Symptom experience of dying long-term care residents.

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.