- Email: [email protected]
Staff Perceptions of End-of-Life Care in Long-Term Care
Staff Perceptions of End-of-Life Care in Long-Term Care Sheryl Zimmerman, PhD, Philip D. Sloane, MD, MPH, Laura Hanson, MD, MPH, C. Madeline Mitchell, MURP, and Ann Shy, MHA Objective: Although residential care/assisted living facilities and nursing homes have increasingly become a significant site of death for older Americans, little is known about staff perceptions of end-of-life care, perceived need for improvement in care, and differences by type of setting. Design, Setting, and Participants: Ninety-nine staff provided their perceptions of end-of-life care for 99 decedents from 74 residential care/assisted living facilities and nursing homes in four states as part of a larger cohort study. Staff were interviewed retrospectively regarding care provided during residents’ last month of life. Measurements: Staff reported on 11 areas of end-oflife care, describing the importance of each area and the level of improvement they felt was indicated. Weighted “need for change” scores were calculated
Nursing homes (NHs) have long been a notable site of care for our elderly, and are becoming a notable site of death, as well. Two and one-half million Americans die annually, more than 17% of whom die in NHs.1 A significant number are also dying in alternative forms of residential long-term care (LTC), known by names such as domiciliary care, adult care, and board-and-care. In 1999, 1.5 million elderly resided in these residential care/assisted living (RC/AL) facilities,2 with estimates that they will surpass NHs as providers of care by 2010.3 These facilities, which provide room, board, and assistance with activities of daily living, are not licensed to provide medical care, yet with their annual resident mortality rate of 16 to 22%,4 they have become a significant site of death for our nation’s elderly. What little is known about end-of-life care in LTC is restricted to NHs, and suggests that this care is often subopCecil G. Sheps Center for Health Services Research (S.Z., P.D.S., C.M.M., A.S.), the School of Social Work (S.Z.), the Department of Family Medicine (P.D.S.), and the Department of Internal Medicine, University of North Carolina at Chapel Hill (L.H.). Address correspondence to Sheryl Zimmerman, PhD, Program on Aging, Disability and Long-Term Care, Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill, 101 Conner Drive, Suite 302, Campus Box 3386, Chapel Hill, NC 27599 –3386. E-mail: [email protected].
Copyright ©2003 American Medical Directors Association DOI: 10.1097/01.JAM.0000046935.64053.54 ORIGINAL STUDIES
as the product of perceived importance and need for improvement. Results: Both residential care/assisted living and nursing home staff reported a need for more staff education and nursing assistant time, as well as more use of volunteers. The two lowest ranked items for both facility types were involvement of hospice and encouragement for staff to attend funeral services. Nursing home staff perceived a greater need for improvement than residential care/assisted living staff in all 11 areas. Conclusion: Results underscore the staffing demands of end-of-life care across facility types, and staff desires to be able to provide quality care throughout the dying process. (J Am Med Dir Assoc 2003; 4: 23–26) Keywords: End-of-life care; nursing home; assisted living; staff perceptions.
timal. For example, inadequate palliative care leaves many dying residents in moderate to severe pain5–7; the decisionmaking role of the resident and family is limited8; and infrequent physician presence increases reliance on hospital emergency rooms to address acute medical problems.9 There are special concerns about RC/AL facilities as providers of endof-life care because they lack the medical expertise presumed necessary for optimal care. However, because they embrace a more social model of care, they may be superior to NHs in their provision of the psychosocial components of care.10 This study examines staff perceptions of end-of-life care, perceived need for improvement in care, and differences across settings of care. METHODS Sample A total of 99 staff members from a stratified random sample of 74 facilities (49 RC/AL and 25 NHs) in Florida, Maryland, New Jersey, and North Carolina provided perceptions of end-of-life care for 99 decedents participating in an ongoing cohort study.11 Residents 65 years of age and older were enrolled in the study between October 1997 and November 1998, and data on end-of-life care were obtained for those residents being followed and who died in the facility or within 3 days of discharge from the facility between August 1999 and November 2000. Respondents Zimmerman et al. 23
Table 1. Staff Perceptions of End-of-Life Care in Residential Care/Assisted Living (n ⫽ 55)
More staff education More nursing assistant time Counseling staff on dealing with death More social worker time More use of volunteers Staff available 24 hours Obtaining preferences Having psychologist or chaplain on staff Dying residents having private room Encouraging staff to attend service Involvement of hospice
Percent reporting very important
Percent reporting need for “some/a lot of” improvement
Weighted need for change* (Range: 1–9)
80.0 89.1 54.5 58.2 36.4 65.5 83.6 54.5 77.8 38.2 63.6
80.0 69.1 58.2 52.7 63.7 48.2 38.2 45.4 25.5 38.2 27.3
5.55 5.13 4.22 4.16 4.09 3.94 3.89 3.89 3.69 3.35 3.22
*The weighted need for change is calculated by multiplying the importance rating (1–3) by the need for improvement rating (1–3), where higher scores indicate greater need.
