Reasons for Dissatisfaction a Survey of Relatives of Intensive Care Patients Who Died.

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[Clinical Investigations]

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

Reasons for dissatisfaction: A survey of relatives of intensive care patients whodiedMalacrida, 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 InformationFrom 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 theinformation 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 390patients 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 hospitalstay; b) 90% considered the patient's treatment was adequate; c) 17% felt that the information received concerning

Critical Care MedicineIssue: Volume 26(7), July 1998, pp 1187-1193Copyright: Williams & Wilkins 1998. All Rights Reserved.

Publication Type: [Clinical Investigations]ISSN: 0090-3493Accession: 00003246-199807000-00018
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diagnosis was insufficient or unclear; and d) 30% (particularly close relatives and those relatives who wereinformed of the death by telephone and not in person) expressed dissatisfaction regarding the information receivedon the cause of death.

Conclusions: Our survey found that the relatives of patients who died were most dissatisfied with the carereceived according to: a) the type of death (e.g., sudden death vs. death preceded by a gradual deterloration inthe 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 theirrelationship 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 bycaregivers. 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 wereclose to a patient who died in the intensive care unit (ICU). The conclusions of studies on the needs of thefamilies of patients in the ICU have several points in common [1] . "To feel there is hope" appears to befundamental [2] . Above all, families ask, "to be honestly informed" and "to be reassured that the patient isreceiving the best possible care" [3] . Families need "to be reassured concerning the patient's comfort" [4] and "tobe 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 aseparate subject within the context of the needs described in the literature. The death of a family membergenerally constitutes an intense experience, not always anticipated. The final parting, from a person close to thedeceased, arouses a vast range of emotions that can include anguish, a sense of impotence, the need to find ascapegoat, and/or the need for someone to be there.

Therefore, in circumstances where treatment has not led to recovery, the knowledge that the treatment wasin 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 regardingthe assistance given to their relative and the information received. Another objective of this study is to increasethe awareness of the issues involved for medical and nursing staff when family members express dissatisfactionwith the medical care that their dying relative received. We also hoped to define profiles of family memberswhose needs require greater consideration.

MATERIALS AND METHODS
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Type of Study. This cross-sectional descriptive study was conducted by means of questionnaires mailed to 390relatives of patients who died in the ICU of the San Giovanni Hospital in Bellinzona (Ticino, Switzerland) throughoutan 8-yr period (1981 to 1989). Of these questionnaires, 150 were returned unopened because the address was nolonger correct; of the remaining 240 questionnaires, 123 were returned duly completed. The sample of subjectswho 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 whodied, 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 thepatient was admitted to the ICU, as well as concern for the state of health of the relative and whether or not therelative 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 thesubject concerning any aspect of the hospital stay; f) the subject's opinion on the quality of the treatmentreceived by the patient; and g) information concerning any support received by the subject within the hospital orfrom outside sources, after the death of the patient.

The replies were analyzed using Statistical Package for the Social Sciences software (SPSS, Cary, NC). Inaddition to calculating the distribution of the frequency of replies to the more salient questions, we conductedbivariate analyses on several factors inherent in the characteristics of the subject and the patient, which werecorrelated with the level of satisfaction of the subject. The statistical significance of the bivariate analyses wasevaluated by means of the chi-square test, referring to the Yates correction for tables 2 x 2. Probability values atp


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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%), andthe 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


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Finally, there is a significant association between the age of the deceased and the degree of concern forhis/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 havepreferred 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, asopposed to 33.3% of respondents whose relatives died suddenly. In addition, [similar]57% of the subjects wouldhave 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 tobe more critical than women and subjects whose relatives died at a more advanced age are more critical thansubjects 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 thanother relatives; and c) more subjects in cases where the patient's death followed a progressive illness. Therelationship between criticism expressed and the age of the deceased was significant (p = .05): The highestpercentage of criticism was in cases where the deceased was between 55 and 65 yrs of age ( Table 4 ).
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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 theyreceived regarding the diagnosis (17.1%) and the consequences of the illness (18.3%) was equivalent to thepercentage of subjects who expressed general criticism concerning the patient's hospital stay. However, regardinginformation on the cause of death, the percentage of subjects who stated that they were dissatisfied with theinformation was higher (30.4%). It is evident that close family members, more than other relatives, and thosepersons who were informed of the death by telephone, rather than personally by a hospital staff member, weredissatisfied to a statistically significant degree ( Table 5 ).
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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
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by: a) more women than men; b) close family members more than other relatives; and c) more subjects whoserelative died after a period of deterioration ( Table 5 ). However, there appears to be no statistically significantrelationship.

