Management of
AIDS
A case of a patient with AIDS
illustrates the unique features
and problems of caring for
such a patient in a rural
family practice. The issues
and implications of care are
discussed, and some
recommendations are made
for preparation of physicians,
hospital staff, and
communities.
Le cas d'un patient souffront
de SIDA illustre bien les
caracteristiques et les
problemes uniques des soins
a un tel patient dans le
contexte de la pratique
rurale. L'auteur discute des
differents aspects et
implications des soins, et
soumet des recommandations
pour mieux preparer les
medeins, le personnel
hospitarier et les
communautes a cette tiche.
Cmakm *hin- 1990;36:2202-2205.
2202 Canadian Family Physician VOL 36: December 1990
in a Rural
Family Practice
PAULINE S. DUKE, MD, CCFP
ARING FOR A PATIENT WITH
aids in a rural community
requires more than specific
knowledge about the dis-
ease and its ramifications.
This report illustrates the special problems'
and the unique features of caring for a pa-
tient with AIDS in a town of 5000 people
with a 40-bed community hospital.
Case Report
A 37-year-old man presented in February
1987 to my office with a 1-month history
of extreme fatigue and a 2-month history
of a productive cough. He was a smoker,
had a normal appetite, and reported no
weight loss. He was afebrile and not acutely
ill, but had right axillary and bilateral in-
guinal lymphadenopathy.
The rest of the physical findings were
normal. Laboratory tests indicated a hemo-
globin measurement of 108 g/L, white
blood cell count of 4.2 x 1 09/L, and a plate-
let count of 53 x 109/L. Results of a mono-
spot test were negative, and erythrocyte
sedimentation rate was 135 mm/h. Results
from liver function tests, urea, creatinine,
and protein electrophoresis were normal.
A human immunodeficiency virus
(HIV) test was ordered after these abnor-
mal results were observed. In the ensuing
Dr Duke is assistawt professor offamily medicine i
the Discpine of Family Practice at Memoriil Universiy,
St Joh4 Jvld.
days the patient developed a confluent ery-
thematous rash over his torso and arms,
which resolved on its own in 3 days. One
week later he developed extreme lassitude,
fever, and cough and was unable to drink
or eat. He was febrile, hypotensive (blood
pressure was 90/40), cyanotic, and had
more extensive lymphadenopathy with ten-
der hepatomegaly. He had right-sided
pneumonia and septicemic shock. Blood
cultures obtained at the time showed a
growth of Streptococcus pneumoniae.
Treatment. The patient was given genta-
micin and ampicillin intravenously and
transported to the tertiary care hospital 500
km away, by air, accompanied by a nurse,
his wife, and me. By now his HIV test result
was available - it was positive. He re-
sponded well to antibiotic treatment, and
AIDS-related complex was diagnosed.
After his return home he continued to
have fatigue and was unable to return to
work. A course of physiotherapy resolved
a frozen shoulder secondary to poor move-
ment at a lymph node biopsy site in the left
axilla. He continued to have mild pancyto-
penia and developed oral candidiasis,
which responded well to oral nystatin.
Three months after his initial visit, he
had an episode of confusion with expressive
dysphasia, which lasted a few hours. This
was preceded by headache for 3 days and
associated with vomiting but no other neu-
rological symptoms. After a home visit, I
PRACTISING IN ISOILATION: Fogo Island landscape shows tpiealgy sparse population.
consulted the infectious disease specialist and
arranged transfer to the tertiary care center.
A diagnosis of cryptococcal meningitis, and
thus AIDS, was made by lumbar puncture.
He was treated with amphotericin B and
5-fluorocytosine. A Hickman catheter was
placed during this admission, and the patient
required packed red cell transfusions. He
was discharged after 1 month to continue
weekly amphotericin B infusions.
Avoiding hospitalization. The patient
declined admission to the local hospital for
his infusions because he feared loss of confi-
dentiality. His diagnosis was known only to
me and his wife, so we decided to administer
the amphotericin infusions at his home. I
mixed all the drugs, started the intravenous
solutions, brought the equipment to his
home, then stayed for the 7- or 8-hour infu-
sion. This occurred weekly for 14 weeks. To
reduce my time commitment, I taught the
patient's wife to monitor the infusion after I
had started it. During this time he required
several transfusions of packed cells, which
were also done at home.
