Bereavement Support Services in a National Sample of Hospices: A Content Analysis

Although the Medicare Hospice Benefit mandates that hospices offer bereavement support services to families for at least 1 year following the death of a patient, it does not stipulate which services they should offer. As a result, little is known about what bereavement support services hospices provide, especially on a national scale. The current study recruited a national sample of hospice representatives who responded to an open-ended question that asked, “What types of bereavement support services does your hospice provide to families?” Seventy-six viable responses were recorded and content analyzed. Four overarching domains emerged: (a) timing of support, (b) providers of support, (c) targets of support, and (d) formats of support. Other notable findings included the underutilization of bereavement support services and the utility of informal support formats. These findings present implications for future study regarding which specific aspects of hospice bereavement support services are most beneficial to bereaved families.

Governed by the Centers for Medicare & Medicaid Services (CMS), hospice is often regarded as the best end-of-life care in the U.S. (Teno et al., 2004). Hospice supports approximately 1.5 million individuals who are terminally ill and their families annually by providing comprehensive medical treatment geared to enhance comfort (National Hospice and Palliative Care Organization [NHPCO], 2020). Although bereavement services constitute one primary mechanism of support that hospice provides for family members, there is a lack of current information about what types of hospice bereavement services are delivered across the U.S. (Ghesquiere, 2018). The current study aimed to fill this gap in the literature.

Bereavement and Grief
Bereavement typically refers to the period of time that immediately follows a death (Stroebe et al., 2008). Although the exact span of time is not specified, the term is commonly used to describe the postmortem mourning period. Relatedly, grief describes one's personal reaction to a loss, such as the death of a loved one (Stroebe et al., 2008). Although grief is a normal and expected reaction to a significant loss, the ways in which individuals cope with grief vary substantially. There is a vast body of literature on the detrimental effects of unhealthy coping with grief. Associations with increased mental health concerns (Allen et al., 2013;Holtslander & McMillan, 2011;Jonasson et al., 2009;Thomas et al., 2014), decreased social support (Ghesquiere, 2014), and decreased income and employment status (van den Berg et al., 2017) render unhealthy coping with grief a significant threat to public health. Research suggests targeted, supportive strategies can be leveraged to promote healthy grieving during bereavement (Currier et al., 2008;Neimeyer et al., 2010;Worden, 2018).

The Medicare Hospice Benefit
To support healthy coping with grief, CMS requires hospices to offer bereavement counseling to families for a minimum of 1 year following the death of a patient, as part of the Medicare Hospice Benefit (Public Health, 2019). 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" (Public Health, 2019, p. 338). However, several factors related to the Medicare Hospice Benefit complicate the delivery of maximal support. First, hospices are typically reimbursed through a per diem rate while the hospice patient is alive and receiving care. Thus, hospice providers are not reimbursed by Medicare or other insurers for the bereavement counseling they deliver (Public Health, 2019). As a result, hospices must weigh quality service provision against practical and financial constraints. To compensate for this lack of reimbursement, hospices often rely upon philanthropic support, or creative, low-cost bereavement support strategies (O'Neill et al., 2008;Pietroburgo, 2006). Second, the Medicare Hospice Benefit does not stipulate what, or how, bereavement services should be implemented. As a result, the implementation of hospice bereavement services is highly variable and inconsistent in terms of what services are provided, when they are provided, and by whom and to whom they are provided (Dean et al., 2014;Demmer, 2003;Foliart et al., 2001;Ghesquiere et al., 2015). Although the NHPCO (2018) offers bereavement guidelines, the lack of federally mandated standardization may contribute to confusion about what services a given hospice can offer (Cagle et al., 2016). Given that only 25% of hospice caregivers utilize bereavement services (Ghesquiere et al., 2016), families with longer-term needs may be disadvantaged if hospices are unable to extend their bereavement support beyond Medicare's 1year requirement (Public Health, 2019).

