Background: Few studies have examined physician-family caregiver communication at the end of life, despite the important role families have in end-of-life care decisions. We examined family caregiver reports of physician communication about incurable illness, life expectancy, and hospice; the timing of these discussions; and subsequent family understanding of these issues.

Objective To identify factors associated with caregiver burden among those caring for terminally ill patients with cancer. Design Cross-sectional study of interviews with primary caregivers (n=206) of consecutive patients with cancer enrolled in the largest hospice in Connecticut. Methods Data were collected on the caregivers’ sociodemographic characteristics, social network index, and number of restrictions in their own activities due to their caregiving role. The outcome was a nine-item questionnaire adapted from the Zarit Burden Inventory. Results The highest burden was reported among caregivers with more limited social networks (OR 1.38, CI 1.02–1.87), more restrictions in their daily activities (OR 1.35, CI 1.13–1.61), and who were younger (OR 1.46, CI 1.10–1.93). Conclusions Variations exist in the intensity of caregiver burden based on subjective experiences and social support, rather than on the amount of assistance provided. Clinicians should consider factors such as these when targeting caregivers for interventions to alleviate burden.

The findings identify a target group for whom bereavement services might be most needed. The authors also suggest that earlier hospice enrollment may help reduce the risk of major depressive disorder during the first 6-8 months of bereavement, which raises concerns about recent trends toward decreasing lengths of hospice enrollment before death.

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