An Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care

When asked about their experiences, bereaved parents have detailed supportive measures offered before their child’s death that have positively impacted their grief trajectory. Specifically, research reveals that parents who accessed psychological supports during the last month of their child’s life were more equipped to cope with grief and had lower levels of persisting grief.⁷  Furthermore, parents have repeatedly described the importance of anticipatory guidance from health care professionals about their child’s end of life.⁸ 

Additionally, parents have described informational packets outlining local resources, professional services tailored to individual needs, continuation of therapeutic relationships with trusted health care providers, and parental networking as beneficial supports, both immediately during and after a child’s death.^9,10  Ongoing communication with staff members and connection with other bereaved families are particularly salient mechanisms for reducing feelings of distress and isolation, while also promoting adaptive coping and meaning making.^10–12  Bereaved parents expressed that support groups are helpful resources because they provide opportunities to engage with others who understand the life-altering experience of losing a child^9,13–16  and are able to share their stories without feeling “uncomfortable.”¹⁷  Moreover, parents described the importance of memorial events as touchpoints for contact with staff and other bereaved families and serve as affirmations of an institutional commitment to honor their child’s legacy.^16,18,19 

Because the death of a child fundamentally changes the family unit, it is necessary to understand the psychosocial and health-related sequelae bereaved siblings experience. Depression, complicated grief, posttraumatic stress disorder, and psychiatric hospitalizations are not uncommon among bereaved siblings.²⁰  Furthermore, siblings who reported close-knit relationships with their dying sibling experienced a more complicated grief response characterized by higher levels of anxiety and depression.²⁰  To mitigate these poor psychosocial outcomes, clinicians have prioritized sibling support during the bereavement period. Siblings request honest and accurate information from health care providers and want to engage with their sibling at the end of their life. Beyond these qualitative reports, there are clear empirical data to support these preferences. Lövgren et al²⁰  found that siblings who did not receive anticipatory guidance surrounding what to expect when their sibling died showed significantly higher levels of anxiety 2 to 9 years later. Furthermore, siblings who had negative end-of-life experiences (ie, no opportunity to say goodbye or unprepared for death) exhibited greater signs of psychological distress.²⁰ 

The death of a child has significant effects on families, inclusive of parents and caregivers, siblings, and other family members. Although individual and group-oriented supports have shown to be beneficial for bereaved family members, these interventions are often few and far between. These interventions can be challenging to access because health care institutions are often unable to invest the time, resources, and staffing necessary for implementation of effective bereavement support programs.²¹ 

Pediatric bereavement has notable effects on health care providers, some of which can nearly mirror the grief experiences of parents and caregivers.²²  Time pressures, limited resources, and inadequate training create additional stressors for staff and widen the disconnect between ideal bereavement services and the constrained reality of institutional infrastructure.^5,23  As a result, practitioners can report feelings of inadequacy, burnout, and emotional withdrawal when attempting to provide optimal care under these circumstances.²⁴  Bereavement committees can alleviate these issues by serving as hubs for staff support, comprehensive education, and care coordination.^25,26  Debriefings, systematic education, and the design of formal bereavement standards of practice (SOPs) equip clinicians with knowledge and support systems required to administer compassionate and informed care.^{23,25,27–29}  Parents and caregivers and health care professionals both describe the importance of formally organized (yet individualized) bereavement care in and beyond the hospital setting. At this time, it appears that few such hospital-based bereavement support programs exist^5,25 ; furthermore, the variation in service delivery across these programs²⁶  presents an additional challenge to implementing consistent, effective, and sustainable pediatric bereavement support services.

Bereavement committees may be in unique positions to respond to these challenges by developing interdisciplinary, hospital-specific educational resources for families facing the loss of a child, reconnecting families and staff through remembrance events, and building a supportive community of bereaved parents through committee engagement. Therefore, in this article, we describe the development and achievements of an interdisciplinary, hospital-wide bereavement committee at a children’s hospital within an academic medical center. Considering this model in conjunction with evidence-based practices for family-centered bereavement support, hospitals can design programs and service models that are feasible, sustainable, and effective in supporting bereaved families in their communities. Through education, dialogue, collaboration, and support, these innovative committees have the potential to foster a paradigm shift in which high-quality bereavement care for families and providers becomes standard practice, rather than a rare offering.