Bereavement Support Services
Although past studies have shown that hospices offer a myriad of bereavement services (Barry et al., 2012;Demmer, 2003;Foliart et al., 2001), there does not appear to be a clear indication of the full range of these services (Ghesquiere, 2018). To our knowledge, only two prior studies have considered general hospice bereavement services on a national scale in the U.S. (Barry et al., 2012;Demmer, 2003). Results from these studies demonstrated that common hospice bereavement services included individual and group counseling, phone contacts, and mailed materials (Barry et al., 2012;Demmer, 2003).

The Current Study
Data collection for the more recent study (Barry et al., 2012) concluded in 2009, marking roughly a decade since more recent exploration. The hospice business model has experienced many changes since that time. Notable changes include a trend toward for-profit status, consolidation of smaller agencies, and growth of the overall industry (NHPCO, 2020). Consequently, an updated examination of hospice bereavement services is warranted. To this end, we recruited a national sample of hospice providers to qualitatively explore the types of bereavement support services that hospices offer.

Sampling Procedures
The current study stems from a larger, cross-sectional study that surveyed a national sample of hospice providers regarding medication diversion in hospice (Cagle et al., 2020). To recruit this national sample, we randomly selected 600 Medicare-certified hospice providers from the 2015 Provider of Services File (CMS, 2018). Selected hospices were proportionately stratified by state and profit status. Then, we contacted selected agencies by phone to provide study information and ascertain study eligibility, per our predetermined inclusion criteria. We excluded agencies that were not actively providing hospice care. We conducted a second round of random selection within the same strata to replace hospices that did not meet inclusion criteria (n ¼ 67). Our targeted sample consisted of hospice representatives who were knowledgeable about their agency's policies and practices regarding pain management. Participants were offered a $40 credit that could be applied toward organizations supporting continuing education for end-of-life care providers. A total of 371 hospice representatives completed surveys (response rate ¼ 62%). At the conclusion of the larger survey, these 371 participants were asked if they would be willing to complete two additional, open-ended questions. Those confirming continued participation (n ¼ 330, 88.9%) were provided two randomly generated questions from a repository of eight. Seventy-seven of the consenting 330 participants (23.3%) responded to the current study's question about the types of bereavement services provided by their agency. One of these responses was not viable for analysis, yielding a final analytic sample size of 76. Figure 1 illustrates the sampling procedures. The current study received exempt approval from the University of Maryland, Baltimore Institutional Review Board.

Data Collection
Participants were given the option to complete the survey through either a phone interview with a member of the research team or in a self-administered online format. We used a Universal Presentation (Martin et al., 2007) approach to increase consistency and translatability across formats. Phone-based interviews typically lasted 20-25 minutes. Online surveys were conducted through Qualtrics. Data collection occurred from June 2018 to September 2018, for a total of 15 weeks.

Measures
Agency size was assessed based on the reported hospice patient census at the time of data collection. Hospices were subsequently categorized as small (1-25), medium (26-100), or large ( 101). Medicare data from the 2015 Provider of Services File (CMS, 2018) were used to determine each hospice's profit status and location. Locations were then categorized by corresponding U.S. Census region. The setting of the majority of hospice care provision, participants' job role, and participants' duration of employment in months were collected via self-report.
The current study focused on one randomly generated, open-ended question that participants answered at the conclusion of the original survey (Cagle et al., 2020). This question was presented in a structured interview format and asked, "What types of bereavement support services does your hospice provide to families?" Responses provided over the phone were audio-recorded and transcribed verbatim. The accuracy of transcripts was assessed by the project manager who reviewed a randomly selected subset (18%) of recorded interviews and transcripts. Data quality was determined to be high. Responses provided via Qualtrics were submitted in a character-unrestricted text entry box.

