© 2003 U.S. Cancer Pain Relief Committee 0885-3924/03/$–see front matterPublished by Elsevier. All rights reserved. PII S0885-3924(02)00636-X

128 Journal of Pain and Symptom Management Vol. 25 No. 2 February 2003

Original Article

Surveys to Assess Satisfaction with End-of-Life Care: Does Timing Matter?

David J. Casarett, MD, MA, Roxane Crowley, BA, and Karen B. Hirschman, PhD

Center for Health Equity Research and Promotion at the Philadelphia Veterans Affairs Medical Center (D.J.C.); the University of Pennsylvania Center for Bioethics (D.J.C.); Division of Geriatrics (D.J.C., R.C., K.B.H.); The Leonard Davis Institute of Health Economics (D.J.C.); and the University of Pennsylvania School of Social Work (K.B.H.), Philadelphia, Pennsylvania, USA

Abstract

The goals of this study were to determine whether post-death surveys of family members cause more distress if they are administered closer in time to the patient’s death, and whether family members are less likely to respond to earlier surveys. Caregivers of hospice patients were randomly

assigned to receive a survey at 2 weeks (n

�

107) or at 6 weeks (n

�

100) after the patient’s death. Response rates and self-reported distress experienced in completing the survey were recorded. There were no differences in self-ratings of distress between 2- and 6-week surveys, and response rates were identical (2-week: 54%; 6-week: 54%). Distress and response rate do not appear to be influenced by the timing of data collection, even when surveys are administered very soon after death.

J Pain Symptom Manage 2003;25:128–132.

© 2003 U.S. Cancer Pain Relief Committee. Published by Elsevier. All rights reserved.

Key Words

Hospice, satisfaction, surveys, grief, bereavement, research ethics

Introduction

Numerous recent studies have used post-deathsurveys to assess family members’ satisfaction withend-of-life care.

1–3

These surveys have asked fam-ily members to describe a patient’s last weeks,their pain and symptom management, and theirinvolvement in decision-making. In general, fam-ily members’ recollections offer a rich source ofinsights about end-of-life care, and suggest prom-ising avenues for quality improvement efforts.

However, despite their importance to re-search and clinical care, it is not known whenthese surveys should be administered. On one

hand, there is reason to believe that earlier sur-veys provide more accurate data about end-of-life care

4

and care in other settings.

5–8

This ad-vantage suggests that these surveys should beconducted as soon as possible after death.

On the other hand, the grieving process oftenbegins with a period of numbness or denial.

9,10

Therefore, it is possible that family members maynot be ready to think about the stressful events ofa patient’s death if a survey is conducted toosoon. If this is true, surveys that are administeredsoon after a patient’s death might have to over-come lower response rates and possible selectionbias. In addition, family members who do com-plete a survey may experience more distresswith earlier surveys.

9

Indeed, most post-deathsurveys are conducted at least 2 months afterdeath.

2,4,11,12

This concern may be particularlyrelevant for Institutional Review Boards (IRBs)that review satisfaction surveys for research.

Address reprint requests to:

David J. Casarett, MD, MA,Institute on Aging, 3615 Chestnut Street, Philadel-phia, PA 19104, USA.

Accepted for publication: April 10, 2002.

Vol. 25 No. 2 February 2003 Timing Satisfaction Surveys 129

In light of the advantages of improved accu-racy with earlier data collection, researchers andinstitutions may wish to consider earlier surveys.But it is not known whether earlier surveys wouldproduce lower response rates or greater dis-tress among respondents. Therefore, this ran-domized controlled trial was designed to an-swer these questions.

Methods

This study was conducted in cooperation withthe hospice affiliated with the University of Penn-sylvania. This hospice has a daily census of ap-proximately 200 patients in inpatient settings,at home, and in nursing homes. It has a me-dian length of stay of 24 days, which is typicalof other hospices nationwide.

