Reasons For Dissatisfaction A Survey of Relatives of Intensive Care Patients Who Died.

Ovid: Reasons for dissatisfaction: A survey of relatives of intensive care patients who died.
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Journals A-Z ≫ Critical Care Medicine ≫ 26(7) July 1998 ≫ Reasons for dissatisfaction: A survey of relatives of intensive
care patients who died.
Critical Care Medicine

Issue: Volume 26(7), July 1998, pp 1187-1193
Copyright: © Williams & Wilkins 1998. All Rights Reserved.
Publication Type: [Clinical Investigations]
ISSN: 0090-3493
Accession: 00003246-199807000-00018
[Clinical Investigations]
Reasons for dissatisfaction: A survey of relatives of intensive care patients who

died
Malacrida, Roberto MD; Bettelini, Cristina Molo PhD; Degrate, Alessandro MD; Martinez, Marina PS; Badia, Franco SC;
Piazza, Jocelyne RN; Vizzardi, Nicoletta RN; Wullschleger, Roberta PhL; Rapin, Charles Henri MD
Author Information
From the Intensive Care Units, Regional Hospitals, Lugano-Bellinzona, CH (Dr. Malacrida, Ms. Piazza, Ms. Vizzardi,
Ms. Wullschleger); Sasso Corbaro Clinical Research Institute, Bellinzona, CH (Ms. Martinez and Mr. Badia);
Sociopsychiatric Research Centre, Mendrisio, CH (Drs. Molo Bettelini and Degrate); Geriatric Department, University of
Geneva (Dr. Rapin), Geneva, Switzerland.
Supported, in part, by grants of 125th Jubileum Basle Insurance Company.
Address requests for reprints to: Roberto Malacrida, MD, Intensive Care Unit, Regional Hospital-Civic, Via Tesserete
46, CH-6900 Lugano, Switzerland.
Abstract
Objective: To describe the reasons for eventual dissatisfaction among the families of patients who died in the
intensive care unit (ICU), regarding both the assistance offered during the patient's stay in the hospital and the
information received from the medical staff.
Design: Cross-sectional descriptive study, which was conducted after a survey using a questionnaire.
Setting: Interdisciplinary ICU (n = 8 beds) at San Giovanni Hospital in Bellinzona (CH).
Subjects: Three-hundred ninety families of patients who died in the ICU.
Interventions: None.
Measurements and Main Results: A postal questionnaire (n = 43 questions) was sent to the families of 390
patients who died in the ICU during 8 yrs (1981 to 1989).
The results referred to 123 replies: a) 82.6% of the respondents expressed no criticism of the patient's hospital
stay; b) 90% considered the patient's treatment was adequate; c) 17% felt that the information received concerning
diagnosis was insufficient or unclear; and d) 30% (particularly close relatives and those relatives who were
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diagnosis was insufficient or unclear; and d) 30% (particularly close relatives and those relatives who were
informed of the death by telephone and not in person) expressed dissatisfaction regarding the information received
on the cause of death.
Conclusions: Our survey found that the relatives of patients who died were most dissatisfied with the care
received according to: a) the type of death (e.g., sudden death vs. death preceded by a gradual deterloration in
the patient's condition); and b) the manner in which the relatives were notified of the death (in person vs. by
telephone). The personal characteristics of the people interviewed, such as gender and the closeness of their
relationship to the deceased, also seem to have some bearing on the opinions expressed. A high percentage of
respondents were satisfied with the treatment received by their dying relative and the information conveyed by
caregivers. Nevertheless, the dissatisfaction expressed by some respondents indicates a need for improvement,
especially in communicating information to the relatives of these patients. (Crit Care Med 1998; 26:1187-1193)
Key Words: death; intensive care unit; relatives; family satisfaction
In the relevant literature, there are few studies that focus on the opinions of relatives and persons who were
close to a patient who died in the intensive care unit (ICU). The conclusions of studies on the needs of the
families of patients in the ICU have several points in common [1]. "To feel there is hope" appears to be
fundamental [2]. Above all, families ask, "to be honestly informed" and "to be reassured that the patient is
receiving the best possible care" [3]. Families need "to be reassured concerning the patient's comfort" [4] and "to
be relieved of anxiety" [5,6] caused by the predicament of having a family member in the ICU. Families also want
"to be sure of being notified should the patient's condition deteriorate" [7,8].
The event of death and the retrospective analysis of the feelings and opinions of family members are a
separate subject within the context of the needs described in the literature. The death of a family member
generally constitutes an intense experience, not always anticipated. The final parting, from a person close to the
deceased, arouses a vast range of emotions that can include anguish, a sense of impotence, the need to find a