Analysis
Participant characteristics were described in accordance with each variable's level of measurement through either frequency and percentage, or mean and standard deviation. Open-ended responses to the central research question were analyzed using a traditional content analysis approach (Krippendorff, 1980). The constant comparative method (Glaser & Strauss, 1967) facilitated an iterative and reflexive coding process. The use of analyst triangulation (Patton, 1999) enhanced credibility through the independent coding of all responses by both authors, followed by the collaborative establishment of domains and themes. A coding dictionary, including definitions of terms and operational rules for emerging domains and themes, was subsequently developed. Codes, themes, and domains were discussed until consensus was attained. When coding disagreements occurred-which was infrequent-a seasoned hospice bereavement specialist was consulted to facilitate a resolution. Leading hospice bereavement experts also provided peer debriefing (Lincoln & Guba, 1985) to maximize confirmability.

Findings
Participants generally described their hospice agency's bereavement support services in terms of the following four domains: (a) timing of support, (b) providers of support, (c) targets of support, and (d) formats of support. Themes were organized according to these four domains. Selected in vivo quotes were provided to exemplify the identified themes. Findings are presented in Table 2.

Timing of Support
Findings revealed that both predeath support and postdeath support were offered. Although most participants indicated that their hospice initiated bereavement support services after the patient's death, numerous participants described a proactive approach to bereavement support used in their hospice. Hospices employing this approach introduced bereavement support before death. Usually, this support was offered upon, or at least during, hospice enrollment. As one agency director of a small, for-profit hospice articulated, "we have like a process -the first [step] is we always do [bereavement support] at the very first hospice meeting, the bereavement starts." Proactive strategies largely focused on ongoing bereavement risk assessment that would subsequently inform postdeath support. Facets of this assessment included evaluating an individual's prior loss history, such as complex losses and coping challenges, and their current access to coping resources both inside and outside of the hospice. A subset of hospices offering predeath support provided support related to the anticipatory grief that individuals may experience leading up to the death of a loved one.

Providers of Support
Participants identified a wide variety of professionals responsible for providing grief support. Categorization of this variability occurred at two levels: (a) the level of behavioral health training, and (b) profession. Regarding the former, findings were arrayed across three groups: bereavement professionals, bereavement volunteers, and nurses or nurse case managers. Regarding the latter, there was an observed difference within the overarching domain of bereavement professionals, which comprised social workers, chaplains or spiritual counselors, therapists or counselors, and bereavement directors or bereavement coordinators.
In a number of responses, participants shared that members of the hospice clinical team who provided care for the patient while they were alive also made informal social visits after the patient's death to follow up with their family. These visits occurred after the death of a patient who may have received services for a lengthy duration of time. A clinical supervisor at a small nonprofit hospice said, Some of the people that we've had on service for a really long time -if our nurses, if any of our staff are out in the area and have time they'll just stop in and visit with the family because they've become family to us. Being small makes it easier to do that.
Visits also reflected strategic efforts by the hospice to engage with family members who previously had refused bereavement support services. As a clinical supervisor for a small, nonprofit hospice said, "it is very tough to get people to agree to bereavement visits/support. So, if the family refuses, we have the primary nurse go back in and offer the visits because they are the ones that developed the biggest bond."

Targets of Support
Participants reported targeting several recipient groups for their bereavement support services. The most frequently mentioned targets included the surviving family members (including family caregivers and children), friends, and nonkin members of the decedent's social network. A director of nursing at a medium, for-profit hospice added, I've actually had two family members on our hospice and it has helped-the bereavement has helped me because one of our bereavement coordinators, you know, because we're in the same office, has made me sit down and talk. I'm one of these stoic people that pushes things and he just made me sit down and talk to him and it helps a lot.
In some instances, participants acknowledged facilitating the provision of support to family members through other sources. For example, some participants discussed connecting family members with grief support resources in their local areas when long distances complicated access to their own hospice's services.
Participants also described how their hospices extended bereavement services to the larger community-usually, free of charge-regardless of whether or not the decedent was a patient of their hospice. A manager of a small, nonprofit hospice stated, We also are a part of a grief loss collaborative within our community, so we're looking at bereavement across the board and we provide bereavement services not just to our hospice patients, but to individuals who have experienced loss throughout community.
Multiple participants indicated that their organization provided bereavement services to long-term care communities after the death of a hospice patient. This support is extended to the residents, as well as staff, of the long-term care community. In some cases, support may be provided as a community service to long-term care communities experiencing multiple deaths. As one participant identifying as a team director for a small, nonprofit hospice commented, "we've had bereavement counselors go to facilities and meet with patients who are friends of our [dying or deceased] patients. Or facilities where they've lost a number of patients. Followed up by mailings as well sometimes."

