Challenges to providing end-of-life care to low-income elders with advanced chronic disease: lessons learned from a model program

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.