were the staff members who knew the resident best and provided services such as direct care, medication administration, communication with family, and service coordination during the last month of life. Seventy-eight of the staff (79% of respondents) were registered nurses (RNs) or licensed practical nurses (LPNs), 12 were administrators, and 9 were aides, social workers, or others. Nursing homes were significantly larger than RC/AL facilities (mean size 112.5 vs. 39.3 beds, P ⬍ 0.0001), older (mean age 25.8 vs. 12.5 years, P ⬍ 0.01), more likely to be not-for-profit (48.0% vs. 18.7%, P ⬍ 0.01), and had a higher Medicaid case mix (54.9% vs. 11.2%, P ⬍ 0.0001). All procedures were reviewed and approved by the Institutional Review Boards of the University of North Carolina at Chapel Hill and the University of Maryland, Baltimore. Measures Staff were interviewed by telephone about their perceptions of the process of institutional end-of-life care in 11 areas considered important, based on a review of the literature and expert opinion (see Table 1). Staff were asked to describe the importance of each area (not, somewhat, or very important), and how much improvement their facility needed in that area (none, some, or a lot.) Analyses The product of importance and need for improvement (both scored 1, 2, 3) was calculated for each of the 11 items, giving a “weighted need for change” score ranging from 1 to 9. Correlations between weighted need for change scores and facility demographics were calculated using Spearman’s rho. RESULTS Residential Care/Assisted Living Table 1 shows that more than three-quarters of the RC/AL staff felt that more nursing assistant time, obtaining preferences, staff education, and providing a private room were very important in the provision of end-of-life care. At least threequarters reported a need to provide more staff education, and 24 Zimmerman et al.
over one-half recommended increases in nursing assistant time, use of volunteers, counseling for staff, and social worker time. When weighting importance by need for improvement, more staff education ranked highest (weighted score ⫽ 5.55). More nursing assistant time was ranked next (weighted score ⫽ 5.13). Nursing Homes Table 2 shows that three-quarters or more of the NH staff felt that obtaining preferences, more nursing assistant time, having a staff psychologist/chaplain, more staff education, and hospice involvement were very important. More than three-quarters reported a need to increase volunteer use, staff education, and nursing assistant time. When weighting importance by the need for improvement, more nursing assistant time ranked highest (weighted score ⫽ 6.00). Eight of the remaining 10 items were endorsed by at least one-half of the staff as both very important and needing improvement. Residential Care/Assisted Living and Nursing Homes Two of the top three weighted items in both facility types were the same: more staff education and nursing assistant time. More use of volunteers was among the top five for both groups. The two lowest ranking items were identical for both facility types: hospice involvement and staff attending services. Nursing home staff perceived a greater need for improvement than RC/AL staff in all 11 areas. Facility Factors and Need for Improvement in End-of-Life Care Bivariate analyses identified whether four facility characteristics (size, age, proprietary status and Medicaid case mix) related to weighted perceptions of need for change. Facility size was the only variable that showed a consistent pattern (P ⬍ 0.05): the larger the facility, the more likely the staff were to report a need for more nursing assistant time (rho ⫽ 0.33) and having a psychologist/chaplain on staff (rho ⫽ 0.28) in JAMDA – January/February 2003
Table 2. Staff Perceptions of End-of-Life Care in Nursing Homes (n ⫽ 44)
More nursing assistant time More use of volunteers More staff education Staff available 24 hours Dying residents having private room More social worker time Counseling for staff on dealing with death Having psychologist or chaplain on staff Obtaining preferences Involvement of hospice Encouraging staff to attend service
Percent reporting very important
Percent reporting need for “some/a lot of” improvement
Weighted need for change* (Range: 1–9)
88.6 54.5 81.8 63.6 50.0 72.7 60.5 83.7 93.0 75.0 27.9
81.4 81.8 81.8 72.7 68.2 62.8 74.4 62.8 53.5 40.9 51.2
6.00 5.98 5.75 5.41 5.23 5.02 4.98 4.95 4.60 4.20 3.53
*The weighted need for change is calculated by multiplying the importance rating (1–3) by the need for improvement rating (1–3), where higher scores indicate greater need.