13

All patients who were receiving hospice ser-vices at the time of death were eligible for in-clusion in this survey. Over a 3-month period,these patients’ primary caregivers were identi-fied prospectively in the hospice’s database.Each was randomly assigned to receive a surveyat 2 weeks or 6 weeks after the patient’s death.

All caregivers received a cover letter, a self-addressed stamped envelope, and a 3-page sur-vey. Surveys were anonymous, but were codedto identify the date on which the surveys weresent out and whether they were sent at 2 or 6weeks after the patient’s death. Surveys askedcaregivers to rate their overall satisfaction withthe care that the patient received during the last24 hours of life on a 0–3 scale, from “very dis-satisfied” to “very satisfied,” and to describewhat the hospice did well and what could havebeen improved. Caregivers were also asked aboutthe presence of 5 symptoms during the last 24hours of life (pain, dyspnea, nausea, constipa-tion, and confusion). Caregivers also wrote inother symptoms (e.g., anxiety) or functionaldeficits (e.g., incontinence) as “other.” If anysymptoms were present, caregivers were askedto rate how well hospice was able to treat themon a 5-point scale (from “not at all” to “ex-tremely well”). Caregivers were also asked toprovide demographic data about the patientand about themselves and to record the dateon which they completed the survey. Finally,caregivers were asked to rate the distress theyexperienced in completing the survey on a5-point scale (from “not distressing at all” to“extremely distressing”).

A sample size of 100 (50 per group) wouldprovide 0.90 power to detect a difference indistress between the 2- and 6-week groups of0.6 on a 5-point scale (assuming a standard de-viation of 0.9 from pilot studies; 0.66 of onestandard deviation). This level of power wasused, rather than the traditional 0.80, in orderto ensure adequate power for the rank sum testfor ordinal data, which is less efficient. Assum-ing a response rate of 50%, we estimated thatat least 100 surveys would be required for eachgroup.

Non-parametric tests (e.g., Spearman corre-lation coefficient, rank sum test) and the chisquare test were used for all bivariate analyses.An ordinal logistic regression model was usedto define the independent relationships of care-giver age and patient age on respondent distress.Stata statistical software (Stata for Windows;version 6.0; Stata Co., College Station, TX) wasused for all statistical analysis. This survey studywas approved by the Institutional Review Boardof the University of Pennsylvania.

Results

Of 207 caregivers identified, 107 were as-signed to receive a 2-week survey and 100 wereassigned to receive a 6-week survey. A total of112 surveys were returned. There were no dif-ferences in the characteristics of 2- and 6-weekrespondents (Table 1). The respondents in bothgroups were similar to the 207 patients andcaregivers identified in terms of patient age,sex, location of death, diagnosis, and patient-caregiver relationship. The characteristics of2-week and 6-week survey respondents and pa-tients are summarized in Table 1.

Response rates were identical in the 2 groups(2-week: 58/107, 54%; 6-week: 54/100, 54%).There was no difference in the elapsed timebetween the date on which survey was mailedand the date on which the respondent com-pleted it (2-week mean: 10 days vs. 6-week mean:13 days; rank sum test

P

�

0.239). Nor wasthere any difference in satisfaction with careduring the last 24 hours (2-week mean: 2.5 vs.6-week mean: 2.6; Rank sum

P

�

0.307). Therewere no differences in ratings of distress be-tween 2- and 6-week surveys (2-week mean:0.65 vs. 6-week mean: 0.80; rank sum test

P

�

0.658) (Table 2).

130 Casarett et al. Vol. 25 No. 2 February 2003

Distress was inversely associated with both pa-tient age (Spearman rho

�

�

0.347;

P

�

0.001)and caregiver age (Spearman rho

�

�

0.249;

P

�

0.009). In an ordinal logistic regressionequation, only patient age remained signifi-cantly associated with distress (

�

coefficient

��

0.036;

P

�

0.011). When all surveys weregrouped together, there was no relationshipbetween distress and satisfaction with care dur-ing the last 24 hours (Spearman rho

�

�

0.086;

P

�

0.396). Similarly, when these groups wereanalyzed separately, no relationship was foundbetween distress and satisfaction in either the

2-week (Spearman rho

�

0.023;

P

�

0.871) orthe 6-week groups (Spearman rho

�

�

0.207;

P

�

0.157). There was no relationship between dis-tress and reported symptoms, location ofdeath, or length of stay in hospice.

