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J Am Geriatr Soc. 2008 Jan;56(1):91-8. Epub 2007 Aug 28.

Symptom experience of dying long-term care residents.

Author information

1
Cecil G. Sheps Center for Health Services Research, and Division of Geriatric Medicine, Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599, USA. lhanson@med.unc.edu

Abstract

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.

[Indexed for MEDLINE]

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