As a children’s hospital associated with an academic medical center, (Monroe Carell Jr Children’s Hospital at Vanderbilt) is recognized for its high-quality, evidence-driven, and cutting-edge medical and psychosocial care for children in the Southeastern United States. A Certified Level I trauma center, designated as a center of excellence for heart, liver, and kidney transplant and equipped with neonatal, cardiac, and general PICUs, the institution serves an estimated 22 000 families per year. Unfortunately, nearly 400 of these families (not inclusive of fetal deaths or nonviable pregnancies) will experience the death of a child. Therefore, the resources and specialties available at (Monroe Carell Jr Children’s Hospital at Vanderbilt) and the frequency of end-of-life care provided within its walls have elevated bereavement care as a clinical, administrative, and community engagement priority for interdisciplinary service providers and leadership.

Although several department-based and unit-specific bereavement supports have been initiated at (Monroe Carell Jr Children’s Hospital at Vanderbilt) over the past 2 decades, sustainability has proved challenging amid institutional growth, staff turnover and transitions, and the ebb and flow of available resources. At the beginning of 2019, several pieces came together to support the development of an interdisciplinary, hospital-wide committee for assessing needs, generating solutions, and maintaining bereavement care opportunities for children and their families. Specifically, as the palliative care service became more integrated into hospital culture, community donors came forward, and unit-specific champions began to converge, informal conversations and scheduled meetings were held to identify areas for service improvement.

To unite these key stakeholders, a “Bereavement Think Tank” event was held by the patient- and family-centered care department. An auditorium was reserved for 6 hours (to allow for employees from all shifts to attend) and was marketed to hospital staff as an opportunity to weigh in on bereavement needs, concerns, and observations, while enjoying light refreshments. Attendees were asked to add their thoughts and concerns to questions posted around the room (see Table 1) or use a Quick Response code to provide their feedback using Research Electronic Date Capture (REDCap). This REDCap survey was also distributed via institutional e-mail listservs and internal newsletters to collect feedback from those unable to attend. In addition to gaining valuable insights, gathering information through an in-person event and nondeidentified survey also allowed for identification of key stakeholders and service champions, which was imperative for the next stage of committee development.

As the Bereavement Think Tank event was implemented and evaluated, key stakeholders used their professional networks to explore bereavement committee service models at 18 top children’s hospitals in the United States. This group of stakeholders, including a Certified Child Life Specialist, palliative care physician, pediatric intensivist, and chaplain, distributed a brief survey to learn more about committee structures, functions, accomplishments, and administrative support. The information gathered from this survey was used to not only inform future program development but also help create a support network of institutions and staff invested in similar work.

As was clear from this undertaking, an interdisciplinary approach to bereavement care seemed both essential and preferable. Although the survey revealed great structural and administrative variability in bereavement services, results indicated that hospitals with more extensive and developed palliative care programs often relied on the hospital bereavement coordinator to manage initiatives and organize committees. However, those with smaller and emerging palliative care programs without an on-site bereavement coordinator typically employed an interdisciplinary committee model. In these cases, committees were typically composed of physicians, nursing, social work, spiritual care, and child life staff and governed by individual committee members on a rotating basis.

In terms of bereavement committee initiatives, several hospital representatives across the country reported (1) the planning and implementation of annual memorial events for bereaved families, (2) coordinating the mailing of condolence cards or educational resources at designated intervals after the child’s death, and (3) providing staff education regarding the best practices for dying children and grieving families. Interestingly, more than one-third of responding institutions reported hopes to develop an institutional SOP or care document for bereavement services for children and their families. Several respondents reached out directly in hopes of viewing the results of this networking endeavor (to inform their own committee practices and initiatives) and establish nationwide connections with other stakeholders.

The feedback collected from the Bereavement Think Tank and networking survey indicated that an interdisciplinary committee would be the most feasible and sustainable first step to improving bereavement care for patients and their families. A wide array of relevant disciplines were invited to participate, and, from these, the identified core stakeholder group (the Certified Child Life Specialist, palliative care physician, intensivist, chaplain, nursing leader, and family resource center manager) came together to identify a recruitment strategy. Given the prevalence of unit- and department-specific bereavement efforts, it was crucial that all hospital units and relevant disciplines be invited to participate in this newly forming committee, especially those who were unable to actively engage in the committee’s creation. A list was created (see Table 2) to identify all of these key stakeholder groups; representatives from each were identified from the list of Bereavement Think Tank attendees, inquiry e-mails received by the core stakeholders, unit-specific champions (as identified through purposeful dialogue with leadership), and professional networks.

