Correspondence Between Patients Preferences and Surrogates Understandings for Dying and Death

Transcription

1 498 Journal of Pain and Symptom Management Vol. 30 No. 6 December 2005 Original Article Correspondence Between Patients Preferences and Surrogates Understandings for Dying and Death Ruth A. Engelberg, PhD, Donald L. Patrick, PhD, MSPH, and J. Randall Curtis, MD, MPH Departments of Medicine (R.A.E., J.R.C.), Health Services (D.L.P., J.R.C.), Epidemiology (D.L.P.) and Sociology (D.L.P.), University of Washington, Seattle, Washington, USA Abstract We examined the agreement between hospice patients preferences for desired experiences during the last week of life and their surrogates understandings of those preferences (n ¼ 92 pairs). Analyses included percent agreement, intraclass correlation coefficients, and Bland- Altman plots. Demographic characteristics and communication measures associated with better agreement were identified using t-tests and analysis of variance. The median number of items on which patients and family members agreed was 14 of 30 (interquartile range, IQR 10, 16). Preferences with good agreement included both observable and nonobservable experiences. Patients who reported having had conversations about treatment preferences and who reported that their surrogates knew their preferences reported higher agreement. Surrogates display a better understanding of what is important to patients at the end of life if they have had discussions about patient preferences. These discussions may enable surrogates and clinicians to more accurately follow patient preferences. J Pain Symptom Manage 2005;30: Ó 2005 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Dying, family, proxy, agreement, hospice, communication Introduction There is a growing interest in measuring and improving the quality of dying and death for patients with terminal or life-limiting illnesses. As defined by the Institute of Medicine, a good quality death is a death free from avoidable Address reprint requests to: Ruth A. Engelberg, PhD, Division of Pulmonary and Critical Care Medicine, University of Washington Box , 325 Ninth Avenue, Seattle, WA 98104, USA. Accepted for publication: June 3, Ó 2005 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. distress and suffering for patients and their families, in accordance with the patients and families wishes, and reasonably consistent with clinical, cultural, and ethical standards. 1 To provide an operational definition to facilitate measurement for use in quality improvement, we define the quality of dying and death as the degree to which a person s preferences for dying and the moment of death agree with observations of how the person actually died as reported by others. We recognize that the level of agreement should be modified by unavoidable circumstances surrounding death that may have prevented the realization of patient prior preferences /05/$--see front matter doi: /j.jpainsymman

2 Vol. 30 No. 6 December 2005 Patient-Family Agreement on End-of-Life Choices 499 This operational definition requires reliable assessments of patients preferences concerning how they wish to live life at the very end, including the moment of death. In addition, it is important to evaluate the knowledge and perceptions of loved ones and surrogates concerning patient preferences. These perceptions are important to consider as follows: (1) families understanding of patients preferences has been associated with the delivery of high-quality end-of-life care to patients 3--5 ; (2) family members are often relied upon to provide guidance to clinicians when patients are too ill to speak for themselves, therefore their understandings of patients preferences play an important part in insuring that the patient has the kind of death he or she desires 6--8 ; and (3) because it is not possible to determine a patient s self-assessment of dying, family s understandings of patient preferences are important to reliably evaluate families assessment of the quality of dying and death. 2,9 Thus, agreement between patients and families regarding preferences about dying and death is important to assess. Agreement between patients and families has been examined previously, but primarily in the area of treatment preferences Findings have been inconsistent, with some studies suggesting that family members do no better than chance in predicting treatment decisions, ,18 while others suggest that families are able to predict patients preferences but do so more accurately under more extreme circumstances. 