under
current cost research.
Quality of Life
Quality: of life has been relegated to the constructs of pain and physical
symptoms. Its role as a construct in the terminal care process is under developed.
Quality of life issues may be more effectively utilized in evaluating the care process
as perceived by patients (Albrecht & Fitzpatrick, 1994). In order to achieve this,
however, Cleary et al. (1994) suggested that a model linking quality of life as
defined by symptoms, pain, and emotional domains be tested during the care
process. The development of quality of life as a proactive measure of a patient’s
perception of care is a major gap in the current research in terminal care. As a
consequence, this research effort has focused on an exploratory investigation to
correlate quality of life issues with the patient’s terminal care.
137
Models of Terminal Care Services
There exist three distinct models of care that have been conceptualized to
provide terminal care. The models have not demonstrated the potential to blend
curative and palliative intent in the end-stage care process. As was highlighted in
the literature review chapter, three models of service delivery have been espoused
with regard to reforming end-stage care for terminal HIV/AIDS patients.
1. Model 1, the continuity of care models that incorporate case managers
as the facilitating link between patient needs and the system, have proven not to
be effective in reforming the intent of the system. While the models link services,
the intent of care remains focused on the disease and not necessarily the patients.
Costs in this model is as high as in conventional care (Twyman & Libbus, 1994).
The Robert Wood Johnson Foundation’s research (Weisfeld, 1991) on continuity
models indicates that case management for patients becomes a battle over serv
ices and not necessarily the intent of services.
2. Model 2, offered by Corbin and Strauss (1992), presents a trajectory
model of care based on disease stage. This model links the patient’s experience
with the terminal disease by using a nurse to help shape disease course throughout
the trajectory. As reported by Corbin and Strauss, however, is that this model may
not be applicable for HIV/AIDS. The model is not presented with any empirical
research, nor are the competencies of the nurse manager in the role of disease
shaper delineated.
138
3. Model 3, developed by the Cleveland Clinic, is a blended model of
palliative and curative services are discussed by Coyle and Portenoy (1990). This
model places palliative care in the midst of curative services in the acute setting
of the Cleveland Clinic Hospital. While the notion of blended intent of services is
established, there is no empirical evidence of the model's effectiveness. In
addition, there is no articulation with regard to how the model operationalized.
The notions of Corbin and Strauss (1992) and the Cleveland Clinic model
provide promise in articulating a blended intent model. Gaps, however, exist with
personnel who operationalize the model’s intent and how issues like acknowledg
ment and patient and physician communications about the terminal prognosis are
facilitated. A transprofessional, bridging intent in the terminal process, was offered
by Makusch (1975) as a concept but has not been operationalized.
In summary, the models of care have been conceptualized to provide both
palliative and curative intent into the terminal process; but how this is to be
accomplished and by whom is not articulated. Rgure 3, adapted from the work of
Foley et al. (1995), suggests that the three models of care attempt to move the
terminal care process from dichotomizing curative and palliative to blending these
intents. The gap that exists in this movement is that no model has been conceived
that describes the means of achieving this outcome in the care process and
ultimately providing how this will model will impact hospice utilization. The con
ceptualization suggests movement from curative to palliative along the end-stage
139
C U tfiv e O ntivc
latent
PaUia&re
btest
,, i Months to Death.
Months to Death
18...................... 12......................... 0 18....................... 12
Rgyrg.3. Conceptualization of the shift in terminal care intent. Adapted from "Aids
Palliative Care: Changing the Palliative Paradigm," by F. J. Foley, J. Flannery, D.
Graydon, R. Flintoft, and D. Cook, 1995, Journal of Palliativp Harp 11 p \ p. 19.
140
disease trajectory—currently, as separate modalities and in the future with reform
of end-stage services, as blended modalities.
The gap in knowledge , however, lies in the protocol for implementation.
How does one design and deliver a blended intent of terminal care as depicted
by Foley et al.? A well specified model of care which combines both curative and
palliative intent is needed. A model of care is needed that can facilitate and
enhance communications between the patient and the care system. This model
of end-stage care is not currently available in the models presented here. A model
that can accomplish more appropriate utilization of palliative services and affect
more timely use of hospice must be based on the importance of terminal
acknowledgment in the care system and in blending curative and palliative intent
as an ongoing treatment process.
The process of acknowledging the terminal prognosis is critically dependent
on the actions of physicians and other professional caregivers engaged in the
treatment of the terminal patient. Critically important, however, in this process is
the understanding that not all physicians and nurses choose to act as the catalyst
in initiating the acknowledgment process.
The Transprofessional Model of Terminal Care:

Combining the Intents of Terminal Care and
Facilitating the Terminal Acknowledgment
Process
As suggested in the research of Gochman and Bonham (1988,1990), dis
cussion of the terminal prognosis and alternatives to care are often initiated by a
141
professional caregiver outside of the terminal patient’s immediate family or social
network. Most often this is either a physician or a nurse. Further validated by the
work of Glaser and Strauss (1965) and Gochman and Bonham (1988) is the fact
that the acknowledgment process, even when awareness exists in patients of their
terminal prognosis, is not formalized until the professional caregiver, most likely
the physician, initiates the acknowledgment of terminal prognosis discussion. Both
the current intent of terminal care, a curative focus, and the lack of communication
facilitation with regard to the terminal prognosis converge to make the utilization
of hospice care or the provision of palliative care an unlikely event during the
terminal illness phase of treatment. Current proposals to introduce palliative intent
into the terminal care system and to facilitate the terminal prognosis communica
tions process either have not proven to be successful or have not been tested.
If introduction of palliative intent as an integral part of the care process for
terminal patients were the prime determinant of use of hospice care and palliative
services, then any nursing professional with experience in terminal illness might
be appropriate for this role. But the presence of palliative intent and more specif
ically the awareness of palliative care and hospice services has been shown to be
insufficient to initiative the acknowledgment of the terminal prognosis—a key
determinant of the use of hospice care and palliative treatment. As a consequence,
in order for a trajectory manager to achieve success in facilitating the acknowledg
ment process, it is essential for that individual to have the perspective of the nurse
with regard to death and dying and palliative care. Therefore, this nurse, with an
142
overall understanding of the patient’s in-hospital and home/community experiences
(service and condition continuity focus), needs to be an HC nurse case manager
and, more specifically, a hospice-trained nurse working as a case manager in the
home care setting—a nurse with the blended competencies of curative care and
palliative care, i.e., the transprofessional.
Studies cited in the literature suggest that the transprofessional role can be
staffed by utilizing the professionals who currently are trained and work in the
hospice environment: hospice nurses and social workers (Hull, 1990; Kruzich &
Powell, 1995; McGinnis, 1986; Perkins & Joneson, 1985). This model is
conceptualized in Figure 4. The conceptual model suggests that the transprofes
sional model, which offers blended intent to care and a focus on curative and
palliative care, will impact directly the patient's acknowledgment of the terminal
prognosis. This acknowledgment will lead to more timely utilization of hospice.
The key to unlocking utilization of hospice services in a timely way is a model that
is oriented to the bio-psychosocial issues of the patient’s disease.
Cuutlve
-► Acknowledgement ► Hospice .
/W K a iw e
Intent ofCare
Figure 4. The impact of the transprofessional model

of care on end-stage outcomes
143
Proposed Model of Care to be Tested
The transprofessional model, with a hospice-trained nurse acting as a
patient case manager, supported by social work, should provide continuous support
in the care of the terminal patient from time of admission to home services until
death, introduce palliative intent into the care system, and facilitate the acknowledg
ment process of the terminal prognosis. This approach also adds a multi
disciplinary approach to terminal care, which is one of the hallmarks of hospice care
and a clear methodology employed by hospice service to alter the intent of care
from having a singular gaze. In addition, this transprofessional caregiver model
provides both continuity of service and continuity of patient status, both of which
are critical aspects of any model of care attempting to bring acknowledgment and
concern for patient care issues into the terminal care process.
The model can be described as having the following at its core:
1. A nurse and social work team act in the capacity of case management.
2. The team has training in both skilled curative services and hospice
services.
3. The case management team remains a constant in the patient’s care
from home health referral through the dying process in hospice.
4. The team is responsible for delivery and coordination of services.
5. The team conducts case conferences on a weekly basis with physicians.
This model is expected to bridge the gap between curative and palliative in
tent in the terminal care process and to add to everyone involved in the treatment
144
of the terminal patient the critical understanding of the disease trajectory that will
facilitate the acknowledgment of decisions to be made in the patient’s care.
Further, this model should bring the patient's concerns into focus with regard to
care decisions, thus further facilitating the acknowledgment process with respect
to discussions of palliative care and hospice services.
According to Anderson and MacElveen-Hoehn (1988), persons with HIV/
AIDS do not fit the standard model of hospice care or fit the criteria for palliative
services only during the very end stage of the disease: T h e person with AIDS
often needs the kind of comprehensive care management services which are
characteristic of hospice programs long before the last six months of life" (p. 42).
Therefore, with regard to intent, acknowledgment, hospice admission, and costs
of service, the following hypotheses are made:
H i. The transprofessional model of care will demonstrate a blended intent
in services provided to patients versus a singular intent of care evident in the
conventional model of care. Blended intent will be measured by the presence of
a multi-disciplinary approach to HC services and progress notes on patient care
issues. The transprofessional model will produce progress notes by nurses and
social workers that acknowledge both biological as well as psychosocial issues to
a significantly greater extent than the notes of nurses in the conventional model
of care.
H£. The transprofessional model of care will ensure that the acknowledg
ment discussion, openly stated awareness of the terminal prognosis, as reflected
145
in patients' medical records, will occur more often than in the conventional model
of terminal care. The expectation is that patients in the transprofessional model
will acknowledge their terminal diagnosis with significantly fewer days of HC service
and significantly earlier in the disease treatment process than participants in the
conventional model of care.
Given the attributes of hospice nurses and social workers as identified in
the research, facilitation of the acknowledgment process should be an integral part
of the competencies about death and dying that these professionals bring to the
terminal care process. Further, the transprofessional model should be dem
onstrated to be the single most influential factor in bringing about the acknowledg
ment process.
H3- The transprofessional model of care will generate a longer length of
stay on hospice—more days on service—than current traditional models of terminal
care as measured by the hospice admission and days on home services.
This means that hospice admissions should occur earlier in the terminal
treatment process for transprofessional model of care patients than it does for
conventional model of care patients. The transprofessional model of care should
be the largest single contributing factor to the hospice admit.
H4. The transprofessional model of care, utilized throughout the terminal
phase of treatment, beginning with a patient’s admission to skilled HC services, will
produce lower costs in visits, supplies, equipment, and pharmaceuticals for the
entire period of care from admission to death than the conventional model of care.
146
The multi-disciplinary approach of hospice intent should place focus on both
medical and psychosocial considerations in managing the patient's conditions. As
a product of this blended focus, solutions and regimens of care will not singularly
consider purely medical interventions in patient problem resolutions. This should
result in lower supply, drug, and equipment costs. In addition, the multi-disciplinary
approach should put additional caregivers into the patient visit equation; and the
patient work would be distributed between nursing and social work. Better bio
psychosocial management of the patient should result in fewer visits as the
patient's conditions are fully and adequately managed. Nursing visits now are often
the product of delivering medical services without time for patient comfort work.
As a consequence, additional visits are required to tend to the patient's psychoso
cial needs. The blended intent of the transprofessional model should make both
psychosocial and medical issues prevalent in every patient encounter.
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CHAPTER 4
STUDY METHODOLOGY
Study Overview
The data for this research were drawn from a 3-year Ryan White Care Act
Title 5 funded demonstration project awarded to the Visiting Nurse Association
of Los Angeles County by the federal Health Resources and Service Administra
tion. The grant was awarded to the VNA-LA to develop and test a home care
model of end-stage service delivery specifically to meet the needs of HIV/AIDS
patients, and the VNA-LA employed the provider teams for this study.
The VNA-LA is a not-for-profit corporation with seven Los Angeles County
offices serving the county as far north as eastern Kern County (Bakersfield), as
far east as Lancaster, as far west as Santa Monica, and as far south as Long
Beach. Each of the seven offices provides home care to patients referred by
hospitals, medical clinics, and physician offices. The VNA-LA is accredited by
the Joint Commission on Accreditation of Health Care Organizations and has been
in existence in Los Angeles for over 75 years.
All patients in the study were on service with the VNA-LA. Consequently,
the Internal Review Board of the VNA approved the utilization of the study design;
the Internal Review Board approval of the study, which focused on protection of
148
the patients' rights in the study, appears in Appendix 2. The patient records and
all data pertaining to and derived from the study are the property of VNA-LA and
the Joint Cooperative Agreement grantees that were funded in the same cycle as
the VNA. The VNA-LA holds the exclusive rights to its own study data and thus
holds sole authority in providing permission for its use outside the VNA. The
Internal Review Board of the VNA provided clearance for utilization and analysis
of the study data in this dissertation. The grant was funded for a 3-year period
beginning October 1,1994 and ending September 30,1997. The results reported
here are for the first 8 months of the study’s operation: from August 1, 1995
through March 31, 1996.
Home services provided by the VNA-LA include skilled nursing care, physi
cal therapy sen/ices, occupational therapy services, speech therapy services,
medical social work services, and home attendant and homemaker services.
These services are housed in three major service delivery centers: acute home
skilled nursing care, home attendant care services, and a Medicare-certified hos
pice program. Each delivery center, while housed in the same office, has its own
staff. In the case of home skilled nursing care, a registered nurse (RN) is
assigned as case manager to a patient referred for acute home care; the same
is true with home attendant care service, i.e., homemaker and health aide
services. Within these two services, other ancillary services, once ordered by the
patient’s attending physician, are scheduled and coordinated by the nurse case
manager.
149
in hospice care, the nurse and social work team act as the patient case
manager. In addition to nursing and social work, the hospice organization of the
VNA-LA is served by three medical directors, a team of chaplains, and an active
volunteer organization. While housed in the same building with the other service
providers in their respective service areas, the professional providers are not
cross-trained and do not cover visits for one another. Each group provides its own
night and weekend coverage. It is this organizational arrangement that makes
it possible to use the hospice teams and conventional care teams in each office
to compare distinct treatment approaches between hospice and the conventional
model of care without possible crossover effects biasing the results. There was
no crossover of personnel so that each model of care maintained its integrity.
The VNA-LA treats HIV/AIDS patients in both skilled nursing home health
and hospice. The average number of HIV/AIDS patients on service with the VNA-
LA in both home health and hospice averages 300 per month. Overall the VNA-
LA reports 5,000 patients on service a month in all offices on all services com
bined; HIV/AIDS constitutes approximately 6% of the home care service activity
of the VNA-LA— up from under 3% in 1993 (VNA-LA, 1996). The average age
of this treatment population is under 40 years of age and reflects the face of HIV/
AIDS in Los Angeles County. This will be delineated further in the sample section
of this chapter.
The service continuum provided by the VNA-LA is for complete home-
based services, from skilled nursing needs inclusive of intravenous drug therapy
150
and general skilled nursing care to hospice services. Patients remain under the
auspices of their physician. Should they require inpatient hospital services, they
are temporarily discharged from VNA services and readmitted to the hospital by
the physician. Patients are then readmitted to home services after the acute
hospital episode. When they return to the VNA, they retain their previous case
manager. Depending on the stage of the terminal illness, patients may receive
as few as one home visit by a nurse a month or as many as one a day. The
nurse case manager functions as the care coordinator inside the VNA and as the
direct contact with the patient's physician via phone or biweekly case conferences.
Case conferences with VNA providers involved with a patient are held weekly.
The Study Sample
The patients in this study were drawn from Los Angeles County and
specifically from two large HIV/AIDS full service programs: (a) the Los Angeles
County-USCMC’s 5P21 program; and (b) a multi-site, private, not-for-profit
program. The VNA-LA is the largest supplier of home care services for the 5P21
program and has an exclusive home care contract with the private, not-for-profit
provider. As of March 1995, Los Angeles County reported approximately 28,000
AIDS patients in the system with indicator conditions that would be classified as
B3 and with CD4 counts below 200. The Los Angeles County-USCMC 5P21
serves approximately 21% of the annual HIV/AIDS cases in the county; and a
private, not-for-profit program serves approximately 10% of the annual cases
151
(LACDHS, 1995). The two clinics that participated in the study provide services
and case managementto approximately 7,000 HIV/AIDS cases annually. Of these
7,000 cases, approximately 10% require HC services in any given year and are
therefore potential utilizers of home health services referred from these providers
to the VNA-LA. On a monthly basis, these sources have on service with VNA-LA
between 200 and 300 patients; this number has been constant since 1994 (VNA-
LA, 1995).
According to the LACDHS profile, these patients are predominately male
(88%). Ethnically these patients are 22% Caucasian, 26% African-American, and
49% Hispanic. The average age of this population is 36 years. Seventy-two
percent of this population are between the ages of 30 and 49, with 45% between
the ages of 30 and 39.
The sample drawn from this sampling frame of patients was a convenience
sample, i.e., those patients that were readily accessible for the study. Conve
nience samples are often used in experimental and quasi-experimental research,
especially in longitudinal studies, because it is difficult to obtain representative
samples that can participate in studies over long periods (Monette, Sullivan, &
DeJong, 1994).
The criterion for inclusion in the study was a classification as a B3 H IV /
AIDS patient according to the 1993 definition of AIDS (Bartlett, 1994). Patients
were randomly assigned as they were referred for HC services to either the
experimental or control group. Once in the study, receiving HC services from the
152
VNA-LA, patients continued on the study even when they were discharged tem
porarily for hospital visits or did not require active HC. Under the 1993 definition,
there are three clinical categories with three levels of CD4 counts that characterize
HIV infection and AIDS. These classifications, summarized in Table 1, are ac
companied by specific definitions that define disease clusters that have become
associated with AIDS (Appendix 1). The letter designation reflects severity of
condition and CD4 count, with "C" being the most severe condition.
Table 1
CD4 cell cate A (asympto B (sympto C (AIDS in

gories matic matic dicator
1) > 5 0 0 A1 B1 C1
2) 200-499 A2 B2 C2
3) < 2 0 0 A3 B3 C3
Note. Based on Medical Management of HIV Infection by J. Bartlett, 1994,

Glenview, IL: Physicians & Scientists Publishing Co., p. 23.
Most complications we associate with "full blown AIDS" occur with
increased frequency at lower CD4 counts and most frequently with counts below
200 (Bartlett, 1994). As suggested by Martin (1991), the inevitable deterioration
of patients with AIDS can biologically be pinpointed with a noninfectious condition
called wasting—the condition when the body begins to attack itself. P. cami
153
pneumonia, chronic Herpes complex, and extrapulmonary tuberculosis are among
the infections that plague symptomatic HIV/AIDS patients; these have been called
opportunistic infections. As the CD4 count reaches 50 or less, blindness is a
possibility as wasting becomes an ever-present threat. At the 200 CD4 count level
(B2 in the case definition chart), patients require hospitalization for infections and,
upon discharge, require HC services to continue therapies begun in the hospital.
Patients may only require brief periods of HC services at this time; but as the
disease continues, more hospital visits and longer periods of HC services are
required. At the point these opportunistic infections occur and wasting begins,
gross predictions of time remaining for death are between 12 and 18 months
(Bartlett, 1994; Martin, 1991).
The patient conditions described here constitute context of the sample
frame for this study. The majority of the study sample, in excess of 65%, entered
the study with CD4 counts at or below 50 and with one of the more severe oppor
tunistic infections, e.g., cytomegalovirus (CMV) retinitis.
Description of the Overall Sample
The study participants were drawn from patients referred for HC services
to the VNA-LA by the Los Angeles County-USCMC AIDS clinics and the largest
community-based, full service AIDS medical provider in the county. The data were
gathered from August 1,1 9 9 5 through March 31,1996 (a period of 8 months) on
168 participants. This period, the beginning of the final phase of the terminal
154
trajectory, provided an opportunity to evaluate the transprofessional model in the
mainstream of medical/curative HC services before the full effects of hospice were
seen.
Data on quality of life were drawn from a subsample of participants (n =
60) from the larger study pool. The exploratory work on quality of life required
that measurements on quality of life be taken at least twice on each patient.
Given the debilitating nature of AIDS and the amount of time required to gather
quality of life information (phone interviews required 1 to 1.5-hour sessions, 4
times a month every month on study patients), gathering multiple measurement
points was not possible in this study sample. This subsample was representative
of the larger sample and is described separately following the description of the
entire sample.
Sociodemoaraohics of the Overall Sample
The sample was randomly assigned to either the transprofessional model
of care or CC upon intake to the VNA-LA. The size of the experimental group
(transprofessional model) was 81 patients, and 87 patients were assigned to the
control group (conventional model of care). Table 2 provides the sociodemograph
ic profile of the overall study sample and compares it to the demographic profile
of HIV/AIDS patients in Los Angeles County. Tables 3-7, which present general
and health-related demographic data, are delineated by control group and exper
imental group.
155
Table 2
Demographic Comparison of Sample with Los Anaeles County HIV/AIDS Patients
Characteristic Sample Los Angeles County
Mean age3 37.5 years 38.0 years
Ethnicity3
Caucasian 35% 36%
African-American 21% 24%
Hispanic 44% 36%
Gender3
Male 87% 88%
Female 13% 12%
Note. Reflects cases for 1995 and not cumulative, as disease profile has shifted
since reporting began in 1988.
aNo statistically significant difference found between groups at e = .05.
156
Table 3
Sociodemoaraphic Characteristics of Study Sample
Experimental Control
group group
CO= 81) (a -8 7)
Characteristic n SD % n SD %
Mean age 38.4 8.2 36.9 7.4
Ethnicity
Caucasian 28.4 42.0 23.0 30.0
African-American 12.0 18.0 15.0 20.0
Hispanic 26.0 39.0 38.0 49.0
Asian 1.0 1.0 1.0 .05
Gender
Male 66.0 89.0 75.0 88.0
Female 8.0 11.0 10.0 12.0
Primary caregiver
Yes 66.0 1.5 65.0 75.0
No 15.0 8.5 21.0 25.0
Note. There were no statistically significant differences between the groups on

any of the sociodemographic characteristics (p > .10). All percentages are the
percentage representation in the group and not the overall sample. Numbers may
total less than 168, as some patients refused to provide certain pieces of
demographic data.
157
Table 4
Health-Related Demographic Characteristics of Study Sample
group group
to -81) to * 8 7 )
Characteristic n % n %
Admitting physical functioning