As this committee-based model was developed, a literature review was completed to identify the best practices for committee assembly and bereavement service provision. As noted in several articles^{18,19,29–32}  and corroborated by stakeholders across the institution, bereaved parent participation was identified as an essential component of high-quality bereavement care. In partnership with the director of the hospital’s parent advisory committee, the core stakeholder group identified 3 integral bereaved parent committee members: (1) a twice-bereaved mother of 2 infants who was actively involved in other hospital education initiatives and a statewide parent-to-parent mentor program, (2) a mother who lost her infant in route to the hospital’s emergency department and expressed interest in giving back to the institution, and (3) a mother of an adolescent oncology patient who died after several years of illness, treatment, and complications. A Certified Child Life Specialist interviewed each prospective member to assess interest and share information about the vision for the developing committee. Each identified parent expressed interest in participating, with plans for continued recruitment of increasingly diverse bereaved parent representation.

Once a robust representation of stakeholders from relevant departments was secured and parent representatives were identified, an initial committee meeting was scheduled. To reach clinicians working both day and night shift, monthly meetings were scheduled for 8:00 am; to accommodate those unable to attend in person, meetings were simultaneously hosted in person and via Zoom videoconferencing. An appointed administrative member of the patient- and family-centered care team took responsibility for recording meeting minutes, which were then disseminated to committee members via e-mail and stored in a community-accessible box folder.

Many of the bereavement committee’s practices and policies were drawn from the philosophy of shared governance. Under the shared governance system, committees make decisions by achieving consensus, rather than voting or defaulting to the authority of leadership. The developing committee was structured in this way on the basis of research revealing that shared governance models increase individual empowerment,³³  satisfaction, and retention³⁴  because all members have equitable opportunities to share their viewpoints.

During the inaugural meeting, members reviewed the results of the Bereavement Think Tank event and accompanying REDCap survey to identify actionable goals. Because of the wealth of feedback shared by hospital staff, it became important to prioritize objectives. The committee came to consensus on which goals felt most impactful and feasible to tackle in the first months. These included (1) conducting more targeted benchmarking, (2) updating and expanding the hospital’s bereavement SOP document, (3) creating an educational resource for families approaching the end of a child’s life, and (4) improving the institution’s annual remembrance event. To ensure efficient and effective completion of goals, committee members self-selected into 4 subgroups (1 for each goal). Each subgroup included individuals from a variety of disciplines and departments, and parent members were involved in all planning, decision-making, and project creation.

To better understand the national scope of hospital-based bereavement services, a brief survey was composed by a committee working group and distributed to listservs hosted by the Association of Child Life Professionals, the Pediatric Chaplains Network, and various pediatric palliative care organizations. However, most responses were obtained by reaching out to the core stakeholder group’s professional contacts at different institutions. As information was gathered indirectly and via networking, efforts were made to solicit diversity in institution type (for profit, academic, or nonprofit), size, and geography (both by state and urban versus rural) to try and see the spectrum of possibilities. Twenty-seven distinct facilities responded and provided valuable information about the structure of their bereavement programs and the interventions offered to families throughout the grief and bereavement trajectory.

Survey respondents reported that legacy building and memory making, spiritual and emotional support, sibling education and coping support, and anticipatory guidance were the primary interventions offered just before or during the child’s death. When families returned home, several facilities reported providing families with psychoeducational resources on typical grief responses. Additionally, some institutions provided follow-up phone assessments, greeting cards on holidays or the child’s birthday, and annual remembrance events. These findings not only mirror the Borgman et al³⁵  benchmarking study of children’s hospital grief services, but also reflect the experiences shared by bereaved parents in the literature.^8,9,31  Therefore, these interventions and services were deemed as indispensable components of the developing bereavement program at (Monroe Carell Jr Children’s Hospital at Vanderbilt).