scapegoat, and/or the need for someone to be there.
Therefore, in circumstances where treatment has not led to recovery, the knowledge that the treatment was
in any case carried out, and the quality of the relationship established between staff and family, are factors of
particular importance. The aim of this current study is to analyze the degree of satisfaction of families regarding
the assistance given to their relative and the information received. Another objective of this study is to increase
the awareness of the issues involved for medical and nursing staff when family members express dissatisfaction
with the medical care that their dying relative received. We also hoped to define profiles of family members
whose needs require greater consideration.
MATERIALS AND METHODS
Type of Study. This cross-sectional descriptive study was conducted by means of questionnaires mailed to 390
relatives of patients who died in the ICU of the San Giovanni Hospital in Bellinzona (Ticino, Switzerland) throughout
an 8-yr period (1981 to 1989). Of these questionnaires, 150 were returned unopened because the address was no
longer correct; of the remaining 240 questionnaires, 123 were returned duly completed. The sample of subjects
who responded was compared with the whole group; no significant differences were noted for year of death,
gender, or age.
Methods and Statistical Analysis. The questionnaire (Appendix) consisted of 43 questions and requested
information on the following aspects: a) general information on the respondent (subject) and on the patient who
died, including the date of death; b) the relationship of the subject to the deceased, subdivided into "close family"
(i.e., spouse, parent, brother/sister, son/daughter) and "other relative"; c) information on the period before the
patient was admitted to the ICU, as well as concern for the state of health of the relative and whether or not the
relative had a preference for earlier admittance of the patient; d) perceptions by the subject of the quality of
information received regarding the diagnosis, cause of death, and consequences of the illness; e) complaints by the
subject concerning any aspect of the hospital stay; f) the subject's opinion on the quality of the treatment
received by the patient; and g) information concerning any support received by the subject within the hospital or
from outside sources, after the death of the patient.
The replies were analyzed using Statistical Package for the Social Sciences software (SPSS, Cary, NC). In
addition to calculating the distribution of the frequency of replies to the more salient questions, we conducted
bivariate analyses on several factors inherent in the characteristics of the subject and the patient, which were
correlated with the level of satisfaction of the subject. The statistical significance of the bivariate analyses was
evaluated by means of the chi-square test, referring to the Yates correction for tables 2 x 2. Probability values at
p <or=to.05 were considered statistically significant.
RESULTS
Deceased Patients. Analysis of the questionnaires shows that 67.5% of the deceased were male and 32.5% were
female. The age range was between 10 and 90 yrs, and the average age was slightly higher in women. We found
that 6.2% of men were <36 yrs of age, compared with 2.6% of women (Table 1). Most of the deceased were
married (74.0%), followed by widowers (13.0%) and unmarried (9.8%).
Table 1. Distribution of deceased patients according to gender and age
In the opinion of the subjects, 23.9% of patients died suddenly, while the remainder died after a period of
gradual deterioration. The highest percentage of sudden deaths was in the age group from 66 to 75 yrs (27%), and
the lowest percentage of sudden deaths was in patients >75 yrs (19.2%).
Subjects. Of the respondents who answered the questionnaire, most were women (74.4%) and, on average,
they were slightly older than the men. Most of the men, at the time of the death of the relative, were <51 yrs of
age (63.4%), while most of the women were between 51 and 70 yrs of age (53.9%) (Table 2).
Table 2. Distribution of questionnaire subjects according to gender and age at the time of the relative's death
Period Before Admittance. In the 3 mos before ICU admission, 28.3% of the subjects were worried about the
health of the relative. This percentage is not consistent, but varies according to certain characteristics. For
example, women were shown to be more worried than men, and close family members were more worried than
other relatives.
Finally, there is a significant association between the age of the deceased and the degree of concern for
his/her health. Most of the subjects who said they were worried were between 56 and 75 yrs of age. Presumably,
these subjects were worried because of the patient's critical illness.
Although only 28.3% of the subjects were concerned about the health of their relative, 50.5% would have
preferred earlier admittance to hospital. The answer to this question is influenced by the type of death: 57.6% of
