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

One of the fundamental guiding principles of hospice is that the patient and family is the unit of care,1 reflecting the critical importance of including surviving family in the care of people with terminal illnesses. Consistent with this principle, services for family members, both before and following the patient’s death, are recognized as core components of high quality palliative care.2 This holistic model of caring for grieving family members dates back to the historical roots of the hospice movement in the United Kingdom, and was adopted by American hospices.3,4 Medicare, the primary payer of hospice care in the U.S., defines bereavement counseling as emotional, psychosocial, and spiritual support and services provided before and after the death of the patient to assist with issues related to grief, loss and adjustment.5 Centers for Medicare & Medicaid Services (CMS) (2010) specifically require hospices to provide an initial and ongoing bereavement assessment of the needs of the patient’s family members and these assessments must be incorporated into the plan of care (§418.54(c)(7)). In addition, hospices must have an organized program established to provide bereavement services to family members for up to a year following the patient’s death (§418.64(d)).6 Evidence indicates that supportive services for grieving families can improve their post-loss adjustment,7,8,9 particularly if provided soon after a loss7 and to those at risk for prolonged or complicated grief.10,11,12,13,8 Despite the importance of serving families, we know little about the scope and intensity of hospice services provided to family members. Although Medicare certified hospice programs are required to provide support to bereaved family members, services are not separately billable, and the specific services provided are left to the discretion of the hospice. Because Medicare reimbursement is not tied to the level or quality of services provided to family members, limited financial incentives exist to provide more than a minimal level of care. One prior study by Carlson (2007) examined caregiver support services provided by hospices and found that although 59% of hospices provided personal care services, only 13% provided homemaker/household services and 7% provided respite care.14 A second study conducted with California hospices found substantial variation in the types of bereavement services provided.15 However, both of these studies focus on only a subset of family services and used data from more than a decade ago. Thus, we have limited information on the degree to which hospices provide care to families and how hospices may differ in their provision of family services. Accordingly, we conducted a national survey of hospices to better understand the scope and intensity of services provided to family members. We examined whether family services differed by hospice ownership status or by other organizational characteristics including: hospice chain affiliation, vertical integration with non-hospice health care facilities, age, region of the country, urbanicity, size (i.e., patients per day), patient-to-staff ratio, religious affiliation, concern about losing market share to competitors, and proportion of revenue from Medicare. We hypothesized that non-profit hospices would provide a richer array of services compared with for-profit hospices given the strong historical commitment to family-based care as hospice first emerged (under almost exclusively not-for-profit auspices) in the 1970s. Prior research indicated that hospice ownership affects length of stay, patient diagnosis, and other important outcomes,16,17,18 but no information is currently available on how ownership affects the scope of care provided to family members. In addition to the research on ownership, prior research has indicated that hospice organizational capacity including size, chain affiliation, years providing hospice care, nd share of revenue from Medicare are associated with hospice enrollment and disenrollment practices.19,20,21 Thus, we hypothesized that the organizational capacity of the hospice might be associated with available resources for providing services to family members. To test these hypotheses, we examined whether larger hospices, chain hospices, vertically integrated hospices, hospices with lower patient-to-staff ratios, older hospices and hospices in urban areas were more likely to provide comprehensive services to family member. Alternatively, financial constraints might prompt some hospices to provide a minimum level of bereavement care. Those with a smaller share of revenue from Medicare may provide fewer services to family members, in an effort to conserve scarce resources. In addition, we expected that religiously affiliated hospices might be predisposed toward providing more comprehensive bereavement services for families due to their greater emphasis on spirituality in the face of death. In prior work, researchers have speculated that religious affiliation might be associated with quality of care differences.22 Finally, we hypothesized that hospices reporting a concern about losing market share would provide more services to families. Findings from this study may be important to highlight key gaps in family services.