Members of the SOP subgroup evaluated existing institutional policies, protocols, and standards of practice related to pediatric bereavement, identifying an immediate opportunity for revision and expansion. The paucity of information within the original SOP and the variability in practices across departments and service lines were likely contributors to the disparities in services provided to families on each unit during and after the end of a child’s life. Moreover, in cases in which parents lost children on multiple units throughout the hospital, the lack of standardization led to unmet expectations and confusion.²³  Bereaved parent committee members as well as Bucaro et al²⁷  described the integral link between clear expectations or procedures and satisfaction and perceived quality of care among families at the end of life.^28,29  Additionally, providing clear information during difficult end-of-life situations mitigates staff suffering by opening avenues of continued education, communication, and care coordination.²³ 

To standardize and ensure equitable access to care, a subcommittee representative of each unit and discipline was created to review and revise the existing SOP. Within 6 months, the updated and expanded document was reviewed and formally approved by all levels of hospital administration. In its final form, the Standard of Practice for Bereavement Care at Children’s Hospital sets the expectation that all families are entitled to all hospital-based supports, describing the scope of available interventions offered by medical providers, nursing, social work, chaplains, child life specialists, creative arts therapists, and others. With the document, it is reinforced that family members have the right to make choices about their care, and it is acknowledged that each family will engage with services and supports differently on the basis of their cultural, developmental, and spiritual backgrounds. Many components of the service offerings in the SOP have integrated the experiences of bereaved parents per current research, anecdotes from committee members (both providers and parent members), and evidence-based guidelines on quality bereavement care, including the importance of social support at the bedside^8,17  and identifying a team member to walk the family out to their car when they are ready to leave.³⁶  The finalized document was disseminated through unit-based and departmental education, presentations at institutional leadership forums, and individual committee members.

Before the bereavement committee’s formation, medical and psychosocial care providers at (Monroe Carell Jr Children’s Hospital at Vanderbilt) relied on a wide array of educational and written resources from outside organizations to support family communication and coping at the end of life. Although drawn from nationally reputable organizations, the need for a cohesive yet customizable informational resource specific to the unique qualities of this institution and its patient populations was recognized and prioritized. Previous research indicates that information about the physical and emotional manifestations of grief and adaptive coping mechanisms is an essential component of effective bereavement care.^13,36,37  Thus, it was important for this resource to include information about next steps after a child has died, a description of the grieving rights of adults and children, potential grief experiences after a loss, contact information for available hospital services and the child’s care team members, and information about the hospital’s annual remembrance event. These components were created to exist both separately and in conjunction with one another, allowing for customization to individual family needs, as families transition from the moment of death into life after loss.

Across multiple studies, bereaved parents and caregivers have described memorial or remembrance events as an important part of their grieving process,^16,18,19  thus many hospitals provide these events for families in their communities.^35,38  An annual remembrance event known as Time for Remembering is a long-standing tradition at Monroe Carell Jr Children’s Hospital at Vanderbilt (even before the development of this bereavement committee) and has maintained consistency in its content and structure throughout. To function within funding and space constraints, while also limiting triggering or unwanted communications from the hospital for uninterested families, invitations to the Time for Remembering event were sent to all families that had lost a child at Monroe Carell Jr Children’s Hospital at Vanderbilt within the past year. If families were unable to attend but were interested in future events, they could request to be added to the next year’s mailing list. Additionally, those who attended the event were also able to request an invitation the following year. These practices resulted in a small group of families that had been in attendance for >5 years, while also allowing space and resources for those who were recently bereaved and attending for the first time.

Equipped with the invaluable insights of bereaved parent members, the Time for Remembering subgroup of the hospital bereavement committee suggested and implemented improvements to better meet the needs of families served by this event. Namely, parent members expressed the desire to invite families whose children had died within the last 2 years instead of the previous 1-year requirement (to facilitate additional opportunities for social connection at the event) and maintain the opt-in system for future invitations. These adjustments thereby expanded the list of invitees and garnered increased attendance, without surpassing the available funding and space for the event. Additionally, a virtual component was added so that families who were not comfortable returning or lived too far away from the institution could still participate in honoring their child (an effort which became especially pertinent during the 2020 coronavirus disease 2019 [COVID-19] pandemic, in which the entire event was held virtually). Finally, the event’s registration form had previously only included 1 blank for the name of the child who had died; on the basis of the experiences of bereaved parent members, additional spaces were inserted, intentionally honoring multiple child or fetal losses within the same family.

The bereavement committee has also completed smaller service improvements over the last 2 years. To care for families’ physical needs at end of life, the committee partnered with the hospital’s dietary services department to provide a nutrition cart (complete with coffee, tea, water, sodas, snacks, and fruit) free of charge for families to access as their child is dying, allowing families to remain at the bedside while meeting self-care needs. Additionally, in partnership with physicians, nursing leadership, and the decedent affairs department, the committee revised and standardized unit-based staff informational resources to ensure that all necessary documents and protocols are accessible to staff on the unit. Most recently, the committee has filmed a series of educational videos for bereaved parents and family members for the hospital Web site, addressing topics such as coping during the holidays, managing different spousal grief styles, and the importance of prioritizing one’s physical health while grieving.