RC/AL; and a need for improved hospice involvement (rho ⫽ 0.47), more social worker time (rho ⫽ 0.40) and privacy (rho ⫽ 0.40) in NHs. DISCUSSION This study supports findings of needed improvement in end-of-life care, and adds to the literature by noting the areas deemed important by the very providers of that care. Staff across both NH and RC/AL settings report a need for more nursing assistant time and education. It seems that the effects of the widespread LTC staffing shortages12 are being felt in end-of-life care. Although it is not known why and in what way staff thought more time would improve care, it is likely that understaffing,13 coupled with high turnover,14 isolates dying residents and disrupts the consistency and continuity of care. It is also not known in what manner more staff education was thought to be beneficial, but the fact that respondents across settings spoke to its importance implies their desire to provide high quality end-of-life care. It is intriguing that both sets of respondents suggested increased use of volunteer services; to date, volunteerism has not been mentioned frequently in the LTC literature, and it may need to become more prominent as staffing shortages continue. The manner in which a volunteer pool less well trained than the workers could best augment services is worthy of exploration. Especially intriguing is that hospice services are not considered a solution to the staffing demands: both sets of respondents ranked increased hospice involvement toward the lower end of the scale, despite growing evidence that hospice improves the quality of end-of-life care for NH residents.15,16 Long-term care staff may have insufficient experience overcoming the barriers to working with hospice; alternately, they may prefer to maintain involvement with residents for whom they have been caring for years, rather than relinquish it to outsiders. This finding is similar to the observations of others, that long-term care staff tries to deliver end-of-life care themselves before accepting the need for outside help.17 Although some might interpret this as a defensive posture, it just as readily might indicate that staff value the relationship they have ORIGINAL STUDIES
developed with the decedent and want to be involved through the dying process in an important way.18 Viewing the worker’s role and involvement of hospice in this context, end-of-life culture change would best empower staff and increase collaboration,19 rather than consider hospice a replacement for ongoing relationships. The association between facility size and type and perceived need for improvement suggests that personalization of care is less common in larger facilities and NHs, and/or that there is more staff diversification and staffing shortages in these facilities, and/or that staff in larger facilities and NHs have greater expectations for end-of-life care. In addition, it seems to call for a more systemic response to change care in larger NHs and RC/AL facilities. However, whether and to what extent the perceived deficits in the provision of end-oflife care in any facility type actually affect the quality of the dying experience for residents and their families is unknown. The staff perceptions presented in this paper suggest areas of focus for improving end-of-life care in long-term care institutions. The National Institute of Aging has funded further study in these and other facilities to better understand the implications of the findings—to learn, for example, how staffing patterns relate to outcomes of care, and the areas in which staff require more education, and the manner in which relations with hospice unfold, and the role that volunteers can fill—so that they can be used to improve long-term end-of-life care. Although the extent to which staffing and education impact the quality of care is not yet determined, the near universal call for improvement by study respondents indicates perceived need. Attention to staffing and education seems an achievable firststep toward the organizational change that has been heralded as central20 –22 to quality improvement in end-of-life care. ACKNOWLEDGMENTS The authors wish to acknowledge the cooperation of the facilities, residents and families participating in the Collaborative Studies of Long-Term Care (CS-LTC), as well as the project coordination of Verita Custis Buie and data collection efforts of Charlene Riedel-Leo and the late Mary Alice Zimmerman et al. 25