To provide a clinically useful measure of theassociation of age and distress, patient andcaregiver age were dichotomized as

�

65 and

�

65. When these dichotomous variables wereexamined, only patient age was associated withgreater distress (

�

65 mean: 1.18 vs.

�

65 mean:0.51; rank sum

P

�

0.001). In an ordinal logis-tic regression equation, only patient’s age re-

Table 1

Patient and Caregiver Characteristics

Patient Characteristics2 weeks

(

n

�

58)6 weeks

(

n

�

54)

Age, mean (SD) range 71 (15.0) 18–94 71 (14.9) 44–101Location at time of death

n

(%)

n

(%)Home 47 (81) 45 (83)Nursing Home 8 (14) 6 (11)Hospital 3 (5) 3 (6)

DiagnosisCancer 39 (67) 44 (81)Other 18 (31) 10 (19)Missing 1 (2) 0 (0)

Length of stay in hospice

n

(%)

n

(%)Less than 1 week 3 (5) 6 (11)About 1 week 13 (22) 6 (11)About 2 weeks 3 (5) 6 (11)About 3 weeks 8 (14) 5 (9)About 4 weeks 14 (24) 10 (19)More than 4 weeks 16 (28) 20 (37)Missing 1 (2) 1 (2)

Symptoms in last 24 hours

n

(%)

n

(%)Dyspnea 37 (64) 31 (59)Pain 24 (41) 28 (52)Confusion 24 (41) 13 (24)Nausea 10 (17) 4 (7)Constipation 7 (12) 4 (7)Emotional symptoms: agitation, anxiety 4 (7) 5 (9)Other: Bleeding, bladder/bowel incontinence 4 (7) 10 (19)

Number symptoms for each patient mean (SD) range 1.9 (1.4) 0–5 1.7 (1.3) 0–4

Caregiver Characteristics

Age, mean (SD) range 58 (13.6) 26–86 60 (14.5) 26–85Female,

n

(%) 44 (75) 43 (80)Relationship of patient

n

(%)

n

(%)Spouse 21 (36) 23 (43)Parent 22 (38) 18 (33)Sibling 6 (10) 3 (6)Child 3 (5) 3 (6)Other family member 1 (2) 2 (4)Friend 0 (0) 2 (9)Other 5 (9) 3 (6)

Ethnicity

n

(%)

n

(%)White 41 (71) 35 (65)African American 13 (22) 17 (31)Other 2 (3) 2 (4)Missing 2 (3) 0 (0)

Percents may not sum to 100 due to rounding.

Vol. 25 No. 2 February 2003 Timing Satisfaction Surveys 131

mained significant (

�

coefficient

�

�

1.52;

P

�

0.006). In ordinal logistic regression models,no significant interactions were found betweengroup and either patient or caregiver age. Amongcaregivers of patients

�

65 (e.g., those who re-ported the greatest distress), there was no differ-ence in distress between the groups (2-weekmean: 1.17 vs. 6-week mean: 1.2; rank sum test

P

�

0.94). Similarly, among caregivers who were

�

65, there was no difference in distress betweenthe two groups (2-week mean: 0.69 vs. 6-weekmean: 0.90; rank sum test

P

�

0.46).

Discussion

This study did not find that the timing ofsurveys relative to a patient’s death has any ef-fect on response rates or self-reported distress.These results are important because they shouldassuage ethical concerns about conducting thesesurveys too early.

4

More generally, these dataare important because they demonstrate thatafter-death surveys produce very low levels ofdistress among respondents, even two weeks af-ter a loved one’s death.