A recent program accomplishment has been the implementation of parent support groups; in partnership with a local nonprofit agency (Family Voices of Tennessee), a bereaved parent committee member and rotating staff members have led a structured support group for bereaved families in the community. During these meetings, parents can learn about various grief-related topics from respective experts while also connecting with other bereaved parents and sharing their stories. Additionally, the committee has established connections with a local hospice organization; information about the organization’s grief support services and groups is housed on the hospital’s committee-designed bereavement Web site. To support these internal initiatives and community partnerships, the committee has established and maintained strong relationships with various funding partners, including (The Forrest Spence Fund) and the hospital’s development office.

The novel framework and accomplishments of this committee have garnered support and recognition from various professional organizations and health care institutions serving not only pediatric patients but, also, adults. Members from the committee have presented on the formation of the bereavement program at various professional conferences hosted by the Beryl Institute for patient experience, the Association of Child Life Professionals, and the Institute for Patient and Family-Centered Care. Locally, the children’s hospital bereavement committee has helped the affiliated university hospital system establish their own committee for serving and honoring adult patients who have died under their care. The committee’s next step is a systematic evaluation of this emerging pediatric bereavement program to assess family perceptions of and the effects of hospital-based bereavement services (such as the educational resource, improved standards of care, provider follow-up, and the annual patient and family memorial event).

The formation and maintenance of a hospital-wide interdisciplinary bereavement committee, like any innovation, has not been without challenges. First, coordinating a large group of professionals with varied work responsibilities and schedules has required continued negotiation. To facilitate varied types of access and attendance, the committee has instituted periodic reevaluations of scheduled meeting times, introduced Zoom attendance capabilities, and intentional forms of documentation and communication of meeting discussions by using the box digital platform. Stakeholders are encouraged to send feedback for consideration when they are unable to attend meetings, and departmental representatives are charged with reporting committee activities back to their respective staffing groups as well.

During the COVID-19 pandemic, committee members transitioned to home-based work roles or were reassigned to the hospital’s labor pool; however, the previous digital presence of the committee rendered a smoother transition into this new way of collaboration. Both before and as a function of the COVID-19 pandemic, funding for committee work has been an ongoing obstacle. Although key partnerships with individual donors and local foundations have been established by the committee, increasing death rates and bereavement service needs have stretched providers and resources in unexpected ways. By strategically involving the patient- and family-centered care team, marketing and communications, and a representative from the institution’s auxiliary group in the bereavement committee, these essential service needs are in front of prospective donors and grantors at all times, maximizing funding potential.

To better support increasingly diverse patient and family populations in the institution and local community, equity and inclusion in bereavement care have become central foci of the committee’s work. Whether actively including the voices of diverse provider and parent members or critically examining hospital policies to make space for the spectrum that is grief, diversity of services and care is a committee priority. Diversity, equity, and inclusion are not viewed as barriers to overcome but, rather, an opportunity for improved service delivery.

These areas for continued improvement closely mirror the scope of what is both present, missing, and much needed in the current research on bereavement service provision and outcomes. Just as the intentional interdisciplinary collaboration of this bereavement committee has brought about substantive and sustainable clinical change, such engagements have the capacity to tackle the most urgent priorities of bereavement research (see Table 3). Thus, empirical evaluations of the efforts of this bereavement service models and its resulting effects on the families served are an immediate committee goal.

Few hospital-based bereavement programs exist across the United States,^5,25  despite families’ needs for anticipatory guidance and psychosocial support before, during, and after the loss of a child.^8–10  As a health care institution invested in high-quality patient- and family-centered care, an opportunity for improvement was capitalized on with the creation of an interdisciplinary hospital bereavement committee. Although it began with a few passionate individuals, its successes and inclusivity have extended its representation and reach into a wide variety of professions and departments. As improvements have been generated, disseminated, and implemented, many families have been better served by the hospital and local community during one of the most challenging experiences of their lives.

We acknowledge the patient- and family-centered care team at the Monroe Carell Jr Children’s Hospital at Vanderbilt for their support and sponsorship of the bereavement committee described in this article and the interdisciplinary care team members and bereaved parents who have dedicated their thoughts, time, and energy to this initiative.