Symptom Experience of Dying Long-Term Care Residents

Authors

  • Laura C. Hanson MD, MPH,

    1. From the *Cecil G. Sheps Center for Health Services Research, Division of Geriatric Medicine, Department of Medicine, Department of Family Medicine, and School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaDepartment of Sociology and Anthropology, Erickson School of Aging Studies, University of Maryland Baltimore County, Baltimore, Maryland§School of Aging Studies, University of South Florida, Tampa, Florida.
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  • J. Kevin Eckert PhD,

    1. From the *Cecil G. Sheps Center for Health Services Research, Division of Geriatric Medicine, Department of Medicine, Department of Family Medicine, and School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaDepartment of Sociology and Anthropology, Erickson School of Aging Studies, University of Maryland Baltimore County, Baltimore, Maryland§School of Aging Studies, University of South Florida, Tampa, Florida.
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  • Debra Dobbs PhD,

    1. From the *Cecil G. Sheps Center for Health Services Research, Division of Geriatric Medicine, Department of Medicine, Department of Family Medicine, and School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaDepartment of Sociology and Anthropology, Erickson School of Aging Studies, University of Maryland Baltimore County, Baltimore, Maryland§School of Aging Studies, University of South Florida, Tampa, Florida.
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  • Christianna S. Williams PhD,

    1. From the *Cecil G. Sheps Center for Health Services Research, Division of Geriatric Medicine, Department of Medicine, Department of Family Medicine, and School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaDepartment of Sociology and Anthropology, Erickson School of Aging Studies, University of Maryland Baltimore County, Baltimore, Maryland§School of Aging Studies, University of South Florida, Tampa, Florida.
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  • Anthony J. Caprio MD,

    1. From the *Cecil G. Sheps Center for Health Services Research, Division of Geriatric Medicine, Department of Medicine, Department of Family Medicine, and School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaDepartment of Sociology and Anthropology, Erickson School of Aging Studies, University of Maryland Baltimore County, Baltimore, Maryland§School of Aging Studies, University of South Florida, Tampa, Florida.
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  • Philip D. Sloane MD,

    1. From the *Cecil G. Sheps Center for Health Services Research, Division of Geriatric Medicine, Department of Medicine, Department of Family Medicine, and School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaDepartment of Sociology and Anthropology, Erickson School of Aging Studies, University of Maryland Baltimore County, Baltimore, Maryland§School of Aging Studies, University of South Florida, Tampa, Florida.
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  • Sheryl Zimmerman PhD

    1. From the *Cecil G. Sheps Center for Health Services Research, Division of Geriatric Medicine, Department of Medicine, Department of Family Medicine, and School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaDepartment of Sociology and Anthropology, Erickson School of Aging Studies, University of Maryland Baltimore County, Baltimore, Maryland§School of Aging Studies, University of South Florida, Tampa, Florida.
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  • Presented at the American Academy of Hospice and Palliative Medicine National meeting, February 8, 2006, Nashville, Tennessee.

Address correspondence to Laura C. Hanson, MD, MPH, Division of Geriatric Medicine, CB 7550, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599. E-mail: 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.

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