Low endurance/fatigue 50 64 56 65
No condition 16 21 22 25
Other physical 10 13 9 10
Pain 2 2 0 0
Mental functioning
Oriented 54 71 68 80
Forgetful 10 13 4 5
Lethargic 1 1 0 0
No condition 11 15 13 15
Insurer
Medical (fee for service) 36 59 36 51
Medical (managed care) 11 18 10 14
Other public insurance 11 18 21 30
Private insurance 3 5 4 5

any of the health-related demographic characteristics (p < .10). All percentages
are the percentage representation in the group and not in the overall sample.
Numbers may total less than 168 as some patients refused to provide certain
pieces of demographic data.
“Mean days on service = 115. bMean days on service = 130.
158
Table 5
Admitting Disease Stage at Intake of Study Participants
group group
(a ® 81) (n = 87)I
Disease stage n % n %
Pneumococcal pneumonia 2 2.6 4 4.7

Thrush 1 1.3 2 2.3
Karposi sarcoma 2 2.6 5 5.8
Lymphoma 2 2.6 3 3.5
Dementia (HIV associated) 1 1.3 1 1.2
Wasting syndrome 9 11.5 6 7.0
Toxoplasmosis 2 2.6 2 2.3
Pneumocystis caninii pneumonia
(PCP) 4 5.1 6 7.0
Cryptococcoses 2 2.6 2 2.3
Herpes simplex 0 0.0 0 0.0
Candida esophagitis 1 1.3 1 1.2
M. avium 1 1.3 0 0.0
Cytomegalovirus (CMV) retinitis 34 43.6 35 40.7
Advanced AIDS 17 20.5 19 20.9

159
Table 6
Patient Knowledge at Intake of Diagnosis and Prognosis
group group
Cn = 8 i) ( a -87)
Knowledge n % n %
Diagnosis
Yes 30 38.5 41 46.5
No 48 61.5 46 53.5
Prognosis
Yes 14 17.9 25 27.9
No 64 82.1 62 72.1

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Table 7
Service-Related Demographics bv Study Groups. 8/1/95-3/31/96
group group
00
IS*
it
O i - 81)
Factor n % n %
Means days on service 113 130
Deaths 10 12 11 12
Note. No e values were significant.
161
The average age of the overall sample was 37.5 years, with a standard
deviation of 7.8 years. The mode age of the overall sample was 36 years. The
largest single group of study participants were Hispanics, representing 44% of the
sample. Eighty percent of the participants were between the ages of 26 and 44.
As noted in Chapter 1, the CDC has reported that the leading cause of death
among males 25-44 years of age is HIV/AIDS (CDC, 1995a). In addition, Los
Angeles County now reports that the fastest growing ethnic cohort with new cases
of AIDS are Hispanics (LACDHS, 1996). Therefore, this sample was representa
tive of the trends reported by both the CDC and Los Angeles County.
With regard to primary caregivers, 78% of the sample reported that there
was a primary person who could be responsible for providing HC supervision for
the patient. Table 3 breaks down the general demographic characteristics of the
sample by the experimental group and the control group. The mean age was 38.4
years (SD = 8.2) for the experimental group and 36.9 for the control group (SD
= 7.4). A t-test was run comparing the mean ages of the two groups to determine
any significant difference in age that might present a bias to study results. The
Levene's test for homogeneity was not significant; therefore, the null hypothesis
that the two groups were not drawn from the same sample was rejected. The t-
test resulted in a finding of no statistical significance with regard to the mean
difference in age of 1.5 years.
Chi-square tests were performed comparing the ethnicity, gender, presence
or absence of primary caregiver, and relationship status of both the experimental
162
group and the control group. No statistically significant difference between the
groups with regard to any of these sociodemographic variables was found. With
regard to these demographic variables, the two study groups were therefore com
parable.
Health-Related Overall Sample

Demographics
Health-related demographics in this study refer to disease stage, physical
and emotional functioning noted upon admission, insurance coverage, and knowl
edge of diagnosis and prognosis upon admission to VNA-LA home services.
Tables 4-6 depict health-related demographic characteristics between the groups.
Table 5 specifically delineates disease stage (conditions upon admission). Table
6 depicts the patient's knowledge patient with respect to diagnosis and prognosis.
The patients’ disease stage and the major disease condition reported by the
patients' referring physician were coded for each patient upon admission using
the Johns Hopkins Medical Center grid discussed later in this chapter. Each AIDS
condition was given a number, progressing from 1 for HIV+ status to 19 for CMV
disorders. The categorizing of the conditions in this manner enabled the variable
of disease stage to be treated as an ordinal level of measurement. Knowledge
of diagnosis and prognosis was reported on the VNA-LA admission form by the
referring physician as either yes or no with regard to knowledge of the diagnosis
and prognosis and indicated the physicians’ perception of the patients' awareness
of their condition.
163
These health-related variables, as delineated in Chapter 3, historically have
been considered important in looking at use of hospice services at end stage.
While not only providing a more in-depth description of the study sample, the
comparison of these variables between the study groups provided an awareness
of the potential threats to the study design's random assignment and findings.
In each comparison performed, there were no findings of statistical significance.
Among all the health-related demographic characteristics, the null hypothesis of
no statistically significant differences between the two study groups was not
rejected.
Physical functioning reflected key areas of functioning reported by the
referring physician that might have had an impact on the HC plan of service de
livery but should not be viewed as a definitive profile of the patient's physical
functioning. For the overall sample, fatigue and lack of endurance were reported
as the main physical functioning problem for 107 (65%) study patients. This
general category encompassed problems with sustaining performance in executing
ADLs. Other conditions which were reported for only 19 (12%) of study partici
pants referred primarily to problems of urination or bowel problems. A small per
centage (1.2%) of study participants were reported to be suffering from pain. For
37 patients (22%), no physical conditions were reported, indicating that there was
an assessment made by the referring physician that no physical conditions repre
sented barriers to executing a HC service delivery plan.
164
Mental functioning referred to a gross estimate of the patient's mental
condition made by the referring physician. It was reported in order to highlight
any mental functioning problems that might have presented barriers to successful
delivery of care in the patient’s home environment. Seventy-five percent (122)
of the study patients were reported to be oriented and alert at the time of admis
sion. Only 14 patients (9%) were reported to be forgetful at the time of admission.
While this characterization might be connected to an underlying condition of AIDS-
related dementia, a condition that accompanies late end-stage patients, the report
as an admitting condition did not designate underlying etiology. Two patients (2%)
of the study sample were reported to be lethargic or presenting conditions that
might have impacted HC delivery of services. Fifteen percent (27%) were
admitted without any mental conditions that might impact the delivery of HC
services.
Study participants were primarily covered by Medi-Cal (55% ). Twenty
percent were reported to have no insurance, which meant that care was to be
reimbursed by out-of-pocket payments by the patient. In each of these cases,
the patient was in the process of applying for Medi-Cal coverage. Thirteen
percent of the patients were covered for services by Medi-Cal managed care
programs. Managed care refers to health providers that receive monthly pro-rated
payments (capitated fees) from the state of California to cover all medical ex
penses for patients. Twenty percent of the patients in the study were covered
either by Medicare or a combination of Medicare and Medi-Cal ("Medi-Medi"). A
165
small percentage of patients (5%) had private insurance. The coverage for home
care and hospice services for each of the modes of payment was similar with
regard to regulations for hospice. The majority of providers follow Medicare
guidelines in requiring a 6-month terminal prognosis for admission to hospice.
In addition, insurers provide a capitation amount, approximately $13,000, to cover
all care for the patient once hospice certification is documented.
The disease stages in Table 6 are listed in descending order from
conditions that occur from time of HIV seroconversion through to the final disease
stage, CMV. As delineated by the Johns Hopkins Medical Center, developers of
the disease stage model, the stages correlate with decreasing CD4 counts and
years remaining of life expectancy (see Appendix 1 for the full trajectory model).
As can be seen from Table 4, the majority of both the experimental (43.6% ) and
control (40.7% ) patients entered the study with CMV retinitis, a virus of the optic
nerves that often results in blindness. Those who were admitted with wasting
syndrome (noted as the point that the final stage of the disease begins)
constituted a total of 15 patients (9.1%) from the overall sample: 9 wasting
syndrome patients in the experimental group and 6 wasting syndrome patients
in the control group. Considering the overall sample, the modal disease stage was
CMV; 64.8% of participants reported disease stages between wasting and CMV.
In addition to the specific disease conditions that characterize disease
stage, the Johns Hopkins model groups disease conditions together to form what
can be considered disease condition "blocks." Pneumonococcal pneumonia forms
166
Block 1; thrush karposi sarcoma, lymphoma, and dementia form Block 2; wasting
syndrome, toxoplasmosis, pneumocystis caninii pneumonia (PCP), crytopcoccosis,
and herpes simplex form Block 3; and M. Avium and CMV from block 4. The
viruses CMV and M. Avium are both the modal and median blocks of this study,
containing 73 study patients or 44.2% of the overall sample. Block 3, inclusive
of wasting, contained 20.6% of the overall sample (34 study participants). Overall,
this sample could be characterized as being in the final stages of HIV/AIDS.
In both the case of diagnosis and prognosis, patients in both groups were
more likely to have been admitted to service at the VNA-LA not knowing their
diagnosis and prognosis. Diagnosis relates to knowledge of disease stage, while
prognosis has to do with knowledge of the expected outcome of the diagnosis.
The differential between those patients who did not know the diagnosis versus
those who did was 12 patients (ratio of 1:0.68) in the experimental group and 6
patients (ratio of 1:0.88) in the control group. The wider gap between knowing
and not knowing occurred with regard to prognosis in both groups. The ratio of
prognosis not known to known in the experimental group was 4:1, while the same
ratio for the control group was approximately 2.5:1.
It should be noted that these admitting descriptions of knowledge were not
accompanied by documentation with regard to specific conversation between pa
tient and physician. Rather, these data were supplied by the physician or his/her
office as part of a checklist designed to facilitate patient admissions. At best, this
167
information can be seen as the physician’s perception of the knowledge the patient
might have had with respect to both diagnosis and prognosis.
Table 7 presents the care-related demographics by study group. The mean
days on service for all study participants were 121.7 days (SD = 81) with a range
from 5 days to 243 days. Twenty-one of the 168 patients in the study died while
on service, or 12% of the study sample. With regard to days on service and
deaths, a t-test and chi-square test were run respectively between the experimen
tal and control groups and no significant differences in the sample attrition were
discovered. Overall, with regard to key sociodemographic and health-related dem
ographic variables, the sample was equivalent.
Subsample Demographic Comparisons
As noted earlier, a subsample of 60 patients from the experimental group
and control group, used in exploration of quality of life issues, represented all
study participants available for extended phone interviews over several months.
The subsample included 35 experimental group patients and 25 control group
patients. Table 8 presents the key sociodemographic characteristics of the
subsample.
T-tests for age, a Mann-Whitney U Rank Order test for disease stage, and
chi-square tests on the remaining demographic variables performed on the sub
sample to determine significant differences between the two groups and between
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Table 8
Sociodemoaraohic Characteristics of Study Subsamole (N = 601
group group
01-81) (11 = 87)
Characteristic n SD % n SD %
Mean age 38.9 10.0 36.2 8.3
Ethnicity
Caucasian 19.0 54.0 9.0 36.0
African-American 4.0 11.4 8.0 32.0
Hispanic 12.0 34.3 7.0 28.0
Asian 0.0 0.0 1.0 4.0
Gender
Male 33.0 94.0 22.0 88.0
Female 2.0 6.0 3.0 12.0
Primary caregiver
Yes 30.0 85.0 19.0 73.0
No 5.0 15.0 6.0 27.0

any of the sociodemographic characteristics (e > .05). All percentages are the
percentage representation in the group and not the overall sample. Numbers may
total less than 60, as some patients refused to provide certain pieces of
demographic data.
169
the subsample and the overall sample indicated no statistically significant differ
ences. All tests for significance were greater than a q value of .05.
As shown in Table 8, the average age of the subsample groups was
comparable to the overall sample. In the subsample, the Hispanic ethnic group
was no longer the dominant group, representing 34% of the experimental group
subsample and 28% of the control group subsample. Caucasians predominated
the experimental group, representing 19 of the 35 patients. As was the case with
the overall sample, the ratio of males to females in the subsample groups was
approximately 7:1.
Within the subsample the age breakdown of study patients followed the
overall sample, with 79% of subsample participants falling into the 26- to 44-year-
old age group. With regard to insurance coverage, the majority of subsample
patients (78.4%) carried coverage through either fee for service Medi-Cal or Medi-
Cal managed care. Another 13% of the subsample earned coverage through
either Medicare or Los Angeles County funding.
Health-related demographics were reflective of the overall sample, with
48.2% of the subsample being diagnosed with CMV as the admitting disease
stage. Sixty-one percent of the subsample was admitted in the fifth block of the
Johns Hopkins model of disease, meaning that they were at the end stage of the
disease. Another 16% had admitting diseases that placed them in Block 4,
wasting syndrome. Problems with endurance were noted for 71 % of the subsam
ple upon admission, and 79% were reported to be alert and oriented with regard
170
to mental status assessments. As was the case with the overall sample, sub
sample participants were more often aware of their diagnosis (50% ) than of their
prognosis (25% ).
Random assignment proved to be effective in group distribution. As has
been reported, there were no findings of statistical significance that would indicate
group nonequivalency between key patient level variables that could threaten the
internal validity of the study.
External Validity
It was impossible to engage in random sampling since patients were not
known to the VNA-LA prior to their referral for services. In addition, service pro
priety and confidentiality did not make it feasible to request that the providers
provide a complete list of level B3 patients to the VNA-LA for the study. Even if
such a list could have been created, knowing which patients would require home
health services was not a realistic possibility.
The convenience sample provided an approximately representative sample
of the entire population, given the significant representation of the Los Angeles
County population on service with these providers. In addition, the VNA-LA's
geographic coverage of the county provided a significantly broad coverage of
patients in the Los Angeles metropolitan area. The goal of this research, given
the above constraints, became to create a sample that was inclusive of the profile
of end-stage HIV/AIDS patients in Los Angeles County. The geographic coverage,
171
combined with affiliations with the largest providers of HIV/AIDS care in Los
Angeles County, contributed to the sample's increased representativeness.
Table 8 shows no significant differences between the referred sample of
AIDS patients in the study and the general AIDS population in Los Angeles.
The study findings, therefore, may be generalizable to the greater Los Angeles
County end-stage AIDS population. Generalizing to a target population is a critical
aspect of achieving external validity (Cook & Campbell, 1979).
Determining Sample Size
Sample size calculations were also performed to determine the adequate
size of the sample that would be needed for this study in order to properly address
the study hypotheses. Power analysis is usefully performed as part of research
planning (Cohen, 1988). While post-experiment power analysis is utilized to
determine the power of a given statistical test in discerning effect, for planning
purposes power analysis is utilized to determine adequate sample size. It should
be noted, however, that only the cost hypothesis was utilized in determining
sample size. Of the four hypotheses, costs of care of hospice utilization were
available from previous research. This made it possible to determine effect size.
The fact that previous research with respect to intent and acknowledgment did
not exist made effect size impossible to discern.
According to Cohen (1988), there are four components to power analysis:
172
1. Power—-the power of the test to discern when a null hypothesis is
false;
2. Significance level— the level at which the null hypothesis will be
rejected;
3. Sample size— the size of the population required for the specific
statistical tests being performed to achieve reliable power and significance level;
and
4. The size of the effect—the absolute difference in the dependent
variable expected to be found between groups.
Estimating any three of these items makes it possible to determine the remaining
item by use of tables created by Cohen.
Effect sizes, a critical factor in discerning sample size, were estimated by
Cohen and designated as small, medium, and large. These refer to the expected
critical value, i.e., t, based on the expected mean difference in the dependent
variable between two groups. Cohen suggested that this information was best
discerned from past research in the area the researcher was exploring. Power
was simply how rigorous the test was in discerning a meaningful difference be
tween groups so that the null hypothesis was falsely accepted. The power of a
test, therefore, ranges from 0% to 100%. The alpha level is the level of signifi
cance at which the research considers it appropriate to reject the null hypothesis.
For the present research effort, the majority of analysis involved hypothesis
testing of mean differences between groups with regard to a single dependent.
173
Therefore, power analysis to determine sample size was based on the appropriate
means test for each hypothesis. The significance level that was used in determin
ing sample size was .05. Based on the findings with regard to cost in the National
Hospice Study and subsequent cost studies, cost differentials between the groups
were the easiest to use for an estimate of sample size. Previous research in this
area demonstrated a 25% cost savings differential between hospice and conven
tional care. The effect size was determined to be .25, which was small by
Cohen's (1988) standards for a t test. The power of the t-test was selected at
between .70 and .80, which resulted in a required sample size of 160 subjects.
Since effect size for determining the differences in the groups for acknowl
edgment, length of stay in hospice, and differential in service utilization profiles
were not contained in the literature, the sample size for the cost comparison based
on a small differential was determined to be adequate.
Study Design
A longitudinal experimental design with repeated measures and with
random assignment to an experimental group or to a control group tested the
proposed hypotheses on a convenience sample of VNA-LA end-stage AIDS pa
tients, as depicted in Figure 5.
Referral and Intake Process
HIV/AIDS patients in the study were referred for skilled nursing home
services by physicians in the greater Los Angeles County area. These patients
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Time On Home Care Service
30 Days... 60 Days... 90 Days... 120 Days
01........ 02.......... 03. 04

Conventional Model
Referral Intake
■ 0
01 . 02 . 03. 04
Transprofessional Model
Figure 5. Study design: Time on home care service. R = random assignment. 01

