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

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1 128 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: 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-death surveys to assess family members satisfaction with end-of-life care. 1 3 These surveys have asked family members to describe a patient s last weeks, their pain and symptom management, and their involvement in decision-making. In general, family members recollections offer a rich source of insights about end-of-life care, and suggest promising avenues for quality improvement efforts. However, despite their importance to research and clinical care, it is not known when these surveys should be administered. On one Address reprint requests to: David J. Casarett, MD, MA, Institute on Aging, 3615 Chestnut Street, Philadelphia, PA 19104, USA. Accepted for publication: April 10, hand, there is reason to believe that earlier surveys provide more accurate data about end-oflife care 4 and care in other settings. 5 8 This advantage suggests that these surveys should be conducted as soon as possible after death. On the other hand, the grieving process often begins with a period of numbness or denial. 9,10 Therefore, it is possible that family members may not be ready to think about the stressful events of a patient s death if a survey is conducted too soon. If this is true, surveys that are administered soon after a patient s death might have to overcome lower response rates and possible selection bias. In addition, family members who do complete a survey may experience more distress with earlier surveys. 9 Indeed, most post-death surveys are conducted at least 2 months after death. 2,4,11,12 This concern may be particularly relevant for Institutional Review Boards (IRBs) that review satisfaction surveys for research U.S. Cancer Pain Relief Committee /03/$ see front matter Published by Elsevier. All rights reserved. PII S (02)00636-X

2 Vol. 25 No. 2 February 2003 Timing Satisfaction Surveys 129 In light of the advantages of improved accuracy with earlier data collection, researchers and institutions may wish to consider earlier surveys. But it is not known whether earlier surveys would produce lower response rates or greater distress among respondents. Therefore, this randomized controlled trial was designed to answer these questions. Methods This study was conducted in cooperation with the hospice affiliated with the University of Pennsylvania. This hospice has a daily census of approximately 200 patients in inpatient settings, at home, and in nursing homes. It has a median length of stay of 24 days, which is typical of other hospices nationwide. 13 All patients who were receiving hospice services at the time of death were eligible for inclusion in this survey. Over a 3-month period, these patients primary caregivers were identified prospectively in the hospice s database. Each was randomly assigned to receive a survey at 2 weeks or 6 weeks after the patient s death. All caregivers received a cover letter, a selfaddressed stamped envelope, and a 3-page survey. Surveys were anonymous, but were coded to identify the date on which the surveys were sent out and whether they were sent at 2 or 6 weeks after the patient s death. Surveys asked caregivers to rate their overall satisfaction with the care that the patient received during the last 24 hours of life on a 0 3 scale, from very dissatisfied to very satisfied, and to describe what the hospice did well and what could have been improved. Caregivers were also asked about the presence of 5 symptoms during the last 24 hours of life (pain, dyspnea, nausea, constipation, and confusion). Caregivers also wrote in other symptoms (e.g., anxiety) or functional deficits (e.g., incontinence) as other. If any symptoms were present, caregivers were asked to rate how well hospice was able to treat them on a 5-point scale (from not at all to extremely well ). Caregivers were also asked to provide demographic data about the patient and about themselves and to record the date on which they completed the survey. Finally, caregivers were asked to rate the distress they experienced in completing the survey on a 5-point scale (from not distressing at all to extremely distressing ). A sample size of 100 (50 per group) would provide 0.90 power to detect a difference in distress between the 2- and 6-week groups of 0.6 on a 5-point scale (assuming a standard deviation of 0.9 from pilot studies; 0.66 of one standard deviation). This level of power was used, rather than the traditional 0.80, in order to ensure adequate power for the rank sum test for ordinal data, which is less efficient. Assuming a response rate of 50%, we estimated that at least 100 surveys would be required for each group. Non-parametric tests (e.g., Spearman correlation coefficient, rank sum test) and the chi square test were used for all bivariate analyses. An ordinal logistic regression model was used to define the independent relationships of caregiver age and patient age on respondent distress. Stata statistical software (Stata for Windows; version 6.0; Stata Co., College Station, TX) was used for all statistical analysis. This survey study was approved by the Institutional Review Board of the University of Pennsylvania. Results Of 207 caregivers identified, 107 were assigned to receive a 2-week survey and 100 were assigned to receive a 6-week survey. A total of 112 surveys were returned. There were no differences in the characteristics of 2- and 6-week respondents (Table 1). The respondents in both groups were similar to the 207 patients and caregivers identified in terms of patient age, sex, location of death, diagnosis, and patientcaregiver relationship. The characteristics of 2-week and 6-week survey respondents and patients 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 time between the date on which survey was mailed and the date on which the respondent completed it (2-week mean: 10 days vs. 6-week mean: 13 days; rank sum test P 0.239). Nor was there any difference in satisfaction with care during the last 24 hours (2-week mean: 2.5 vs. 6-week mean: 2.6; Rank sum P 0.307). There were no differences in ratings of distress between 2- and 6-week surveys (2-week mean: 0.65 vs. 6-week mean: 0.80; rank sum test P 0.658) (Table 2).