respondents whose relatives died after a period of deterioration would have wanted earlier admittance, as
opposed to 33.3% of respondents whose relatives died suddenly. In addition, [similar]57% of the subjects would
have liked their relative to have undergone tests or treatment before admittance.
Criticism of the Hospital Stay and Treatment. Seventeen percent of the subjects expressed some criticism of
the hospital stay. Statistically significant differences do not emerge from the analyses, although men are shown to
be more critical than women and subjects whose relatives died at a more advanced age are more critical than
subjects whose relative was younger (Table 3).
Table 3. Criticisms of relative's stay in hospital
Concerning the treatment given to the patient, 10% of the subjects considered it inadequate/unsuitable.
Criticism regarding this issue was expressed by: a) more men than women; b) close family members more than
other relatives; and c) more subjects in cases where the patient's death followed a progressive illness. The
relationship between criticism expressed and the age of the deceased was significant (p = .05): The highest
percentage of criticism was in cases where the deceased was between 55 and 65 yrs of age (Table 4).
Table 4. How do you rate the treatment given to your relative?
Criticism of the Information Given. The percentage of subjects who were dissatisfied with the information they
received regarding the diagnosis (17.1%) and the consequences of the illness (18.3%) was equivalent to the
percentage of subjects who expressed general criticism concerning the patient's hospital stay. However, regarding
information on the cause of death, the percentage of subjects who stated that they were dissatisfied with the
information was higher (30.4%). It is evident that close family members, more than other relatives, and those
persons who were informed of the death by telephone, rather than personally by a hospital staff member, were
dissatisfied to a statistically significant degree (Table 5).
Table 5. How do you rate the information given regarding diagnosis, cause, and consequences of the illness?
Dissatisfaction with information concerning both diagnosis and the consequences of the illness was expressed
by: a) more women than men; b) close family members more than other relatives; and c) more subjects whose
by: a) more women than men; b) close family members more than other relatives; and c) more subjects whose
relative died after a period of deterioration (Table 5). However, there appears to be no statistically significant
relationship.
Globally, about 70% of the subjects, without distinction of gender, were satisfied with the information
received; about 9% stated that the information was unsatisfactory in all three aspects, and 12.4% stated the
information was unsatisfactory in at least one of the three aspects. Close family members were shown to be
significantly (p < .05) more dissatisfied than other relatives. Twenty percent of cases where the patient did not
die suddenly found at least two categories of information unsatisfactory, compared with 5% of subjects whose
relative died suddenly.
Twenty-five percent of subjects claimed that they received information only after requesting it. It is mainly
close family members (29.5%), in comparison with other relatives (5.6%), who complained of this paucity of
information. Fifty-three percent stated that they were informed of the death personally by a member of the
hospital staff, and 46.8% were informed by telephone. A decreasing percentage of subjects were notified of the
death by telephone in the later time period of the study: from 51.1% in the first 4 yrs (1981 to 1984) to 31% in the
last 4 yrs (1985 to 1989). This result might have been found because of the Hawthorn effect.
Assistance Received. Ninety percent of subjects stated that the assistance they received during their relative's
stay in the hospital was sufficient for their needs; 2.7% were dissatisfied and 7.3% answered that they were unable
to evaluate the help received. Women were slightly less satisfied than the men (88.7% compared with 93.4%) and
close family members (89.1%) were less satisfied than other relatives (94.4%). No relative of a patient who died
suddenly expressed dissatisfaction, compared with 2.6% of those whose relative died after a progressive illness.
However, 15.4% considered themselves unable to evaluate the assistance received.
The type of assistance that the subjects would have liked to have received after the death of their relative
varied with the type of death, the age of the deceased, and, in a statistically significant manner, with the gender
of the subject. In fact, 28.2% of women, 25% of subjects whose relative died suddenly, and 30.8% of subjects
whose relative died under the age of 56 yrs would have appreciated greater moral and psychological support,
rather than technical information and practical explanations. The data show a surprising fact: No male stated a
desire for moral or psychological support (Table 6).
