Increasing numbers of Americans are receiving care within managed care organizations (MCOs), and the ability of MCOs to provide high-quality end-of-life care is under greater scrutiny. Although many anecdotal reports have been published, almost no research has been published on patient/family experiences with end-of-life care in MCOs.
We undertook a qualitative study of end-of-life care during 1996 and 1997 in the closed-panel staff-model, not-for-profit, health center division of Harvard Pilgrim Health Care. We collected and analyzed data from five focus groups composed of family members of patients who had died during the preceding year (n = 22) and four focus groups composed of clinicians and administrators who routinely care for dying patients and/or have responsibility for managing end-of-life care resources and systems (n = 31).
Problems noted in this setting that are also reported in other health care settings included divergent expectations and unclear primary care/specialist roles and hospice/primary physician roles, difficulties in transitions across care settings, ineffective communication between physicians and patients/families about end-of-life care preferences, and lack of systematic attention to bereavement care. More unique to managed care settings were problems related to the absence of a consistently applied hospice benefit and concerns about the impact of cost containment on the quality of care, reflecting the conflict between the dual roles of MCOs as both insurers and providers of care.
Our findings highlight specific issues involved in providing quality end-of-life care in MCOs and suggest areas for further exploration.