McGurrin. This research was supported by grants from the Retirement Research Foundation (99 –121) and the National Institute on Aging (RO1 AG13871 and RO1 AG13863). REFERENCES 1. Brock DB. Foley DJ. Demography and epidemiology of dying in the US with emphasis on deaths of older persons. Hospice J 1998;13:49 – 60. 2. General Accounting Office, United States Congress. Assisted Living: Quality of Care and Consumer Protection Issues in Four States. Report to congressional requesters. Washington, DC: US Government Printing Office, 1999. 3. Meyer H. The bottom line on assisted living. Hosp Health Netw 1998; 72:22–26. 4. National Center for Assisted Living. Facts and Trends: The Assisted Living Source Book. Annapolis, MD, 1998. 5. Bernabei R, Gambassi G, Lapane K, et al. Management of pain in elderly residents with cancer. JAMA 1998;279:1877–1882. 6. Hanson LC, Henderson M, Schulman A, et al. Needs of the dying in nursing homes. J Am Geriatr Soc 1999;47:S9. 7. Singer P, Martin DK, Kelner M. Quality end-of-life care: Patient’s perspective. JAMA 1999;281:163–198. 8. Bradley E, Peiris V, Wetle T. Discussions about end-of-life care in nursing homes. J Am Geriatr Soc 1998;46:1235–1241. 9. Ackermann RJ. Nursing home practice: Strategies to manage most acute and chronic illnesses without hospitalization. Geriatrics 2001;56:37– 48. 10. Morgan LA, Eckert JK, Lyon SM, eds. Small Board-and-Care Homes: Residential Care in Transition. Baltimore and London: The Johns Hopkins University Press, 1995. 11. Zimmerman S, Sloane PD, Eckert, JK, eds. Assisted Living: Needs, Practices and Policies in Residential Care for the Elderly. Baltimore: Johns Hopkins University Press, 2001.
26 Zimmerman et al.
12. Stone, R. Long-Term Care for the Elderly with Disabilities: Current Policy, Emerging Trends, and Implications for the Twenty-First Century. New York: Milbank Memorial Fund, 2000. 13. Bonifazi WL. Up where they belong. Contemp Longterm Care 2000;23: 22–28. 14. Hanson LC, Henderson M. Care of the dying in long-term care settings. Clin Geriatr Med 2000;16:225–237. 15. Baer WM, Hanson LC. Families’ perceptions of the added value of hospice in the nursing home. J Am Geriatr Soc 2000;48:879 – 882. 16. Miller SC, Mor VN. The role of hospice care in the nursing home setting. J Palliat Med 2002;5:271–277. 17. Death in a nursing home with active medical management. [abstract]. J Am Geriatr Soc 2000;48:460. Abstract of: Ackermann RJ, Kemle KA. Death in a nursing home with active medical management. Ann Long Term Care 1999;7:313–319. 18. Hanson LC, Henderson M, Menon M. As individual as death itself: A focus group study of terminal care in nursing homes. J Palliat Med 2002;5:117–125. 19. Deutschman M. Interventions to nurture excellence in the nursing home culture. J Gerontol Nursing 2001;27:37– 43. 20. Farber S, Andersen W, Branden C, et al. Improving cancer pain management through a system wide commitment. J Palliat Med 1998;1:377– 385. 21. Norburn JEK, Nettles-Carlson B, Soltys FG, et al. Long-term care organizational challenges and strategies: Art vs. regulation. J Ger Nurs 1995;21:37– 44. 22. The SUPPORT Principle Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA 1995;274:1591–1598.
JAMDA – January/February 2003
Nursing homes (NHs) have long been a notable site of care for our elderly, and are becoming a notable site of death, as well. Two and one-half million Americans die annually, more than 17% of whom die in NHs.1 A significant number are also dying in alternative forms of residential long-term care (LTC), known by names such as domiciliary care, adult care, and board-and-care. In 1999, 1.5 million elderly resided in these residential care/assisted living (RC/AL) facilities,2 with estimates that they will surpass NHs as providers of care by 2010.3 These facilities, which provide room, board, and assistance with activities of daily living, are not licensed to provide medical care, yet with their annual resident mortality rate of 16 to 22%,4 they have become a significant site of death for our nation’s elderly. What little is known about end-of-life care in LTC is restricted to NHs, and suggests that this care is often subopCecil G. Sheps Center for Health Services Research (S.Z., P.D.S., C.M.M., A.S.), the School of Social Work (S.Z.), the Department of Family Medicine (P.D.S.), and the Department of Internal Medicine, University of North Carolina at Chapel Hill (L.H.). Address correspondence to Sheryl Zimmerman, PhD, Program on Aging, Disability and Long-Term Care, Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill, 101 Conner Drive, Suite 302, Campus Box 3386, Chapel Hill, NC 27599 –3386. E-mail: [email protected].