10,11,16 In addition, conflicting results have appeared from prior studies examining agreement between patients and family members ratings of quality of life at the end of life. In their review of this literature, McPherson and Addington-Hall 20 suggest that, while proxies are valid reporters for some aspects of the patient s experience at the end of life, their reports are prone to bias, especially in domains concerning a patient s subjective experiences. Steinhauser et al. 21,22 have examined attributes of a good death using a crosssectional sample of four types of respondents: patients, bereaved family members, physicians, and other clinicians. Although they found a number of attributes that were defined as important for a good death by all respondents, they examined similarities across groups, rather than concordance between paired respondents. Despite this prior literature on patient-family agreement for treatment preferences and for quality of life, we have found no studies that have examined the concordance between patients and family members perceptions of the experiences that will be important to patients facing their dying and death. In this study, we explore patients preferences for experiences that they perceive as part of a good death and their loved one s (henceforth called family member ) ability to predict these preferences. It is important to note that these experiences include a broad range of activities, some of which are processes facilitating care (e.g., discussing end-of-life preferences with physician) and others are outcomes of care (e.g., having pain controlled, saying goodbye to loved ones, spending time with family, finding meaning and purpose). Hospice is an appropriate setting for this study because patients in hospice are likely to have considered their own preferences about dying and death. We address the following questions: (1) how closely do patients and family members agree in their ratings of preferences about dying and death? (2) which characteristics of patients are associated with better agreement between patients and family members? and (3) are family members better able to predict patients views of functional status and symptom burden than preferences regarding interpersonal and transcendent aspects of dying? Methods Procedure Participants were recruited from two hospice programs, one providing outpatient services and the other providing both inpatient and outpatient programs. Each hospice serves approximately patients at any given time. The research interviewer visited each hospice weekly and, with the help of the hospice manager and from nursing intake records, identified potentially eligible patients. Patients were considered eligible if they (1) were English-speaking; (2) were at least 18 years of age; (3) had no diagnosis of dementia or significant mental impairment (i.e., delirium) that would prevent them from being able to complete a minute interview with study personnel; (4) had an estimated survival

3 500 Engelberg et al. Vol. 30 No. 6 December 2005 prognosis of greater than 2 weeks (to minimize interference with hospice worker activities and allow study staff time to schedule and complete the interviews prior to death); and (5) had a family member or friend who was participating actively in their care and would agree to be in the study. Participants were approached by a hospice team member (e.g., nurse, case manager, social worker) to ask if they would be interested in speaking to study personnel and were provided with a flyer. If they agreed to hear more about the study after reading the flyer, their names and phone numbers were released to the study interviewer, and they were contacted by phone to ask if they had questions and to set up an interview. After providing written consent, patients and family members were interviewed in their homes or at a place of their choosing. Human Subjects Approval was obtained from the University of Washington s institutional review board. Participants We screened 5781 hospice enrollees with admissions from October, 1998 to July, The majority of screened subjects were ineligible (78.9%, 4562/5781) for a variety of reasons including severity of illness (35.5%, 1621/4562), estimated survival prognosis of less than 2 weeks (20.6%, 941/4562), or delirium, dementia, or fatigue (33.6%, 1531/4562). Other reasons for ineligibility included age <18 years (1%, 46/4562), non-english speaking (1.6%, 72/4562), no family member or loved one (1.3%, 61/4562), and psychosocial difficulties (5.5%, 250/4562). For some patients, we were unable to collect any information that would allow us to assess their eligibility (15.7%, 910/5781). Of the 309 eligible individuals, we recruited a sample of 96 patients and their family members or friends (31.1%, 96/309). Of those eligible individuals who did not enroll, 189 (61.2%, 189/309) patients or family members refused to participate. Refusal reasons were generally not provided by respondents but included declining health, family member s reluctance to participate in research, and not having the energy to complete a survey. Other reasons for not being included were death between enrollment and interview (n ¼ 19) and withdrawal from the study during the initial interview due to fatigue (n ¼ 5). Sample characteristics are presented in Table 1. Interview Instruments The Preferences About Dying and Death. The Preferences About Dying and Death (PADD) development and content validation have been described previously. 