Final Transitions: Family Caregiving at the End of Life

Abstract

BACKGROUND: This study aimed to understand how caregivers make the transition to end-stage caregiving and to illuminate its unique aspects using a stress process model. METHODS: Qualitative in-depth interviews were conducted with 74 caregivers of a family member who had been receiving hospice care for at least 2 weeks. Interviews were tape recorded, transcribed, and coded for emergent themes using constant comparative analysis. RESULTS: End-stage caregiving was characterized in the sample as (1) comprehension of terminality (the interrelationship of information, physical and cognitive decline, and personality change and role losses), (2) near-acute care, (3) executive functions, and (4) final decision making. The comprehension of terminality emerged from three interrelated experiences: receiving and assimilating concrete information about the illness, observing the progression of the disease, and observing the personality change and role loss. The primary stressors (unique end-stage caregiving tasks) were providing near-acute care, assuming an executive function, and beginning and final decision making. The secondary stressors were family role conflict, work conflict, and financial strain. Resources, such as intrinsic and extrinsic religious and faith practices and social support, were identified. Negative outcomes included intense emotional responses, and positive outcomes included heightened development of meaning making. CONCLUSION: The findings suggest that palliative care professionals have important opportunities to provide information and support to family caregivers during the final stages of the patient's terminal illness.