Formats of Support
Participants frequently described multiple forms of bereavement support provided by their agency. Nevertheless, multiple participants stated that these services are often underutilized. For example, one clinical director for patient care at a medium, nonprofit hospice remarked, "I think [our bereavement support is] quite extensive and it surprises me that a lot of people don't use the services but we try to stay on top of it." The noted formats of bereavement support largely corresponded to both formal and informal support formats. Formal support formats emerged as strategic and routine services that hospices organized and led. Conversely, informal support formats emerged as services that hospices organized, though with less of a proposed agenda. Despite containing supportive elements, informal support services were not expressly implemented to address issues of grief to the same extent of formal support formats.
Formal Support Formats. The majority of responses pertained to formal support formats. These supports commonly included written materials, bereavement support groups, phone calls, individual counseling, memorials and rituals, and grief camps (primarily for children). The most widely observed format of bereavement support involved hospices' mailing of written materials to bereaved families. Such materials included newsletters, educational materials (e.g., regarding grief and coping strategies), and sympathy cards. Some participants noted that written formats of support may be more conducive to an interdisciplinary expression of support. As one medical director for a medium, for-profit hospice stated, "we have cards we send out at time of death to the family, we also give cards to attending physicians so that his or her staff can send out the cards." Bereavement support groups and phone calls were commonly observed. Individual counseling emerged, though to a lesser extent. Memorials and rituals were also commonly reported sources of formal bereavement support, and took a variety of forms. In some instances, hospices organized memorial events to commemorate patients who had died. Anniversary events pertaining to holidays or the anniversary of the patient's death were also frequently mentioned. Death anniversary events for individual patients were often acknowledged through written materials, phone calls, and other formats. Less frequently, participants reported that hospice staff accompanied the bereaved to various death rituals for their deceased patients, such as funerals, wakes, or burial services. A minority of participants described hosting camps for children to address their grief in tailored and supportive environments.
Informal Support Formats. Responses also indicated that hospices facilitated opportunities for informal bereavement support among bereaved caregivers. These formats included informal gatherings, such as potlucks and other social opportunities, types of memorial events, and informal visits by hospice staff. Although not identified as formal bereavement support services, participants acknowledged the potential for these formats to function as implicit support groups through which bereavement support naturally emerged. As one nurse clinical coordinator for a small, nonprofit hospice remarked, "every other month or so . . . any of [our families] are invited just to come and have breakfast and socialize with the people who have also lost loved ones." Moreover, participants noted that ongoing informal support networks may naturally develop out of formal support formats, such as memorial events. As one clinical supervisor at a small nonprofit hospice explained, We partner with a funeral home in town and once a week they meet at a trail in the morning and call it a "mourning" walk and then they just walk 2 miles and talk and get a lot of good friends that have formed through that.
Community-Based Referrals or Partnerships and Other Specialized Support. A number of the bereavement services that participants described also involved connections with community-based organizations. In some instances, this included referrals to outside bereavement resources or other mental health services. In other instances, this included partnerships with community institutions, such as funeral homes or religious communities. Partnerships with schools were also mentioned as a way to facilitate specialized support for children coping with loss. The theme of specialized support also included agencies' own provision of support groups tailored to specific kinds of loss. These support groups were designed specifically for military families, pet loss, and families coping with a death related to dementia. Hospices also drew on creative processes to facilitate coping. For example, art and music therapy were described as alternative formats of support.