2 In brief, the items were generated from published studies and measures including the National Hospice Study, 8,23 the SUPPORT Study, 24 the Toolkit of Instruments to Measure End of Life Care, 25,26 Missoula-VITAS Quality of Life Index, 27 and the McGill Quality of Life Questionnaire, 28 as well Table 1 Demographics for Patients and Significant Others Patients (n ¼ 92) Family Members (n ¼ 92) Age Mean (SD) 71.2 (13.42) 57.4 (15.1) Gender % Female (n) 58.7 (54) 65.2 (60) Race/ethnicity % White (n) 94.6 (87) 93.5 (86) Marital status % Married (n) 48.4 (44) -- Education % #11th grade (n) 9.8 (9) 4.4 (4) % 12th grade (n) 23.9 (22) 22.8 (21) % Some college (n) 41.3 (38) 41.3 (38) % College (n) 17.4 (16) 22.8 (21) % Postcollege (n) 7.6 (7) 8.7 (8) Income % <$12,000 (n) 22.8 (21) -- % >$12,000, <$36,000 (n) 46.7 (43) -- % >$36,000 (n) 22.8 (21) -- % Missing 7.6 (7) -- Loved one s relationship to patient % Spouse (n) (40) % Adult child (n) (35) % Other family member (n) (8) % Otherdfriend, (9) provider (n) Distance from patient % Living in same home (n ¼ 53) # Minutes from (59.7) patient (n ¼ 39) (SD) Diagnoses % Cancer (n) 72.6 (69) % Cardiovascular/heart 7.4 (7) disease (n) % COPD (n) 7.4 (7) % Neurologic (n) 3.2 (3) % Other (n) 9.8 (9)

4 Vol. 30 No. 6 December 2005 Patient-Family Agreement on End-of-Life Choices 501 as qualitative interviews with patients with AIDS, cancer, or chronic obstructive pulmonary disease (COPD) The patients predeath version assesses patients preferences for experiences that will be important to them over the last week of life. The family members predeath version assesses their perceptions of patients preferences. The PADD is comprised of 31 items that are completed by patients and 30 items that are completed by family members. (The one item asked of patients but not family members concerns who the patient would like to have present at the time of his/her death.) Questions represent six areas: symptoms and personal care, preparation for end of life, moment of death, family and loved ones, treatment preferences, and whole person concerns. For patients, each question begins with, Over the last seven days of your life, how important will it be to you to.. For family members, each question begins with, Imagine the last seven days of (patient s name) life. How important to (patient s name) will it be to.. Some examples of questions are as follows: having pain under control, spending time with friends and family, keeping dignity and self-respect, and finding meaning and purpose. Patients and family members rate experiences from 0 to 10, with 0 indicating the least important and 10 indicating the most important. These same items are also used in the Quality of Dying and Death (QODD) instrument used with family members after death to assess the quality of the patients experience. 34 The Modified Memorial Symptom Assessment Scale. To compare patients and family members assessments of patient symptoms, we used a modified form of the Modified Memorial Symptom Assessment Scale (MSAS) using 14 items. The MSAS is a validated, patient self-report measure of symptom severity, frequency, and distress. 35,36 It is completed in about 5 minutes and yields an overall symptom score ranging from 0 to 4. We have used this modified version with caregivers in after-death interviews and found high symptom scores to be significantly associated with poorer quality of death ratings. 34 The Short Profile of Illness Impact. To examine the association between patients and family members assessment of patient functional status, we used the Short Profile of Illness Impact (SPII), a 22-item questionnaire based on the- SIP. 37 Because of our concerns about respondent burden using all 136 SIP items, we developed a short version comprised of representative items from each of the 12 SIP domains. Items include activities of daily living, cognitive functioning, social functioning, and emotional adjustment. The SPII is administered in about 15 minute and allows the respondent to indicate if he/she was able to do the task and how difficult the task was, using a scale ranging from 0 meaning no difficulty at all to 6 meaning a very great deal of difficulty. For applicable items, respondents are also able to indicate if they did not do the task because of their illness or disability. Patients who did not do the task because of their illness or disability are assigned a 7 meaning didn t do at all. Item scores were recalibrated to range from 0 to 100, and a mean total score was calculated for all respondents with at least 17 of the 22 items answered. The SPII has been used previously in an after-death study of the quality of dying and death among decedents in Missoula County with family member respondents. The total score displayed good internal consistency (Cronbach s alpha ¼ 0.94) and good convergent validity, correlating significantly with associated constructs (being unable to manage