Table 6. What sort of assistance would you have wanted?
As far as assistance received outside the hospital is concerned, it was the men and the older subjects who
stated that they had received no help. Of those subjects who said they had received assistance from some source
outside the hospital, 9% claimed the assistance did not correspond to their needs. This group of respondents
(23.8%) comprised mainly the younger subjects (19 to 40 yrs of age) and subjects whose relative died under the
age of 56 yrs.
DISCUSSION
More males than females died in the ICU during the period under consideration. This difference might be
attributable to the different causes of death between men and women. The age difference found in the men and
women who answered the questionnaire is probably due to the fact that the male subjects were more often the
sons of the deceased, while the women were most often the wives of the deceased.
The different distribution of percentages among men and women, close family members, and other relatives
who were worried about the health of their relative before hospital admission, or who wanted earlier admittance,
suggests that concern for the health of the relative and the desire for earlier hospital treatment were not
associated with the type of illness or the symptoms displayed by the patient before admittance. Instead, this
concern was influenced by emotional and personal factors.
On the whole, the subjects were more satisfied with the treatment and assistance given to the patient during
the patient's stay in the hospital than with the information received, particularly regarding information on the
cause of death. This attitude seems to confirm the importance that families have attributed to information in
cause of death. This attitude seems to confirm the importance that families have attributed to information in
situations where there is heightened concern for the life of a relative. Similar importance was attributed to the
way in which a relative was notified of death: Subjects who received the news by telephone professed more
dissatisfaction with the information received than others, especially regarding the cause of death.
The results of the study seem to suggest that other factors can influence the degree of dissatisfaction
expressed by relatives of critically ill patients who died. As already seen, it appears that the type of relationship,
i.e., the intensity of the emotional bond, is associated with the degree of satisfaction: Close family members are
less satisfied than other relatives. The subjects who were not close family members seem less interested in being
informed of the state of health of the patient and less demanding concerning the quality of the information
received; these subjects express satisfaction with the information received. Also, men appear more critical of the
type of treatment and hospitalization, while women are more critical of the manner in which they are informed.
Another differentiation between men and women is the type of support requested: Men requested hospital services
more than women and women requested psychological services more than men.
Another factor that seems to emerge is a type of resignation to the course of events on the part of the
relatives of patients who died unexpectedly. These subjects were more satisfied with the treatment and the
information received than those subjects whose relative's death was foreseen.
The principal limit of this study is the low percentage of completed questionnaires received, which could
represent a preselection bias of subjects. A further limiting factor is that the answers were based on the
recollection of events, which, in some cases, happened many years earlier. This situation perhaps explains the
many blanks in the answers to some questions.
This study does not claim to be exhaustive, nor to demonstrate connections of cause/effect, but to offer a
few ideas for further studies in this field. Such studies are lacking in the literature, and would benefit
practitioners who are confronted daily with these problems. Moreover, studies of this type are needed so that
practitioners can rectify deficiencies in the information given to relatives of critically ill patients who die, and to
improve communication with these relatives.
Summary. Our survey found that the relatives of patients who died were most dissatisfied with the care
received according to: a) the type of death (e.g., sudden death vs. death preceded by a gradual deterioration in
the patient's condition); and b) the manner in which the relatives were notified of the death (in person vs. by
telephone). The personal characteristics of the people interviewed, such as gender and the closeness of their
relationship to the deceased, also seem to have some bearing on the opinions expressed. A high percentage of
respondents were satisfied with the treatment received by their dying relative and the information conveyed by
caregivers. Nevertheless, the dissatisfaction expressed by some respondents indicates a need for improvement,