Copyright ©2003 American Medical Directors Association DOI: 10.1097/01.JAM.0000046935.64053.54 ORIGINAL STUDIES
as the product of perceived importance and need for improvement. Results: Both residential care/assisted living and nursing home staff reported a need for more staff education and nursing assistant time, as well as more use of volunteers. The two lowest ranked items for both facility types were involvement of hospice and encouragement for staff to attend funeral services. Nursing home staff perceived a greater need for improvement than residential care/assisted living staff in all 11 areas. Conclusion: Results underscore the staffing demands of end-of-life care across facility types, and staff desires to be able to provide quality care throughout the dying process. (J Am Med Dir Assoc 2003; 4: 23–26) Keywords: End-of-life care; nursing home; assisted living; staff perceptions.
timal. For example, inadequate palliative care leaves many dying residents in moderate to severe pain5–7; the decisionmaking role of the resident and family is limited8; and infrequent physician presence increases reliance on hospital emergency rooms to address acute medical problems.9 There are special concerns about RC/AL facilities as providers of endof-life care because they lack the medical expertise presumed necessary for optimal care. However, because they embrace a more social model of care, they may be superior to NHs in their provision of the psychosocial components of care.10 This study examines staff perceptions of end-of-life care, perceived need for improvement in care, and differences across settings of care. METHODS Sample A total of 99 staff members from a stratified random sample of 74 facilities (49 RC/AL and 25 NHs) in Florida, Maryland, New Jersey, and North Carolina provided perceptions of end-of-life care for 99 decedents participating in an ongoing cohort study.11 Residents 65 years of age and older were enrolled in the study between October 1997 and November 1998, and data on end-of-life care were obtained for those residents being followed and who died in the facility or within 3 days of discharge from the facility between August 1999 and November 2000. Respondents Zimmerman et al. 23
Table 1. Staff Perceptions of End-of-Life Care in Residential Care/Assisted Living (n ⫽ 55)
More staff education More nursing assistant time Counseling staff on dealing with death More social worker time More use of volunteers Staff available 24 hours Obtaining preferences Having psychologist or chaplain on staff Dying residents having private room Encouraging staff to attend service Involvement of hospice
Percent reporting very important
Percent reporting need for “some/a lot of” improvement
Weighted need for change* (Range: 1–9)
80.0 89.1 54.5 58.2 36.4 65.5 83.6 54.5 77.8 38.2 63.6
80.0 69.1 58.2 52.7 63.7 48.2 38.2 45.4 25.5 38.2 27.3
5.55 5.13 4.22 4.16 4.09 3.94 3.89 3.89 3.69 3.35 3.22
*The weighted need for change is calculated by multiplying the importance rating (1–3) by the need for improvement rating (1–3), where higher scores indicate greater need.
were the staff members who knew the resident best and provided services such as direct care, medication administration, communication with family, and service coordination during the last month of life. Seventy-eight of the staff (79% of respondents) were registered nurses (RNs) or licensed practical nurses (LPNs), 12 were administrators, and 9 were aides, social workers, or others. Nursing homes were significantly larger than RC/AL facilities (mean size 112.5 vs. 39.3 beds, P ⬍ 0.0001), older (mean age 25.8 vs. 12.5 years, P ⬍ 0.01), more likely to be not-for-profit (48.0% vs. 18.7%, P ⬍ 0.01), and had a higher Medicaid case mix (54.9% vs. 11.2%, P ⬍ 0.0001). All procedures were reviewed and approved by the Institutional Review Boards of the University of North Carolina at Chapel Hill and the University of Maryland, Baltimore. Measures Staff were interviewed by telephone about their perceptions of the process of institutional end-of-life care in 11 areas considered important, based on a review of the literature and expert opinion (see Table 1). Staff were asked to describe the importance of each area (not, somewhat, or very important), and how much improvement their facility needed in that area (none, some, or a lot.) Analyses The product of importance and need for improvement (both scored 1, 2, 3) was calculated for each of the 11 items, giving a “weighted need for change” score ranging from 1 to 9. Correlations between weighted need for change scores and facility demographics were calculated using Spearman’s rho. RESULTS Residential Care/Assisted Living Table 1 shows that more than three-quarters of the RC/AL staff felt that more nursing assistant time, obtaining preferences, staff education, and providing a private room were very important in the provision of end-of-life care. At least threequarters reported a need to provide more staff education, and 24 Zimmerman et al.