decisions in last month of life, r ¼ 0.37, P < 0.001; number and intensity of symptoms, r ¼ 0.48, P < 0.001; the QODD total score, r ¼ÿ0.343, P < 0.001). Communication Items. Questions about communication between patients and family members were included. These questions were developed from focus groups of patients with AIDS, cancer, or COPD. 29,32,38 They include questions about the number of conversations about treatment preferences, the level of knowledge of treatment preferences as perceived by patients and family members, and the quality of these conversations. Demographic Items. The data regarding patients age, gender, race/ethnicity, marital status, education, and income were collected during the interviews as were family members age, gender, race/ethnicity, education, relationship to patient, and distance from the

5 502 Engelberg et al. Vol. 30 No. 6 December 2005 patient s home. Diagnostic information for patients was collected from hospice intake records. Statistical Methods We analyzed agreement using three statistical approaches: percent agreement, Bland- Altman plots, and intraclass correlations. Using the patient as criterion, we examined the percent of agreement between the patient and the family member on each preference item, with agreement defined as the same rating given by both the patient and the family member or a rating within 1 point. We chose a 1-point difference on an 11-point scale based both on standards used previously in the patient-proxy agreement literature 39 and because this represented in our view a stringent measure of agreement with only a 10% difference in matched ratings. Further, because of a ceiling effect on a number of the items, the within 1 point criterion was likely to set a conservative standard for agreement. We arbitrarily defined excellent agreement as $80%, good agreement as $60% and <80%, moderate agreement as $40% and <60%, and poor agreement as <40%. 40 As a summary measure, we described the total number of items for which patients and family members agreed, reporting the median and mean. We also tested for statistically significant systematic differences between patient and family ratings using the Wilcoxon matched pairs signed ranks test, a nonparametric test appropriate for nonnormal distributions (P # 0.05). Lastly, we collected from each respondent a list of five items (from the list of 30 items) that were evaluated as the most important for having a good death. We reported the percent of matches between the patient and the family member for these five items. For comparability, we report results based on Bland-Altman plots. 41 For the purpose of the Bland-Altman analyses, we anticipated that limits of agreement of 8 points or less would provide adequate to good comparability, with the expectation that 95% of family member scores would be no more than 4 points higher or 4 points lower than those of the patient. Last, we examined the strength of the association between respondents using interclass correlation coefficients (ICC) derived from a oneway random effects model. 42 We report both the value (excellent, ICC $ 0.80; moderate to good, ICC > 0.40; poor, ICC # 0.40) 39 and statistical significance (P # 0.05) of the correlations. To identify predictors of patient-family member agreement, we used the total number of agreements as the outcome variable. Predictors included patient-family member living arrangements, number and quality of end-of-life discussions, and patient-family member understandings of end-of-life preferences. We also examined the following patient demographics: age, gender, marital status, education, income, and family member s relationship with patients. For predictor variables with binary values, we used t-tests; for variables with categorical values, we used an analysis of variance. Significance was set at P # Lastly, we examined the association between patient and family member pairs when evaluating more behavioral and observable functions like functional status and, to a lesser degree, symptom burden. We report intraclass correlation coefficients between patients and family members on the PADD, MSAS, and SPII, using patients and family members total scores. We hypothesized that we would find stronger correlations on the SPII and the MSAS than on the PADD items. Results Study Sample Ninety-two of the 96 patients (96%) and their family members completed questionnaires. As shown in Table 1, almost all of the patient respondents were white, a little over a half were female, and the mean age was 71 years. Two-thirds of the patients had some education beyond high school, and almost a quarter of the respondents (23%) had annual income less than $12,000. Almost three quarters of the patients had a diagnosis of cancer. Like the patients, family members were almost all white, nearly two-thirds were female, and more than two-thirds had some education beyond high school. More than three quarters of family members were either spouses or adult children. Respondents (n ¼ 96) and refusals (n ¼ 189) did not differ significantly by gender or diagnosis, but did differ significantly by age

