Caring for Grieving Family Members: Results From a National Hospice Survey

• Published in: Medical care 2012-07, Vol.50 (7), p.578-584
• Main Authors: Barry, Colleen L., Carlson, Melissa D. A., Thompson, Jennifer W., Schlesinger, Mark, McCorkle, Ruth, Kasl, Stanislav V., Bradley, Elizabeth H.
• Format: Article
• Language: English
• Subjects: Bereavement; Cross-Sectional Studies; Death; Families & family life; Family; Family members; Grief; Hospice care; Hospice Care - organization & administration; Hospice Care - statistics & numerical data; Hospital admissions; Humans; Market share; Medicare; Medicare - statistics & numerical data; Nonprofit organizations; Ownership - statistics & numerical data; Palliative care; Quality of care; Religion; Religious identity; Residence Characteristics - statistics & numerical data; Social support; United States
• ISSN: 0025-7079; 1537-1948
• DOI: 10.1097/MLR.0b013e318248661d

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.