3 130 Casarett et al. Vol. 25 No. 2 February 2003 Patient Characteristics Table 1 Patient and Caregiver Characteristics 2 weeks (n 58) 6 weeks (n 54) Age, mean (SD) range 71 (15.0) (14.9) Location at time of death n (%) n (%) Home 47 (81) 45 (83) Nursing Home 8 (14) 6 (11) Hospital 3 (5) 3 (6) Diagnosis Cancer 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) (1.3) 0 4 Caregiver Characteristics Age, mean (SD) range 58 (13.6) (14.5) Female, 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. Distress was inversely associated with both patient age (Spearman rho 0.347; P 0.001) and caregiver age (Spearman rho 0.249; P 0.009). In an ordinal logistic regression equation, only patient age remained significantly associated with distress ( coefficient 0.036; P 0.011). When all surveys were grouped together, there was no relationship between distress and satisfaction with care during the last 24 hours (Spearman rho 0.086; P 0.396). Similarly, when these groups were analyzed separately, no relationship was found between distress and satisfaction in either the 2-week (Spearman rho 0.023; P 0.871) or the 6-week groups (Spearman rho 0.207; P 0.157). There was no relationship between distress and reported symptoms, location of death, or length of stay in hospice. To provide a clinically useful measure of the association of age and distress, patient and caregiver age were dichotomized as 65 and 65. When these dichotomous variables were examined, only patient age was associated with greater distress ( 65 mean: 1.18 vs. 65 mean: 0.51; rank sum P 0.001). In an ordinal logistic regression equation, only patient s age re-

4 Vol. 25 No. 2 February 2003 Timing Satisfaction Surveys 131 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) (0.78) 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) (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) mained significant ( coefficient 1.52; P 0.006). In ordinal logistic regression models, no significant interactions were found between group and either patient or caregiver age. Among caregivers of patients 65 (e.g., those who reported the greatest distress), there was no difference in distress between the groups (2-week mean: 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 between the two groups (2-week mean: 0.69 vs. 6-week mean: 0.90; rank sum test P 0.46). Discussion This study did not find that the timing of surveys relative to a patient s death has any effect on response rates or self-reported distress. These results are important because they should assuage ethical concerns about conducting these surveys too early. 4 More generally, these data are important because they demonstrate that after-death surveys produce very low levels of distress among respondents, even two weeks after a loved one s death. It is somewhat surprising that this study did not find a difference in distress or response rate that was anticipated. One explanation for this might be that the early numbness of grief confers some protection. Respondents who are still in the acute phase of grief may therefore experience no more distress that they would if the had responded later. Another explanation is that both 2 and 6 weeks are early in the bereavement process. Therefore, it is possible that differences might have been found between surveys sent at 2 weeks and those sent at a much later time. Nevertheless, many surveys are sent at approximately 2 months or later, 2,4,11,12 and this was a reasonable comparison group for this study. The absence of a difference in distress between the two groups might also be explained in part by the use of a simple self-report of distress. It is possible that this item, while intuitively appealing, may not be sensitive enough to detect small differences in distress between the groups. Future studies may benefit from the inclusion of validated instruments for the measurement of related domains of anxiety or depressed mood. It is also possible that characteristics of this patient population tended to reduce the distress caused by these sorts of questions. Specifically, because most or all of these deaths were expected, and because the care patients received was quite good, it is possible that questions that would be distressing in another setting were not for these family members. This possibility also deserves further research. Finally, it is possible that the ceiling effect of satisfaction measurements that was observed here ameliorated the distress that family respondents experienced. That is, many people are satisfied with care even though they perceive elements of care to be problematic As a result, people who are inappropriately satisfied may experience less distress when they describe that care. Although this may contribute to the low levels of distress reported here, it is important to note that there was no relationship between distress and satisfaction. Nor would this effect explain the lack of observed differences in distress between the 2- and 6-week

