Symptom Experiences of Residents Dying in Assisted Living Juliana C. Cartwright, RN, PhD, Susan Hickman, PhD, Nancy Perrin, PhD, and Virginia Tilden, RN, DNSc Objectives: To identify the end-of-life symptom experiences of residents who died in assisted living, to describe family satisfaction with the end-of-life care, and to compare end-of-life symptom distress across 4 settings: assisted living, private home, nursing home, and hospital. Design: In-person interviews with family members of people aged 65 or older who had died 2 to 4 months earlier in an assisted-living facility. Symptom distress reports were compared with data from prior studies in other settings. Setting: A mixed urban-rural community in the Northwest. Participants: Twenty-five family members who selfidentified as closely involved in the care or decision making for a relative who died in an assisted-living facility. Measurements: A 28-item interview guide composed of demographic questions, the modified Family Memorial Symptom Assessment Scale-Global Distress In-
Older adults increasingly spend their final years in assisted living, and this setting as a place of death is expected to grow in coming decades. Yet despite an expanding body of knowledge about end-of-life care in hospitals, nursing homes, and the home, little is known about the symptom experiences of people dying in assisted living—a lack of knowledge that may impede delivery of appropriate, timely services. This article reports on resident symptom experiences in their final week of life and compares symptom experiences with those previously reported for hospital, home-based, and nursing home deaths.
Oregon Health and Science University, School of Nursing, Ashland, OR (J.C.C., S.H., N.P.); University of Nebraska Medical Center College of Nursing, Omaha, NE (V.T.). This study was supported by the National Center for Nursing Research, Grant # 1P20NR07807-01, Center for Symptom Management, Oregon Health and Sciences University, School of Nursing, L. Nail, Principal Investigator. Address correspondence to Juliana C. Cartwright, RN, PhD, Oregon Health and Sciences University School of Nursing, 1250 Siskiyou Boulrvstd, Ashland, OR 97530. E-mail:
[email protected]
Copyright ©2006 American Medical Directors Association DOI: 10.1016/j.jamda.2005.09.011 ORIGINAL STUDIES
dex (FMSAS-GDI), and open-ended items describing the decedent’s last days and family satisfaction with care and symptom management. Results: Symptoms experienced by at least 75% of decedents were lack of energy, loss of appetite, dry mouth, drowsiness, and pain. Symptom experiences in assisted living were comparable to those in other settings. Families overall were satisfied with end-of-life care in assisted living, but had concerns about communication among providers, inadequate monitoring of their decedent, and lack of staff knowledge specific to symptom management. Conclusion: Residents dying in assisted-living settings have similar symptom distress experiences as people dying in other, more studied settings. As residents and families alike overwhelmingly support resident deaths in their assisted living “home,” policies, structures, and processes are needed to ensure that end-of-life care needs are met. (J Am Med Dir Assoc 2006; 7: 219 –223) Keywords: Assisted living; end-of-life; symptom management
Also described is family satisfaction with end-of-life care in assisted living. Death accounts for 28% of the annual turnover in assistedliving settings,1,2 and this rate is predicted to accelerate as facilities increasingly accept sicker, more frail residents and provide more care services to support aging in place.3 Residents and families alike overwhelmingly support resident deaths occurring in their assisted-living “home.”4,5 However, little is known about the quality of the dying experience in these settings, especially as signified by one of its key indicators, decedent symptom distress.6 Family members are an important source of data regarding decedents’ end-of-life symptom experiences.7,8 Across a range of care settings, families have reported problems with symptom management,6,9 –11 as well as a lack of basic comfort measures for dying people.11–14 While studies indicate that symptom management may be problematic in assisted living,4,15 detailed information has not been reported regarding the presence and nature of residents’ symptom distress in assisted living. This study describes end-of-life symptom experiences and family satisfaction with the care experienced by older adults who died in assisted living. Families completed a validated Cartwright et al. 219
measure of symptom distress and answered questions about the end-of-life care experiences of older adults who died in their assisted living home. The symptom experiences of these decedents were also compared with those who died in 3 other settings: hospitals, nursing homes, and in-home deaths. Details regarding the other study settings have been previously reported.16,17 We found that overall, symptom experiences at the end of life for most residents were comparable to those who died in other settings. However, as a whole, the data on assisted living are scarce, and much remains unknown about the dying experience of residents in these facilities.
administered to respondents who answered “yes.” An additional item asked families to rate their loved one’s level of comfort in the week prior to death. Response options ranged from “0” (comfortable) to “3” (in severe pain or distress). After completion of the FMSAS-GDI, 2 close-ended questions were asked to determine family satisfaction with symptom management and the quality of care at end of life. Respondents rated their satisfaction on a 3-point scale ranging from “not satisfied” to “satisfied” to “very satisfied.” Two open-ended items elicited family perceptions about the quality of the care experienced by the decedents in their final days.
