Caring for grieving family members: results from a national hospice survey.

Background: A founding principle of hospice is that the patient and family is the unit of care; however, we lack national information on services to family members. Although Medicare certification requires bereavement services be provided, reimbursement rates are not tied to the level or quality of care; therefore, limited financial incentives exist for hospice to provide more than a minimal benefit.

Objectives: To assess the scope and intensity of services provided to family members by hospice.

Research Design: We fielded a national survey of hospices between September 2008 and November 2009.

Participants: A national sample of US hospices with an 84% response rate (N=591).

Measures: Bereavement services to the family, bereavement services to the community, labor-intensive family services, and comprehensive family services.

Results: Most hospices provided bereavement services to the family (78%) and to the community (76%), but only a minority of hospices provided labor-intensive (23%) or comprehensive (27%) services to grieving family members. Larger hospice size was positively and significantly associated with each of the 4 measures of family services. We found no significant difference in provision of bereavement services to the family, labor-intensive services, or comprehensive services by ownership type; however, nonprofit hospices were more likely than for-profit hospices to provide bereavement services to the community.

Conclusions: Our results show substantial diversity in the scope and intensity of services provided to families of patients with terminal illnesses, suggesting a need for clearer guidance on what hospices should provide to exemplify best practices. Consensus within the field on more precise guidelines in this area is essential.