• symptoms;
  • long-term care;
  • palliative care

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.