= admitting measures (demographic data, disease stage and symptoms); 02-04
= measures every 30 days (medical chart review: visits, acknowledgment, hospice
admit; Management Information System (MIS) system medication costs; interviews:
quality of life, symptoms and disease stage).
175
were randomly assigned upon their provider’s referral call to VNA-LA central
intake, to either RNs and social workers providing skilled medical home care in
the experimental treatment group or to the control group. All referrals that are
made to the VNA-LA come through central intake, and assignments of patients
to offices and care teams are made at the time of referral by the nurse coordina
tors at central intake. The study did not alter the central intake process of the
VNA-LA other than to impose the practice of random assignment.
Following the central intake referral, a nurse case manager was assigned
to the patient. Within 24 hours of the referral the nurse case manager made an
admitting home visit, took the patient's history, and developed a care plan. In
addition, the patient signed a consent to receive services at the VNA-LA . The
HIV/AIDS patients were asked to sign a second consent form with regard to this
study. The second consent form gave the VNA-LA the ability to gather information
every 30 days on quality of life and psychosocial issues of patients as part of this
study. These measures are indicated as "0" in Rgure 5. Patient financial and
service utilization data were released by the patient to the VNA-LA to use anony
mously upon the signing of the first consent form. Both consent forms appear in
Appendix 3. All patients referred for services to the VNA-LA signed the first
consent form. Fewer than 10% (13 out of 168) of patients refused to sign the
second consent form for further related measures. The major reason for refusal
was the patient's self reported fatigue and lack of energy.
176
Randomization Procedures
Random assignment was achieved by creating a random number table with
either the letter "A" (experimental group) or the letter "B" (control group) above
each number. As calls were received, the order was tracked using a simple num
bers chart. The central intake nurse was instructed to look for the number of the
call. Calls were kept cumulatively from the beginning of the study on the random
numbers chart and then assigned the patient to an A or B status depending on
the letter above the numbered call.
While both groups in the study received services, no services were withheld
from the control group that were part of the standard model of skilled medical
home care. This study still met the criteria for an experimental study known as
a "planned variations design" (Cook & Campbell, 1979):
One difficulty when multiple treatments are targeted on a common

problem is the absence of a no-cause baseline, making it difficult to test
hypotheses of absolute cause as opposed to hypotheses about differential
impact. . . . But it would also mean that treatment has to withheld
thereby creating the very problem that "planned variations" is partly meant
to solve, (p. 349)
As long as the control group receives a standard treatment, the experimental
group receives an enhancement of that treatment; and as long as the problems
in both groups are identical, the planned variations design should be as effective
as a no-treatment control design in controlling threats to internal validity (Cook &
Campbell, 1979; Rubin & Babbie, 1989). The planned variations design
177
demonstrated a new model of terminal care in comparison to the existing model,
which served as a baseline for the proposed new model of care.
Measurement and Concepts Defined
The discussion of the operationalization of the concepts in this study has
been done by following the study hypotheses as delineated in Chapter 3. The
model in Figure 6 is an operationalization of the study concept model presented
in Chapter 3, Rgure 4. The conceptual framework delineates the relationship of
the key independent variable, the model, to intervening independent variables that
ultimately impact admission to hospice, quality of life, and costs. The models of
care are independent variables differentiated by intent, whether multi-disciplinary
or coordinated by a single discipline. Acknowledgment of the terminal prognosis
is both a dependent variable of the model of care and an intervening independent
variable affecting the hospice admission.
The concepts delineated in Figure 6 are explicated in this chapter. The
patient level variables, demographics and disease stage, are independent inter
vening variables as specified in the model. The transprofessional model is the
treatment construct which includes intent. The study outcomes are the days on
hospice, costs, and quality of life. Hospice admission is a dependent variable
impacted by acknowledgment of the terminal prognosis, patient disease stage,
and demographics. Costs of care and quality of life are dependent variables af
fected by the hospice admission.
178
Hospice tt,
Models * Terminal Admit:
of Care: Prognosis Quality of
•Date Life:
Conventional/ Acknowledgment: Admitted
Transprofessional •Med. Record Rand SF21
•Days on
Verification Service
Costs: ***
•Visits
• Medications
Visit Intent: * Patient
• Medical Chart Variables:
Content • Disease Stage
•Profile of • Demographics
Visits
* Independent V ariable
* * Intervening V ariable
* * • Dependent V ariable
Figure 6. Study concepts operationalized: Transprofessional model of care
179
The Transprofessional Model
The control group model of care, directed by a nurse case manager, is the
medical/surgical model of home care which is considered the HC industry
standard. Services are coordinated by a single RN case manager and include
skilled nursing care, e.g., wound care, administration of intravenous (IV)
medication. Case managers in the conventional model are solely responsible for
coordination of services provided to patients through consultation with physicians.
In order to operationalize the transprofessional model of care in the VNA-LA
environment, hospice-trained RNs and clinical workers were provided training in
the physical and emotional aspects of HIV/AIDS patients. Additionally, nurses
were given continuing education in the pharmacology of HIV/AIDS and in the
administration of IV therapy so that they could function in a skilled nursing HC
environment.
These multi-disciplinary care teams were recruited from the Medicare-
certified HC hospice programs provided by the VNA-LA. Both the nurses and
social workers had experience in hospice care of terminal patients, inclusive of
HIV/AIDS patients. Hospice teams were chosen to work in the curative care
environment of HC skilled nursing due to their familiarity with terminal care and
their grounding in palliative treatment. Introducing the hospice-trained team into
the curative model, with their grounding in palliative care, was considered the best
means for creating an inclusive model of care with a blended focus on cure and
care.
180
While the transprofessional model has aspects of cross training, it is not
a cross-skills training model but a model that was built on the intent and focus of
care. It should therefore be viewed as a cross-competencies model of service
delivery. Those professional caregivers with a palliative orientation, placed "into"
the curative system, were thought to have a significant opportunity to use their
dual competencies, acute medical orientation and palliative orientation, in caring
for patients. The transprofessional model is seen as "additive," i.e., adding to the
existing physiological skills of curative care the aspects of psychosocial concerns.
This dual-competent, boundary-spanning team of professionals bridges the current
dichotomy in terminal care between curative and palliative intent. Additionally, this
multi-disciplinary team provides a bio-psychosocial perspective with regard to case
management of the client system. Finally, this model unlocks palliative concerns
from behind hospice referral so that cure and care concerns can be utilized in the
entire treatment trajectory process and in the continuum of treatment decisions.
In order to ensure the proper level of competence in both the skilled nursing
aspects of terminal care and in working with HIV/AIDS patients through the entire
terminal illness trajectory, nurses and social workers from each of the seven VNA-
LA offices were given an intensive 16-hour training course. The agenda and an
abstract of the training sessions appear in Appendix 4. The training material out
lines a model of care that is inclusive of both medical considerations and psycho
social patient issues and interventions for each disease entity that is part of HIV/
AIDS. The main tenets of the transprofessional model are as follows: treatment
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planning that considers the patient's physiological condition in combination with
psychological adjustment to treatments, continuous communication with patients
about treatment options, facilitation of communication about the patient's emotional
adjustment to the disease, and communications with the patient support system
and physician. This dual consideration is the hallmark of the transprofessional
model. Patient treatment decisions in the transprofessional model are based on
a combination of the prescribed treatment for a particular problem, symptom moni
toring to assess patient reactions, and input from patients on the perceived value
of continuing treatments. The patient's voice and the psychosocial issues of the
care experience always mediate treatments and provision of services.
The following protocol for medication administration is an example of the
blended intent of curative and palliative care that was incorporated into training
in the transprofessional model of care:
1. If the drug is causing burdensome symptoms, discontinue.
2. If the patient no longer wants the drug, discontinue.
3. If the patient is asymptomatic and wants the drug, continue with close
assessment.
4. Help patient to focus on symptoms.
These types of considerations do not enter the current model of care as routine
consideration in providing care .
Critical to practice in the transprofessional model is the facilitation of the
transition of care to hospice. This facilitation requires that the transprofessional
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caregiver act as facilitator for patient's desires to understand their condition and
to explore treatment options as well as function as a communications link between
the patient and the physician. This facilitative aspect of care was an important
part of the training received by the nurses and social workers during their 16 hours
of training in the transprofessional model.
The transprofessional model has a multi-disciplinary nature to case man
agement. Nurses and social workers must function as a team, centering care on
the bio-psychosocial needs of patients. This team approach was stressed during
training in the transprofessional model. Several break-out sessions were con
ducted that required both nurse and social worker to report on care plans for
patients that needed the skill and involvement of both disciplines.
Demographics
Demographic data are defined as patient specific information relating to
personal characteristics of age, gender, ethnicity, and social characteristics such
as relationship status and social affiliations. The specific demographic measures
used in this study, from which demographic data were drawn, appear in Appendix
5. This demographic profile was taken from the standard demographic reporting
form developed by the Health Resources and Services Administration (HRSA),
the funders of this study.
183
Disease Stage
Disease stages, which appear in Appendix 1, were based on the develop
ment work of Johns Hopkins University Medical Center. Each disease cluster,
moving along the continuum of time since HIV infection, suggests a worsening
of the disease as death nears. These clusters framed the definition of disease
stage utilized in this study. This disease stage grid has been adopted by all 27
Ryan White grants that are part of the HRSA cooperative agreement under which
this VNA-LA grant operates. The utilization of this disease stage model permits
the sharing of comparative data with other projects. In addition, the disease stage
is accompanied by information on patient symptoms and conditions (Appendix 5).
Together with disease stage, the current symptoms and conditions experi
enced by patients frame the stage of the disease and severity as conditions com
pound and symptoms worsen. Disease stage has been defined, therefore, as a
cluster of diagnoses with the complications and severity of conditions and symp
toms as suggested by Hays (1995). These stages have also been characterized
by CD4 counts which range from 500 to 0. The reporting of CD4 count has
become a standard in the reporting of HIV/AIDS treatment data and is used in the
official classification of the disease as portrayed in the Hopkins Case Definition
Model (Bartlett, 1994).
184
Intent of Services
Intent is defined from both a context and a content perspective. The
context of intent is how services are delivered to patients; the content is the
nature of those services.
The transprofessional model is built on a multi-disciplinary approach to
terminal treatment, using nurses and social workers to provide patient care. This
method is in opposition to a curative model of care that utilizes nursing to deliver
services. The multi-disciplinary approach recognizes the patient’s physiological
as well as psychosocial needs. Intent, therefore, is defined as the mix of service
providers involved in patient care. An indicator of context intent is a count of HC
visits by type of provider.
The content of service is important in operationalizing intent. The presence
of curative and palliative intent in patient care can be defined as the presence of
both a physiological and psychosocial focus to patient care. Intent is measured
by the count of nursing progress notes on patient care contained in the patient's
medical record. For example, a solely physiologically oriented medical record
notes would be patient compliance information with medications. A psychosocial
and physiologically blended model of care oriented note would be reflective of a
patient's perceptions and adjustment to a medication therapy in combination with
compliance issues. In this study a ratio of blended notes to singularly focused
physiological notes was calculated for each patient. This ratio represented either
a single focus to care or a dual focus to terminal patient care.
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Intent was measured In two ways: (a) visit counts with regard to the
disciplines that make patient HC visits and (b) the ratio of blended to singularly
focused treatment notes put in the patient’s medical record. These two aspects
of intent were analyzed separately and as interaction terms. In other words, the
number of visits by type and progress note ratios was compared between the
experimental and control groups. In addition, an interaction term was created that
combined visits with note content, i.e., RN visits by RN, ratio of palliative medical
record notations to purely physiologically oriented medical record notations.
Acknowledgment
Study Hypothesis 2 posited that the transprofessional model of care would
ensure that the acknowledgment process occurred more often for patients in that
model than for patients in the CC model. Acknowledgment is an open communi
cation emanating from the patient to the professional care staff— an interaction
within the patient care system. Acknowledgment, then, is the patient openly invit
ing discussion about his/her condition. It is this process that begins discussions
about future directions of care. Acknowledgment is defined as the open
declaration or inquiry by the patient to the professional caregiver that he/she would
like to engage in a discussion of prognosis intended to elicit realistic information
about his/her condition.
The protocol developed by the VNA-LA following patient acknowledgment
in the HC setting was the formal request by the nurse case manager that a social
186
worker meet with the patient and family regarding future care options. This
occurred after the nurse had spent time with the patient responding to the patient's
concerns and facilitating a discussion on the patient’s concerns and expectations.
The nurse documented the conversation in the patient's medical chart and made
a formal request for a social work visit as well as requested an evaluation of the
patient’s options for care by his/her physician.
Acknowledgment can be quantified as the presence of the formal requests
for evaluation of the patient for further care options made by the nurse case
manager and appearing in the patient's medical record. In addition, both the
social worker and physician who met with the patient were required to document
their conversation in the patient's medical record. Acknowledgment, therefore,
became a documentabie event.
Hosoice Davs and Admission
Hypothesis 3 posited that the transprofessional model of care would
produce more days on service in hospice that the conventional model of care and
earlier admission to hospice. Total days on service in health care were termed
the patient’s "length of stay.”
Current lengths of stay in hospice for the VNA-LA average under 40 days
(VNA-LA, 1995). Over 30% of patients have lengths of stay in hospice under 20
days, which is comparable to the data reported in the National Hospice Study and
follow-up studies (Mor, 1986; Scitovsky, 1994). The actual hospice admission of
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a patient is well documented in the medical record. Patient's must be certified that
they acknowledge that they have 6 months or less to live, and this prognosis must
be officially entered into the patient record by the physician (VNA-LA, 1995). As
a consequence of the referral, patients are formally discharged from HC medical/
surgical services and admitted to hospice.
The admission to hospice is defined, therefore, as the date of discharge
from the current level of care and admission date to hospice care. Whether the
patient is admitted to HC hospice or inpatient, acute care hospital hospice makes
no difference in the discharge/admission procedures.
Within the VNA-LA, a pre-hospice care program has been established that
enables the patient to receive hospice services for a limited period of time while
the final decision to be certified for hospice is made. This pre-hospice program
requires that the patient acknowledge the terminal prognosis and be actively dis
cussing care options with the nurse case manager and physician (VNA-LA, 1995).
The admission to pre hospice is noted in the patient chart while the patient
remains on medical/surgical service. In this case the patient remains in two
programs. For the purposes of this study the pre-hospice program was
considered an admission to hospice. Therefore, hospice admission was consid
ered the admission to a formal hospice program or a pre-hospice program.
With regard to length of stay, time under hospice care and a record of the
patient's activities while on service were kept on a daily basis. Length of stay
became a simple procedure of counting the number of days under the VNA-LA
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care and, more specifically, the number of days under hospice care since the date
of admission to hospice. Days on service in hospice are defined as the number
of days for the patient since the official admission to either the pre-hospice or the
hospice program. If the patient selected to discharge from hospice temporarily,
the days on service stopped until readmission occurred. While the patient was
on hospice service, he/she might require acute hospital care. Per Medicare regu
lations, hospices are required to be responsible for these services once a patient
is officially admitted to hospice. Admission to acute care services while enrolled
in hospice does not constitute a discharge from hospital, and these days of care
were counted as days on service in hospice.
Costs
The fourth hypothesis posited that the transprofessional model of care,
utilized throughout a patient’s care, would produce lower costs overall than the
conventional model of care. Costs were divided into three areas: (a) visits made
in the care of the patient, (b) pharmaceuticals utilized by the patient, and (c) sup
plies and equipment utilized in the care of the patient. Costs in these three areas
were calculated from all patient service delivery encounters provided by caregivers
and charges for pharmaceuticals and supplies and equipment as direct costs. In
addition, handling charges and provider fringe benefits as well as agency
overhead were calculated as indirect costs. Together these costs combined to
create a fully loaded number: the actual cost of providing services to patients.
189
The problem encountered by numerous cost studies is that they apply the
costs of the local region in which the study operates but do not report units of
service or units of items supplied. Costs significantly vary by region in health care
service delivery so that costs alone do not enable generalizing of the findings.
In addition, without units of service, comparisons between providers is very difficult
since regional pricing structures can vary greatly. The National Hospice Study
utilized both costs and unit of services so that information across regions were
comparable (Mor & Masterson-Allen, 1987).
The specific definitions of costs were collected on data collection modules
where client level data were complied: Module 2A, service delivery, supplies and
equipment; and Module 2C, pharmaceuticals. Module 2A (Appendix 5), developed
in conjunction with a local project evaluator, included all service delivery cost items
in the HC visits arena. Home care costs for procedures were coded using the
VNA-LA data system that has developed codes for all professionals providing
services and includes the number and duration of visits. Supplies and equipment
were defined as durable medical equipment, and a dollar amount for these items
was collected.
Module 2C, medications (Appendix 5), developed by the VNA-LA in
collaboration with the Johns Hopkins University Medical Center, is a data collec
tion sheet for pharmaceutical utilized by HIV/AIDS patients. These pharmaceuti
cals reflect those items most often utilized in the care of HIV/AIDS patients culled
from the service experiences of the Johns Hopkins University Medical Center and
190
the VNA-LA. This module included both the brand name and generic name of
the pharmaceutical and could be coded with both the medication used and dos
age/frequency. A program was developed to translate dosage and frequency in
formation directly to cost.
Quality of Life
With respect to the evaluation of terminal care, quality of life remains an
exploratory construct. The evaluation of quality of life in this research was to
establish the usefulness of quality of life as a relevant construct in evaluating
models of terminal care and, secondly, to establish the relationship of quality of
life to the dependent variables in the study: costs and acknowledgment.
Several quality of life instruments have been tested with AIDS patients over
the last half decade. These include a number of iterations of the Rand Medical
Outcomes Survey known as the Medical Outcomes Survey (MOS)-X. The "X"
designator stands for the number of questions utilized in the instrument. Currently
there are six versions available of this instrument ranging from 20 questions to
56 questions. All of the instruments use subscales that measure physical function
ing, role functioning, social functioning, emotional well-being, and pain
According to Hays (1995), the newest version of the MOS family is the
Short Form (SF)-21 (Appendix 5). This instrument has eight subscales. The
subscales that measure quality of life when summed are as follows: Physical
Functioning (Questions 8A-D), Role Functioning (Questions 3 and 5), Energy
191
Fatigue (Questions 9F and 9G )t Pain Experience (Questions 6 and 10), Current
Health Perceptions (Questions 1, 2, and 9A), Emotional Well-Being (Questions
9D, 9E, and 9H), Cognitive Functioning (Questions 9B, 9C, and 91), Energy/
Fatigue, and Social Functioning (Questions 4 and 9A). All items are scored on
a Likert scale whereby the higher the score, the higher the quality of life rating
(Wachtel et al., 1992).
The SF-21 was reported with an overall reliability of 0.93 (Hays, 1995).
In terms of its correlations with other Rand versions of the quality of life
instrument, the SF-21 instrument was reported with an r of 0.99. As reported by
the test developers, the SF-21 takes 10 minutes to complete.
Limited validity tests have been performed on the MOS short forms for HIV/
AIDS patients. Known group validity tests were done by Wachtel et al. (1992).
Older, symptomatic AIDS patients had significantly lower scores on the Physical
Functioning, Role Functioning, and Health Perception scales than did younger,
less symptomatic AIDS patients. Respondents in the Wachtel study with four or
more symptoms reported significantly lower scores in all areas than did respond
ents with fewer symptoms (p < 0.05).
One caveat, however, in using the MOS Short Form Health Survey in
clinical trials is the substantial proportion of patients who score 0 on some
of the scales. This limitation could be addressed by the inclusion of
transition questions reflecting worsening or no change in physical condition.
(Wachtel et al., 1992, p. 136)
In order to overcome this problem, Hays (1995) has suggested using the
Karnofsky Performance Status scale as a part of quality of life measurement. The
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KPS (Appendix 5) is the most widely used method of quantifying the functional
status of cancer patients (Mor, Laliberte, Morris, & Weimann, 1984). The KPS
was utilized in the National Hospice Study as an accompaniment to quality of life
ratings (Mor & Masterson-Allen, 1987). The KPS has 11 ratings going from
normal functioning with no complaints to death. It is completed by a health pro
fessional, and each descriptive category is accompanied by a point rating going
from 100 points to 0 points. The distance between each description of functioning
is 10 points. In a test of reliability conducted by Mor et al., inter-rater reliability
was established at 0.97. The KPS adds a purely behavioral definition to the
quality of life scale provided by the SF-21.
The two instruments together formed the definition of quality of life that was
utilized in this study. Hays (1995), one of the key developers of the SF-21 quality
of life instrument, has been retained by HRSA in support of its grantees so that
a secondary data source would be available for comparative purposes. In
addition, the SF-21 has been adopted by HRSA as a required measurement for
its grantees who belong to the same cooperative study agreement as the VNA-LA.
These two factors permitted significant comparison of data with regard to quality
of life.
Internal Validity of Study
Random assignment controls for the major threats to internal validity.
Internal validity refers to those occurrences during the research that might be
193
considered as rival explanations to the study outcomes, other than the manipula
tion of the independent variable(s). Standard threats to internal validity which
were controlled by random assignment were inclusive of history; events that took
place during the course of the study to participants; maturation of study partici
pants; testing effects produced in study participants from repeated measurement;
and statistical regression, and selection (Monette et al., 1994). Tests discussed
earlier in this chapter were run to evaluate the effects of random assignment; but,
theoretically speaking, random assignment controls for threats to internal validity
Randomization does not necessarily control for problems that may be
produced by problems of treatment equalization. Equalization is a reaction to
study participants believing that the treatment they receive or the group in which
they participate is receiving a "lesser" treatment (Cook & Campbell, 1979). In this
instance, study participants might have sought to equalize treatment by copying
the treatment of the group they felt was receiving the experimental treatment. In
this study, this might mean that CC nurses might begin to appropriate the
treatment offered in the experimental model: a bio-psychosocial model of care.
The equalization of treatments was a possible threat to the internal validity
of the study. There was less possibility that this threat would be the result of study
participants, however. Nurses in the experimental group were more likely to seek
the bio-psychosocial model of care for their patients if they perceived it to be
superior to their CC model. Given the separate office relationship of staff at the
VNA-LA and the overwhelming dominance of the conventional model of home
194
treatment, the equalization effect was unlikely to occur. However, training for the
transprofessional model of care was done offsite so that the experimental model
care could not be replicated, in addition, there exists a natural selection process
in nursing and medical social work that provides a natural barrier to the equaliza
tion effect being present. Meyers-Briggs personality tests conducted at the VNA-
LA among nurses and social workers demonstrated very different orientations and
preferences by conventional medical personnel and hospice personnel (VNA-LA,
1995). Due to the differential in preference for work, the likelihood that either
group would substitute their care delivery process for the other's work delivery
process was diminished.
A check for the possibility of equalization can be accomplished by direct
measures between the experimental and control groups of the process that the
independent variable was meant to affect (Cook & Campbell, 1979). Hypothesis
1, which examined the intent of both models of care, was partially intended as
such an evaluation. If the intent of the models, as defined by differences in the
delivery of care, was significant, the threat of an equalization effect occurring
would be diminished (Cook & Campbell, 1979).
Study mortality (i.e., patients declining to continue participation in the study
once it had begun) also represented a threat to the internal validity of the study
(Cook & Campbell, 1979). The problem of patients choosing to leave care at this
stage of their disease was unlikely. While attrition in the form of leaving a study
is a valid concern in many studies, it did not, given the terminal nature of H IV/
195
AIDS and the service being provided, represent a major concern to threatening
the internal validity of this study. In fact, no patient, once having consented to
study participation, withdrew from data gathering.
Data Gathering
Data-gathering instruments and modules appear in Appendix 5. There
were three groupings of modules that were inclusive of all the data that required
for this study: the Management Information System (MIS) Data Package, the
Reld Package, and the Phone Package.
MIS Package
The MIS package, which consisted of Module 1, Module 2A, and Module
2C (Appendix 5), included demographic data, patient service utilization data, and
medications data. This information was entered within 24 hours after a patient
visit into the proprietary MIS of the VNA-LA. Data entry people assigned to the
study were trained to access this data bi-weekly and fill in a set of utilization forms
for each study participant. This procedure was followed for all forms except
Module 1, demographic data. Demographic data were gathered when a patient
was admitted to VNA-LA service by a nurse who visited the patient and conducted
an intake session.
The demographic and admissions data were entered into the VNA-LA
system within 24 hours of the visit. Data entry people accessed these data and
completed the form. Within 24 hours of the referral of the patient, central intake
196
sent a fax to the study office notifying staff of a patient admission and the group
assignment of the patient. This notification triggered the data collection process.
Once forms were completed, weekly for admissions demographic data and
bi-weekly for utilization data, the forms were faxed to The Measurement Group
(TMG), which was comprised of local evaluators hired for the project who had
focused on module development, training, and collection issues. The module
forms were machine readable and were entered by TMG into a data base that was
maintained by them in support of this study. With 48 hours, both a disk containing
the data and hard copy were returned to the VNA-LA for input into a copy of the
data base maintained by the VNA-LA. A coding system to maintain patient confi
dentiality is used so that neither the patient medical record number or name was
entered into the data base.
The Field Package
Every 30 days the field package was completed by either a nurse or a
social worker making a routine visit to the patient. The field package contained
Module 73 (the Disease Stage Module), the KPS, and the Symptoms and Condi
tions Module. The project administrative office supplied each office with packets
containing the modules and then sent notices to each case manager or case
management team when the 30 days was nearing so that these modules could
be completed.
197
The first field pack was completed at the time of patient admission and was
used as a baseline measure. The packets were returned to the administrative
offices in sealed envelopes via an in-house mail system. These data were
screened for missing information and then sent to TMG for entry and return by
the data entry staff.
The Telephone Package
Module 17, the quality of life instrument, constituted the Telephone
Package. This package was designated as the phone package because the
information being gathered was being done via telephone interviews with the
patients every 30 days. In working with HIV/AIDS patients in the terminal phase
of the disease, patients' attention spans and ability to participate in lengthy
interviews were limited. The HRSA, having experience with this population,
recommended phone interviews, which could be conducted at convenient times
for patients. Phone interviewing could be scheduled so that the distractions of
routine service delivery calls did not complicate the gathering of data.
Monnette et al. (1994) found phone interviewing with trained personnel to
be a valid technique of data gathering. Interviewers were Master in Social Work
(MSW) level people who had been trained in the gathering of the data required
in these two modules. They completed the modules and returned them in person
to the project administrative office. The inputting of these modules followed the
same routine as previously described.
198
All personnel involved in data gathering, inclusive of VNA-LA professional
staff, had been trained in the completion of modules by both the VNA-LA and
TMG. The Measurement Group maintained an information line that staff could
call should they have problems completing the modules or need a training refresh
er.
Analysis Plan
Descriptive statistics and bivariate analysis (t tests and chi-square tests)
were generated on all patients inclusive of entering disease stage, CD4 counts,
and symptoms. These data were used to do sample description group compari
sons and to determine group equivalency. Since this study was based on a rolling
admission process, there was no way to do clustering of patients and testing prior
to random assignment. The rolling admissions process required that start-of-care
date and days on service be used to group patient periods so that a consistent
frame for analysis was created. This meant that patients’ days on service from
start-of-care date were used to group patients for analysis so that all measures
were comparable across patient experiences by using the common denominator
of days on service (Table 9).
Hypothesis 1 predicted that the intent of care would be different in the
transprofessional model and the conventional model. Bivariate means comparison
tests were run comparing the visit profiles of each group. In addition, content
analysis of medical records was done to extract statements with regard to the
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Table 9
Analysis Plan
Measurement Analysis
Hypothesis level technique
#1—intent of services, visit counts and record interval/ratio t tests, regression

