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Challenges to Providing End-of-Life Care to Low-Income Elders With Advanced Chronic Disease: Lessons Learned From a Model Program

Correspondence: Address correspondence to Betty J. Kramer, PhD, University of Wisconsin–Madison School of Social Work, 1350 University Avenue, Madison, WI 53706. E-mail: ejkramer{at}wisc.edu

Purpose: This study explored the challenges in providing end-of-life care to low-income elders with multiple comorbid chronic conditions in a fully "integrated" managed care program, and it highlighted essential recommendations. Design and Methods: A case-study design was used that involved an extensive analysis of qualitative data from five focus groups with interdisciplinary team members, two in-depth interviews with administrators, and open-ended survey responses from social workers detailing death experiences of 120 elders. Results: Seven major themes characterized primary end-of-life care challenges: (a) the nature of advanced chronic disease; (b) the incapacity of support systems; (c) barriers to honoring care preferences; (d) challenges with characteristics and needs of participants; (e) needs of complex family systems; (f) barriers with transitions; and (g) barriers with culture and language. Implications: The lessons learned suggest recommendations with implications for program development, practice, policy, and future research.

Key Words: End of life • Palliative care • Managed care • Case-study design • Qualitative methods

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