Five months after his initial presenta-
tion, the patient developed a new pneumo-
nia. The patient did not want to go into
hospital, and after telephone consultation
with the infectious disease specialist, we de-
cided to treat him with oral trimetho-
.
prim-sulfamethoxazole, with excellent
results. This episode occurred while his wife
was in another hospital for a cholecystecto-
my. During this time, I personally collected
all blood samples, packed them, and sent
them to the tertiary care center by courier
because the patient did not want the staff
in the local or regional hospital to know
about his diagnosis. In the case of home
transfusions, I collected and transported
the blood to and from the tertiary care cen-
ter, where the cross-match was done ac-
cording to accepted protocol for HIV
infection. Although this was not the proce-
dure usually followed, it was done on two
occasions to ensure the patient's confiden-
tiality. Once he consented to admission to
the community hospital, cross-matching
was done locally.
Two months later he developed septice-
mia, again due to pneumonia. He re-
quested that he not be sent to the tertiary
care center for treatment; however, he did
agree to be admitted to the local hospital.
He again recovered quickly.
Deterioration. During the next 9
months, his condition gradually deterio-
rated. He required three short admissions
to our hospital for pneumonia and one for
dehydration. Episodes of short-term
memory loss developed, which worsened to
Canadian Family Physician VOL 36: December 1990 2203
 the point of frank dementia at times. He
could no longer drive and required increas-
ing supervision.
These concerns prompted many discus-
sions with him and his wife concerning con-
tinuation of treatment. He felt unable to go
on any longer, and was indeed sick at home
with vomiting, diarrhea, extreme anorexia,
emaciation, and profound fatigue. As well,
his dementia was rapidly worsening. We
decided that further infections would not be
treated.
KEEPING PATEENTS AT HOME: Rural
patients are often best caredfor within 11w communi!y.
* 0 0 0 0 * 0 - 0 0 - 0 0 - 0 * - -*0 0
-*
Fifteen months after initial presenta-
tion, he was admitted again to the local cot-
tage hospital with pneumonia. He was
given nursing care only and was made very
comfortable; he was not given antibiotics.
He died 2 days later. To avoid possible
problems with funeral arrangements, the
nurses and I prepared his body for burial,
following the recommendations of the Na-
tional Advisory Committee on AIDS.2
Discussion
This case illustrates the importance of conti-
nuity and comprehensiveness of care, as well
as a family-centered approach to patient
care.' It also illustrates the time commitment
necessary to properly care for someone with
AIDS in a rural practice. This required one
to two house calls per week. During this pa-
tient's illness he had 11 admissions of 2 to 12
days' duration in the local cottage hospital
and two admissions to the tertiary care cen-
ter. There were 12 outpatient admissions for
blood or drug infusions and 13 home infu-
sions of amphotericin B.
2204 Canadian Family Physician v01 36: December 1990
How the team supported us. My patient
and I benefited from the support available
to us. The other four physicians in my prac-
tice were quite willing to care for the patient
and his family during my absences. The pa-
tient's wife and two children were very sup-
portive of him. His wife cared for him at
home, ran their family business, and had to-
tal responsibility for the family. She became
familiar with all his treatments and provided
his nursing care. A caring family such as this
is important in the optimal care of a patient
with AIDS. Despite several meetings with
them, members of the extended family did
not feel that they could be of support to him.
This reaction could have been because of
fear of the disease itself or fear of attitudes
within the community.
The advice and support of the infec-
tious disease specialist was invaluable. Car-
ing for this patient in our community would
have been impossible without him.
Support for the patient. Advocacy for
the patient and his family was an important
role for me. There was within the commu-
nity a great deal of misinformation, para-
noia, and fear surrounding the issue of
AIDS. The patient's confidentiality was dif-
-00 0
- 0 -6 la -9
4. 0 0 -
ficult to maintain. The community needed
to be reassured that there was no risk of ob-
taining AIDS through casual contact. As
one way of demonstrating that, I spent time
with the family, professionally and socially,
and brought my child to visit with the fami-
ly during house calls. WVith permission from
the parents, I was also involved in talking
to school counselors about the patient's
children. This occurred more toward the
end of his illness and after his death to en-
sure that the children were coping well in
school and that they were receiving support
from their teachers and classmates.