note ratio different in experimental group (logistic)
#2—acknowledgment, terminal prognosis decla nominal/interval ratio chi-square/t-test/

ration happen more often in experimental regression
group and with fewer days on service
#3—hospice days more in experimental group interval/ratio t test, multiple re

gression
#4—costs lower in experimental group interval/ratio t test, multiple re

gression
200
physiological aspects and psychosocial aspects of patient care. The entries in
each category were totaled and a proportion score then developed for each patient
of the ratio of psychosocial entries to physiological entries. Bivariate analysis, or
means testing, was then conducted
Hypothesis 2 predicted that the transprofessional model would produce
greater numbers of acknowledgment that the conventional care model. In
addition, acknowledgments were predicted to come earlier in the care process in
the transprofessional model. Acknowledgment was coded yes or no, and chi-
square tests were run comparing the two study groups. Further bivariate analysis
were run comparing the two groups on days from admission to service to the
acknowledgment event. Further analysis was run on the acknowledgment process
to ascertain determinants of acknowledgment. Logistic regressions were used
to understand the contribution of study variables to the acknowledgment process.
Hypothesis 3 stated that the transprofessional model of care would produce
longer lengths of stay on hospice than the conventional model. It was anticipated
that the transprofessional model would produce earlier admission to hospice and
that hospice admission would occur more often in the transprofessional model.
To evaluate these hypotheses, a series of bivariate mean comparison, specifically
t tests, were run comparing days on service and total length of stay in hospice
between the two groups. Chi square was used to compare the admission to
hospice between the two groups. Admission to hospice was coded as yes if the
event occurred or no if it did not occur. Multiple or logistic regression was used,
201
depending on the measurement level of the dependent variable construction, to
explore the study variables that were factors in bringing about the utilization of
hospice.
Hypothesis 4 posited that costs for the entire episode of patient care would
be lower in the transprofessional model than in the conventional model. Bivariate
means comparisons or t tests were run to evaluate this hypothesis using overall
costs and then the major subcategories of costs. A multiple linear regression was
used to evaluate the contribution of specific study variables in influencing costs.
Exploration of the relationship between quality of life, the biological markers
of pain and symptoms, and the utilization of hospice was conducted. The useful
ness of quality of life measures has not been established in terminal care, and
this analysis was intended to extend the exploration of quality of life as it related
to terminal care decisions. In order to evaluate quality of life, bivariate means
comparisons between treatment groups, multi-variate comparisons between ethnic
groups and disease stage, and repeated measure analysis of variance were run.
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CHAPTER 5
RESULTS
Overall, the study supported all of the hypotheses presented. The findings
showed a change in the intent of end-stage care services produced by the
transprofessional model—the first hypothesis. The second hypothesis, which was
validated, predicted that patient acknowledgment of the terminal prognosis would
be more prevalent in the transprofessional model of care than in the conventional
model of care. In addition, the experimental group experienced more days on
hospice services and earlier hospice admissions than the conventional model of
care—the third hypothesis. Findings also supported the predictions made with
regard to costs, which were lower over the entire episode of end-stage care for
patients who received care provided by the transprofessional model versus the
conventional model.
The final research question regarding improved quality of life for the
experimental group versus the control group was not supported at the normally ac
cepted level of statistical significance. Gathering quality of life data presents a
problem in the HIV/AIDS population. The combination of the time required to
engage patients in responding to quality of life questions combined with patients'
increasing degree of fatigue produced by the advance of the disease makes quality
203
of life data unreliable. The quality of life analysis included in this discussion is
therefore explorative in nature.
Intent of the Models of Care
Hypothesis 1: The transprofessional model of care will demonstrate a
blended intent in services provided to patients versus a singular intent of care
evident in the conventional model of care. Blended intent will be measured by the
presence of a multi-disciplinary approach to HC services and progress notes on
patient care issues. The transprofessional model will produce progress notes by
nurses and social workers that acknowledge both biological as well as psychosocial
issues to a significantly greater extent than the notes of nurses in the conventional
model of care.
The analysis of demonstrated the significant effect that the intent score and
MSW visits had on defining the transprofessional model of care. The analysis in
dicated that the intent of care could be distinguished between the transprofessional
model and the CC model. Therefore, the null hypothesis that there would be no
significant difference in intent between the transprofessional model of care and the
conventional model of care was rejected.
Intent was defined as both the makeup of the teams that visited patients (the
context of intent) and the focus of care in those visits (the content of intent). The
context profile of patient visits was defined as the number of visits made by each
discipline to patients and the multi-disciplinary mix of those visits. The content
204
profile of visits was defined as the ratio of purely biological or physiological entries
made by the patient care team in the patient record compared to the bio-psychoso
cial entries, or entries that documented a blended concern with both the physiologi
cal and psychosocial aspects of the patient's disease.
The_Contextof Intent
Patient records were reviewed and compared to the VNA-LA data base to
accurately count the number of visits made to study participants from the beginning
of the study through and including March 31,1996. The average days on service
for the 168 study participants were 120 days or approximately 4 months. Table 10
depicts the average number of visits by discipline made to the study patients
delineated by study groupings.
There existed a significant variation in both the number of visits and the
disciplines making those visits in the VNA-LA. This variation is depicted in the
standard deviations reported in Table 10. The variance in numbers of visits is
reflective of the fact that care plans for patients were negotiated between the HC
nurse and the patient's referring physician. Care plans are very flexible and case
specific. There are no standard protocols for specific diseases or conditions; plans
are individualized to the nurse's perception of the patient's needs. The shape of
the care plan and how it is delivered was reflective, therefore, in large measure, of
the orientation of the nurse case manager. Given this reality and the self-organizing
nature of delivered services, it was possible to discern patterns of care and to
205
Table 10
Home Care Visits by Discipline. 8/1/95-3/31/96
group group
visits visits
Discipline M 3D M £D
Nursing 8.50* 8.93 14.40 23.3
Social work 0.85** 1.90 0.24 1.3
Home health attendant 2.30*** 10.40 11.10 36.9
Physical therapy 0.54 1.90 0.65 4.9
*p < .0 3 . **p < .0 2 . ***p < .0 4 .
206
distinguish the orientation and intent of the team providing patient care in the HC
setting.
To evaluate the difference in average number of visits for days on service
to patients, 1tests were run. The disciplines that were represented in the visit profile
of patients included nursing, social work, home health attendant, and physical
therapy. The average number of visits represented the mean number of visits made
over the patient's stay in home health care. The nurses in the transprofessional
model made 8.5 visits during an average episode of care of 120 days (Table 10).
For the same period of time, conventional model nurses made approximately 14
visits. The mean difference per patient episode was almost 5.94, or almost 6 visits
to * -03).
Social workers in the transprofessional model made an average of .85 visit,
or almost 1, per patient episode of care compared to .24 average visit in the
conventional model of home care. The mean difference in social work visits in the
two models was .61 (c = .02). Not all patients received social work visits. Utilization
of social work in the HC setting for patient visits was done to focus care on the
psychosocial aspects of the patient’s condition. Not ail nursing case managers
utilized social work, and there were no protocols requiring utilization of social work
in the HC arena.
Home health attendants recorded an average of approximately 11 visits to
patients in the conventional setting versus an average of only 2.4 visits in the
transprofessional model. The difference of 8.7 mean visits per patient episode of
207
care was significant (p = .04). Home health attendants are nurse extenders per
forming patient care functions on the level of bathing and night duty respite care.
Physical therapy was utilized almost identically by both models of care: 0.54
mean visit in the transprofessional model and 0.65 visit in the conventional model
of care. There was no statistically significant differences found in the mean visits
between the two models of care.
The profiles of the care teams were very different. The transprofessional
model utilized fewer nursing visits and more social work visits than the conventional
model of care. The conventional model of care utilized a greater number of nursing
visits as well as attendant care visits. The profile of the transprofessional model
suggests a blended focus to the context of care, combining disciplines that frame
the bio-psychosocial aspects of terminal care. As a validation of the training that
the experimental group received in the multi-disciplinarity of transprofessional care,
the experimental group visit profile suggests that they had configured the delivery
of services differently than the CC model. While the conventional model profile of
service delivery combined the disciplines of nursing and attendant care, this should
not be considered a multi-disciplinary focus to service delivery. Nursing attendants
are not trained in the psychosocial aspects of care and function exclusively as
nursing care extenders.
With regard to the context of intent of care, the data allowed rejection of the
null hypothesis that there was no difference in the intent of care between the
208
transprofessional model of home care and the conventional model of home care.
The two profiles of service delivery were distinctly different.
The Content of Intent
Content analysis of the study patients' medical records provided insights into
the focus of care being delivered by caregiving teams. Review of the medical
records was done by a single individual familiar with the structure of medical
records to ensure reliability. Medical records are problem resolution oriented. This
requires that for each patient visit, general observations of the patient need to be
made; the problem being addressed, documented; a resolution of the problem,
formalized in writing; and a plan for subsequent visits detailed. Following a visit,
these types of notes were included in each patient’s medical record by each
discipline seeing the patient.
For the purposes of quantifying the intent of care, the medical record
progress notes were reviewed to discern entries that dealt with the patient's disease
and medical condition (physiologically oriented) and those that dealt with the
patient's state of mind and progress in coping with a terminal illness (psychosocially
oriented). A count of each type of note for each visit was made. For each patient,
in each medical record this resulted in two counts: a physiological count and
psychosocial count. In order to assign a score to each patient that would be
reflective of the intent of care delivered, the number of psychosocial notes were
divided by the number of purely physiological notes. The two counts, divided in
209
this way, provided a ratio of care that quantified the degree to which care was
purely physiologically oriented or the intent was a blend of both physiological and
psychosocial intent. As an example, a count of eight physiologically oriented notes
and two psychosocially oriented notes would result in a ratio of 8:2. Dividing the two
psychosocial notes by the eight physiological notes would result in a score of .25
(1/4). The lower the percentage, the more the overall patient records reflected a
pure medical orientation. The higher the percentage, the more reflective the notes
were of blended orientation. In other words, as the intent score moves up, intent
of care is moving toward a blended orientation. Table 11 contains comments taken
from the medical records of patient study participants. These are actual progress
notes that depict both types of case note entries. Each patient, following content
analysis, was assigned an overall intent of care score.
The data allowed rejection of the null hypothesis that the transprofessional
model of care would not reflect a difference in intent of care when compared to the
conventional model of care. A i test was run comparing the mean scores of patients
treated in the transprofessional model and the CC model. The mean intent score
of patients in the transprofessional model was .30, with a standard deviation of .46;
the mean intent score for patients in the conventional model of care was .11, with
a standard deviation of .30. The mean difference between the two models was .19
(p = .001).
The transprofessional score reflected a ratio of physiological notes to
psychosocial notes of 3:1, while the conventional score reflected a ratio of
210
Table 11
Examples of Patient Care Medical Record Entries
Orientation
of note Examples
Physiological The visit purpose is to explain medication administration to the

patient so that the patient can provide maintenance of his own
IV.
The patient is making minimal progress toward goal of care:

compliance with medication self-administration.
Observed the patient preparing his own IV. The patient is very
compliant.
The patient has CMV retinitis resulting in poor vision; minimal

progress is being made in medication compliance.
The patient is to continue to receive physical therapy until

death.
Psychosocial The patient is terminal. The plan is to provide comfort and emo
tional support.
Both the patient and caregiver are anxious and need to be

encouraged to verbalize feelings.
Much needed emotional support was provided to patient. The

plan is to continue support to enhance care of complex patient
needs.
Discussed continued risk to patient of continuing on current

course of medications with patient physician.
Patient expressed a great deal of anxiety over his condition and

medications. Ordered a counseling session by the social
worker.
Note. IV = intravenous. CMV = cytomegalovirus.
211
approximately 8:1. The transprofessional model of care intent score compared to
the conventional model of care score reflected approximately 3 times greater
attention to the psychosocial aspects of care than was so in the conventional model
of care. The transprofessional model score showed a greater movement toward
blended intent in care than the conventional model.
In order to understand the etiology of the differences in intent of care
between the two models and to clearly establish the fact that the two models of care
could be distinguished by a distinct difference in service delivery teams, logistic
regression analyses were run using the model of care as the dependent variable.
Logistic regression was utilized to evaluate the contribution of the independent
variables in differentiating between two categories of a dependent variable. Since
logistic regression requires that the dependent variable be measured at the nominal
level, the transprofessional model was coded as "1" and the conventional model
was reported as "0."
Tables 12 and 13 reflect the results of the logistic regressions that were run.
Each of the discipline visits in each of the regression models was entered as an
independent variable. The intent score was entered separately as an independent
variable in the first model and as an interaction term, a combined variable with
nursing visits in the second model. Both regression models demonstrated that the
experimental group received care from a differently configured team than the
control group. In addition, the two regression models and the discriminant function
212
Table 12
Logistic Regression of Determinants of the Model CM =1_&81
Model 1 Odds Odds ratio confi

variable b r ratio dence interval
Physical therapist -0.26 0.06 0.00 0.97 0.85-1.09

Attendant -0.08* 0.03 -0.14 0.92 0.86-0.98
MSW 0.68* 0.26 0.14 1.95 1.44-2.40
RN -0.03 0.02 -0.08 0.97 0.93-1.01
Intent 1.90* 0.75 0.14 6.65 5.18-8.12
Note. MSW = Master in Social Work: RN = reaistered nurse •
*p = .01.
Table 13
Loaistic Rearession of Determinants of the Model (N = 1681
Model 2 Odds Odds ratio confi

variable b r ratio dence interval
Physical therapist -0.50 0.07 0.00 0.95 0.81-1.09

Attendant -0.11* 0.04 -0.14 0.90 0.82-0.98
MSW 0.78* 0.28 0.16 2.17 1.62-2.72
RN -0.06* 0.02 -0.16 0.95 0.91-0.99
Intent (RN) 0.25* 0.08 0.20 1.30 1.14-1.46
Note. MSW = Master in Social Work; RN = registered nurse.
213
analysis made it clear that what distinguished the configuration of the care team
in the experimental group was the presence of the MSW and the intent score.
Logistic regression has two desirable properties in epidemiological research:
it provides a prediction rating, and it provides odds ratios. The prediction rating is
an overall percentage of how well the model was able to classify (predict) study
participants into the categories of the dependent variable. The odds ratio is the
overall size of the increase expected in the model each time a unit of change takes
place in the independent variable.
The overall fit of a model, which means a determination of the explanatory
power of the model, is reported in a two-step process as log likelihoods (-2LLs).
The first log likelihood is the explanatory power of the model with only the constant
term included. The second log likelihood is a value with all independent variables
added to the model. If the log likelihood decreases between the two steps and is
significant, the null hypothesis, which states that the regression coefficients of the
independent variables are 0 and the model has no explanatory power, can be
rejected. The absolute change in the two steps is an indication of the overall
explanatory power of the model.
Two logistic regression models were run to explore the variables that
distinguished the transprofessional model of care from the CC model. The -2LL
(log likelihood) for the first model was 196, compared to a -2LL with only the
constant in the model of 232.8. The improvement in the -2LL was 35.8 and was
significant at the .000 level of significance. The -2LL for the second model was 189,
214
compared to a -2LL with only the constant in the model of 232.8. The improvement
in the -2LL was 43.4, which was significant at the .000 level of significance. The
improvement in the log likelihoods in the models means that the data “fit” the
models. In other words, the models had significant explanatory power. Both
models in Table 12 had a rate of 67.3% of correctly predicting which patients
belonged to the experimental group and the control group.
The first regression model in Table 12 was run entering the key independent
variables without combining terms in order to understand the impact of these
variables separately. The significant independent variables in the first model were
attendant care (HHA) visits, MSW visits, and the intent score. The nursing visits
score just missed being statistically significant at the .05 level of significance. Since
the experimental group was coded as 1, all signs of the regression coefficients and
the odds ratio had to do with prediction into the experimental group. The coefficient
for HHA visits was negative, meaning a decrease in attendant visits would increase
the odds of care belonging to the experimental group (transprofessional model) by
.92.
The largest contributions to changes in the model in predicting the
transprofessional model of care came from the intent score. A positive increase
in the intent score would result in a 6.6 greater likelihood that a patient with an
increased intent score would be cared for by the transprofessional model. The
MSW coefficient was positive, meaning that as MSW visits increased, the odds of
care being the transprofessional model increased by 1.9 times. In addition, the
215
partial correlations between the dependent variable study group and theseinde-
pendent variables ranged from .13 to .14, with the largest r (.14) belonging to MSW
visits. In other words, MSW visits explained 14% of the variance in model of care.
The second logistic model in Table 13 was run to understand the interaction
effect of the intent score on nursing, given the strength of the intent score in
predicting the transprofessional model of care in the first logistic regression. In the
second model, nursing visits achieved significance at the .01 level with an odds
ratio of .95. The coefficient was negative, meaning that as nursing visits decreased,
the odds of the model of care being the transprofessional model increased by the
odds ratio, .95. The MSW visits odd ratio in Model 2 was 2.2. As MSW visits
increased, the odds of the model being the transprofessional model of care went
up 2.2 times. Most important in this second model, however, was the interaction
of RN visits with the intent score, their combined effect and the effect of intent score
on nursing as a determinant of the transprofessional model of care. If the
regression coefficient for the interaction term was significant and the odds ratio for
the interaction term was greater than the odds ratio of either of the two variables
independently, then the interaction effect would be considered significant and
multiplicative (Munro & Page, 1993). Interaction terms that met these criteria were
considered to be extremely powerful predictors. With regard to the second model,
nursing in interaction with the intent score produced an odds ratio greater than the
odds ratio of nursing visits alone. Given the change in nursing from nonsignificance
216
in the first logistic model to significance in the second logistic model, the change
was the impact of the intent score on nursing visits.
Acknowledgment
Hypothesis 2 : The transprofessional model of care will ensure that the
acknowledgment discussion, openly stated awareness of the terminal prognosis,
as reflected in patient's medical records, will occur more often than in the conven
tional model of terminal care. The expectation is that patients in the transprofes
sional model will acknowledge their terminal diagnosis with significantly fewer days
of HC service and significantly earlier in the disease treatment process than par
ticipants in the conventional model of care.
Given the attributes of hospice nurses and social workers as identified in the
research, facilitation of the acknowledgment process should be an integral part of
the competencies about death and dying that these professionals bring to the
terminal care process. Further, the transprofessional model should be demon
strated to be the single most impacting factor in bringing about the acknowledgment
process.
Acknowledgment of the terminal prognosis signals that the patient has
openly communicated with the care system the terminal nature of his/her condition.
This event is recorded in the patient’s medical record. Acknowledgment is always
a prerequisite to a hospice admission. This single event is a significant marker in
the terminal care process. The findings here pointed to acknowledgment
217
happening more often in the transprofessional model of care and the acknowledg
ment event coming earlier in the care process than was so in the conventional
model of care.
Group Differences Regarding Acknowl

edgment
Table 14 illustrates the chi-square test that was performed to evaluate the
differences in acknowledgment and nonacknowledgment between the experimental
group and the control group. The results indicates that the transprofessional model
of care did in fact produce more acknowledgments of the terminal prognosis than
the conventional model of care.
Table 14
a a v a fi
Acknowledgment Nonacknowledgment
Group n % n %
Experimental 32 39.5% * 49 60.5%