Globally, about 70% of the subjects, without distinction of gender, were satisfied with the informationreceived; 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 besignificantly (p < .05) more dissatisfied than other relatives. Twenty percent of cases where the patient did notdie suddenly found at least two categories of information unsatisfactory, compared with 5% of subjects whoserelative died suddenly.

Twenty-five percent of subjects claimed that they received information only after requesting it. It is mainlyclose 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 thehospital staff, and 46.8% were informed by telephone. A decreasing percentage of subjects were notified of thedeath by telephone in the later time period of the study: from 51.1% in the first 4 yrs (1981 to 1984) to 31% in thelast 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'sstay in the hospital was sufficient for their needs; 2.7% were dissatisfied and 7.3% answered that they were unableto evaluate the help received. Women were slightly less satisfied than the men (88.7% compared with 93.4%) andclose family members (89.1%) were less satisfied than other relatives (94.4%). No relative of a patient who diedsuddenly 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 genderof the subject. In fact, 28.2% of women, 25% of subjects whose relative died suddenly, and 30.8% of subjectswhose 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 adesire for moral or psychological support ( Table 6 ).
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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 whostated that they had received no help. Of those subjects who said they had received assistance from some sourceoutside 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 theage of 56 yrs.

DISCUSSION

More males than females died in the ICU during the period under consideration. This difference might beattributable to the different causes of death between men and women. The age difference found in the men andwomen who answered the questionnaire is probably due to the fact that the male subjects were more often thesons 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 notassociated with the type of illness or the symptoms displayed by the patient before admittance. Instead, thisconcern was influenced by emotional and personal factors.

On the whole, the subjects were more satisfied with the treatment and assistance given to the patient duringthe patient's stay in the hospital than with the information received, particularly regarding information on the
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cause of death. This attitude seems to confirm the importance that families have attributed to information insituations where there is heightened concern for the life of a relative. Similar importance was attributed to theway in which a relative was notified of death: Subjects who received the news by telephone professed moredissatisfaction 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 areless satisfied than other relatives. The subjects who were not close family members seem less interested in beinginformed of the state of health of the patient and less demanding concerning the quality of the informationreceived; these subjects express satisfaction with the information received. Also, men appear more critical of thetype 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 servicesmore 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 therelatives of patients who died unexpectedly. These subjects were more satisfied with the treatment and theinformation 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 couldrepresent a preselection bias of subjects. A further limiting factor is that the answers were based on therecollection of events, which, in some cases, happened many years earlier. This situation perhaps explains themany 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 afew ideas for further studies in this field. Such studies are lacking in the literature, and would benefitpractitioners who are confronted daily with these problems. Moreover, studies of this type are needed so thatpractitioners can rectify deficiencies in the information given to relatives of critically ill patients who die, and toimprove communication with these relatives.

Summary. Our survey found that the relatives of patients who died were most dissatisfied with the carereceived according to: a) the type of death (e.g., sudden death vs. death preceded by a gradual deterioration inthe patient's condition); and b) the manner in which the relatives were notified of the death (in person vs. bytelephone). The personal characteristics of the people interviewed, such as gender and the closeness of theirrelationship 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 bycaregivers. 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


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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:


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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 thatbrought 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 thehospitalization?


5. Did you desire an earlier hospitalization?



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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
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Table 8. No caption available.