METHODS Settings Following study approval by the Oregon Health & Science University Institutional Review Board, participants were recruited by the administrative staffs of 6 proprietary assistedliving facilities in a mixed urban-rural region in the Pacific Northwest. Between 2 and 4 months after the death of a resident, investigator-developed letters describing the study were mailed by facility administrative staff to the surviving family member deemed most familiar with the resident’s death. This time frame was selected to enable participants to move beyond preliminary, intensive grief, but still be able to recall details of their loved one’s final days and weeks. Families indicating interest via postcard responses were contacted by telephone by the principal investigator (J.C.C.), who described the study in detail and ascertained respondent eligibility. To participate, potential respondents had to be age 18 or older and report that they were somewhat or very involved in the care or decision making for the decedent. Family members were excluded if their loved one was unconscious during their final week of life or died outside assisted living. Facility staff reported mailing 75 letters over a 13-month period of time. Forty-one people returned postcards: 32 indicated interest in the study and 9 people indicated no interest in participation. A total of 25 were deemed eligible and interviewed. Interviews were conducted in person at a time and place convenient to the respondents. The average interview length was between 40 and 60 minutes. Data collection Symptom experience data were obtained using the modified Family Memorial Symptom Assessment Scale-Global Distress Index (FMSAS-GDI), a reliable and validated scale that assesses family perceptions of symptom distress during the decedent’s final week of life.16 The scale includes 4 psychological symptom items (sadness, worry, irritability, and nervousness) and 7 physical symptom items (lack of appetite, lack of energy, feeling drowsy, constipation, dry mouth, dyspnea, and pain). Psychological symptoms are rated on a frequency scale ranging from “0” (never) to “4” (almost constantly). Physical symptoms are rated on a distress scale from “0” (not at all) to “4” (very much). The overall or global score is the mean of the scores across all 11 items. Prior to the first item, a screening question asks whether the decedent was responsive (conscious/awake) in their last week. The scale was 220 Cartwright et al.
RESULTS Participants Participants were primarily women (68%) with a mean age of 60 years (SD ⫽ 12 years). Participants included adult children (72%), spouses (12%), other relatives (12%), and a friend (4%). Reflecting the homogeneous ethnicity of this region, all participants were Caucasian. Decedents were mostly women (68%) with a mean age of 87 (SD ⫽ 5 years). Their mean length of residence in the facility was 1.5 years, with a range of 4 weeks to 8 years. A majority (64%) were enrolled in hospice at time of death. Families reported the following causes of death: dementia (40%), heart disease (28%), cancer (8%), and other conditions, including pneumonia, renal failure, and “old age” (8%). This sample of family members and decedents is comparable in age, gender, and kinship to national data on residents of community residential care facilities.18,19 To date, no studies have been published that report national data identifying causes of death in assisted living for comparison with this sample. Symptom Experiences Our first priority was to identify the symptom experiences of the decedent as observed by the family members. To achieve this, we used the FMSAS-GDI.16 In this sample, the FMSAS-GDI demonstrated good evidence for internal consistency reliability (␣ ⫽ 0.79) and concurrent validity (r ⫽ 0.575; P ⫽ .003) when correlated with a single item asking about the decedent’s level of comfort, and it also provided specificity about a variety of symptom experiences. Overall, lack of energy and lack of appetite were the most commonly reported physical symptoms, and pain the most distressing (See Table 1). While the mean score for global symptom distress (GDI) was a modest 0.92 (SD 0.78) on a scale of 0 (no distress) to 4 (severe distress), families also reported specific, distressful symptom experiences. More than 75% of decedents were reported to experience lack of energy, lack of appetite, dry mouth, drowsiness, and pain. Physical symptoms experienced as most distressful were pain (50%), difficulty breathing (45%), and constipation (33%). Irritability (52%) and sadness (43%) were the most frequently reported psychological symptoms. While “worried” was less frequently reported (29%), its presence was frequent or almost constant for 71% of the decedents experiencing this symptom. JAMDA – May 2006
Table 1. Family Reports of Symptoms Experienced by Decedents in Assisted Living (n ⫽ 25)
80 60
Hospital
40 20
Sa d er vo us
D
iff icu la ty
N
ne rg y M ou th
of E
80% (20) 15%
Pa in Br ea th in g
0
83% (20) 20%
ry
88% (22) 9%
Private Home
D
96% (24) 25%
75% (18) 50% 54% (12) 33% 46% (11) 45%
Psychological Symptoms Irritable % experienced (n) % quite a bit/almost constantly Sad % experienced (n) % quite a bit/almost constantly Worried % experienced (n) % quite a bit/almost constantly Nervous % experienced (n) % quite a bit/almost constantly
100 Percentage
Lack of energy % experienced (n) % quite a bit/very distressing Loss of appetite % experienced (n) % quite a bit/very distressing Dry mouth % experienced (n) % quite a bit/very distressing Drowsy % experienced (n) % quite a bit/very distressing Pain % experienced (n) % quite a bit/very distressing Constipation % experienced (n) % quite a bit/very distressing Difficulty breathing % experienced (n) % quite a bit/very distressing
Presence
La ck
Physical Symptom
Assisted Living Facilities Nursing Home
52% (13) 23% 43% (10) 60% 29% (7) 71% 28% (7) 57%
