A framework for conducting follow-up meetings with parents after a child's death in the pediatric intensive care unit*

Nearly 55,000 children die annually in the United States (1), affecting the health and welfare of many families. Regardless of the cause, the majority of these deaths occur in hospitals; many after admission to a pediatric intensive care unit (PICU) (2, 3). Bereavement care is an important aspect of pediatric end-of-life care (3), in part, because bereaved parents often seek information and emotional support from health professionals who cared for their child (4–9). Bereaved parents may feel a particularly profound attachment to PICU physicians and staff because of the intensity of the PICU experience at the end of a child's life (10). PICU physicians and staff also have psychosocial needs after the death of a child under their care (11, 12) and are susceptible to stress-related syndromes, such as burnout and compassion fatigue related to the stress of caring for chronically ill and dying children (13–16). To address these needs, clinicians, parents, and professional organizations have recommended that PICU physicians offer to meet with bereaved parents after the death of a child as part of routine care (7, 8, 10, 17–20). One important barrier to follow-up meetings is physicians’ discomfort and lack of training in discussing distressing information with patients and families (21–24). Literature exists to guide clinicians in communicating with families in a pediatric setting, and in particular, near the end of a child's life (7, 8, 25–28). A few reports (29–31) described pediatric specialists’ experience in meeting with bereaved parents, but the recommendations may not be generalizable to a variety of settings and circumstances. A meaningful framework for follow-up meetings should be flexible enough to be widely applicable and informed by the values and preferences of those most likely to be active participants, in this case, bereaved parents and PICU physicians (32, 33). To develop a framework for conducting follow-up meetings with parents after a child's death in the PICU, we conducted multisite research investigating the experiences and perspectives of bereaved parents and PICU physicians regarding the desirability, content, and conditions of follow-up meetings (17, 21, 26). This research was conducted at seven children's hospitals participating in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. To gain the perspective of bereaved parents, we conducted qualitative telephone interviews with 56 parents of 48 children, who died in a Collaborative Pediatric Critical Care Research Network PICU 3–12 months earlier (17). Parents were asked open-ended questions about their desire to meet with their child's intensive care physician in the weeks or months after their child's death and about their preferences regarding timing, location, participants, and topics for such a meeting. Findings showed that many bereaved parents would like the opportunity to attend a follow-up meeting to discuss medical and emotional aspects of their child's illness and death and to give feedback on the care their child received, but few have been offered the opportunity. Using similar methods, we elicited the perspective of PICU physicians through qualitative telephone interviews with 70 attendings and fellows practicing or training at a Collaborative Pediatric Critical Care Research Network site (21). Physicians were asked to respond to open-ended questions regarding their past experiences participating in follow-up meetings with bereaved parents, including the number, content, and conditions of the meetings, and perceived benefits to parents and to themselves. Physicians were also asked about how future follow-up meetings should ideally be conducted and potential barriers to meetings. Findings indicated that most physicians infrequently meet with bereaved parents after the death of a child under their care. Those physicians who have met with bereaved parents felt the meetings were beneficial to parents and to themselves and that inviting parents to follow-up meetings should be a part of future practice. The following framework (Table 1) is based on the parent and physician interview data gathered in our prior research. Thematic analyses of interview transcripts resulted in the identification of processes for initiating and conducting follow-up meetings and content areas for discussion deemed important by parents and/or physicians. These processes and content form the basis of the framework; the framework is also supplemented by relevant literature as referenced throughout the text. Although we have organized the framework in chronological steps, human interactions are a dynamic, interactive communication process of mutual influence, and often unfold in highly complex and unpredictable ways (34). Therefore, the framework is not intended as a script to be followed, but instead as a general set of principles adaptable to the specific context of each family's circumstances. Table 1 Framework for physician-parent follow-up meetings