over one-half recommended increases in nursing assistant time, use of volunteers, counseling for staff, and social worker time. When weighting importance by need for improvement, more staff education ranked highest (weighted score ⫽ 5.55). More nursing assistant time was ranked next (weighted score ⫽ 5.13). Nursing Homes Table 2 shows that three-quarters or more of the NH staff felt that obtaining preferences, more nursing assistant time, having a staff psychologist/chaplain, more staff education, and hospice involvement were very important. More than three-quarters reported a need to increase volunteer use, staff education, and nursing assistant time. When weighting importance by the need for improvement, more nursing assistant time ranked highest (weighted score ⫽ 6.00). Eight of the remaining 10 items were endorsed by at least one-half of the staff as both very important and needing improvement. Residential Care/Assisted Living and Nursing Homes Two of the top three weighted items in both facility types were the same: more staff education and nursing assistant time. More use of volunteers was among the top five for both groups. The two lowest ranking items were identical for both facility types: hospice involvement and staff attending services. Nursing home staff perceived a greater need for improvement than RC/AL staff in all 11 areas. Facility Factors and Need for Improvement in End-of-Life Care Bivariate analyses identified whether four facility characteristics (size, age, proprietary status and Medicaid case mix) related to weighted perceptions of need for change. Facility size was the only variable that showed a consistent pattern (P ⬍ 0.05): the larger the facility, the more likely the staff were to report a need for more nursing assistant time (rho ⫽ 0.33) and having a psychologist/chaplain on staff (rho ⫽ 0.28) in JAMDA – January/February 2003
Table 2. Staff Perceptions of End-of-Life Care in Nursing Homes (n ⫽ 44)
More nursing assistant time More use of volunteers More staff education Staff available 24 hours Dying residents having private room More social worker time Counseling for staff on dealing with death Having psychologist or chaplain on staff Obtaining preferences Involvement of hospice Encouraging staff to attend service
Percent reporting very important
Percent reporting need for “some/a lot of” improvement
Weighted need for change* (Range: 1–9)
88.6 54.5 81.8 63.6 50.0 72.7 60.5 83.7 93.0 75.0 27.9
81.4 81.8 81.8 72.7 68.2 62.8 74.4 62.8 53.5 40.9 51.2
6.00 5.98 5.75 5.41 5.23 5.02 4.98 4.95 4.60 4.20 3.53
*The weighted need for change is calculated by multiplying the importance rating (1–3) by the need for improvement rating (1–3), where higher scores indicate greater need.