Family members were asked whether the decedent experienced each symptom in the last week of life. If present, the family member was asked to rate how distressing each physical symptom was to the decedent on a scale of 0 (not at all) to 4 (very distressing) and each psychological symptom on a scale of 0 (never) to 4 (almost constantly).16
Fig. 1. Percentage of older adults experiencing each symptom in the last week of life as reported by family members.
vate homes on lack of energy, loss of appetite, constipation, sadness, and nervousness, while decedents in these 2 settings did experience higher rates of lack of energy, loss of appetite, constipation, and nervousness, and lower rates of sadness compared with those in nursing homes and hospitals. The amount of distress from the physical symptoms was lower for those in assisted living than for those in the other 3 settings for all physical symptoms, except for drowsiness, for which assisted living and nursing homes were the lowest. In general, the frequencies of the psychological symptoms were very similar between assisted living and private homes. Families of decedents in assisted living and private homes reported these symptoms as occurring less frequently than families of decedents in nursing homes and hospitals. Satisfaction With Symptom Management and Care Families overall were satisfied with both the way symptoms were managed and the quality of care. For overall symptom
Symptom Experience Comparisons Across Settings
ORIGINAL STUDIES
Degree of Distress
Assisted Living Facilities 4
Nursing Home
3
Private Home
2 Hospital
1 0 La c Lo k o ss f E of ne A rg D ppe y ry t i M te o D u th ro w D s iff C icu on P y la st ai ty ip n Br ati ea on th Irr i ng i ta bl e W Sad or N rie er d vo us
Symptom experiences of residents in assisted-living facilities were descriptively compared with those who died at home, in a nursing home, or in a hospital. Overall, symptom experiences in assisted living were most comparable with experiences in at-home deaths. Figure 1 presents the percentage of people reported to experience a given symptom, while Figure 2 presents the mean reported amount of distress for physical symptoms and frequency for psychological symptoms among those who experienced a given symptom. In comparing specific symptoms across settings, we found that a greater percentage of those in assisted living were reported as experiencing dry mouth, pain, and being irritable, and a lower percentage experienced difficulty breathing, than those in nursing homes, private homes, or the hospital. There were virtually no differences between assisted living and pri-
Fig. 2. Mean degree of distress for physical symptoms and frequency for psychological symptoms among those reported experiencing a symptom in the last week of life. Cartwright et al. 221
management, 56% of families were very satisfied, 40% were somewhat satisfied, and 4% were unsatisfied. For satisfaction with the quality of care at end of life, 64% were very satisfied, 28% were somewhat satisfied, and 8% were not satisfied. Not surprisingly, high GDI scores were negatively correlated with satisfaction with symptom management (r ⫽ ⫺0.473; P ⫽ .017), and satisfaction with quality of care (r ⫽ ⫺0.451; P ⫽ .024). Open-ended comments about the quality of the end-of-life care experiences indicated 3 areas of concern commonly identified by families. First, while staff communications with family members were highly rated, families often described a lack of communication or coordination of care among the providers: facility staff, physicians, and, when present, hospice staff. Physicians were unavailable to address family and assistedliving staff concerns, and gaps or misunderstandings in communication often occurred between assisted-living and hospice staffs. Yet communication among providers was deemed essential, with families citing assisted-living– hospice “teamwork” or “partnerships” as critical for enabling them to focus on being with their dying relative. Second, some families expressed concerns that both facility and hospice staffs were inadequate in their monitoring of the dying resident’s condition. They described high resident-to-staff ratios that limited timely attention to dying residents, and that the facility had “promised more than it could deliver” as the resident became increasingly dependent. Several respondents also indicated they had expected hospice to be present more often in the final days. Finally, some families perceived that the facility staff lacked knowledge about symptom management at end of life. Specifically identified areas of concern were staff lack of knowledge regarding medications used to manage pain and other symptoms. Descriptions of good care included management of symptoms and staff efforts to provide for dying residents’ comfort and personal appearance. These activities included foot massages and “doing her face, even at the end” (eg, rouge, lipstick), as well as sponge baths, oral care, and “just loving her.” Families also highly valued the relationships that their decedents had with assisted living staff: “They had become family to him.” Staff were cited for their personal knowledge about and interest in the decedents, including taking time to sit with them in their final days. Despite the challenges identified by families, they were all glad that their loved one had been able to die “at home.” DISCUSSION This study reports on the nature and intensity of end-of-life symptom experiences for residents in assisted living and compares these with the experiences of decedents who die in other settings. We found that symptom experiences in assisted-living decedents were comparable to the experiences of decedents in private homes, and somewhat less distressing than symptoms reported for decedents in nursing homes and hospital settings. The majority of assisted-living decedents were reported to be quite a bit or very much distressed by at least one symptom experienced in their final week. Despite concurrent reports of symptom distress, families 222 Cartwright et al.
