Symptom Experience of Dying Long-Term Care Residents

Hanson, Laura C. MD, MPH
Eckert, J. Kevin PhD
Dobbs, Debra PhD
Williams, Christianna S. PhD
Caprio, Anthony J. MD
Sloane, Philip D. MD
Zimmerman, Sheryl PhD

From the ^*Cecil G. Sheps Center for Health Services Research; ^†Division of Geriatric Medicine, Department of Medicine; ^∥Department of Family Medicine; ^¶School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina; ^‡Department 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.

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: [email protected]

Presented at the American Academy of Hospice and Palliative Medicine National meeting, February 8, 2006, Nashville, Tennessee.

Journal of the American Geriatrics Society 56(1):p 91-98, January 2008.

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.