Original studySymptom Experiences of Residents Dying in Assisted Living
Section snippets
Settings
Following study approval by the Oregon Health & Science University Institutional Review Board, participants were recruited by the administrative staffs of 6 proprietary assisted-living 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
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
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
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
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.
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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.