In 1982, the Tax Equity and Fiscal Responsibility Act (TEFRA) established a Medicare Hospice Benefit, with Medicare remaining the primary payer for hospice services in the United States [1]. Regulations for Medicare specifically require hospices to conduct an initial and ongoing bereavement risk assessment of the patient’s primary caregivers, incorporate these assessments into the plan of care, provide at least one follow-up post-death contact with family or friend caregivers, and have an organized program established to provide bereavement services to caregivers for up to a year following the patient’s death [11]. Medicare 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 [11].

Yet though Medicare-certified hospice programs are required to provide support to bereaved caregivers, services are not separately billable [12, 13], resulting in limited financial incentives to provide more than a minimal level of bereavement care. Historically, bereavement programs have therefore been seen as the “poor stepchild” of hospice services [13]. A 2003 survey of US hospice found that in 65% of hospices, bereavement services accounted for less than 5% of the budget, while bereavement services accounted for 5–10% of the budget in 27% of hospices. Only 8% reported that more than 10% of their budget went to bereavement services. The same survey also identified lack of sufficient staff time, funding pressures, and lack of personnel as key obstacles to bereavement service delivery [14].

In addition, Medicare reimbursement is not tied to the level or quality of services provided to caregivers and the specific services provided are left to the discretion of each hospice. Though the National Hospice and Palliative Care Organization has suggested guidelines for bereavement practice in its standards of practice for hospice programs [15], there are no federal standards regarding the types of services that must be offered [12]. As a result, there is great variability in bereavement services provision, with some hospice providing minimal services and others providing more comprehensive services [12].

Little is known about the scope and intensity of hospice bereavement services provided to family and friend caregivers, though a few large surveys have examined hospice bereavement practices. The first of these was conducted nationally in 1986 [13] and then replicated nationally in 2002 [14]. Most recent was a 2008–2009 national hospice survey [16, 17]. Statewide surveys have been conducted in California [12] and Ohio [18]. These surveys indicate that almost all hospices (over 95%) offer bereavement support services [16, 17] and that bereavement services were typically in place almost as long as the hospice was in existence [14]. Types of services consistently offered include telephone calls to the bereaved, condolence letters sent at the time of the death and at anniversaries, informational materials on the typical grieving process and how to cope with grief, home visits by bereavement staff, grief workshops and grief support groups, individual counseling [12, 14–16]. Less intensive services are most common; in the most recent national survey, which surveyed 591 hospices, 98% of hospices offered telephone calls, 98% sent cards at the time of death and/or anniversary of the death, 94% provided brochures or other educational materials about grief, 93% offered home visits, 88% provided memorial services, 79% provided grief support groups, 71% provided individual therapy, and 51% provided group therapy [16]. Creative grief groups are also common; here, creative artistic activities such as art, drama, writing, creating a collage, and making music are used to help express and process grief in a group setting [19].

Staffing of bereavement services is varied, though social workers are most often involved. In the 2003 national survey, those involved in coordinating bereavement services were most likely to have a background in social work (44%), followed by “mixed disciplines” (15%). “Mixed disciplines” included a combination of social work, religion, counseling, psychology, or nursing. Similarly, the California survey found that bereavement staff were typically M.S.W.s (29%) followed by clergy (19%) [12].

In large part because of the limited funding for bereavement services, staff size tends to be small. While national surveys have found that the large majority of individuals responsible for coordination of bereavement services (98%) were salaried at some level [14], only 33% of hospices had a full-time salaried position for a bereavement coordinator [13, 14]. Moreover, most hospices (62%) had only one bereavement staff person, with only 12% of them having more than three bereavement staff [14]. Understaffing may increase reliance on volunteers and the California survey found that volunteers accounted for almost a quarter of bereavement program staff [12].

There also appears to be significant variation in services provided by hospice size [12, 16]. For example, the California survey found that large hospices were more likely than small hospices to offer grief support groups (51% vs. 29%) and volunteer visits (89% vs. 75%) [12]. The most recent national survey found that hospices providing care to more than 50 patients per day were significantly more likely than the hospices with fewer than 20 patients per day to provide comprehensive bereavement services, even after adjusting for other hospice characteristics [16].

Many types of grief support groups are offered in hospice settings, ranging from groups open to any family member or those focused on specific types of loss (e.g., partner loss, child loss) or populations (e.g., gay men, older women). Groups may be open to new members each session, or closed, and may have a set number of sessions or be offered continuously [20]. Typically, grief support group activities include sharing one’s bereavement experiences, particularly their feelings about the loss, sharing pictures and stories about the deceased, and education about the grieving process [20]. Online grief support groups, using message boards, email groups, or chat rooms, are also increasingly common [21], though they have not been well studied among caregivers of hospice patients.