Discussion
These findings present an updated and in-depth qualitative summary of hospice bereavement services provided across the U.S. Four primary domains emerged from the data: (a) timing of support, (b) providers of support, (c) targets of support, and (d) formats of support. Each of these domains reflected substantial variability. This variability, in turn, may contribute to inconsistency in the implementation of these beneficial services (Barry et al., 2012;Demmer, 2003), as well as difficulties in building and implementing evidence-based bereavement research (Hay et al., 2019;Schut & Stroebe, 2011).

Timing of Support
The first domain considered the timing of when services are provided. Although the majority of participants reported that their hospice begins bereavement services as soon as possible following death, a substantial minority stated that their hospice takes proactive measures before death to ensure healthy grief outcomes once death has occurred. This often begins with a bereavement risk assessment through which hospice clinicians attempt to preemptively assess an individual's risk for unhealthy coping with grief following death or through addressing the anticipatory grief that individuals may experience before death. Unfortunately, the extension of bereavement support services both before and after death is not standard. In a national study of hospices, just over half (55%) reported screening caregivers for bereavement risk prior to the patient's death in addition to offering bereavement services following death (Ghesquiere et al., 2015). Notwithstanding, beginning these services as early as possible appears beneficial. Dean et al. (2014) found that introducing postdeath bereavement services to caregivers before death was associated with increased utilization of bereavement services. Increasing the rate of bereavement service utilization is important when considering Ghesquiere et al.'s (2016) aforementioned finding that only a quarter of bereaved hospice caregivers utilize bereavement services. Therefore, offering predeath bereavement services appears to maximize the number of individuals receiving beneficial services who, otherwise, may be left without such support.

Providers of Support
Findings also indicated a wide spectrum of providers of grief support. Although such diversity in bereavement service providers is consistent with prior literature (Demmer, 2003;Foliart et al., 2001), it denotes an area for growth in the broader field of bereavement support. Variability was not only observed in the level of behavioral health training, but also in profession. Several potential explanations for this range exist. One is that the breadth of provider types may result from the lack of regulations regarding the implementation of bereavement support programs in hospice. Another is that this diverse range of bereavement support providers allows hospices to better respond to the needs of their communities and the families they serve. By extension, the variation in agency size potentially suggests that smaller hospices may fill these positions with available personnel.

Targets of Support
Targets of support were widely varied. Although the majority of responses indicated the family of the decedent as the primary target of support, findings denoting a broader focus in the targets of support also reached saturation. These additional targets of support included patients of other health institutions impacted by the loss (e.g., nursing home residents), employees of other health institutions, and even whole communities. The extension of bereavement support beyond the usual recipients of family members and caregivers is a critical finding. Given that hospices are not reimbursed for providing bereavement support services to patients (Public Health, 2019), the provision of these services to individuals outside their patient census reflects additional-and voluntaryundertaking and an added expense. Of note, the broad array of proposed targets of support frequently coincided with the format of the bereavement support offered.

Formats of Support
Across the four domains, the widest variability was observed in terms of how support services were provided. Many hospices reported offering multiple modalities of support. The myriad of formats, and the formats themselves, were largely consistent with prior research (Barry et al., 2012;Demmer, 2003;Foliart et al., 2001). Since grief is conditioned by both personal and cultural factors (Clements et al., 2003;Hardy-Bougere, 2008), this variability may reflect efforts to provide patient-centered care in culturally responsive ways.
The finding that hospices attempt to engage families through a variety of modalities-even after initially declining bereavement support services-is a noteworthy finding. Only a small proportion of those who have experienced a loss require professional attention (Aoun et al., 2015). Instead, research shows people often prefer to work through issues of grief without professional help (Aoun et al., 2015;Waller et al., 2016). That does not mean, however, that those who are initially reluctant to accept such support would not benefit from the strategic and tailored formats of continued support (Currow et al., 2008). The strategic provision of prolonged support may be especially beneficial around anniversary events (Chow, 2009;Rostila et al., 2015;Saltzman, 2019) and for individuals experiencing complicated grief, or prolonged grief disorder, who may benefit from ongoing support (Ghesquiere, 2014;Ghesquiere et al., 2015;Shear & Gribbin Bloom, 2017). However, since hospice bereavement support services are not formally reimbursed, hospices likely must consider these examples of targeted and prolonged support, such as follow-up visits, in conjunction with agency solvency.
A substantial minority of cases offered specialized formats of support that focused on specific populations, such as bereavement camps for children, and grief related to specific diagnoses, such as dementia. It is possible that these specialized groups tap into nuances of the particular types of grief that more generic groups may be unable to address (Worden, 2018). It should be noted that the ability to offer these specialized formats may be influenced by institutional factors, such as hospice size, profit status, and philanthropic support. For instance, larger hospices may have the financial resources to support the provision of these specialized formats of support.