Control 16 18.4% 71 81.6%
*p - .002.
The difference between the experimental and control group was significant
at the .002 level of significance, indicating a rejection of the null hypothesis that
218
there would be no differences in the number of acknowledgments between the
experimental and control groups. The ratio of acknowledgments between groups
was 2:1 (32 acknowledgments divided by 16 acknowledgments). Within-group
comparison revealed that 40% of the experimental group participants acknowl
edged their terminal prognosis, while slightly less than 20% of the control group
participants had done so.
The number of days from start of care date that it took for the acknowledg
ment to occur is an important factor in studying the acknowledgment process.
Earlier acknowledgment as compared to acknowledgment that takes place closer
to death might be an indication that the acknowledgment process is actively being
facilitated. Table 15 illustrates th e! test that was performed between the two study
groups comparing the number of days from patient’s start of care date to the
acknowledgment. The null hypothesis that there would be no difference between
the two models of care in patient days on service before the acknowledgment was
not rejected at the .05 level of significance. The difference in number of days from
start of care date to acknowledgment between the experimental group and the
control group was 35.5 days. The average days to acknowledgment for the
experimental group was 61.2 days (SQ = 86) compared to 96.8 days (3Q = 96) for
the control group. The p value of the one-tailed i test of .07, reported here as
significant, was higher that the more traditional p value of .05 adopted for findings
of significance. Two factors warranted that the null hypothesis be rejected at a 93%
level of certainty regarding a finding of statistical significance in this case: (a) the
219
direction of the difference, which was specified in the hypothesis; and (b) the fact
that as a directional hypothesis, a one-tailed test can be used. With a one-tailed
test and the specified hypothesis direction being achieved, a q value of .10 is
comparable to a two-tailed p value of .05, according to Cohen (1988). Given these
factors, one could reject the null hypothesis that there would be no significant
difference in the number of days to acknowledgment from start-of-care date
between the experimental and control group, with minimal concern for committing
a Type 1 error.
Table 15
Comparison of Days to Acknowledgment
Number of Mean days from

Group acknowledgments start of care
Experimental 32 49.8*
Control 16 73.9
= .07 (one-tailed i test).
Acknowledgment and Death
Twenty-one patients died while on service during the study: 11 control group
patients and 10 experimental group patients. Of these numbers, 100% of the
experimental group patients had a recorded acknowledgment of their terminal
prognosis. Sixty-three percent of the control group had recorded acknowledgments
220
of the terminal prognosis in their medical records. A chi-square test was performed
on the differences in acknowledgment for those who died from each of the study
groups. The difference in acknowledgments between the two groups, 100% for the
experimental group versus 63% for the control group, was statistically significant
(C = .03).
Understanding Acknowledgment
In order to understand the variables that significantly contributed to
acknowledgment, two logistic regression models were run. Like intent, the two
models represented the independent variables entered separately: Model 1 and
Model 2 (interaction variables). Table 16 illustrates the variables that were
determined to be significant. In both models, admitting conditions, change in
patient conditions, days on service, ethnicity, patient awareness upon admission
of both the terminal diagnosis and prognosis, presence of a primary caregiver, the
model of care (experimental and control groups), and the intent score were entered.
The difference in the two models was that model of care and intent score were
entered as an interaction term in the second model, combining variables to
determine the effect on the overall model. The dependent variable in both models
was acknowledgment, which was categorized as "1" for the occurrence of ac
knowledgment and "0" for nonoccurrence. Model of care in both models was
entered as "1" for the experimental group and "0" for the control group.
Table 16
Logistic Regression pf Factors, in Acknowledgment ol Terminal Prognosis (N = 168)
Signifi Odds Odds ratio con

Variable b SE r cance ratio fidence interval
Model 1 (significant variables)
Intent score 3.26 0.77 0.28 .000 26.06 24.56-27.56

Days on service 0.0095 0.01 0.19 .002 1.00 0.98- 1.02
Model 2 (significant variables)
Intent score X 0.89 1.74

Model 3.94 0.31 .000 54.22 52.50-55.96
Days on service 0.01 0.01 0.17 .001 1.00 0.98- 1.02
222
The most significant contributor to the likelihood of acknowledgment
occurring in the first model was intent score. As the intent score increased a
percentage point, the resulting change would create an odds ratio of 26.1. In other
words, as the intent score increased, the likelihood that acknowledgment of the
terminal prognosis would occur increased by 26 times. Reflective of this significant
contribution to acknowledgment, the r for intent score was .28, meaning that intent
score was responsible for 28% of the variation (change) in acknowledgment.
The improvement in both models was approximately 59—a shift in the -2LL
from 194.6 to 135. The improvement change was significant. The overall prediction
power of the first model was 80.5%. However, the first model correctly predicted
those who acknowledged only 47.8% of the time. The improvement in the second
model in predicting those who acknowledged was 52.2%—over 5%. The overall
prediction success of the second model was 81.5% , which was a slight increase
over the second model. In both models days on service was found to be a
significant independent variable. The odds ratio for days on sen/ice went from .9
to slightly over 1.0 between the two models. As days on service increased by a
day, the odds of acknowledgment occurring increased approximately by 1 time.
The odds ratio in the second model for acknowledgment and the transprofes
sional model of care as interaction terms was 54.2. As the intent score increased
and the patient was being cared for by the transprofessional model, the likelihood
that acknowledgment of the terminal prognosis would take place was 54.2 times
greater. The only change to the model in the second run was the combining of
223
intent score and the model of care as an interaction term. Significance of the
interaction term is demonstrated if the odds ratio for the interaction term is greater
than the odds ratio for the interaction terms run separately and if the fe is significant.
Both of these conditions were met for the interaction term in the second model.
The Hospice Admission
Hypothesis 3 : The transprofessional model of care will generate a longer
length of stay on hospice—more days on service—than current traditional models
of terminal care as measured by the hospice admission and days on home services.
This means that hospice admissions should occur earlier in the terminal treatment
process for the transprofessional model of care patients than for conventional
model of care patients. The model of care, i.e., the transprofessional model, should
be the largest single contributing factor to the hospice admit.
A greater number of experimental group study patients than control group
patients were admitted to hospice. In addition, experimental group study patients
were admitted to hospice with fewer days on service than control group patients.
The average length of stay for experimental group patients was greater than for
control group patients in hospice through the 8 months of the study. During the
study period, a relatively small number of patients (28, or 16.7% of overall study
patients) were admitted to hospice. This was to be expected since the HIV/AIDS
terminal trajectory from point of multiple infections, the condition of the majority of
study patients, is 12-18 months.
224
In comparing those admitted to hospice in both groups, a chi-square test
revealed that there was a significant difference (p = .000) between the number of
patients admitted to hospice from the experimental group (17) and those admitted
to hospice from the control group (11). In examining the specific study groups, the
17 experimental study patients admitted to hospice represented 21% of the
experimental group population, while the 11 control group patients represented
12.6% of the control group population. Reports from the National Hospice Study,
as cited in Chapter 3, indicated that the national average for admissions to hospice
was 10% of all eligible population members. A binomial test, which looks at
comparisons of proportions between populations, found that the proportion of
experimental group patients admitted to hospice was significantly greater (p = .001)
than the national average of admissions to hospice (10% ), while the proportion of
control group patients was not significantly different than the national average
(Table 17).
Days of service on hospice for the experimental group significantly differed
compared to the control group (p = .08), while days on service between the two
groups leading up to the hospice admission were not statistically significant. Table
18 delineates both the comparison of the days on service leading up to the hospice
admission and days on hospice through March 3 1 ,1 9 9 6 for both study groups.
While the experimental group reported an average number of days on service
before the hospice admission of 70.8 and the control group reported a mean of
82.7 days on service before the hospice admission, the mean difference of 11.9
225
Table 17
S/1/95-.3/31/96
Number of Percentage
Group hospice admits admitted
Experimental 17 21%*
Control 11 13%
National Hospice Study 10%a
T aken from Hospice Care Systems: Structure. Process. Costs, and

Outcome, by V. Mor and S. Masterson-Allen, 1987, New York:
Springer Publishing, p. 15.
*{2 = . 001 .
Table 18
Comparison of Days to Hospice Admission and Davs on Hospice. 8/1/95-3/31/96
Mean number
Factor n of days SD
Days to admission
Experimental group 17 70.8 59.5
Control group 11 59.2
Days on hospice
Experimental group 17 24.1* 24.0
Control group 11 12.8 17.0
*p = .08.
226
days was not significant at the .05 level. The direction, however, suggested that
the transprofessional model of care did not move patients into hospice earlier than
the CC model.
The difference in the length of stay on hospice between the experimental
group and the control group was 11.3 days, which was significant at a c value of
.08. While this was above a standard of .05 and the null hypothesis was not
rejected at this standard le v e l, a 92% certainty of not committing a Type 1 error
is acceptable when a one-tailed test is performed and the findings are in the
direction predicted. Therefore, it is reasonable to reject the null hypothesis that
there would be no difference between the two groups with regard to average days
on service in hospice.
Another aspect of days on hospice service, which served as an indicator
of the distinctions between the two models of care, was the difference in the
number of days on hospice service for the 21 study patients who died. Sixty
percent of those patients who died (13) were admitted to hospice. Seven of these
patients were experimental group patients, and 6 were control group patients. A
I test was performed on the mean length of stay on hospice before death for these
patients. The difference of mean days between the experimental group and control
group was 10.5 days. The average length of stay on hospice for the patients who
died was 15.7 days for the experimental group and 5.2 days for the control group.
The £ value of the mean difference was .07 run as a one-tailed test. The direction
of the difference was as predicted and was meaningful.
227
Understanding the Hospice Admission
As a product of the requirement that all patients admitted to hospice must
acknowledge the terminal nature of their prognosis by formally stipulating that they
understand that they have 6 months or less to live, the correlation between hospice
admission and acknowledgment was a perfect Pearson's r of 1.00. Acknowledg
ment, however, does not always lead to a hospice admission. There were 48
acknowledgments and 28 hospice admissions, or a ratio 1:1.7 (approaching
almost twice the number of acknowledgments to hospice admissions). Given that
the variables of acknowledgment and admission to hospice were both nominal level
variables, a Spearman rank order correlation was run. The correlation coefficient
was .70, c = .000, between acknowledgment and admission to hospice.
In running logistic regressions in order to evaluate the determinants of the
hospice admission, acknowledgment was run as a covariate in the analysis. This
permitted other independent variables to be evaluated with respect to their impact
on the hospice admission. The prediction power of the model was an overall
97.1 %. The model correctly predicted 94.4% of those not admitted to hospice and
80% of those admitted to hospice. A model which regressed patient insurance
source, change in physical conditions, days on service in home care, ethnicity,
gender, and acknowledgment as a covariate on hospice admission was run. The
-2LL after the addition of all variables entered at the same time was 47.1—a -2LL
change of 81.0, p = .000, from the beginning log likelihood of 128.13. The predic
tion power of the model was an overall 91.7% .
228
As a covariate, acknowledgment was not loaded into the model. Only days
on service loaded as a significant independent variable in the model. The p for
total days on service was .013, p = .03; the odds ratio was 1.0128. For each
additional day on service, the likelihood of a hospice admission increased approx
imately 1 unit. The partial r for days on service was .15. Days on service, while
the only significant variable to be identified in the model, accounted for 15% of the
variance in the hospice admit.
The numbers of days on service in hospice and the increased proportion
of hospice admissions produced by the transprofessional model demonstrated that
the transprofessional did produce significantly more admissions to hospice and.
additionally, did produce a significantly greater number of days on service. There
fore, the null hypothesis stating there would be no differences between the two
models with regard to days on service in hospice and hospice admissions was
rejected.
Costs of Care
Hypothesis 4 : The transprofessional model of care utilized throughout the
terminal phase of treatment, beginning with a patient’s admission to skilled HC
services, will produce lower costs with regard to visits, supplies, equipment, and
pharmaceuticals for the entire period of care from admission to death than the
conventional model of care.
229
The findings to be discussed with regard to cost of care clearly demon
strated that the transprofessional model of care reduced costs throughout the
entire episode of care in relation to the conventional model of care. Significant in
these findings was the fact that admission to hospice, cited in the cost research
literature in Chapter 3, was not the significant contributor in the distinction between
cost differentials in the two models of care.
Costs, has previously defined in Chapter 4, cover those areas of care that
are under the direct control of the HC agency and HC delivery team. These costs
are categorized as labor costs and medication costs. Inclusive in the labor costs
are supply and equipment items that are a part of care delivery visits. Medication
costs are inclusive of drugs prescribed by the patient’s physician and administered
by the HC agency pharmacy. Included in these medications are such items as syr
inges and medication IV pumps that are required to provide the prescribed med
ication dosages. The costs include both direct charges (salaries and benefits for
professional caregivers) and indirect costs (overhead). These costs are considered
fully loaded.
Overall Costs of Care
Patients in this study averaged 120 days on HC service through March 31,
1996. The mean cost for this service encountered was $5,155.00; the median
cost, $2,500.71. The range of costs per encounter went from $140.00 to
$30,283.00. This mean cost resulted in a daily cost of $43.00 per patient. Cost
230
per days of service numbers, while appearing to be illustrative, did not accurately
reflect the realities of delivering services. Services in HC are not provided on a
daily basis. The personnel visits per week in this study averaged two. and
medication therapies were ordered for 2- to 3-week periods. These averages var
ied significantly, however. For this reason, the cost per encounter in HC was a
more reliable measure for comparison.
The transprofessional model produced lower costs overall than the con
ventional model throughout the entire episode of patient care. Table 19 provides
a categorical breakdown of the total costs for the entire study as well as a
categorical presentation of the major components of total costs: medication costs
and labor costs. The labor costs are broken down by the disciplines providing the
majority of patient care in this study (registered nursing, HC attendants, social
worker, and physical therapy) as follows:
1. The mean visit cost throughout the episode of care, 120 days, for
patients on the study was $2,203.00.
2. The mean cost of registered nursing for the entire episode of care was
$1,626.66.
3. The mean cost for the entire episode of care for HC attendant service
was $415.00.
4. The mean cost for social work for the entire episode of care was $136.
5. The lowest mean cost for the entire episode of care was for physical
therapy ($75.00).
231
Table 19
Total Costs and Costs by SubcateQQriesJN = 168). 8/1/95-3/31/96
Cumulative
Costs Frequency Percentage percentage
Total
$0-1,080 52 31% 31%
$1,081-$2,000 19 11% 42%
$2,001-$3,000 22 13% 55%
$3,001-$4,500 23 14% 69%
$4,501-$10,000 28 17% 86%
>$10,000 24 14% 100%
Labor
$0-$500 51 30% 30%
$501 -$ 1,000 32 19% 49%
$1,501-$2,000 16 10% 59%
$2,001-$3,000 12 7% 66%
$3,001-$4,000 21 13% 79%
> $4,001 25 14% 100%
Medication
$0-$200 87 51% 51%
$201-$1,000 14 8% 59%
$1,001-$2,500 19 11% 70%
$2,501-$4,500 23 14% 84%
> $4,501 25 16% 100%
232
The mean medication cost for the average patient encounter was $2,952.00.
Medications are the single largest area of cost with regard to HIV/ AIDS. In
addition, medication costs have most often been excluded in terminal care studies.
Their inclusion in this study was critical given the major component of care costs
that they represent. As highlighted in Table 18, medical record transcriptions/
medication administration is a major focus of the conventional model of care. The
transprofessional care model notes reflected a concern over the course of
medication administration and the impact that medications were having on the
patients' adjustment to the terminal nature of their disease. Medication costs,
therefore, represent a part of the HC costs that potentially can be affected by the
model of care.
The transprofessional model has the capability to demonstrate a lower med
ication cost for the entire episode of care than the conventional model of care.
Table 20 lists the major medications that are part of the HIV/AIDS treatment that
were most commonly used by patients in this study. This table is not an exhaustive
list of medications but rather the most prevalent medications used in the treatment
of these particular patients.
Many HIV/AIDS patients are on multiple medications. The average number
of medications for participants in this study was five medications at any one time.
In addition to the prescribed medications, patients may be on a host of topical oint
ments that can be purchased without prescriptions. Many patients—approximately
233
Table 20
Medications and Costs Utilized in Treatment of Study Patients. 8/1/95-3/31/96
Therapy
Medication Purpose duration Daily cost
Retrovir (AZT) anti-infection 1 year $ 9.00
Diflucan antibiotic 2 weeks 6.00
Neupogen malignancies 2 weeks 15.00
Zovirax (ointment) herpes 1 week 19.00
Proventil asthma 1 year 10.00
Ganciclovir retinitis 1 year 36.00
Cipro urinary tract 1 week 4.00
Mycobutin fatigue/fever 1 year 7.00
Vancomycin infections 1 week 120.00
234
20% of the study patients—were also on experimental medications which had no
charge.
To articulate the differences in costs between the transprofessional model
and the conventional model, a series of t tests were run. As stated at the begin
ning of this section, the transprofessional model produced lower costs for the
overall episode of care than the conventional model of care. Table 21 summarizes
the results of i tests that were performed to evaluate the costs between the
experimental group and the control group for the entire study. Mean costs are
listed hierarchically, going from overall costs through the components of total costs.
The mean difference in overall costs for the study between the experimental
group and the control group was $2,611.87, which was statistically significant (p
= .02). Therefore, the null hypothesis that there would be no total cost differences
for the entire episode of care between the experimental group and the control
group is rejected. The mean difference between the groups was statistically
significant. The difference between the two groups was also in the direction
predicted in the hypothesis, with lower costs overall being experienced by the
experimental group. The difference between the two models of care with respect
to total costs translated to a 59% differential, meaning that for every dollar of cost
to experimental patients, the comparable dollar cost to control patients was $1.59.
The mean difference between the two study groups with regard to medica
tion was $1,339.43. While the difference was in the direction predicted in the
hypothesis, with lower costs being experienced by the experimental group, the
235
Table 21
Comparison of Costs Between Study Groups. 8/1/95-3/31/96
Mean experi Mean differ Mean control

Category mental cost ence3 cost
Total costs $3,802.43* - $2,611.86 $6,414.30
Medication $2,258.49 $1,339.44 $3,597.92
Labor $1,543.95** - $1,217.43 $2,816.38

RN 1,196.05’ * 831.54 2,027.59
MSW 136.30 + 97.68 38.62*'
HHA 143.70* 524.57 668.28
PT 67.90 13.99 81.90
Note. RN = registered nurse; MSW = Master in Social Work; HHA = home health
aide; PT = physical therapist.
aAII tests of difference were one-tailed.
*P = .02 . **p = .0 1 .
236
difference was not statistically significant at the .05 level. The one-tailed test of
significance had a q value of .13. Therefore, we cannot reject the null hypothesis
that there would be no difference in mean cost between the two study groups with
regard to medications.
The mean total labor cost difference between the study groups of $1.272.43
was statistically significant (c = .01). The difference in total labor costs between
the two groups was in the direction predicted by the hypothesis, with lower costs
being experienced by the experimental group. Given the level of statistical signif
icance, the data allowed for the rejection of the null hypothesis that stated there
would be no difference between the two groups with regard to total labor costs.
The t tests that were run with the component parts of labor costs revealed
that the differences in labor were produced by RN, MSW, and HHA costs. There
was no statistically significant difference in physical therapy costs between the two
study groups. The null hypothesis with regard to there being no difference
between the groups in nursing costs was therefore rejected at the .02 level of
significance. The mean difference in nursing costs between the two groups of
approximately $831.00 was statistically significant. The null hypothesis with regard
to no difference in mean social work costs between the two groups was also
rejected at the .01 level of significance. The mean difference of $97.00 between
the two groups was statistically significant. With regard to direction, the experi
mental group reported higher social work costs than the control group. Finally, the
null hypothesis with regard to HHA costs that stated that there would be no
237
statistically significant difference between the mean HHA costs of the two groups
was rejected at the .02 level of significance. The mean difference in the direction
of lower experimental group costs of approximately $524.00 was statistically
significant.
With regard to overall costs, as previously stated, the transprofessional
model produced lower costs of care than the conventional model during the entire
episode of care. The comparison reflects the two models operating in similar
medical care environments with equivalent patients. The differential in costs,
therefore, could be attributed to the model of care.
Hospice__Costs Versus Standard Care Costs
While not part of the cost hypothesis, an interesting difference was found
between the cost of patients on hospice in the study and those not admitted to
hospice. The finding of lower costs for nonhospice patients was in part contradic
tory to previous hospice and nonhospice studies. For those study patients who
were admitted to hospice from either of the two groups (N = 28), their costs were
isolated and compared to study patients who were not admitted to hospice from
both groups. Historical cost research comparing hospice costs to standard or
conventional care has made the case that hospice costs were lower. When the
same type of comparison was done for this study, results indicated that hospice
patients did not demonstrate lower costs for the entire episode of care compared
to nonhospice patients. Table 22 summarizes the i tests done with respect to
238
hospice patients’ costs versus nonhospice patients’ costs. Only the mean
difference in labor costs was significantly different between the two groups, with
the lower mean labor costs being reported by those who were not admitted to
hospice.
Table 22
Comparison of Costs Between Hospice and Nonhospice Patients. 8/1/95-3/31/96
Mean hos Mean differ Mean nonhos