especially in communicating information to the relatives of these patients.
Appendix. Questionnaire for families of patients who died in the intensive care unit
A. Information Concerning the Patient Who Died
1. Family and first name:
2. Date of birth:
3. Profession:
4. Civil status:
5. Address:
6. Nationality:
7. Date of death:
B. Information Concerning the Person Who Is Answering the Questionnaire and the Family of the Patient
1. First and family name:
2. Relationship to the died patient:
3. Age:
4. Profession:
5. Civil status:
6. Address:
7. How many friends were involved within the period of the death of your relative?
8. How many family members (consort/parents/brothers/sisters/children)?
C. Information Concerning the Period (3 Months) Before the Hospitalization of the Relative
1. Did your relative, in your opinion, show signs of particular health problems before the acute event that
brought him/her to the hospital?
a) Yes b) No c) I don't know
If yes, which signs and from how long?
2. Was your relative anxious?
If yes: a) Because of the illness b) Because of other external reasons, which were:
3. Were you also anxious for your relative?
4. Would you have desired to subject your relative to any examination or treatment before the
hospitalization?
5. Did you desire an earlier hospitalization?
6. Was your relative in favor of the hospitalization?
7. Did you notice whether your relative was talking about the future less than he/she usually did?
D. Information Concerning the Hospitalization Period in the Intensive Care Unit
1. Do you remember who sent your relative to the hospital?
a) The family's doctor b) The orderly doctor c) A family member d) He/she went alone to the hospital
2. Was someone of the family present at the moment of the death? Who?
3. The death was
a) Sudden b) Preceded by a gradual worsening period in the hospital
4. Do you remember if your relative was suffering?
5. Did your relative speak to you or to somebody else of the family about his imminent death? Do you
remember with whom? Do you remember how he broached the subject?
6. Did you have any doubt, during the hospitalization, about the deadly outcome? When?
7. Concerning the hospitalization period, are there any critiques that you want to express?
If yes: a) About the treatments given b) About the medical staff's availability
8. Do you think that the treatments given were:
a) Adequate b) Excessive c) Insufficient d) Other, Specify:
E. Regarding the Information and Support Given to the Family in the Intensive Care Unit (ICU)
1. The information you got was Table 7
Table 7. No caption available.
2. Did you have to ask for information?
a) Yes b) No
3. From whom would you have preferred to be informed?
a) From the doctor b) From the nurses
4. How do you assess the mannerism of the ICU doctors? Table 8
5. Who, of your family, received the information about the death of your relative?
The information was given:
a) Personally b) By telephone
Do you remember what they said?
6. The help you received at the hospital covered your needs?
If not, why?
Who particularly helped you?
7. What kind of supplementary help would you have desired to receive?
a) Technical information about the illness
b) Practical explications about what to do
c) Moral support
d) Psychological help
e) Other, specify:
F. Period After the Death
1. Was there anybody who helped you during the period (about 3 months) following the death of your relative?
a) Yes b) No
If yes, who? a) Relatives b) Friends c) Doctors/psychologists
2. Did the help received meet your needs?
3. Would you like to receive a copy of the results of this inquiry?
a) Yes b) No
If yes, please add your address:
REFERENCES
1. Pirad M, Janne P, Installe E, et al: Patient famille, soignants et unite de soins intensifs: Revue de la litterature
et etat d'une pratique "sur le terrain." Ann Med Psychol 1994; 152:600-608 [Context Link]
2. Molter NC: Needs of relatives of critically ill patients: A descriptive study. Heart Lung 1979; 8:332-339 [Context
Link]
3. Irwin BL, Meier JR: Supportive measures for the fatally ill. Abstr. Communicating Nursing Research 1973; 6:126
OLinks [Context Link]
4. Hampe SO: Needs of the grieving spouse in a hospital setting. Nurs Res 1975; 24:113-120 OLinks Request
Permissions Buy Now [Context Link]
5. Breu C, Dracup K: Helping the spouses of critically ill patients. Am J Nurs 1978; 78:50-53 OLinks Request
Permissions Buy Now [Context Link]
6. Daley L: The perceived immediate needs of family with relatives in intensive care setting. Heart Lung 1984;
13:231-237 [Context Link]
7. Rodgers CD: Needs of relatives of cardiac surgery patients during the critical care phase. Focus Critical Care
1983; 10:50-55 [Context Link]
8. Forrester DA, Murphy PA, Price DM, et al: Critical care family needs: Nurse-family members confederate pairs.
Heart Lung 1990; 19:655-661 [Context Link]
IMAGE GALLERY
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Ovid: Reasons for dissatisfaction: A survey of relatives of intensive care patients who died.