It is somewhat surprising that this study didnot find a difference in distress or response ratethat was anticipated. One explanation for thismight be that the early numbness of grief con-fers some protection. Respondents who are stillin the acute phase of grief may therefore experi-ence no more distress that they would if the hadresponded later. Another explanation is thatboth 2 and 6 weeks are early in the bereavementprocess. Therefore, it is possible that differencesmight have been found between surveys sent at

2 weeks and those sent at a much later time.Nevertheless, many surveys are sent at approxi-mately 2 months or later,

2,4,11,12

and this was areasonable comparison group for this study.

The absence of a difference in distress be-tween the two groups might also be explained inpart by the use of a simple self-report of distress.It is possible that this item, while intuitively ap-pealing, may not be sensitive enough to detectsmall differences in distress between the groups.Future studies may benefit from the inclusion ofvalidated instruments for the measurement ofrelated domains of anxiety or depressed mood.It is also possible that characteristics of this pa-tient population tended to reduce the distresscaused by these sorts of questions. Specifically,because most or all of these deaths were ex-pected, and because the care patients receivedwas quite good, it is possible that questions thatwould be distressing in another setting were notfor these family members. This possibility alsodeserves further research.

Finally, it is possible that the ceiling effect ofsatisfaction measurements that was observedhere ameliorated the distress that family re-spondents experienced. That is, many peopleare satisfied with care even though they per-ceive elements of care to be problematic.

14–17

As a result, people who are inappropriately sat-isfied may experience less distress when theydescribe that care. Although this may contrib-ute to the low levels of distress reported here, itis important to note that there was no relation-ship between distress and satisfaction. Nor wouldthis effect explain the lack of observed differ-ences in distress between the 2- and 6-week

Table 2

Response Rate, Satisfaction, and Distress

2 weeks (

n

�

107) 6 weeks (

n

�

100)

Response rate,

n

(%) 58 (54) 54 (54)Satisfaction, mean (SD) range 2.46 (0.82) 0–3 2.56 (0.78) 0–3

n

(%)

n

(%)Very satisfied 31 (53) 36 (67)Satisfied 17 (29) 11 (20)Dissatisfied 1 (2) 3 (6)Very dissatisfied 3 (5) 2 (4)Missing 6 (10) 2 (4)

Distress, mean (SD) range 0.65 (0.85) 0–3 0.80 (1.1) 0–4

n

(%)

n

(%)Not at all 32 (55) 27 (50)A little 15 (26) 12 (22)Somewhat 8 (14) 7 (13)Very 2 (3) 2 (4)Extremely 0 (0) 2 (4)Missing 1 (2) 4 (7)

132 Casarett et al. Vol. 25 No. 2 February 2003

groups. Nevertheless, this possibility deservesfurther investigation in future research.

It is interesting that the caregivers of youngerpatients experienced greater distress in complet-ing these surveys. It is possible that these deathswere more emotionally difficult for these care-givers, and therefore they may have found itmore distressing to complete these surveys. It isalso possible that these deaths were more likelyto be unexpected. Regardless of the reason, evenamong caregivers of younger patients, respon-dents experienced very low levels of distress,and earlier surveys did not increase distress.

These data provide preliminary evidence thatsurveys can be conducted safely with bereavedfamily members, even shortly after the patient’sdeath in hospice. These findings should reduceinvestigators’ and IRBs’ concerns about thesesurveys and should pave the way for future stud-ies to define how investigators and institutionscan collect the most accurate data possible,while minimizing distress and maximizing re-sponse rates. Such data are critical to ongoingefforts to improve end-of-life care, and rigorousmethods to collect those data will be essential.

Acknowledgments

Dr. Casarett is supported by a Health Ser-vices Research Career Development Awardfrom the Department of Veterans Affairs andby a Paul Beeson Physician Faculty ScholarsAward in Aging Research.

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