6 Vol. 30 No. 6 December 2005 Patient-Family Agreement on End-of-Life Choices 503 (P < 0.05), with refusals older than respondents (75 years old vs. 71 years old). Agreement Between Patients and Family Members on End-of-Life Preferences (Table 2) Percent of agreement between patients and family members on preferences about dying and death ranged from 27.3% for feeding oneself to 84.4% for spending time with spouse. Good agreement ($60%) was achieved on eight of the 30 items (27%). These items were having pain under control, breathing comfortably, dying in the state (condition) of one s choice, spending time with one s spouse, partner, spending time with children, avoiding ventilator/dialysis to prolong life, being touched and hugged, and keeping dignity and self-respect. A number of items (n ¼ 6) had agreements less than 60% but greater than 55%; these included having health care costs taken care of, having funeral arrangements in order, avoiding worry or strain on loved ones, being at peace with dying, being unafraid of dying, and dying in the place of one s choice. Together, 14 items of the 30 in the questionnaire (47%) showed agreement between patients and family members of 55% or greater. Seven items (23%) had poor agreement (% agreement <40%). They were feeding oneself, having energy to do things, having control, attending important events, clearing up bad feelings, spending time alone, and finding meaning and purpose. The median number of items for which patients and family members agreed on a preference rating (1 point) was 14 (out of 30), with an interquartile range from 10 to 16 (mean ¼ 13.0, SD ¼ 3.86). When patients and family members preference ratings differed systematically (P < 0.05), preferences were significantly overestimated by family members for two items, saying goodbye to loved ones and discussing end-of-life wishes with physician, and underestimated by family members for two items, avoiding worry or strain on loved ones and spending time alone. Matches between patients and family members for the five most important experiences at the end of life showed 6.5% (n ¼ 6) of pairs not matching at all, 26.1% (n ¼ 23) of pairs agreeing on one experience, 35.9%(n ¼ 32) of pairs agreeing on two experiences, 21.7%(n ¼ 18) of pairs agreeing on three experiences, and 4.3% (n ¼ 4) of pairs agreeing on four experiences. Five of the pairs did not provide choices for the five most important experiences, and none of the pairs agreed on all five experiences. The Bland-Altman analyses showed differences between patient and family ratings that ranged from a low of ÿ0.022 on spending time with spouse, partner to a high of ÿ1.583 on saying goodbye to loved ones. Limits of agreement ranged from a low of 4.69 on spending time with spouse, partner to a high of for feeding oneself. Four items met our criteria for good comparability (limits of agreement #8): dying in the state/condition of one s choice, spending time with spouse, partner, spending time with children, and keeping dignity, self-respect (Table 2). The ICC analyses showed that 15 of the 30 (50%) items were significantly correlated (P # 0.05) but only seven ICCs were $0.40, a moderate association. Those items were clearing up bad feelings, having religious advisor visits, having spiritual ceremony before death, dying in the state/condition of one s choice, spending time with children, spending time with pets, and having the means to end one s life. Association Between Agreement and Patients Characteristics (Table 3) The mean number of agreements between patients and family members on the preference items was significantly (P # 0.05) associated with the following communication variables: patient s assessment of whether the family member knew about his/her treatment preferences and the patient s recollection of having discussed his/her treatment preferences with the family member. Preference agreements did not vary significantly by the number of conversations or by whether the family member lived with the patient. The mean number of agreements between patients and family members did not vary significantly for the following patient characteristics: age, gender, education level, marital status, and relationship to family member. It did vary significantly by patient income (P ¼ 0.01). Patients reporting higher incomes had more agreements with family members than patients