Critical Care Medicine

Reasons for dissatisfaction: A survey of relatives of intensive care patients who

Setting: Interdisciplinary ICU (n = 8 beds) at San Giovanni Hospital in Bellinzona (CH).

Subjects: Three-hundred ninety families of patients who died in the ICU.

Key Words: death; intensive care unit; relatives; family satisfaction

MATERIALS AND METHODS

Table 1. Distribution of deceased patients according to gender and age

Table 3. Criticisms of relative's stay in hospital

Table 4. How do you rate the treatment given to your relative?

Table 6. What sort of assistance would you have wanted?

A. Information Concerning the Patient Who Died

1. Family and first name:

1. First and family name:

2. Relationship to the died patient:

8. How many family members (consort/parents/brothers/sisters/children)?

a) Yes b) No c) I don't know

If yes, which signs and from how long?

2. Was your relative anxious?

a) Yes b) No c) I don't know

3. Were you also anxious for your relative?

a) Yes b) No c) I don't know

a) Yes b) No c) I don't know

5. Did you desire an earlier hospitalization?

a) Yes b) No c) I don't know

6. Was your relative in favor of the hospitalization?

a) Yes b) No c) I don't know

a) Yes b) No c) I don't know

D. Information Concerning the Hospitalization Period in the Intensive Care Unit

1. Do you remember who sent your relative to the hospital?

3. The death was

a) Sudden b) Preceded by a gradual worsening period in the hospital

4. Do you remember if your relative was suffering?

a) Yes b) No c) I don't know

a) Yes b) No c) I don't know

8. Do you think that the treatments given were:

a) Adequate b) Excessive c) Insufficient d) Other, Specify:

1. The information you got was Table 7

Table 7. No caption available.

2. Did you have to ask for information?

3. From whom would you have preferred to be informed?

a) From the doctor b) From the nurses

4. How do you assess the mannerism of the ICU doctors? Table 8

Table 8. No caption available.

Table 8. No caption available.

The information was given:

Do you remember what they said?

6. The help you received at the hospital covered your needs?

a) Yes b) No c) I don't know

Who particularly helped you?

7. What kind of supplementary help would you have desired to receive?

a) Technical information about the illness

b) Practical explications about what to do

F. Period After the Death

If yes, who? a) Relatives b) Friends c) Doctors/psychologists

2. Did the help received meet your needs?

a) Yes b) No c) I don't know

3. Would you like to receive a copy of the results of this inquiry?

If yes, please add your address:

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