reported high levels of satisfaction with symptom management and quality of care, findings that are similar to reports in other settings.7 These results may reflect low public expectations for end-of-life care, or families’ needs to believe that the care overall was good to minimize their own guilt or distress. That families who perceived higher levels of symptom distress at the end of life also reported less satisfaction with the care provided is not surprising. Notwithstanding high overall satisfaction ratings with the care, the open-ended comments revealed specific areas where families believe end-of-life care needs to be improved. Communication about care among care providers was problematic, a finding that is consistent with other reports in assisted-living and other settings.4,8,10,20 This study also underscored our previous findings that assisted-living staff sometimes lack knowledge of symptom management and that monitoring may be inadequate when a loved one is dying.4 This finding suggests a potential discrepancy with administrators’ ratings of staff skill in symptom management as being adequate.21 Likewise, the level of hospice involvement in assisted living supports earlier reports,4,15,22 which found that assisted-living administrators desire hospice involvement when death is anticipated, suggesting the need for hospice and assisted-living administrators to develop mutual end-of-life care standards. The high presence of deaths from dementia-related causes was somewhat unexpected. Since 2 of the 6 recruitment facilities had dedicated dementia units, this high prevalence may be unique to this particular sample. Further, dementia may have been the primary diagnosis yet not the precipitating cause of death for some residents. Large data-set studies are needed that describe the most common causes of death in assisted living to help better understand the needs of this population. In comparing symptom experiences across settings, the data suggest that residents dying in assisted living have more symptom experiences, except for difficulty breathing, but a lower level of symptom distress than people dying at home, in the hospital, or in nursing homes. There are a number of possible explanations for this finding. It may be that assisted living does a good job of symptom management as long as the symptoms are not distressing. Other possible interpretations of these findings include the small size and the characteristics of this assisted-living sample. Since this sample had a high incidence of assisted-living residents with Alzheimer disease, families may have been unable to identify symptom distress based on limited communication with the resident. Additionally, assisted-living residents may be transferred to other settings when symptoms are exacerbated. However, the triggers for this decision from the perspective of both families and caregivers are not known; nor is it known where these patients go or how soon after their transfer they die. Thus, the lower levels of symptom distress in assisted living should not be interpreted as meaning that assisted-living facilities manage end-of-life symptoms better than other care facilities. Rather, our findings suggest that the research of these experiences is only beginning, and much more work needs to be done regarding symptoms at end of life in assisted living, and JAMDA – May 2006
the conditions under which dying assisted-living residents are transferred to other settings. Limitations This is the first study to document symptom experiences at the end of life in an assisted-living setting. Its strengths include use of both quantitative and qualitative methods for data collection and use of a validated scale of symptom distress with family members of decedents in the assisted-living setting. The study also has limitations. The sample size of 25 was small, limiting the generalizability of the findings. The low response rate to facility recruitment letters is of concern, and the experiences of study participants may be different from the experiences of people who chose not to respond to the recruitment letters or participate in the research. The Institutional Review Board required us to recruit participants through facility administrators. Despite training sessions, tracking sheets, weekly phone contacts, and in-person visits, the recruitment phase was hampered by staff confusion about recruitment. However, the sample obtained is similar to the typical assisted-living population, suggesting findings are relevant for assisted-living residents. CONCLUSIONS Our findings suggest that residents dying in assisted-living settings have similar symptom-distress experiences as people dying in other, more-studied settings. The findings regarding the quality of care suggest that the challenges to providing end-of-life care in assisted living include interagency staff communications, resident monitoring, symptom management, and assisted-living staff knowledge regarding care at end of life. Further, residents and their families clearly view the assisted living as “home” and desirable as a place for death. The rapidly expanding population of older adults choosing to live in this setting makes research on end-of-life-care in assisted living a priority. ACKNOWLEDGMENTS The authors acknowledge and thank Susan Tolle, MD, Oregon Health Sciences University, for sharing data from her study of symptom experiences in hospital decedents. REFERENCES 1. Mezey M, Dubler N, Mitty E, Brody A. What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? Gerontologist 2002:54 – 67. 2. National Center for Assisted Living. 1998 Facts and trends: The assisted living sourcebook 1998. Available at: www.ncal.org/about/resident.htm. Accessed August 16, 2005.