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


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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:

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4. Hampe SO: Needs of the grieving spouse in a hospital setting. Nurs Res 1975; 24:113-120 OLinks RequestPermissions Buy Now [Context Link]

5. Breu C, Dracup K: Helping the spouses of critically ill patients. Am J Nurs 1978; 78:50-53 OLinks RequestPermissions Buy Now [Context Link]
http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi#22http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi?Link+Set+Ref=00003246-199807000-00018%7C00000446_1978_78_50_breu_critically_%7c00003246-199807000-00018%23xpointer%28id%28R5-18%29%29%7c25%7c%7covftdb%7c00000446-197801000-00014&P=139&S=POPIFPINOJDDMJEJNCELMBJCFNACAA00&WebLinkReturn=Full+Text%3dL%7cS.sh.15.16.21.44.48%7c0%7c00003246-199807000-00018http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi?Link+Set+Ref=00003246-199807000-00018%7C00000446_1978_78_50_breu_critically_%7c00003246-199807000-00018%23xpointer%28id%28R5-18%29%29%7c130%7c%7covftdb%7c00000446-197801000-00014&P=139&S=POPIFPINOJDDMJEJNCELMBJCFNACAA00&WebLinkReturn=Full+Text%3dL%7cS.sh.15.16.21.44.48%7c0%7c00003246-199807000-00018http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi?Link+Set+Ref=00003246-199807000-00018%7C00000446_1978_78_50_breu_critically_%7c00003246-199807000-00018%23xpointer%28id%28R5-18%29%29%7c11117609%7chttp%3a%2f%2facs.tx.ovid.com%2facs%2f.429edc15ed17324fe7a4c9306686ac9d5507f5322d9f1f28e59282a65b72f647e4aa8a01dfa659b004730ba38d3ec6f494.gif%7covftdb%7c00000446-197801000-00014&P=139&S=POPIFPINOJDDMJEJNCELMBJCFNACAA00&WebLinkReturn=Full+Text%3dL%7cS.sh.15.16.21.44.48%7c0%7c00003246-199807000-00018http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi#22http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi?Link+Set+Ref=00003246-199807000-00018%7C00006199_1975_24_113_hampe_grieving_%7c00003246-199807000-00018%23xpointer%28id%28R4-18%29%29%7c25%7c%7covftdb%7c00006199-197503000-00009&P=138&S=POPIFPINOJDDMJEJNCELMBJCFNACAA00&WebLinkReturn=Full+Text%3dL%7cS.sh.15.16.21.44.48%7c0%7c00003246-199807000-00018http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi?Link+Set+Ref=00003246-199807000-00018%7C00006199_1975_24_113_hampe_grieving_%7c00003246-199807000-00018%23xpointer%28id%28R4-18%29%29%7c130%7c%7covftdb%7c00006199-197503000-00009&P=138&S=POPIFPINOJDDMJEJNCELMBJCFNACAA00&WebLinkReturn=Full+Text%3dL%7cS.sh.15.16.21.44.48%7c0%7c00003246-199807000-00018http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi?Link+Set+Ref=00003246-199807000-00018%7C00006199_1975_24_113_hampe_grieving_%7c00003246-199807000-00018%23xpointer%28id%28R4-18%29%29%7c11117609%7chttp%3a%2f%2facs.tx.ovid.com%2facs%2f.429edc15ed17324fe7a4c9306686ac9d5507f5322d9f1f28e59282a65b72f647e4aa8a01dfa659b004730ba38d3ec6f494.gif%7covftdb%7c00006199-197503000-00009&P=138&S=POPIFPINOJDDMJEJNCELMBJCFNACAA00&WebLinkReturn=Full+Text%3dL%7cS.sh.15.16.21.44.48%7c0%7c00003246-199807000-00018http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi#22http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi?Link+Set+Ref=00003246-199807000-00018%7C00003161_1973_6_126_irwin_supportive_%7c00003246-199807000-00018%23xpointer%28id%28R3-18%29%29%7c11117609%7chttp%3a%2f%2facs.tx.ovid.com%2facs%2f.429edc15ed17324fe7a4c9306686ac9d5507f5322d9f1f28e59282a65b72f647e4aa8a01dfa659b004730ba38d3ec6f494.gif%7covftdb%7c&P=137&S=POPIFPINOJDDMJEJNCELMBJCFNACAA00&WebLinkReturn=Full+Text%3dL%7cS.sh.15.16.21.44.48%7c0%7c00003246-199807000-00018http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi#22http://0-ovidsp.tx.ovid.com.carlson.utoledo.edu/sp-2.3/ovidweb.cgi#22


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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]

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Reasons for Dissatisfaction a Survey of Relatives of Intensive Care Patients Who Died.

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