5 132 Casarett et al. Vol. 25 No. 2 February 2003 groups. Nevertheless, this possibility deserves further investigation in future research. It is interesting that the caregivers of younger patients experienced greater distress in completing these surveys. It is possible that these deaths were more emotionally difficult for these caregivers, and therefore they may have found it more distressing to complete these surveys. It is also possible that these deaths were more likely to be unexpected. Regardless of the reason, even among caregivers of younger patients, respondents experienced very low levels of distress, and earlier surveys did not increase distress. These data provide preliminary evidence that surveys can be conducted safely with bereaved family members, even shortly after the patient s death in hospice. These findings should reduce investigators and IRBs concerns about these surveys and should pave the way for future studies to define how investigators and institutions can collect the most accurate data possible, while minimizing distress and maximizing response rates. Such data are critical to ongoing efforts to improve end-of-life care, and rigorous methods to collect those data will be essential. Acknowledgments Dr. Casarett is supported by a Health Services Research Career Development Award from the Department of Veterans Affairs and by a Paul Beeson Physician Faculty Scholars Award in Aging Research. References 1. Desbiens NA, Wu AW, Broste SK, et al. Pain and satisfaction with pain control in seriously ill hospitalized adults: findings from the SUPPORT research investigations. For the SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Crit Care Med 1996;24: Nolen-Hoeksema S, Larson J, Bishop M. Predictors of family members satisfaction with hospice. Hospice J 2000;15: Teno JM, Claridge B, Casey V, et al. Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage 2001;22: Addington-Hall J, McPherson C. After-death interviews with surrogates/bereaved family members: some issues of validity. J Pain Symptom Manage 2001;22: Pless CE, Pless IB. How well they remember: the accuracy of parent reports. Arch Pediatr Adolesc Med 1995;149: Boerma JT, Black RE, Sommerfelt AE, et al. Accuracy and completeness of mothers recall of diarrhea occurrence in pre-school children in demographic and health surveys. Int J Epidemiol 1991;20: Fendrich M, Johnson T, Wislar J, et al. Accuracy of parent mental health service reporting: results from a reverse record-check study. J Am Acad Child Adolescent Psychiatry 1999;38: Ebbesen EB, Rienick CB. Retention interval and eyewitness memory for events and personal identifying attributes. J Applied Psychol 1998;83: Casarett D, Kutner J, Abrahm J. Life after death: a practical approach to grief and bereavement. American College of Physicians Consensus Paper. Ann Intern Med 2001;138: Rando T. Treatment of complicated mourning. Champaign, IL: Research Press, Addington-Hall J, MacDonald L, Anderson H, et al. Dying from cancer: the views of bereaved family and friends about the experiences of terminally ill patients. Palliat Med 1991;5: Rogers A, Karlsen S, Addington-Hall J. All the services were excellent. It is when the human element comes in that things go wrong dissatisfaction with hospital care in the last year of life. J Adv Nurs 2000;31: National Hospice and Palliative Care Organization. Facts and figures on hospice care in America. July Available at Accessed: August 3, Baker R, Wu AW, Teno JM, et al. Family satisfaction with end-of-life care in seriously ill hospitalized adults. J Am Geriatr Soc 2000;48:S McCracken LM, Klock PA, Mingay DJ, et al. Assessment of satisfaction with treatment for chronic pain. J Pain Symptom Manage 1997;14: Savitz L. Measuring consumer satisfaction. In: McLaughlin CP, Kaluzny AD, eds. Continuous quality improvement in health care, 3rd ed. Gaithersburg, MD: Aspen, 1999: Steele L, Mills B, Long M, Hagopian G. Patient and caregiver satisfaction with end-of-life care: does high satisfaction mean high quality of care? Am J Hospice Palliat Care 2002;19:19 27.