Category pice costs ence® pice costs
Total costs $6,370.00 + $1,458.00 $4,911.00'

Medication 2.957.00 + 6.90 2.950.00
Labor 3.412.00 + 1,451.00 1.961.00
aAII tests of difference were one-tailed.
*B = .0 1 .
Factors Impacting Costs of Care
A model to explore the determinants of total costs was built based on the
outcomes of earlier analysis from the literature cited in Chapter 3. The total costs
of care were entered as the dependent variable and regressed on the model study
group, days on service, gender, ethnicity (coded as dummy variables), insurance
earner, intent score, RN visits, MSW visits, HHA visits, physical therapy visits, and
change in condition. Table 23, which summarizes the results of the multiple re
gression that was run, indicates that both RN visits and HHA visits had a significant
239
impact on costs. Only those variables that were significant are reported in the
table. The forced entry method was utilized in entering variables as opposed to
a forward or backward elimination approach. The forced entry approach is more
conservative than other methods. Other forms of stepped entry often result in
different models and levels of significance, given the order in which the variables
were entered (Pedhazur, 1990).
Table 23
Results of the Regression of Total Episode Costs (N = 1681
Regression Standard Signifi

Variable coefficient beta cance
Registered nurse visits 375.92 .752 .001

Home health aide visits 54.88 .04 .03
Note. Multiple r = .93; r2 = .87; adjusted r2 = .70; p = .005.
Only RN and HHA visits loaded as significant contributors to the model. The
overall model was significant (p = .005). The adjusted r2 of .70 indicated that the
model explained 70% of the variance in the dependent variable, total costs. The
standardized beta of .752 for RN visits compared to the .04 beta for HHA visits
indicated that the significantly greater contribution to the change in total costs was
made by the RN visits. For a one-unit change in RN visits, i.e., an additional RN
visit, the total costs of care were projected to increase by $375.92. The impact of
240
the RN was pivotal in the total cost-of-care picture with regard to this study
population. Similar regression models were run on pharmacy costs and labor costs
with the same results as the regression model for total costs.
In the final analysis, the transprofessional model of care did produce lower
costs throughout the entire episode of care. The differential can be attributed to
the RN visits specifically. The RN case manager was a major controller of re
sources throughout the HC process and, as gate keeper of the resource process,
influenced utilization of resources.
Quality of Life
A subsample of 60 patients, who consented to do phone interviews,
participated in the completion of the SF-21 quality of life questionnaire and the
KRS. This exploration of quality of life as an outcome measure in the evaluation
of terminal care proved most useful in reconceptualizing a useful quality of life
measure for terminal care but was most frustrating in evaluating the results of the
concept as utilized in this study.
The discussion presented here is briefly focused on the initial results
achieved with the SF-21 as it was used in the study with the subsample. A further
discussion provides a reconceptualization of the quality of life instrument as it might
be used on a terminal HC population. It is clear, as a result of this exploration, that
with HC patients in the final stages of a terminal disease, current quality of life
241
instruments are conceived with too many domains and are not sensitive to the
aspects of living that define quality life for this category of patients.
The Kamofsky Rating Scale
The KRS (Appendix 5) is graduated to depict normal patient functioning
through and including death. This instrument has been used extensively in the
acute hospital setting and has high rater reliability (Morris et a!.. 1986b). The
instrument was completed by registered HC nurses every 30 days on the subsam
ple patients. The purpose of the scale is to track the patients' decline as death
nears. As reported at the beginning of this chapter, approximately 70% of the
study sample entered home care with either wasting syndrome, toxoplasmosis,
or CMV. These are all life-threatening conditions that very quickly render a patient
severely disabled and requiring intensive home care. The Kamofsky rating for this
level of functioning should be between and 30 and 40. The median score reported
for the subsample was 70, with 68.2% of the subsample characterized with a KRS
score of between 70 and 100.
The 70 rating indicates patients who are able to care for themselves but
unable to carry on normal activity or do active work. In addition to the initial rating,
scores over the days on service for study patients did not change until death. The
KRS scores of the three individuals who died in the subsample dropped just prior
to death to a 10 (moribund, fatal processes progressing rapidly). In evaluating
these results, brief discussions were held with a randomly selected group of nurses
242
caring for these patients. No mention was made of specific scores, and the
session was held as an inquiry with regard as to the most useful of several
instruments utilized in the study.
The Kamofsky scores which were recorded for the subsample were
correlated with the Physical Functioning and Overall Health Rating dimensions of
the SF-21. No statistical significance was found in the correlation between these
two scales. The SF-21 Physical Functioning scale is the patient’s perception of
his/her physical condition as a limiting factor in functioning. In every case, the
patient’s physical functioning score was higher than the rating on the Kamofsky
given by the nurse. It was also interesting to note that the average physical
functioning score recorded for the three patients who died, completed within 2
weeks of death, was 100 points. This is the highest rating allowable in the SF-21
and was an indication of normal functioning.
The S F-21: Quality of Life
This instrument, as detailed in Chapter 4, was completed once a month by
trained, MSW level social workers. The difficulties in completing this 21-item
questionnaire were enormous and the results almost unusable in most instances.
The interviewers reported that the instrument required well over 1.5 hours to
complete and this time span was not achieved in a single phone call. In a majority
of cases, two phone calls were required, often separated by as much as several
days. Interviewers reported that patients became tired in responding to the
243
questions and often lost their concentration. The results that were achieved in
completed questionnaires reflected this difficulty. As one interviewer stated, i was
told by the patient that he was near death, but that I should put a 5 down [highest
possible functioning score] for current level of functioning.”
Only 32 usable interviews were obtained. The mean response for the 21
questions was 52.3, with a range from 27.2 to 86.3. The higher the score on the
SF-21, the closer the patient was to exhibiting no limiting physical conditions, no
debilitating cognitive problems, and a normal overall health rating. Given the wide
variation in responses from a population that did not significantly vary with regard
to disease stage and admitting conditions, the responses were disconcerting. A
factor analysis was run on the SF-21 as well as a Cronbach’s alpha in order to
discern the underlying factors of the instrument and to test reliability. As cited in
Chapter 4, the reliability of SF-21 scale and subscales were reported with very high
alphas. Only half of the subsample provided reliable enough data for the
exploration of quality of life. Given this small sample size, the analysis done here
should be viewed as exploratory in nature.
The factor analysis, which was done with varimax rotation, revealed 15 items
from the original 21 loading on five factors instead of the eight contained in the
instrument. The five factors consisted of items covering social functioning,
emotional well-being, physical functioning, cognitive functioning, and pain. Three
of the original eight domains did not load on any factor: role functioning, en
ergy/fatigue, and current health perceptions. Following the factor analysis, a
244
reliability test was run. The Cronbach’s alpha for the original 21 -item instrument
was an adjusted alpha of .593. A second reliability test was run on the 15 items
that loaded on the five factors, and the alpha did not improve. The low alpha
indicated a considerable amount of variance in responses to the question.
The work of Cleary et al. (1994), discussed in Chapter 3, was utilized.
These researchers believed that quality of life should focus on the psychosocial
aspects of patient functioning. Their theoretical perspective was that the patient’s
cognitive reaction to the disease, when connected to biological information, would
produce a patient profile of reaction to the disease that should be used to measure
quality of life. The original domains of the SF-21 that covered the biological
experience and cognitive aspects of the disease were selected from among the
21 questions, resulting in 8 items being selected.
Table 24 summarizes the results of the confirmatory factor analysis that was
done on these 8 questions. As anticipated, the 8 items loaded on two factors:
general health and cognitive functioning. A reliability test was then run on the
responses using a Cronbach’s alpha for reliability. The standardized item alpha
reported for these 8 items was .90. Given the results of this confirmatory factor
analysis, an evaluation of the subsample was done using these items for
comparative purposes.
General functioning and cognitive functioning evaluation. Generally there
were no significant differences reported between the experimental and control
245
Table 24
Confirmatory Factor Analysis of Quality of Life (N = 32)
Factor 1: General Factor 2: Cognitive

Item health loading loading
Rating overall health .86
Rating health as excellent .54
Feeling bad lately .69
Experiencing health-limited
activities .51
Feeling tired .60
Forgetting things that happened .89
Having reasoning problems .86
Having trouble with attention