7 504 Engelberg et al. Vol. 30 No. 6 December 2005 Table 2 Patient and Family Member Agreement (n ¼ 92 pairs) QODD Items and Domains n Patient Mean (SD) SO Mean (SD) # Agreed 1 point % ICC Patient-SO Rating (Difference) Limits of Agreement: Range Symptoms and personal care Pain under control (1.69) 9.26 (1.30) ÿ0.022 ÿ Breathe comfortably (1.75) 8.90 (1.45) ÿ Feed oneself (3.32) 6.32 (2.98) ÿ0.069 ÿ Control bladder, bowels (2.85) 7.88 (2.74) a Energy to do things (2.95) 6.40 (2.94) b Have control (2.84) 6.90 (2.55) ÿ0.014 ÿ Preparation for end of life Attend important events (3.58) 3.88 (3.21) b Health care costs (2.08) 8.26 (2.68) Funeral arrangements (1.97) 8.03 (2.86) a in order Say goodbye (3.27) 8.32 (2.25) a ÿ to loved ones Clear up bad feelings (3.13) 6.64 (3.32) b Avoid/worry about (1.74) 8.56 (1.89) a strain on loved ones Religious advisor visits (4.04) 5.75 (3.69) b Spiritual ceremony before death (4.32) 3.74 (3.95) b At peace with dying (1.96) 8.81 (1.84) ÿ Unafraid of dying (2.58) 8.50 (2.26) ÿ Moment of death Dying in place of one s choice (2.08) 9.07 (1.35) ÿ0.031 ÿ Dying in state of one s choice (2.21) 8.96 (1.73) b ÿ Dying with selected persons present Family Time with spouse, partner (0.96) 9.64 (0.83) ÿ Time with children (2.04) 8.85 (2.03) b Time with family, friends (3.02) 7.06 (2.45) Time with pets (3.04) 6.82 (3.19) b Time alone (3.09) 3.84 (2.81) Treatment preferences Discussed end-of-life (2.60) 9.02 (1.67) ÿ0.002 ÿ wishes with MD Ventilator/dialysis to prolong life (1.72) 9.28 (2.06) ÿ Means to end life (4.21) 3.98 (4.06) b Whole person concerns Laugh, smile (2.36) 7.68 (2.19) Touched, hugged (2.53) 8.77 (1.93) a ÿ Meaning, purpose in life (3.10) 7.38 (2.88) ÿ Keep dignity, self-respect (1.68) 9.10 (1.39) b ÿ SO ¼ significant other; FM ¼ family member. a P # b P # reporting lower incomes (14.8 vs mean agreements); this finding remained even after controlling for the presence of treatment discussions. Agreement on End-of-Life Preferences, Functional Status, and Symptom Burden Intraclass correlation coefficients were moderate to good for patients and family members scores on the SPII (ICC ¼ 0.65; P < 0.001, n ¼ 90) and the MSAS (ICC ¼ 0.49; P < 0.001, n ¼ 85). As hypothesized, the agreement on functional status, as assessed by the SPII, was greater than agreement on preferences for all but one of the 30 items concerning preferences about dying and death. Similarly, the agreement on symptom burden was greater than the agreement on 24 of the 30 items concerning preferences about dying and death.

8 Vol. 30 No. 6 December 2005 Patient-Family Agreement on End-of-Life Choices 505 Table 3 Association Between Patient/Family Agreements, Communication and Patient Characteristics Communication Characteristics Mean # Agreements (n) Does loved one know treatment preferences? Definitely or probably no 8.50 (2) Probably yes (10) Definitely yes (76) Have there been discussions on treatment preferences? Yes (79) No 9.43 (7) How many discussions have there been about treatment preferences? 1--5 discussions (44) discussions (17) $20 discussions (15) Patient s ratings of discussions 0--6: poor, fair (11) 7--9: good, very good (23) 10: excellent (44) Demographic Characteristics Discussion Our data suggest that family members are able to predict patient preferences accurately for about half of the experiences that patients have identified as important for them as they face the end of life. This finding is supported by both the percent agreement and P Age: patients # (37) > (55) Gender Male 12.9 (38) Female 13.1 (54) Marital status Married 12.7 (46) Not married 13.4 (45) Education #High school 13.5 (31) >High school 12.8 (61) Income 0.01 % <$12,000 (n) 11.0 (21) % >$12,000, <$36,000 (n) 13.3 (43) % >$36,000 (n) 14.8 (21) Family member s relationship to patient Spouse 13.0 (40) Other 13.1 (52) Family member s place of residence With patient 13.3 (39) Away from patient 12.9 (53) correlational analyses. Consistent with prior research on quality of life and quality of care, these include experiences that are observable and measurable. 6,20, For example, 55% or more of patients and family members rated similarly the importance of having pain under control, breathing comfortably, taking care of health care costs, having funeral arrangements in order, avoiding the use of a ventilator or dialysis to prolong life, dying in the place and dying in the condition of one s choice. These areas are those that lend themselves more easily to conversations, particularly avoidance of lifeprolonging treatments and practical arrangements. At the same time, and in contrast to prior findings, patients and family members agreed on preferences that entailed more abstract and internalized states such as keeping dignity and self-respect, avoiding worry and strain on loved ones, being at peace with dying, being unafraid of dying, and being hugged and touched. This discrepancy with prior findings might be understood, in part, within the context of this sample and study. These patients were all receiving care in hospice settings and had therefore been informed, and likely accepted, their illnesses as terminal. This recognition may encourage the consideration and discussion of introspective concerns and transcendent issues that comprise some of the difficult challenges associated with end of life. 47 Another explanation is also suggested by the importance ratings assigned to these concordant items. All of the items on which percent of agreement