Limitations
These findings should be considered with respect to the study's limitations. Data were gleaned from voluntary questions offered at the end of a 20-minute survey. This data collection method introduced two noteworthy limitations. First, despite the use of a probability sampling approach, the larger study's (Cagle et al., 2020) focus on hospice medication diversion may have biased the current study's results. Second, the inclusion of this additional question likely contributed to response fatigue. As a result, follow-up probes were limited. Probes were also not universally applicable, since interviewers could only further probe the participants completing the survey through the phone-based format (n ¼ 57, 75.0%). Additionally, data for the current study were also based on selfreport and, thus, are subject to human error, such as recall bias. Finally, since most participants (n ¼ 61, 80.3%) indicated providing primarily in-home hospice care, these findings may not accurately describe the hospice services provided in institutional settings.

Implications
As it stands, hospice bereavement support services represent a black box. Although the substantial variability uncovered in this analysis may be beneficial in clinical practice, it may also complicate methodologically rigorous examination of the efficacy of bereavement approaches in hospice (Hay et al., 2019;Schut & Stroebe, 2011). When such studies are conducted, however, this inconsistency also contributes to difficulty ascertaining what, specifically, about these programs was most beneficial for bereaved caregivers (Waller et al., 2016). Recent scholarship (Shear & Gribbin Bloom, 2017) indicates a push toward evidence-based bereavement approaches. In addition to more directly sampling hospice providers, future research should seek to quantitatively examine the findings emerging from the current qualitative study in order to determine which factors are associated with the most favorable bereavement outcomes.
Ultimately, the variability observed-particularly in the format of bereavement support and in the provider of bereavement support-reflects points that hospices can leverage to maximize their bereavement programs. Grief's acknowledgement as a significant mental health concern (Worden, 2018) warrants treatment from capable practitioners well versed in behavioral health. Although all hospice providers are likely to encounter death and grief on a routine basis, different professionals may receive varying amounts of training on providing bereavement support. Comprehensive training is critical, as training and experience have been found to be significantly associated with competence in providing grief counseling (Ober et al., 2012). Literature shows that, despite its standing as a global human experience, grief is personal and affects people on an individual basis (Wilson et al., 2020). Therefore, it is crucial that providers are trained to deliver competent and tailored bereavement support services, as well as to recognize the need to refer out for more specialized support when necessary. Dedicating this role to a professional trained in behavioral health could represent a needed first step in demystifying the black box of hospice bereavement services.

Conclusion
This content analysis of data derived from a national sample of hospice representatives provided a timely, updated exploration of hospice bereavement support services. Findings indicated substantial variation in terms of timing of support, providers of support, targets of support, and formats of support. Although this flexibility allows for tailored approaches of support, it also inhibits methodologically rigorous study of which factors provide the greatest benefit for bereaved clients. Such research could inform practice by highlighting areas that hospices could develop and implement to maximize client benefit.

Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the UMB CARES Science to Systems pilot grant, the University of Maryland School of Social Work, and the Hospice Foundation of America.