span .75
246
groups with regard to the two domains of general physical health and cognitive
functioning. The mean score for the subsample on general health was 37.280 with
a median of 25.4. The highest possible score for general health was 100, which
reflected normal general health. This mean score was more indicative of the
admitting condition of the patients on the study. The mean cognitive score was
73.9 with a median of 86.7. The cognitive functioning of the patients was quite
high. This number was comparable to the results of the National Hospice Study,
which indicated that cognitive functioning does not necessarily follow the terminal
deterioration trajectory experienced with quality of life issues, like physical
functioning (Mor & Masterson-Allen, 1987). Comparative evaluations were run on
these two domains on (a) those in hospice and not in hospice, (b) those who had
died while in the study and those that had not, and (c) study assignment groups.
All mean scores between these groups were not significantly different.
A factorial multiple analysis of variance (MANOVA) was run on the two
domains, with experimental group/control group as one factor and acknowledgment
of the terminal prognosis/nonacknowledgment as another factor. This was done
following the results of quality of life research conducted by Prigerson (1991), who
found a higher quality of life in patients who had acknowledged their terminal
prognosis. Model of care was added as a factor, since the experimental group
reported a greater number of acknowledgments than the control group. In addition
to the Prigerson results, this analysis was done to focus on the cognitive and
emotional aspects of the terminal process as a possible means to surface quality
247
of life factors applicable to end-stage patients. The results of the MANOVA
showed a significant interaction effect on cognitive functioning between acknowl
edgment and group. The f was significant at the .04 level, indicating that the
combination of study group assignment and acknowledgment had a significant ef
fect on the domain of cognitive functioning.
A set of protected t tests was done between study group assignment and
the cognitive functioning score and between acknowledgment and nonacknowl
edgment of the terminal prognosis and cognitive functioning score to discern the
main effects produced by the significant interaction. There was no statistical sig
nificance between study assignment groups, but the mean difference of 24 points
in cognitive functioning scores for those who acknowledged and those who did not
was significant at a p value of .03. The mean cognitive functioning score for those
who acknowledged was 89.5 versus 65.33 for those who had not acknowledged
their terminal prognosis. Acknowledgment, therefore, was the major independent
variable contributing to this significant differential.
More important, however, than statistical significance, was the comparability
found in this result with Prigerson's report of higher quality of life being discovered
where awareness of the terminal prognosis was facilitated. The implications here
are that quality of life in the terminal care arena should be focused on the patient's
general health and, more importantly, on cognitive experiences with care and as
a product of care. The domain of cognitive functioning, unlike the domain of
physical functioning covered by the Kamofsky scale and focused on in the original
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SF-21, did not deteriorate as rapidly in the terminal setting. Patient experience
may well be the key to developing a functional quality of life instrument in end-
stage care.
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CHAPTER 6
DISCUSSION
Vital to this research was the study time frame. Prior end-stage research
has been dominated by post-hoc studies comparing the effects of hospice care
and conventional care. The basic premise of this research effort was the demon
stration of the impact of palliative care during the treatment process preceding
hospice care. The period of time prior to selection of hospice by patients would
answer many of the questions that prior research has raised and left unanswered.
This study captured HC utilization for patients upon admission to services before
hospice was selected, thereby eliminating the major criticism of prior research in
comparing palliative and curative care. That criticism was that hospice patients
self-selected hospice over continued curative care and, therefore, outcomes dem
onstrating the superiority of hospice care were biased in the belief that patients who
favored less intervention self-selected into hospice. The outcomes in this study
were not subject to that criticism and did demonstrate that a palliative type of
approach could produce a different orientation to service delivery that was cost
effective over the entire period of terminal home care.
Evaluating end-stage care for HIV/AIDS patients could have a potentially
profound effect on our approach to terminal care. By expanding the intent of the
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system of care, blending palliative intent with active medical treatment, the benefits
of patient-centered care and cost reductions can be realized throughout the
terminal illness process. As pointed out by hospice advocates Greer and Mor
(1986), Mor and Masterson-Allen (1987), and Scitovsky (1994), a patient-centered
care process and cost reductions in care have been the province of hospice care.
Unfortunately the hospice benefits have not been realized until the last days and
weeks in terminal care, as pointed out by McNeilly (1994). Releasing the palliative
focus of hospice care from its current role as the "last treatment modality" into the
mainstream of terminal home care introduces both patient-centered care and cost
efficiencies into the mainstream of treatment. The end result is significant cost
reductions throughout the entire episode of treatment.
The transprofessional model of care is based on patient care practices and
protocols that have been developed and refined in the delivery of end-stage hos
pice care. The factors that distinguish hospice care from conventional curative
medical care include (a) psychosocial facilitation of terminal patient issues, (b) a
multi-disciplinary team managing and delivering patient and family services, and
(c) an approach of the terminal disease as care issues in opposition to treatment
issues. These qualities, articulated by Strauss (1988) as comfort and articulation
work, were demonstrated to have a substantive impact on the outcomes of the
terminal care process in this study. The following discussion connects the specific
study findings to these broader issues and policy implications for reform of the
terminal care process.
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The Intent of the Transprofessional Model
The findings in this study with regard to intent operationalize a distinctively
different model of terminal care in comparison to the conventional medical model.
The intent of care between the medical model and the transprofessional model is
different and is quantitatively demonstrated in the makeup of delivery care teams
as well as the orientation to treatment of those care teams.
The transprofessional model demonstrated a significantly different profile
in the delivery team providing care than the medical model team. The transpro
fessional model demonstrated a multi-disciplinary approach to care. Both the
number of nursing visits and the utilization of medical social work in the transpro
fessional model distinguished it from the conventional model of care. The utiliza
tion of social work, the inclusion of a discipline different than nursing and a care
partnership indicative of hospice care teams demonstrated that a multi-disciplinary
approach could be service inclusive while at the same time reduce the reliance on
nursing services. The conventional model heavily relies on nursing at its core, to
the relative exclusion of allied health professionals. The greater utilization of the
HC attendant as a nursing service extender in the conventional model versus the
transprofessional model also distinguishes the two models of care.
Validating the different profiles of the care team, while important, established
the distinction between the two models of care. The orientation of care is important
in establishing that the models of care are different in how they approach terminal
care services and manage terminal patient care. The intent score operationalizes
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the orientation of care so that differences in the actual delivery of care can be
measured. Intent becomes a valuable concept in understanding the foundations
of the care models and in assessing the outcomes produced by those models.
While intent represents a pivotal concept in understanding terminal care, it has
remained an elusive theoretical construct until this study.
The findings in this study established that there exists a significant difference
between the two models of care regarding the intent of care. Intent in the delivery
of care can be either biologically/physiologically focused or inclusive of the bio
psychosocial aspects of service delivery and patient care. Content analysis of
patient records, which captured the content and outcomes of individual service
delivery encounters, provided descriptive information on the differences between
the intent of the medical model of care and the transprofessional model of care.
Table 11 in Chapter 5 reflects the nature of the different intents.
The outcome of content analysis made it clear that the conventional model
of care is heavily oriented toward a focus on the biological aspects of patient care.
With an intent score of .11, caregivers providing the conventional model of care
focus patient visits on medication compliance, medication administration, and the
patient’s biological process almost 10 times more than on the patient's issues with
the terminal illness. Caregivers in the transprofessional model, while not ignoring
the biological aspects of care, also focus on the patient's anxiety over medication
therapy and continuously refer to needed emotional support for patients and the
patient's significant others. The transprofessional's notes indicated a blended
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model of care with a ratio slightly better than one psychosocial note to every four
biologically oriented notes. The higher intent score was associated with the
transprofessional model, and the difference in the two models suggests that the
transprofessional caregiver focuses almost 300% more on the psychosocial as
pects of terminal care.
The findings in this study concurred with the earlier findings of Perkins and
Joneson (1985), who discovered a 200% differential in focus of care on psycho
social issues between hospice nurses and acute care hospital nurses. The con
tents of the notes generated by the transprofessional model, which focused on
issues of care related to emotional support, were also found in exploratory work
by Hull (1990) and McGinnis (1986) that compared CC nurses and social workers
with their hospice counterparts.
Social work and a blended focus on bio-psychosocial terminal care define
the transprofessional model of care. This outcome very much defines the qualities
that distinguish palliative care from acute curative medical care. The two aspects
of intent which were validated in this study, i.e., the profile of caregiving teams and
the content of medical records, represent substantial findings in supporting a
reconceptualization of how terminal care could be delivered. In addition, an
understanding of what mix of professional caregivers significantly distinguishes the
transprofessional model from the conventional model of care was also discovered.
When the two models of care were regressed on the intent score and caregiver
visits, the results of the logistic regression and a post-hoc discriminant function
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analysis pointed to the relationship between social work and intent score in
distinguishing the transprofessional model from the conventional model of care.
In summary, the findings with regard to intent establish the distinctiveness
of the two models of care. The utilization of intent as a measurable concept pro
vides a means to better understand the effect orientation has on services and
service outcomes.
Acknowledgment
Acknowledgment as a concept in terminal care research exists both as the
"holy grail" and the "missing link." The concept of acknowledgment was
established in the research of Glaser and Strauss (1965, 1968), Gochman and
Bonham (1988,1990), and Prigerson (1991) as the critical prerequisite factor in
moving care decisions along in the terminal process. While exploratory work by
Gochman and Bonham (1988) and McNeilly (1994) provided exploration of who
among professional caregivers initiates the process of acknowledgment of the
terminal prognosis, research efforts to date have only established the difficulty and
uncertainty with which acknowledgment occurs. An exploration of the concept of
acknowledgment itself is missing in the empirical research on terminal care. The
majority of work that has been done incorporates the acknowledgment of the
terminal prognosis as an intervening concept in the evaluation of the hospice
decision. As a key concept in the terminal care decision making process, the
isolation and understanding of acknowledgment is extremely critical.
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The findings presented here with regard to the act of acknowledgment dem
onstrate that it can be actively facilitated by the transprofessional model of care.
As reported, approximately 28% of the study patients had documented ac
knowledgments of their terminal prognosis after being admitted for care. The
number of acknowledgments attributed to the transprofessional model of care was
significantly greater than the acknowledgments recorded for the conventional
model of care. The acknowledgments in the transprofessional model of care also
occurred significantly sooner in the HC process than did the acknowledgments
under CC.
More important, however, to the discussion of findings of acknowledgment,
is to understand the process involved in acknowledgment facilitation. Intent as a
single independent variable demonstrated the single largest effect in bringing about
acknowledgment. In addition, social work was also identified as a significant
contributor to the acknowledgment process. When the intent score and the
transprofessional model of care were added to the logistic regression model, this
interaction effect demonstrated a greater than 50 times greater odds ratio that
acknowledgment would occur. In other words, the blended intent of care combined
with a multi-disciplinary team of caregivers increase the chances of acknowledg
ment taking place with respect to the same effect produced by a conventional
model of care.
The findings of difference in number of acknowledgments between the two
models of care were comparable to the research of Carey and Posevac (1978-
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1979), McNeilly (1994), and Solomon (1994), who reported the reluctance of
physicians in initiating the acknowledgment process. These researchers attributed
initiation of the acknowledgment process to professional caregivers other than the
physician.
The medical chart review that was conducted to establish the intent score
revealed that the acknowledgment process was initiated by the transprofessional
nurse. The nurse most often requested the services of social work in providing
guidance and counseling to the patient with regard to the possible care alternatives
that existed. In every case where the acknowledgment took place, the physician
was requested to provide a consultation; but this consultation occurred after the
initial acknowledgment of the terminal prognosis.
The Hospice Admission
The findings in this research with regard to hospice admission should be
interpreted with caution. The admission to hospice in historical research efforts
has been the key dependent variable, serving as the line of demarcation between
high and low costs and poor and improved quality of life in terminal care. Much
has been made of the importance of effecting the hospice referral and creating a
more timely hospice referral. This research focus was taken since no research
design had previously been conceived of to move the palliative care services
offered in hospice into the mainstream of service delivery. Those who operate the
terminal care delivery systems and those who research the delivery of care for
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terminal patients have consistently perpetuated the dichotomy between hospice
and conventional care. The reconceptualization performed in this research was
the separation of hospice the place from hospice the treatment perspective. In so
doing, the results with regard to the hospice admission must be seen differently.
In other words, if both curative and palliative care are provided in the medi
cal/surgical setting, as was the case in this study, the need for admission to
hospice is significantly diminished. This dynamic for the transprofessional model
of care must be understood in evaluating the findings with regard to the hospice
admission.
A second caveat with regard to hospice admissions in this study was the
time frame of the study. As articulated at the beginning of this chapter, the study
design was focused on comparisons of models of care during the entire treatment
period leading up to and inclusive of the hospice admission. What is seen with
hospice admissions in this study, therefore, were the beginnings of the hospice
admission process for the sample of 168 study participants. The findings should
be viewed as indications and trends of the effects of the models of care being
evaluated on the entire treatment process, inclusive of hospice admission.
The differential between the models of care with respect to hospice admis
sions were analyzed against the average admissions to hospice from the National
Hospice study and for Medicare claims data through 1994. As pointed out by
Emanuel and Emanuel (1991) and Scitovsky (1994), for the approximately 10%
of the eligible Medicare population who die each year, only 10% elect to utilize
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hospice. Of the 28 admits to hospice in this study sample, approximately 13%
were admitted to hospice through March 31,1996. Thirteen percent of CC patients
were admitted to hospice. In comparison, the transprofessional model of care
patients admitted to hospice represented 21% of the transprofessional study
participants. While the number of conventional model study patients was not
significantly different than national averages, the percentage of admissions of
transprofessional model study patients was significantly greater than the national
average at a p value of .03.
As predicted, the transprofessional model produced more admissions to
hospice than the CC model. While not statistically significant, the transprofessional
model of care produced admissions to hospice that occurred earlier in the care
process than the conventional model; and the average length of stay in hospice
through March 31,1996 was longer for the transprofessional model patients. Both
days on service leading up to the hospice admission and the total days on service
were in the direction predicted by the hospice admission hypothesis. The
indication, then, is that the transprofessional model of care does indeed effect a
somewhat earlier admission to hospice and therefore produces a somewhat longer
length of stay on hospice.
A subanalysis of those study patients who were on hospice and died during
the study period amplifies the differential in hospice admissions between the two
models of care. The average length of stay for transprofessional patients who died
was 3 times as long as that for the conventional model patients who died. As
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reported in findings by both Brooks and Smyth-Staruch (1984) and McNeilly (1994)
and confirmed by the average length of stay reported in this study for patients who
died, patients enter hospice very late in the dying process—some with less than
20 days before death. The conventional model of care patients who died averaged
less than a week of hospice service before death. These findings were not
encouraging with regard to the utilization of hospice services but did confirm the
underutilization of hospice services identified in the research literature.
In the final analysis, the concept of hospice as a viable treatment modality
is questioned. As reported by Kane et al. (1984), the concept of hospice may well
be left to personal choice. The extension of this thinking is perhaps to move the
palliative model of care developed by hospice into the mainstream of service
provision instead of waiting for its effects to be realized at the very end of life.
Acknowledgment of the terminal prognosis and the hospice admission are
significantly intertwined in the process of utilization of hospice. The correlation
between acknowledgment of the terminal prognosis and the hospice admission
in this research was .70 (g = .000). While there must be an acknowledgment
before a hospice admission is perfected, not all acknowledgments result in a
hospice admission. The acknowledgments that resulted in hospice admissions
represented 63% of the total study acknowledgments. Gochman and Bonham
(1990) found the conversion percentage to be 83%.
The importance of acknowledgment of the terminal prognosis cannot be and
should not be underestimated. Beyond acknowledgment, days on service was
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found to be the only other significant variable affecting the admission to hospice.
Included in the models evaluating the hospice admission were patient’s insurance
coverage, change in physical conditions and symptoms, presence or absence of
nonprofessional caregivers, change in disease stage, and socio-demographic
variables. With regard to disease trajectory and condition changes, it should be
noted that differences between time of admission to HC service and the hospice
admission were minimal in well over 85% of the study patients. The majority of
study patients were admitted to HC services late in the disease process when they
were suffering from either wasting syndrome or CMV. None of the independent
variables identified, other than days on sen/ice, impacted the hospice admission
when acknowledgment was not present.
The implications of these findings with regard to determinants of the hospice
admission highlight the fact that time along the disease trajectory, in the absence
of active communications facilitation, is the key determinant of hospice utilization.
In other words, as the disease moves closer and closer to the recognizable signs
of death, the patient's potential of being admitted to hospice increases. While this
finding is both obvious and disconcerting, it highlights the importance of active
facilitation of the acknowledgment process. As identified by Prigerson (1991) and
reported earlier as a key finding in this study, the acknowledgment process is the
single most important patient level variable in determining hospice utilization.
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Costs of Terminal Home Care
The evaluation of the two models with regard to cost clearly demonstrated
that the transprofessional model of care produces lower costs throughout the entire
episode of care. The differential between the two models, when reduced to a ratio,
indicated that for every dollar of cost expended on experimental group patients,
the cost expended for control group patients was 59 cents greater, or $1.00:$1.59.
A ratio of $1.00:$1.26 differential was found in the National Hospice Study between
CC patients and hospice patients, as reported by Scitovsky (1994). It should be
kept in mind that the National Hospital Study findings were based on comparing
patients in two different modalities of care and that cost savings were a product
of the substitution between hospice days and acute hospital days (Mor &
Masterson-Allen, 1987). No such distinction in modalities of care existed in this
study; patient costs were compared in similar venues.
The National Hospice Study indicated a cost differential of approximately
$4,000 per patient for a full year of home hospice care compared to conventional
hospital care. This was again achieved with the substitution of hospice days for
acute hospital days of care. As reported in the National Hospice Study, acute
hospital days averaged in excess of $1,000 per day, versus $149 a day for home
hospice care (Mor & Kidder, 1985; Mor & Masterson-Allen, 1987). Given the lack
of substitution effect in this present study and the comparison of HC service under
the two models of care, the average savings of approximately $2,611 is significant.
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Medication Costs
Just as important in evaluating the cost differentials produced in this study
between the two models of care was the finding with regard to medications.
Neither the National Hospice Study nor subsequent comparisons of costs between
hospice and conventional care have isolated medications. However, this variable
is absolutely critical in understanding the treatment of HIV/AIDS, simply because
medical pharmacology is the major front of treatment against the diseases that
comprise HIV/AIDS. Without credencing medication costs, research on end-stage
costs may produce statistical significance; but the findings have minimal value
clinically. While the medication differential costs between the two models of care
were statistically nonsignificant, the transprofessional model of care did show an
average saving of $1339.43 over the convention model of home care.
The savings suggest that the movement in the transprofessional model was
in managing patient care, especially continuous evaluation of the medication and
patient interaction process. A review of the medical record notes in Table 11
shows a distinction between the approach to medication management of the two
models. While the conventional model notes focused on patient compliance in
medication administration and training the patient to self-administer medications,
the notes reflective of the transprofessional model had a different focus, i.e., on
the patient’s anxiety with medications. In several instances the nurse reported
initiating a dialogue with the patient’s physician about the appropriateness of
continuing medication therapy. This type of practice, demonstrated in the
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transprofessional model, apparently provided a change in medication administra
tion that also resulted in reduced costs. While no clear statistical inference can
be made regarding the medication differences between the two models of care,
the size of the actual difference and the direction of that difference suggests that
the transprofessional model has the potential to be effective in this major area of
costs of care. Any impact on medication costs with a medication-intensive disease
such as HIV/AIDS should be viewed in light of its considerable potential.
Labor Costs
The labor costs were significantly different between the two models of care
in concert with the profile of the caregivers that provided services under the two
models. The transprofessional model is a multi-disciplinary approach that is a
mixture of nursing and social work services. The inclusion of social work in the visit
pattern of care substantially reduced the number of nursing visits required between
the transprofessional model and the conventional model of home care. The
substitution of HHAs in the conventional model of care for nursing does not have
the same effect. The home attendant can be seen as simply a nursing extender
in the conventional model, while social work adds a dimension to service that
changes the mix of caregivers needed to deliver services. In a sense, the addition
of a focus on psychosocial issues in the care process versus a mono-focus on
medical services seems to serve as a reducer of intensive nursing care.
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The regression analysis that was performed to evaluate the factors that
impact cost further validated the key role of nursing in the HC process and the
effect of a singular focus to care versus a blended focus to care. The trans
professional model produced significant reductions in nursing costs over the
conventional model. Even with higher social work costs, the transprofessional
model produced significantly lower labor costs than the conventional model
overall. Changing the service delivery mix slightly, as was the case in this study,
demonstrated significant reductions in costs.
The National Hospice Study did not provide a breakdown of labor costs.
Labor is the major service cost component in HC services. Understanding the mix
of models of care and the resulting costs is critical in evaluating the impact of
different models of service delivery on care.
Hospice Versus Nonhospice Costs
This study demonstrated that utilization of a palliative focus of service
delivery could effect a significant cost reduction in the overall service episode.
Prior comparisons have always been done between hospice and nonhospice,
where the effect of a blending of curative and palliative services—the blended
approach of hospice care—was masked. The potential effect of doing this was
alluded to by Bumbaum and Kidder (1984). These researchers suggested that
a study of pre-hospice patient care should be conducted to see if an impending
admission to hospice altered professional caregiving practice and shaped the
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reduction of costs. This study went much further in evaluating that notion by
moving hospice palliative practice into the conventional arena.
Comparisons of costs for those patients that were admitted to hospice and
those who were not showed an opposite effect to historic comparisons between
hospice and nonhospice care. The hospice patients reported higher costs
throughout their episode of care than did nonhospice patients. Two factors
contributed to this finding: (a) days on service in hospice and (b) the presence of
the transprofessional model of care throughout the care episode. The National
Hospice Study reported that 20% of the study sample had lengths of stay on
service for hospice of a week or less (Mor & Masterson-Allen, 1987). For these
patients, cost savings were not realized. As reported by McNeilly (1994), much
of the time during the last 2 weeks of life, when the admission to hospice generally
occurs, is spent stabilizing the patient from the effects of conventional care. This
period may actually cost more than CC services. Given that through March 31,
1996, the cut-off date for patient data in this study, the average length of stay on
hospice was approximately 20 days. In comparing the transprofessional group
patients with CC patients, the CC patients reported an average length of stay in
hospice of under 2 weeks. The average costs for hospice patients throughout the
episode of care was greater than the average of the transprofessional model and
approached the average cost for the conventional model. It is suspected that this
cost profile was partially due to the short length of stay on hospice.
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The second factor that may in fact be more important to consider in the
differential between hospice and nonhospice costs in this study was the presence
of the transprofessional model of care throughout the service episode. Taking the
palliative focus of care and inserting it into the mainstream of care may actually
have produced the type of cost reductions seen in earlier hospice and nonhospice
studies. These cost savings were sustained throughout the episode of care as
palliative measures to reduce pain, manage symptoms, manage medications, and
facilitate patient management shaped the entire treatment process.
Historic hospice and nonhospice studies have reported the effect of cost
savings occurring in the last 60 days of life, and the cost reduction effect was not
sustained as length of stay on hospice grew beyond 60 days (Mor & Masterson-
Allen, 1987). The transprofessional model sustained cost savings which in the final
analysis may have substantially reduced any cost-saving effect that would have
been seen from the hospice admission. Historically, the first weeks of hospice are
spent in controlling patient medications and pain. This was already done prior to
hospice admission in the transprofessional model. Therefore, cost savings as a
product of care management were achieved prior to hospice admission.
Study Implications
This study presents significant policy implications for the future of end-stage
care services for HIV/AIDS patients specifically and perhaps terminal chronic care
in general. Introducing a blended model of care into the mainstream of terminal
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care may have significant effects in reducing costs. By slightly altering the care
team to be inclusive of bio-psychosocial issues, the profile of service delivery and
the costs of service delivery are substantially changed. Additionally, the
conventional considerations in terminal care analysis, i.e., acknowledgment of the
terminal prognosis and the hospice admission, may well be significantly altered.
Given the ability to reduce costs significantly throughout the entire episode
of home care by using a palliative philosophy, is the hospice admission as clear
a desired outcome to control costs as it has been? While the hospice admission
has served as a means to effect cost reductions, regulations have made it difficult
to perfect the hospice admission. As a consequence, hospice utilization is limited
and end-stage care costs continue to escalate. The very need to acknowledge
the terminal prognosis serves as a barrier to hospice admission. While the trans-
professional model of care produced significantly more acknowledgments than did
the conventional model of care, the conversion of acknowledging patients to
hospice was not equal to the number of acknowledgments. This factor implies that
we may need to reconceive the concept of hospice. In fact, we may need to
consider, as has been demonstrated by this study, that what is required is to bring
palliative care into the mainstream of terminal care. A blended model of terminal
care throughout patient care is required, in contrast to two separate modalities of
treatment for terminal illness.
Much as the hospice concept may need to be reconceived, the entire ac
knowledgment process may have to be reconceptualized as well. Given the
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findings of this study with regard to acknowledgment of the terminal prognosis, it
is possible that facilitating the acknowledgment led to different care decisions in
terms of medication utilization and treatment choices. This finding should be
explored in subsequent research on the effect of acknowledgment on treatment
decisions. Acknowledgment, which is a major outcome of the transprofessional
model, must be brought into the mainstream of terminal care instead of being
trapped at the very end stage of care.
What the study also demonstrated is the potential to reform end-stage care
costs without investing substantial dollars in retraining professional health care
provider. It should be carefully noted that the differences in acknowledgment of
the terminal prognosis, the admissions to hospice, and the costs between the two
models of care were accomplished without engaging the physician. The physicians
were called in to consult on the hospice admission after the acknowledgment had
occurred.
A major emphasis in current attempts to reform terminal care is the critical
importance placed on the physician. Exploratory research effort after effort have
concluded, without empirical validation, that the physician is the key barrier in more
timely utilization of hospice and in reducing care costs. This study demonstrates
the potential of altering patient care decisions without requiring substantial behavior
change on the part of physicians.
The results of this study provide a plethora of policy considerations that
deserve attention with respect to impacting the current state of end-stage care. It
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is clear that the HC process can be substantially affected with the addition of a
multi-disciplinary model of care—a concept that has existed in hospice care since
its inception.
Gaps in the Research
While the study results are substantial for the HC arena, the question
remains regarding the impact of the transprofessional in an acute care hospital
environment. Within this question, many gaps in the current research are high
lighted that should be considered for future research efforts.
While cost savings were seen in the services directly controllable by the HC
agency, hospital costs, ancillary services costs, community-based services utilized
by patients outside of the HC setting, and outpatient visits were not captured.
These costs are substantial and should be evaluated along with the HC costs
evaluated in this study.
Sample size is also a consideration in future research. Terminal care
services and, consequently, costs vary considerably between individual patients.
While cost effects were clearly demonstrated, other effects, e.g., hospice admission
and acknowledgment, require larger sample sizes to demonstrate significant
impacts.
Randomization of patients remains a strong aspect of this research design.
This study is among the few that has utilized random assignment in terminal care.
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Random assignment is critical in demonstrating the realistic impact of service de
livery models in terminal care settings.
The transprofessional model, having demonstrated significant results, now
needs to be further manualized. Much of the model was built around the hospice
philosophy of care by utilizing hospice-trained nurses and social workers in its
delivery. Those qualities that differentiate palliative care from the conventional
curative care focus need to be further delineated and manualized in future re
search. While the transprofessional model practitioners received medical training
and specific psychosocial training with regard to HIV/AIDS, much of the service
delivery practices that they brought to the model were intrinsic as to who they were
and where they had been regarding terminal care. If a blended approach to
terminal care is to be instituted, the model will have to be carefully manualized.
Many of the problems with quality of life measurement have already been
presented. As articulated by Mor and Kidder (1984) and Mor and Masterson-Allen
(1987), measuring quality of life in hospice and for terminal patients at end stage
needs to be reconceptualized. The current quality of life instruments are simply
not designed for the end stage of terminal care and are conceptualized to broadly
measure patient functioning. Avoiding this issue not only presented problems in
the present research but also served to suggest enhancements that could be made
in future research on terminal care. The focus of quality of life in end-stage care
should be on the emotional and cognitive adjustment of the patient to the treatment
process and the implications of nearing death. The theoretical models provided
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by both Kubler-Ross (1969) and Weisman (1972), which dea! with the stages of
terminal acceptance and denial, should be utilized to focus a quality of life
instrument on patient adjustment. Domains of physical functioning, social func
tioning, pain, and overall health status, while valuable to researchers, provide little
relevance to patients. The difficulties patients have with adjustment to their
terminal prognosis mask accurate and useful responses to these domains of
concern. Future research, therefore, should engage in further development of a
quality of life instrument specifically developed for the very end stages of terminal
care.
Future Research Plans
The potential to replicate this study in an acute medical setting with
terminally ill patients is compelling. Given the chronic nature of illness in the United
States today, the application of the transprofessional model of care to chronic ill
nesses in general among the aged and more specifically in the acute care hospital
setting should be strongly considered. The transprofessional model of care should
be tested with a large, multi-site health maintenance organization that provides
both inpatient and outpatient sen/ices. Given the shifting of medical care in this
country to the health maintenance arena, the potential of the transprofessional
model to impact delivery costs and patient quality of life is significant.
Given that potential, it is the intention of this researcher to further develop
and test the transprofessiona! model across a range of settings. The
272
transprofessional model of care represents an approach to the treatment of chronic
illness that can provide important data in achieving greater effectiveness and
efficiency in the delivery of health care.
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294
APPENDIX
295
APPENDIX 1
MODULE 13: JOHNS HOPKINS HIV/AIDS
DISEASE CLUSTERS
296
C ii:
D ia n e s
t
D Naatars
Visiting N u n c A ssociation o f Los A ngelas
Module 73: Kamofsfcy and D isease S tage Scale
n * a * h e msissim sm .
She Sobftrond*
I NI 1 1 1 1 1 1 H ! 1
| v | n [a |
Mi l HJLJ'IJJ'lJj
Moan car Yaa
CBeatGeader 1. la geaeral, how woaidyoa rate the patient's everaOheahh;wosldyoa say that it is:
oUMe
LUJ :> Ferrate
o E n lB tt oGood O Fair OPoor o vary Bad oTenfefc : >Oort Know
2. HIV-OISEASE PR06RES90N CURVE 3. THE KARNOFSKY

Instructions: Oarfcea Sm babhlaa corras pea ding to aay sigas that the patioat is earreetly RATMC SCALE
maoNcstiag. lastrat boas : Oarhea the
babble corresponding to
: :Tn the pabeafs estreat
disease stage.
« Description
• Nonnatnoc
t ) O nfksyM m pbtia no evidence ot dsease.
OTbnah
1000
c) Abb b canyon nenof
acMy: minor sgns or
2a. ENTER
C04CEU (J Nona* aM yaN i « *st
new signs or symptoms
COUNT too otdbaase.
OCU HN)
ro
cC M S fvefcm bfcta
. 700 eanyonaonndacSvityer
to do scbre wort
m
GOO
m uunccontis jMeto
camtor nost of oaa needs.
500
rand Sequent
400
300
200
100 a
OVnyridc
I pcogm nag rdndtj.
2b. Eater («sttaalt> anorind) tie aoe bes ot yeara since into ln p o s a w d in fc c tio a
■M naaM nriM naiiaaM aab. : Deal
T im fora i aTktUe t Gmo mt a* yjoei NwseAstodam «tLasAspen. 1MS.Vane* of 104*.
297
APPENDIX 2
APPROVAL OF STUDY
298
TH E VISITING NURSE ASSOCIATION O F LOS ANGELES, IN C
DCTTTUnONAL REVIEW BOARD

NOVEMBER 14,1994
MINUTES
PRESENT: David Cherin, Dcnncc Frey, Sharon Grigsby, Yvette Luque, Kris Hillary, Audrey
M itchell, June Simmons, Elizabeth Wilson
M e d ic a tio n M a n a g e m e n t G a n t
Provided through the John R. Hartford Foundation, the group was alerted to this new grant o f
5225,000 awarded for three years (January 1. 1995 - December 1997). This grant, field-tested
through V isiting Norse Services ofNew York and Visiting Nurse Association o f Los Angeles, in
conjunction w ith research dooe by Vanderbilt University, is an exciting new effort. The Hartford
Foundation has previously funded the design and testing o f Medication Management software for
TV* ip nwrfipg freilirigt, in identify frail elderly at high tide o f medication's r nmplieations.
This funding initiative has been very successful and as a result they are moving to a Home Health
application for this work. We will thus be one o f the two sites in the country to test software for
M edication Management for the fiaH elderly. This software primarily focusses on identifying
m M , n f w iw lir M w m * a n d t w w i i r a f i n « K t h a t m i g h t m tm a w i t h » a r h o t h e r
in a negative way. When individuals are screened into the high risk category by the software, they
are Sagged for review by onr consulting pharmacists, Dennee Frey. She will then work with the
prescribing physicians to assure that medications are optimum.
The committee determined that no special consent is needed for patients to partidpaie in this project.
Currently all pariems1medications are identified and logged on admission This existing portion o f
the « g « m nit will simply receive a more sophisticated, analytic support system which will be
applied equally to all patients. Since there's nothing experimental in the treatment itself and the
intervention is likely to enhance physician case management, no additional consent device will be
required.
The group was pleased to note that this work should lend further support in our agency's ongoing
advocacy w ith M edicare regarding the importance o f the clinical pharmacist's role. In the past
Medicare has attempted to deny the cost o f the clinical pharmacist as an allow able Medicare
expense. This research had helped to demonstrate the critical comributioos this discipline makes
in the Home Health setting.
SPNS n-Hosnice/AIDS Canharion Grant
This is a federally funded three-year project approximately 5340.000 per year beginning October 1.
1994. The project attempts to integrate Home Health and Hospice resources into an enhanced
delivery system. Concurrently, sophisticated data collection design will allow coOccrion o f cog d aa
to develop a base for actuaries to work with us to create a model for capitaring in stage home-based
Aids care. The project encourages use o f the capitated hospice benefit, but for grant purposes the
project wiQ describe this as a special services program, rather than Hospice, although all informed
consent requirements wfll be observed. The Committee raised the point that the title o f staff will be
important and the nurses should nor be titled Hospice nurses in this role. The committee indicated
the importance o f assuring an adequate role for social work in the project, which is planned under
the grant.
R eproduced with permission o f the copyright owner. Further reproduction prohibited without permission.
299
TH E V IS IIIN G NURSE ASSOCIATION O F LOS ANGELES, INC.
INSTITUTIONAL REVIEW BOARD

JUNE 26,1955
MINUTES
PRESENT: June Simmons. Yvette Luque, Efoabeth Wilson, Audrey Mhcfaefl, D ive C hain.
DetmeeFrey
EXCUSED: Barbara Solomon
Alzheimer's Study
The new Afahermcrs Hospice study fended by Open Society Institute Project On Death In America
was reviewed end discussed. Committee was enthusiastic about this model program effort.
SENSflCggffftfgqp
Prior draft o f SPNS II Consent Forms sent back requesting snnpfification. New draft (attached)
presa ted to d y received unanimous approval. Committee asks staff to audit at 6 month intervals and
also monitor refusals
SPNS IT Study Protocol
Dave Cherin presented the study design and methodology. Committee reviewed and discussed, and
made no changes.
Audit Cf-AlPS PSYtiMfffc Cffgffltt