was greater than 55% had mean scores greater than 8 and, therefore, were considered very important as part of a good death. It may be that these items represent a social or cultural consensus about what is a good death. Agreement on these items may stem in part from shared views in a community, rather than solely from individually discussed patient-family understandings. The correlational analyses similarly supported the finding that patients and family members ratings were significantly associated with half of the preferences. Interestingly, the preferences that matched using the percent of agreement analysis were not always the preferences that were significantly associated using the correlational approach. Only seven of the 15 significant correlations also demonstrated high agreement ($55%), using our standard

9 506 Engelberg et al. Vol. 30 No. 6 December 2005 of an exact matched rating or a rating within 1 point, and only one of the items (e.g., dying in the state/condition of one s choice ) was moderately associated (ICC $ 0.40). This finding may be explained by the restriction in range of values due to the skew in preference scores (ceiling effect); the percent of agreement is high but correlations are reduced by the narrow range of scores. 48 Skewed data with large ceiling effects can be associated with low correlation but high percent agreement. 49 Like the items with good percent agreement, the seven items that were moderately associated, as well as statistically significant, included both those that were concrete and observable as well as those that were abstract or internalized. Among the top five experiences that patients defined as most important to them at the end-of-life, 60% of family members correctly identified two or more preferences. Put within the context of 30 preferences, an agreement on two, three, or four of the most important items may be seen as moderate concordance for preferences rated as the most important ; increasing the concordance on these items may be an important target for interventions designed to enhance the quality of dying. Our examination of associations between patient characteristics and preference agreements supports most prior research. We did not find age, gender, marital status, family member s relationship to the patient, or family member s place of residence to be significantly associated with agreement. 11,20,44,50,51 We did find that, while education was not a significant predictor, income was. Patients with the highest incomes had significantly more agreements than patients with the lowest incomes (mean agreements, 14.8 vs. 11.0). Agreement between patient and proxy with higher income levels has been reported elsewhere, 44 as has the more frequent use of advance directives among patients with higher incomes. 52 This finding might be associated with improved access to resources around end-of-life issues that patients and families with higher income may enjoy; this improved access may result in enhanced awareness of end-of-life choices and opportunities, with accompanying communication and conversation. We did not find that the association between higher agreements and income was removed after controlling for the presence or absence of treatment conversations with family members. Our data are only suggestive, however, and additional investigation is needed to understand this finding. In contrast to the lack of association between preferences and demographics, we found that patient-family member communication enhanced understandings about preferences. Patients reporting that they had conversations with their family member about treatment preferences and that they believed that their family knew their treatment preferences were significantly associated with more agreements. Interestingly, neither the number of discussions nor the ratings of these discussions were associated with agreement. It would seem, then, that having discussions and making sure that the patient feels that the family member understood his/her preferences is an important strategy for enhancing agreement. Although the direction of causality is not clear from our analyses, it does seem that having conversations and making sure the patient and family member share similar perceptions of the patient s preferences is an approach that may ensure that family members are able to appropriately convey their loved one s preferences at the end of life. Although our data demonstrate reasonable concordance on about half of the preferences, there are many items on which patients and family members do not agree. The Bland- Altman analyses suggest that, while absolute differences between ratings are small, the limits of agreement based on the standard deviations of the differences are wide, suggesting weaker comparability. This low comparability is seen with both observable, measurable items and with internal, abstract items; concordance on preferences concerning a good death does not seem to differentiate along this continuum. Items on which families systematically over- or underestimated patient s wishes provide some insights. Families overestimated the importance of clearing up bad feelings and discussing end-of-life wishes with the physician. These items may be seen as so socially desirable and culturally valued that families may avoid discussing them or assume that they are sure of their importance. Additionally, issues that are salient for families may be less so for patients. In this case, families may be concerned about resolving family conflicts that

