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.