RC/AL; and a need for improved hospice involvement (rho ⫽ 0.47), more social worker time (rho ⫽ 0.40) and privacy (rho ⫽ 0.40) in NHs. DISCUSSION This study supports findings of needed improvement in end-of-life care, and adds to the literature by noting the areas deemed important by the very providers of that care. Staff across both NH and RC/AL settings report a need for more nursing assistant time and education. It seems that the effects of the widespread LTC staffing shortages12 are being felt in end-of-life care. Although it is not known why and in what way staff thought more time would improve care, it is likely that understaffing,13 coupled with high turnover,14 isolates dying residents and disrupts the consistency and continuity of care. It is also not known in what manner more staff education was thought to be beneficial, but the fact that respondents across settings spoke to its importance implies their desire to provide high quality end-of-life care. It is intriguing that both sets of respondents suggested increased use of volunteer services; to date, volunteerism has not been mentioned frequently in the LTC literature, and it may need to become more prominent as staffing shortages continue. The manner in which a volunteer pool less well trained than the workers could best augment services is worthy of exploration. Especially intriguing is that hospice services are not considered a solution to the staffing demands: both sets of respondents ranked increased hospice involvement toward the lower end of the scale, despite growing evidence that hospice improves the quality of end-of-life care for NH residents.15,16 Long-term care staff may have insufficient experience overcoming the barriers to working with hospice; alternately, they may prefer to maintain involvement with residents for whom they have been caring for years, rather than relinquish it to outsiders. This finding is similar to the observations of others, that long-term care staff tries to deliver end-of-life care themselves before accepting the need for outside help.17 Although some might interpret this as a defensive posture, it just as readily might indicate that staff value the relationship they have ORIGINAL STUDIES
developed with the decedent and want to be involved through the dying process in an important way.18 Viewing the worker’s role and involvement of hospice in this context, end-of-life culture change would best empower staff and increase collaboration,19 rather than consider hospice a replacement for ongoing relationships. The association between facility size and type and perceived need for improvement suggests that personalization of care is less common in larger facilities and NHs, and/or that there is more staff diversification and staffing shortages in these facilities, and/or that staff in larger facilities and NHs have greater expectations for end-of-life care. In addition, it seems to call for a more systemic response to change care in larger NHs and RC/AL facilities. However, whether and to what extent the perceived deficits in the provision of end-oflife care in any facility type actually affect the quality of the dying experience for residents and their families is unknown. The staff perceptions presented in this paper suggest areas of focus for improving end-of-life care in long-term care institutions. The National Institute of Aging has funded further study in these and other facilities to better understand the implications of the findings—to learn, for example, how staffing patterns relate to outcomes of care, and the areas in which staff require more education, and the manner in which relations with hospice unfold, and the role that volunteers can fill—so that they can be used to improve long-term end-of-life care. Although the extent to which staffing and education impact the quality of care is not yet determined, the near universal call for improvement by study respondents indicates perceived need. Attention to staffing and education seems an achievable firststep toward the organizational change that has been heralded as central20 –22 to quality improvement in end-of-life care. ACKNOWLEDGMENTS The authors wish to acknowledge the cooperation of the facilities, residents and families participating in the Collaborative Studies of Long-Term Care (CS-LTC), as well as the project coordination of Verita Custis Buie and data collection efforts of Charlene Riedel-Leo and the late Mary Alice Zimmerman et al. 25
McGurrin. This research was supported by grants from the Retirement Research Foundation (99 –121) and the National Institute on Aging (RO1 AG13871 and RO1 AG13863). REFERENCES 1. Brock DB. Foley DJ. Demography and epidemiology of dying in the US with emphasis on deaths of older persons. Hospice J 1998;13:49 – 60. 2. General Accounting Office, United States Congress. Assisted Living: Quality of Care and Consumer Protection Issues in Four States. Report to congressional requesters. Washington, DC: US Government Printing Office, 1999. 3. Meyer H. The bottom line on assisted living. Hosp Health Netw 1998; 72:22–26. 4. National Center for Assisted Living. Facts and Trends: The Assisted Living Source Book. Annapolis, MD, 1998. 5. Bernabei R, Gambassi G, Lapane K, et al. Management of pain in elderly residents with cancer. JAMA 1998;279:1877–1882. 6. Hanson LC, Henderson M, Schulman A, et al. Needs of the dying in nursing homes. J Am Geriatr Soc 1999;47:S9. 7. Singer P, Martin DK, Kelner M. Quality end-of-life care: Patient’s perspective. JAMA 1999;281:163–198. 8. Bradley E, Peiris V, Wetle T. Discussions about end-of-life care in nursing homes. J Am Geriatr Soc 1998;46:1235–1241. 9. Ackermann RJ. Nursing home practice: Strategies to manage most acute and chronic illnesses without hospitalization. Geriatrics 2001;56:37– 48. 10. Morgan LA, Eckert JK, Lyon SM, eds. Small Board-and-Care Homes: Residential Care in Transition. Baltimore and London: The Johns Hopkins University Press, 1995. 11. Zimmerman S, Sloane PD, Eckert, JK, eds. Assisted Living: Needs, Practices and Policies in Residential Care for the Elderly. Baltimore: Johns Hopkins University Press, 2001.
26 Zimmerman et al.
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