10 Vol. 30 No. 6 December 2005 Patient-Family Agreement on End-of-Life Choices 507 may continue after the patient s death, but these conflicts seem to be of less consequence for the patient. Further, the patient s willingness to leave end-of-life treatment issues in the family s or physician s hands is clearly a concern for the family but may be a step by the patient towards accepting and relinquishing control over his dying and death. 53 Conversely, issues salient to patients may be less so for families who are comfortable and willing to provide help when patients need it. For example, families may underestimate the importance of patients worries around being a strain or burden. Patients may not want to disclose or discuss these anxieties and concerns with their families nor are they likely to comfortably tell families that they would like more time apart from them. Physicians might act on this finding by initiating discussions with family members about the need to reassure patients that they are not an unwelcome burden or obligation. When comparing concordance between patients and families on measures of symptom frequency and impact, functional status, and end-of-life preferences, we did find that concordance between patients and families was strongest for those measures assessing observable, behavioral activities. On both the MSAS, a measure of symptom frequency and impact, and the SPII, a measure of functional status, patient and family member scores were significantly and moderately to strongly correlated. These findings confirmed our hypotheses and are supported by the majority of studies concerning quality of life and quality of care at the end of life. 20 This study has a number of limitations. As noted above, we used a hospice sample, and findings characteristic of this sample may not generalize to patients who are facing end-of-life issues but have not made the transition, either physically or emotionally, to hospice care. Further, because patients entering hospice care are often required to have a family member who is responsible for their care, they are more likely to have a designated family member who may know or have discussed end-of-life plans. Last, our relatively low response rate (31%) suggests that our sample may not be representative of many patients with terminal illnesses nor even of all hospice patients. Despite attempts to collect complete data, we were unable to identify all the reasons for refusing to participate in this study. Unfortunately, end-of-life research poses unique problems associated with representativeness and generalizability because patients are often too sick to participate or family members may be too emotionally distressed to find time to respond to interviews or surveys. 54 In summary, the data from this study suggest that patients and family members share some understandings of a patient s end-of-life preferences, but these understandings do not cover all areas considered important by patients. From a measurement perspective, future research is needed to understand the influence of family understanding of patients preferences and family members abilities to provide an assessment of the quality of the dying experience. Importantly, questionnaires that measure family members perspectives as proxies for patients need careful reliability and validity analyses before being used as outcome measures in quality of care research. From a clinical perspective, if family members are to ensure that their loved one has the death that he/she desires, it is necessary that the patient and family member discuss the patient s desires and preferences and confirm his/her understandings with the patient. Similarly, physicians may help by encouraging and facilitating these discussions. These discussions can ensure that family members, and the clinicians to whom families turn for guidance in providing end-of-life care, confidently represent their loved one s preferences. Acknowledgments The authors gratefully acknowledge the invaluable assistance of Ellen McCown, our interviewer, and Elizabeth Nielsen, MPH, their research coordinator. Support for this paper was provided by the Agency for Healthcare Quality and Research (R03 HS09540) and a grant from the Robert Wood Johnson Foundation. References 1. Field MJ, Cassel CK, eds. Approaching death: improving care at the end of life. Washington, DC: National Academy Press, 1997.

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