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3. Spillman B, Liu K, McGilliard C. Trends in Residential Long-Term Care: Use of Nursing Homes and Assisted Living and Characteristics of Facilities and Residents. November 25, 2002. Available at: http://aspe.hhs.gov/daltcp/reports/rltct.htm. Accessed August 16, 2005. 4. Cartwright J, Kayser-Jones J. End-of-life care assisted living facilities. Journal of Hospice and Palliative Nursing 2003;5:143–151. 5. Sloane P, Zimmerman S, Hanson L, Mitchell M, Reidel-Leo C. End-oflife care in assisted living and related residential care settings: Comparison with nursing homes. J Am Geriatr Soc 2003;51:1587–1594. 6. Singer PA, Martin DK, Kelner M. Quality end-of-life care: Patients’ perspectives. JAMA 1999;281:163–168. 7. Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc 1999;45:1339 – 1344. 8. Teno J, Clarridge B, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004;291:88 –93. 9. Steinhauser K. In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000;132:451– 459. 10. Kutner J, Steiner J, Corbett K, Jahnigen D, Barton P. Information needs in terminal illness. Soc Sci Med 1999;48:1341–1352. 11. Lynn J, Teno JM, Phillips RS, et al. Perceptions by family members of the dying experience of older and seriously ill patients. Ann Intern Med 1997;126:97–196. 12. Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press; 1997. 13. Foley DJ, Miles TP, Brock DB, Phillips C. Recounts of elderly deaths: Endorsements for the patient self-determination act. Gerontologist 1995; 35:119 –121. 14. Emanuel EJ, Fairclough D, Slutsman J, Emanuel LL. Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Ann Intern Med 2000;132:451– 459. 15. Dixon S, Fortner J, Travis SS. Barriers, challenges, and opportunities related to the provision of hospice care in assisted-living communities. Am J Hospice Palliative Care 2002;19:187–192. 16. Hickman SE, Tilden VP, Tolle SW. Family reports of dying patients’ distress: The adaptation of a research tool to assess global symptom distress in the last week of life. J Pain Symptom Manage 2001;22:565– 574. 17. Tilden VP, Tolle SW, Drach LL, Perrin NA. Out of hospital death: Advance care planning, decedent symptoms, and caregiver burden. J Am Geriatr Soc 2004;52:532–539. 18. Zimmerman S, Sloane P, Eckert JK. Assisted Living Needs, Practices, and Policies in Residential Care for the Elderly. Baltimore: Johns Hopkins University Press; 2001. 19. Wilson KB. Assisted living: Evolving model for a new generation of elderly. Testimony presented June 11, 2003 to the Federal Trade Commission & Justice Department Hearings on Health Care and Competition Law and Policy. Available at: http://www.ftc.gov/ogc/healthcarehearings/ docs/030611wilson.pdf. Accessed June 15, 2005. 20. Tolle SW, Tilden VP, Rosenfeld AG, Hickman SE. Family reports of barriers to optimal care of the dying. Nurs Res 2000;49:1–26. 21. Zimmerman S, Sloane P, Hanson L, Mitchell M, Shy A. Staff perceptions of end-of-life care in long-term care. J Am Med Dir Assoc 2003; 4:23–26. 22. Mitty E. End of life planning and care in assisted living facilities. Paper presented at: the 53rd Annual Scientific Meeting of the Gerontological Society of America; November 17–21, 2000; Washington DC.
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