Regardless of their structure, grief groups are theorized to be effective by instilling hope, in part by observing others who are progressing. Groups also assist in enhancing universality, showing people that they are not alone in their feelings. Groups can also offer education about the grieving process that can help clients know what to expect from their grief. Groups can also enhance feelings of altruism by allowing them to give others in the group. Groups can also assist in learning more ways to effectively communicate about one’s loss, helping further the grief process. In addition, group members and the therapist can model effective ways to grieve. Further, groups can offer a sense of cohesiveness and self-acceptance [20, 22]. In keeping with these intentions, identified reasons that people join grief support groups include a need to share their grief with people who have similar experiences [23, 24], to receive emotional support, and to seek relief from feelings of distress and isolation [24, 25].

Grief support groups have some evidence of efficacy; for example, parents who attended a grief support group for child loss were significantly more likely to find meaning in those loss than parents who did not attend groups [26]. Groups appear to be particularly helpful to those lacking other forms of social support [24, 27]. Some qualitative research has also been conducted on why hospice grief support group attendees found groups helpful. Interviews with group attendees indicated multiple beneficial aspects including being able to share their experience, getting to be with people with similar experiences, being reassured that they are not alone, being reassured not to fear their feelings, and having the opportunity to say things that they could not say to family and friends. Participants also reported that their understanding of grief changed through attending the group [28]. Another study found that those attending groups sought normalization of their experience, validation, healing, community, and an opportunity for sharing. The opportunity to mourn with others in similar situations and education on the grief process were also desired [23]. Despite these promising data, much more research is however needed on the efficacy of grief support groups in hospice settings.

Though most family and friend caregivers of deceased hospice patients recover from initial reactions of acute grief and return to pre-loss functioning within about 6 months of the death [29], a sizable minority will develop bereavement-related mental health disorders. Complicated Grief (CG) and depression are among the most common. Similarly to other chapters, despite slight differences in diagnostic criteria, we will assume that CG, prolonged grief disorder, and persistent complex bereavement disorder are referring to the same condition. CG is characterized by symptoms of reactive distress to death (e.g., disbelief or bitterness) and disruption in social relationships or identity [30], while depression is characterized by low mood and loss of interest in usual activities [30]. About 13% of family members of deceased hospice patients experience depression and approximately 11% experience CG [31, 32]. Depression and CG are both associated with a number of negative outcomes, including chronic functional impairment, hypertension, smoking, sleep impairment, and suicidal ideation [5, 33–37]. Studies have identified predictors of psychological distress in hospice caregivers to include younger age, symptoms of depression before the death, and lower satisfaction with social support [32].

Hospices are uniquely positioned to screen for both CG and bereavement-related depression because they provide care prior to and during the patient’s death. As noted above, hospices are required to do risk assessments for a range of poor bereavement outcomes, including psychological distress, and the 2002 national survey found that 92% of hospices surveyed did so [14]. The 2008–2009 national hospice survey found that 92% screen family or friend caregivers members for depression and 97% provide screening for CG at some point after the hospice patient’s admission [16, 17, 38]. However, no data could be identified on the types of screening conducted. Although well-validated screens, including the Inventory of Complicated Grief [35] and the Patient-Health Questionnaire-9 [39], can accurately identify bereavement-related mental health disorders, their use in hospice is unknown.

Hospices also appear to offer some treatment for bereavement-related mental health disorders , with the most recent national survey finding that 71% of hospices provided individual bereavement therapy, 51% provided group therapy, while 79% provided either group or individual therapy [16, 38]. As is the case with all bereavement services, hospice size was significantly associated with services, with the hospices with largest patient volumes most likely to provide screening and access to bereavement therapy [16, 38]. However, no data is available on whether therapy addressed CG or depression in particular. Effective individual and group psychotherapeutic treatments for both CG and bereavement-related depression have been developed and piloted, including Shear et al.’s cognitive-behavioral “Complicated Grief Treatment” (CGT) and Behavioral Activation (for depression) have been tested in randomized clinical trials and found to be effective [40, 41]. Shear’s treatment is 16 sessions long and is based on exposure treatment for post-traumatic stress disorder; treatment activities include retelling the story of the death in the present tense and confronting reminders of the loss that one may have been avoiding. Chapter 13 describes in more detail CGT, and cognitive behavioral approaches to treating CG. Behavioral activation targets symptoms of depression and mainly involves scheduling activities to help the bereaved individual reengage in their daily lives. No studies appear to have examined whether these treatments are used in hospice, however.