DetmeeFrey brought results o f follow-up study and fcund good compliance w ith study requirements.
Funding
June Simmons reported on agency efforts to pursue other funding. Currently, a Hospice timely
adrmssion/contiiKity project for cardiac, oncology and respiratory patien ts is being submitted to
Retirement Research Foundation.
Meeting adjourned.
APPENDIX 3
CONSENT FORMS
301
mm □ VNA □ VNAHS
W TXWTMBiMBCAKOaA'nONOFlOGANmj3.NC. a VNHP a VNA HOSPICE
PATIENT AGREB4ENT AS TO TREATMENT AND RELEASE OF INFORMATION
This Agreement i t entered in to b y and bw m n the V isiting N u n Association o f Las A n g d o . h e .
dm avia hat a h d Agency) a n d ________________________________________________ ttw i sha tt er a d a d P sb w itl.
This Agreement is entered into p u n u a n tto a dasira b y P atiant to obtain examinations and treatments trom die
Aganey and to prowida fo r tha giving o f in fo rmatio n reqatd rig benefits to ba made on P edant's bahaH. talaaaing
inform ation from patiant raeords.
m conai daration af ttw m utual prom iasa and abdgat iona and o f ttw treatmen t to ba randerad P atiant by Agency,
it is agreed as fodows:
1. Treatm ent Authorization. Tha undersigned Patient and/or Patient's responsible rela tives, o r agents,
hereby consents to any and a l exam instione and treatm ents prescribed by Patient's physician and rendered by
tha Nurses. Physical Therapists. Home H ealth Aides. O ccupational Therapist. Speech Path o logist. N utritionist.
Enterostom al Therapists, and Social Wdrfcars o f Agency.
2. Social Security A ct. TMe XVM . P atient unde rstands th a t ap p fcation fo r paym ent under Tide XVM o f tha
Social Security A ct may be made, and th a t in fo rmatio n need be given b y Patiant in order to recatva such payment.
Patient hereby certifies that informatio n given b y Patian t in applying fo r payment under T itle XVm o f th e Social Security
Act is correct. Patiant hereby requests th a t paymen t o f authorized Medicare benefits be made fo r and on Patient's
behalf.
3. Patient hereby authorizes the A gency to furnish inform ation from Patiant records to any in su a r o f Paoent
and ad other agendas or individuals prouidmg m edfcal o r social service to the patiant.
Consent is also given fo r the release o f inform ation to th e Agency by any insurer o f tha Patiant and a l other
agencies or indhriduais from whom tha undersigned has received m edical o r social services. Permission is granted for
medical fa cilitie s to dwdosa a l o r any part o f th a P atient's madwal record to tha Aganey.
Consent is also given fo r the ralasaa o f inf ormat ion to The V isiting Nurse Assoc iatio n o f Los Angeles by the
Social Security Adm inistration.
4. Non O iicrinw w tion. Agency and patiant hereby agree th a t services are rendered w ith o u t regard to race,
color or national origin.
5. C ertificatio n . .The undersigned hereby ce rtifie s th a t he o r she has read tha foregoing, received a co p r
thereof and is the Patiant or is the duly authorized P atient's agent o r representative duly authorized by Patiant to
eaecute the above and accept its term s.
6. Receipt o f a copy o f th is docum ent is hereby acknowledged th is ______________ day o f ____________ .

19_______ . at the hour o f M.
Received: Padeet Initials

Patient Rights and ReaponaAStws
’ Making Advance Directive* _ _ _ _ _ _
•Your Right to Make Decisions’ _ _ _ _ _
Patient has an advance dvecdve 11 yes copy obtained 11 yes
(Print Name)
Patient's Agent/Representative:.
Witnessed by: _
VISITING NURSE ASSOCIATION OF LOS ANGELES. INC.
WHITE. Medical Record • YELLOW • Patent
§i
, I Al ill | I I
in ! i i
ff ! i!ii| iSff III i I a
i -4 Hill
I
5
I Itsf!*ii i 8 *
1 1 llifi Is
in yf St
iI iMilt ini
i j n iSH Mi
i d iS l L .
*8 *
CO
o
I\3
APPENDIX 4
AGENDA AND ABSTRACT O F TRAINING
304
TRA IN IN G AGENDA
DAY 1
K0QAM-93QAM Training Purpose and Overview
Expectations
Ground Rules
9:30AM-I(HX)AM M e fia l Overview
Aacwdnls and Their Side Effects
T-cell C ouns
Ahemicve Tm b b m r
Te n Role o f die N ose
iaOQAM-IO:45AM Psychosocial Issues Common to AIDS M ed/Sotf Patients
10t4SAM-114QAM Break
11:00AM*1240PM Coocepnal Model for Identifying Issues ta d Interventions

C obooI
Dead
Management vs. Meaning
T e n Role o f the Social W orker
12.-0GPM-1:00PM L unch
140PM-i30PM Symptoms sad Management a t
Herpes Simplex Virus ____

Pneumocystis C arina Pneumonia (PCP)
Psychosocial Issues and Intervene cos
Symptoms aad Management of:

Kaposi's Sarcoma (KS) and Lymphomas
Wasting Syndrome
Tuberculosis
Psychosocial Issues aad Interventions
2J0PM-2:45PM Break
2i45PM-4:15PM Symptoms and Management of:

HIV Dementia
Cryptococcal M eningitis
Toxoplasmosis
Psychosocial Issues and Interventions
Symptoms and Management of:

MAI
Cryptosporidium
CMV—retinitis and colon
Psychosocial Issues and Interventions
4:15PM -4J0PM Pluses and Wishes
t r a in in g a g e n d a
DAY 2
9:00 AM - 9:05 AM Review W ishes from Day 1

Overview o f Day 2
9:05 AM - 10:00 AM Overview o f SPNS 2 Assessment Instrum ents aad

Protocol
10:00 A M - 10JO AM Emotional Indicators for Hospice Readiness
10JO AM - 10:45 AM B reak
10:45 A M - 11:15 AM Bio M arkers for Hospice

Physician Interventions
11:15 A M -12:15 PM Managing th e Transition to Hospice

Suicide in M ed/Surg CEeats
12:15 P M - 1J0P M Lunch
1J 0 P M -2 J 0 P M Process Im provement
2 JO PM - 2:45 PM B reak
2:45 P M -4 :0 0 PM Case Studies
4:00 P M - 4 JO PM Evaluation and Closure
R eproduced with permission o f the copyright owner. Further reproduction prohibited without permission.
306
VNA SPINS 2_TRAINING

DAY 1
OUTLINE
9d0930 Zaaaa of the Training

To prepare h o n ieeR N aad social wade reaau a wodcw idiM ed/Sarg
hone beahh A D S patients in tfae SPINS 2 sa d y front die m cnient tbeae
thapfpum'Awi t y o f hOBC bOSpKC
services.
Traimn. O M .ftiw t
1. Be knowledgeable aboatUopsyclnsocaal issues fo r taed/sorghoae

heahh^AJPS p aaeatt aad their cauegivu s aad how these issaes differ
2. BeconcfiBBifiar w ith the SPINS 2 a s se m rn r tools
15 arias P affi'etM nt Tutrndncdow e and fcm cctttfan *
Pu tiripaaa wifl inaodace tbeaaetvts aad gjvethcitfap w ario n s for this

san iag . Trainers w ill re c a d and post expectations. Once they ate all
reended. a a a e a « ffl Jet p a m p a s ta n * what expectations wfll be
corned aad which w ill not. Other related issoes can be covered in fonsre
5 mms Nnrmc
Ib n erw in ask panicipaats b generate a list of book or jnuSas principles

fopartieipaatbehtriQr daring the training. Ttaiacrwin record them, ask
pamdpaas re agree b follow the aarms throagboat the training. and tell
them thatdrey can add to the fist Ia n if they warn
930-10:00 Medical Owr.aw~MfeT.ala

Wffl cover anri-virali and their side effects. T-ceBa. and alternative
8QBM8&
307
Ift00-I0:45 Rnrchwaa'aL. Q rtm tr

P re h o m e ia i te n e t C o m m o n to A ID S M e d /S n rw P atients
•Confront disability, rearctneat aad death in a mare personal way
"Re-evaluate tfae level and type o f support needed aad mobilize (base
resources
*Adjust to changes is parent relationships such as role changes and
g -esafafahint a new rqajSbnom
"Ihfonn people d o se to you about your chancing seeds
"Cope w ith rr creation and vulnerability during boots of illness
"M enace anxiety sto a t te s tS e n and s a te permanent losses

"Deal widx present and anxicipaxno r gxief in self and oxhexs
•Dexenaiac w hat’s worth the effort aad what’s not

•W eigh m edical neaxaesi needs w ith quality of fife issues, includes
eoneetas about CD4 coons aad w hat xbey mean subjectively
as wefl as anerpxetxac th an as a mer&cai in& aror o f well being
"L ean to set flexftle coals w accoosaodate chances in energy. abiEties
ttd b n itb s 8 & s
•L c p i p tfi if o y
Comaa wjih Hoaice tana
T a k e care o f unfinished business

"Cope with the decision to use only palliative seam en s
"Make decision* about the quality o f dying
"Ssycood-bye
10:45-11.-00 BREAK
11.-00-1Z-00 F a n rw u a il M odel fo r Iden tifyin g la n e s and Interventions
Cydeofc Loss
G nef
C onsol Issoes
Im em tion
Empow enxxent
308
1. Loss, grief and eemiol are integral components o f all AIDS

psychosocial ism es. Losses and control issaesm ay b eiea i
perceived aad/or aaticipataty. _
M ajor Loge* o f People with AIDS (Brainstnna and write)
2. People cope w ith lo g tfigercndy rtrniil avoidance. acting oot.

overcoaspiasation. ansicry. feat, t o i m n G rief is a natural
response to loss and is expressed differently.
3- With medfcorg patients, may see mom avoidant s . deniaL fear and
anxiety, ovyrrow pntsarim and acting o ctsince this is die period
and conaeie losses.

I to p e t client* base already experienced many lo ie t and ihm have
mace experience in coping with them. F or tned/ssrg pattens, this
is a newer experience and they don't have the sa n e perspective or
confidence in their ability to cope
grieving and giving in or giving op hope.

Medfsmgparicnts may be better able to find ways to compensate for
som eof their losses rince they are hralthirr.
C o n tr o l
It's very anparta a far cheats to feel they have som e control over their
qoafityoffafe and some o f fife's otaccn es-th e need to believe they can
to ll exert som e W hence over things xmpanant to their well-being
This is ctpeda& j important far this age group to help ward off depression
zpA
D e n ia l
finCTon a l-em rtii defease and coping mechanism that enables people to
have a life that is not consumed by HIV
C xsfiaofinal-w hen denial interferes w ith necessary cate and istprio

clien t functioning and well-being
Manarentent w. Meaninr
•Som rritnes the caregivcis need a manage the patient crsftnarion canses
them to overtook the rigTijfitancr. of the event to the pariest-ic- conilia
over eating and food o r driving.
T o intervene effectively, a ttstto d e n a n d the issae's a e a n a f to tfce

parien t and caregivers , especially the loss and control tn/lorna a
T g m -R o lt a f the S o cia l, w a i* c r
•Implore bow symptoms, diagnostic procedores. m edkaaaas and oeatmem
procedures affect daily living »ad g a g of self
•Assist in frrmalaaot qacsuons for physician
•O fier emotional support aad so{gest ways of esablisfaiBg a sense of

conaol wheneve r possible
ipJa w ifw ayj p y " ma pj j
•E doeas cfiems and aipri& eant othea about neuropsychological
•Provide counseling and c a m intervention to cfiems aad caregsves to
•Assist with resooree finding aad advocacy
12.-00-1:00 LU N C H
1:00-230 Medial Conditions end Symptom Manayerrwmt

Canrftfiias
Herpes Simplex Virus ____
PaeuniosysrisCarinaPneumonia (PCP)
M e d ia l C o n d itio n * a n d S v m n to m M ana— m ent
K spoti's Sarcoma aad Lymphomas

Wasting Syndrome
Taberealons
P m tflM rial .touts .and. Interrtnpam

Panicipanu wfll be divided into sm all groups. Each group wifi be assigned
o aeo r two c fih e above condriont. Each poop needs » eome op w«h
-H ow symptoms and treatm ent m ight affect daily life and sense of
self
-Possible losses aad control and relationship issues
-Suggested amervcnaon s that w ill empower the client
230-2:45 BREAK
2 :4 5 -4 :1 5 M e d ia l C o n d itio n s a n d S y m p to m M anagem ent
DOBCBBft
Ciypmeeoeal Meningitis
TA»q| ij«yiwni«
M e d ia l C o n d itio n s e n d S y m rn o m M anagem ent
M AI
Cryptosporidium
CM V-rranids and colon
P s y c h o s o c ia l f a m and in te r v e n tio n s
Same as above
4:15-4:30 P lnses an d W ishes
O boin feedback from parodpanc
310
DAY 2
9:00-935 Review wfehvs from y esterd ay

9 3 5 -1 0 3 0 O v e rv ie w o f S P IN S 2 A w tw iw m t In s tru m e n t? a n d P ro to c o l*
MAF
Q nfityofL i& (FA H I)
Services Checklist
John Hopkins HIV Disease Cannwjom

1030-1030 E m otional R a d in u t fo r ffo sm cc-S o m c In d ica to rs
Cmwiwwi w tm ifiiw i reaHcacy decreases. paaeats
report eaotional ftogoe. died o f ta n g lin g
S iw m ty r Kmmfctwrf Hnpg fa r Trapmvm t m i in Qm & y n f L ife -
death begins a beeetae a more appealing alternative to
recent sad estre at quality of life.
W ithdraw al-Client's worid becomes n o n Estited. often to dose

faatly m d fcicods sad boatc-rc duccd life space
A aiadcaeatdsC onB ol-cfaoosing a delegate tacte central a

erased caregivers aad viewing das as a positive choice
a a e than a loss
Overburdened Caregivers-clients view fiieads aad & a2 y as

overburdened by their client caragivt r respensibiSpcs
aad w a sta g e s thest some relief aad assisaaee-
caa g jyers able a accept assiuance without viewing
it as jiving op on d ien i
1030-10:45 BR EA K
10:45 - 11:15 B io M a rk e r* f o r H o«nice a n d P h y sician f a n e s an d

Inter?cntioM
h«c ririf jpfurm j nnnl
11: 15- 12:15 M anam 'n* th » T ra n tititm to H o sp ice

D edsioa making as a continuous process end the need a coasnm ly
assess client and caregivers using SPNS 2 instruments
Managing Client Systeats-assessment aad intervention,when

provider issues. fam ily issues and diem ’s wishes ire in
confljet-know who your primary client is (padeat or
family7)
Discuss provider m acs and confS ca-counm gnafggacg.
boundary issues, persons] beliefs d o t difEer from those
o f the cheat and/or families and other sofL long tern
ju st hospice or ju st medfturg. Importance c f obtaining
support from yocr mam members as you go through
the ops aad downs of the illness with yocr clients
Empowering Iwcrvenoons-c ttm iiie consol issues for all involved,

provider counHirsaiufc reace, looking at how all involved
Hpfiwp flfPCf pfftWg*ftTfft tfrtf
mpjwip| ngCOO(RK8t» 10 qc^Tw»»iw| okJ
goals
S uicide in M cd /S n rs C Tcnts
•Hoarding pills as a consol issues m ther than an im am est sokidal

gesture and bow to assess the differeace-tbe need to assess
carefully each rime the issue cooes np
•Q ients who are p a -hospice are m ore physically able to cany oct a
•Talking suicide doesn't necessarily mean that's what tbe diem

wants so much as the best w ay to describe feelings aad
pcicepuco o f cu n t nr siniaaon. bowcver. be stse to assess
the client's pre-mortad personality aad hisury
•C onsidering suicide as an attem pt to get p eap eah e and one option

out o f several that gives som e diem s a sense of control
12:15-1:30 LU N CH
1:30-230 P ro cess Im n rn v c m c n t-O a v c
230-2:45 BREAK
2:45-430 £aSC_SllidlgS
Participants w ill bteak into small groups. Each group will be
a m st o f nurses and so d ai wodcers aad be given a different case
study. Each group w ill:
1. Identify nursing aad psychosocial issuesfptohlems

2. As a nurse/social w ork team, develop a treatment
plan and specify m ase and social work interveneans
4 :1 5 -4 3 0 E v a lu a tio n a n d C to r o r c
permission of the copyright owner. Further reproduction prohibited without permission.

APPENDIX 5
SERVICE, DISEASE, AND DEMOGRAPHIC MEASURES
313
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316
Visiting Nurse Association of Los Angeles • Page 1 of 2

Module 17: Brisf Health and Functioning Questionnaire
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CONTINUE ON THE NEXT PAGE

Tkak w Ssi uoaa la mt i a un t i Tkakaoaaai Gweswdbeotoaca ofbe SPHSCowwsan Aynaaan IMS, vasaa of UMS.
317
Visiting Nuts* Association of Los Angeles - Page 2 of 2

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318
« . '' I | Visiting Nurse Anocabon of Los Angttes

■ 4?223
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T»
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11
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i.
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319
Visiting Nurse Association of Los Angelos

Cui: Module 73: Kamofsky and Disease Stage Scale
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The Transprofessional Model of Terminal Care Reforming End Stage Care in HIV AIDS

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INFORMATION TO USERS

The quality of this reproduction is dependent upon the quality of the

Oversize materials (e.g., maps, drawings, charts) are reproduced by

Photographs included in the original manuscript have been reproduced

University Microfilms International

CARE: REFORMING END-STAGE CARE IN

A Dissertation Presented to the

FACULTY OF THE GRADUATE SCHOOL

UNIVERSITY OF SOUTHERN CALIFORNIA

In Partial Fulfillment of the

Requirements for the Degree

© 1996 David A. Cherin

UMI Microform 9705083

This dissertation, written by

under the direction of hi.?........ Dissertation

Dean of Graduate Studies

I appreciated the encouragement and the acknowledgments of my efforts that you

took the time to give.

Michal Mor-Barak. Thank you, Michal, for providing that.

School of Social Work who provided me with constant encouragement by both

the guidance he provided and the unselfish giving of friendship.

Without June Simmons, Kris Hillary, Cathy Winteringham, and Theresa

would not let you down.

ACKNOW LEDGM ENTS..................................................................................... ii

PR EFA C E ............................................................................................................ xiv

Relevance of the Study to Social W o rk ................................... 25

2. THE HISTORICAL AND SOCIOLOGICAL ROOTS

3. LITERATURE REVIEW AND THEORETICAL FRAME­

Empirical Research on the Costs of Terminal

4. STUDY M ETH O D O LO G Y................................................................ 147

5. RESULTS .......................................................................................... 202

6. DISCUSSION .................................................................................... 249

BIBLIO GRAPHY................................................................................................. 273

1. MODULE 3: JOHNS HOPKINS HIV/AIDS

2. APPROVAL OF STUDY .................................................................. 297

3. CONSENT F O R M S .......................................................................... 300

4. AGENDA AND ABSTRACT OF T R A IN IN G ................................... 303

5. DEMOGRAPHIC M EA SUR ES........................................................ 312

1. Clinical Categories: AIDS Case Definition for Ado­

2. Demographic Comparison of Sample with Los An­

3. Sociodemographic Characteristics of Study Sample ...................... 156

4. Health-Related Demographic Characteristics of Study

5. Admitting Disease Stage at Intake of Study Participants ............... 158

6. Patient Knowledge at Intake of Diagnosis and Prognosis................ 159

7. Service-Related Demographics by Study Groups, 8/1/95-

8. Sociodemographic Characteristics of Study Sub­

9. Analysis Plan ........................................................................................ 199

10. Home Care Visits by Discipline, 8/1/95-3/31/96 ............................... 205

11. Examples of Patient Care Medical Record E n tries........................... 210

12. Logical Regression of Determinants of the Model (N = 1 6 8 )........... 212

13. Logical Regression of Determinants of the Model (N = 1 6 8 )........... 212

14. Differences in Acknowledgment Between Study Groups

15. Comparison of Days to Acknowledgment.......................................... 219

16. Logistic Regression of Factors in Acknowledgment of

17. Hospice Admissions Compared to National Medicare

18. Comparison of Days to Hospice Admission and Days on

19. Total Costs and Costs by Subcategories (H = 168),

20. Medications and Costs Utilized in Treatment of Study

21. Comparison of Costs Between Study Groups, 8/1/95-

22. Comparison of Costs Between Hospice and Nonhos­

23. Results of the Regression of Total Episode Costs (N =

24. Confirmatory Factor Analysis of Quality of Life (N = 3 2 ) .................. 245

1. Critical constructs in the referral to hospice....................................... 37

2. Conceptual model of health-related quality of life in

3. LITERATURE REVIEW AND THEORETICAL FRAME

1. Clinical Categories: AIDS Case Definition for Ado

2. Demographic Comparison of Sample with Los An

8. Sociodemographic Characteristics of Study Sub

22. Comparison of Costs Between Hospice and Nonhos

home care, case managed by a registered nurse (N = 78), or to the transprofes

ress. In the ever-increasing momentum of conquering disease and inventing med

Medicare payments (Scitovsky, 1994). The numbers of HIV+/AIDS patients re

End-stage costs are incurred by a small percentage of the population. Ap