Symptom Experience of Dying Long-Term Care Residents

• Published in: Journal of the American Geriatrics Society (JAGS) 2008-01, Vol.56 (1), p.91-98
• Main Authors: Hanson, Laura C., Eckert, J. Kevin, Dobbs, Debra, Williams, Christianna S., Caprio, Anthony J., Sloane, Philip D., Zimmerman, Sheryl
• Format: Article
• Language: English
• Subjects: Aged, 80 and over; Assisted living facilities; Biological and medical sciences; Caregivers; Cause of Death; Ethics; Female; Follow-Up Studies; General aspects; Humans; long-term care; Long-Term Care - methods; Long-Term Care - standards; Male; Medical sciences; Nursing homes; Older people; Palliative care; Palliative Care - methods; Palliative Care - standards; Professional-Family Relations - ethics; Prognosis; Psychometrics - methods; Public health. Hygiene; Public health. Hygiene-occupational medicine; Quality of Health Care; Retrospective Studies; symptoms; Teaching. Deontology. Ethics. Legislation; Terminal Care - methods; Terminal Care - standards; United States
• ISSN: 0002-8614; 1532-5415
• DOI: 10.1111/j.1532-5415.2007.01388.x

OBJECTIVES: To describe the end‐of‐life symptoms of nursing home (NH) and residential care/assisted living (RC/AL) residents, compare staff and family symptom ratings, and compare how staff assess pain and dyspnea for cognitively impaired and cognitively intact residents. DESIGN: After‐death interviews. SETTING: Stratified random sample of 230 long‐term care facilities in four states. PARTICIPANTS: Staff (n=674) and family (n=446) caregivers for dying residents. MEASUREMENTS: Interview items measured frequency and severity of physical symptoms, effectiveness of treatment, recommendations to improve care, and staff report of assessment. RESULTS: Decedents' median age was 85, 89% were white, and 77% were cognitively impaired. In their last month of life, 47% had pain, 48% dyspnea, 90% problems with cleanliness, and 72% symptoms affecting intake. Problems with cleanliness, intake, and overall symptom burden were worse for decedents in NHs than for those in RC/AL. Treatment for pain and dyspnea was rated very effective for only half of decedents. For a subset of residents with both staff and family interviews (n=331), overall ratings of care were similar, although agreement in paired analyses was modest (kappa=−0.043–0.425). Staff relied on nonverbal expressions to assess dyspnea but not pain. Both groups of caregivers recommended improved application of treatment and increased staffing to improve care. CONCLUSION: In NHs and RC/AL, dying residents have high rates of physical symptoms and need for more‐effective palliation of symptoms near the end of life.