Educating staff. It was not until 8
months into his illness that the patient con-
sented to admission to the local hospital.
The staff had no prior experience with
AIDS and had the usual fear and appre-
hension about the disease, and because of
the issue of patient confidentiality I was un-
able to do any anticipatory staff education.
Education had to begin on his first admis-
sion. This involved films, videos, and litera-
ture from the Canadian Public Health
Association and Health and Welfare Cana-
da, as well as in-service sessions provided
by the nursing director, me, and guest lec-
turers from regional centers and from the
nursing faculty at the university.
Protocols for blood and body fluid pre-
cautions and Hickman catheter care were
developed. In addition to this, one-on-one
education with the nursing staff was impor-
tant. I frequently touched the patient to
show the staff that this was safe. Confiden-
tiality was of major importance, and this
precept was reinforced to the staff.
Initially some of the nursing staff were
reluctant to care for this patient. Ultimate-
ly, one nurse decided to leave her job be-
cause of his presence. On the whole,
however, this man was looked after compe-
tently, efficiently, and humanely. In the
end, the nurses grew to care about him and
his family.
Making decisions. Decision making in
this case involved several members of a
team. The patient and his immediate fami-
ly were always involved in decisions about
treatment, hospitalization, or transfer to
the tertiary care center. The specialist con-
sultant in infectious disease was an impor-
tant part of the decision-making team.
Preparing for his inevitable death was
difficult for both the patient and his family.
In the 4 to 5 months before his death, we
frequently discussed his wishes for further
care and intervention. Even though this pa-
tient required many admissions to hospital,
he was still able to live at home during most
of his illness, be with his children and wife,
and continue to be interested in his business
and his friends.
Counting the cost. There is a high cost
to the physician in caring for a patient with
AIDS in a rural community. The time and
emotional commitment required are tax-
ing. As this patient's family physician, I
shared his emotional turmoil and pain. The
time spent caring- for and talking to this
man and his family and the effort spent in
public and staff education gave me great
personal satisfaction. I felt we were able to
allow him to maintain his dignity and inde-
pendence as much as possible by caring for
him in a humane way in his own home and
in hi]s own community.
Implications
This case illustrates the need for rural fami-
ly physicians to familiarize themselves with
this disease and be willing to look after peo-
ple with AIDS in their own community. Pa-
tients' interests are best served by allowing
them to live, work, and be cared for in their
own community rather than being sent to
a tertiary care hospital, which is often far
away from family and support. "At risk"
patients who long ago moved from their ru-
ral towns of origin to urban areas may well
return to their families if AIDS is
diagnosed.4
For the most part, education on AIDS
for nurses practising in rural areas has not
only increased their knowledge about the
disease but has also made positive changes
in their attitudes about homosexuality.5
Rural hospitaN that have not already done
so should begin to educate their nursing
staff about AIDS.
If we as rural physicians are to take on
the task of caring for patients with AIDS in
our communities, then we must continue to
increase our knowledge, prepare ourselves
emotionally, and also prepare our hospital
staffs and communities. E
Acknowledgment
I gratefully acknowledge the support of Dr A1I.1
Bowmer during my patients illness, the help and
support of Drs Brian Momrs and Marshall Godwin
in the preparation of this article, and especially my
patient} wife, who has continued to be a source of
inspiration and support.
Requests for reprints to: Dr PS. Duke, c/o
Family Practice Unit, Health Sciences Complex,
St John s, NF/FAJB 3V6
References
1. Morris BAP. Suggested guidelines for the family
medicine case report [Editorial]. Can Fam Physi-
cian. 1990;36:1351-2 (Eng); 1354-5 (Fr).
2. National Advisory Committee on AIDS. AIDS -
guidlines for funeral directors. Can Dis Wkly Rep
1986; 1 2(45):203-8.
3. McWhinney I. An introduction tofamily medicine.
Oxford, UK: Oxford University Press,
198 1:15-22.
4. Verghese A, Berk SL, Sarultois F. Human immu-
nodeficiency virus infection in rural Tennessee.
J Infect Dis 1989;160(6):1051-5.
5. Young EW, Koch PB, Preston DB. AIDS and
homosexuality: a longitudinal study of knowledge
and attitude change among rural nurses.
Public Health Nurs 1 989;6(4): 189-96.
Canadian Family Physician VOL 36: December 1990 2205