Trends in Palliative Care Research 2022; Issue #06

Commentary by:

Dr. Paul D’Alessandro, MD, MSc, FRCPC, Pediatric Hematology/Oncology Fellow, University of British Columbia

Feature Articles:

McNeil, M. J., Kiefer, A., Woods, C., Barnett, B., Berry-Carter, K., Clark, L., Mandrell, B. N., Snaman, J., Kaye, E. C., & Baker, J. N. (2022). “You are not alone”: Connecting through a bereaved parent mentor program for parents whose child died of cancer. Cancer Med.

Wolfe, A. H. J., Hinds, P. S., Arnold, R. M., Soghier, L., & Tompkins, R. (2022). Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths. Journal of Palliative Medicine., 25.

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As I complete my pediatric oncology training, I am achieving competency and gaining autonomy in the care of pediatric and adolescent patients and their families living with life-limiting cancer diagnoses and at end-of-life. The two selected articles highlight initiatives aimed to support bereaved parents following the deaths of their children due to cancer and explore physician grief in a pediatric intensive care unit. In particular, there were striking parallels between the narrative comments of the bereaved parents and the grieving physicians.

McNeil et al. describe an innovative program that connects newly-bereaved parents with other parents of deceased children at a single pediatric institution. They retrospectively analyzed documentation from 1368 encounters from 2014 to 2020 between 150 mentees (newly bereaved parents) and 39 mentors (other parents of deceased children who were at least 2 years from the deaths of their children, and also underwent a comprehensive screening, criminal background check, interview, and training modules.) The incidences of ‘pink flag’ encounters – minor issues such as excessive worry or financial concerns – and ‘red flag’ encounters – urgent issues such as complaints toward hospital staff or suicidal ideation that required immediate attention from the hospital’s psychosocial team – were low, at 3.5% and 0.5%, respectively. Although limited by some selection bias, the authors described bidirectional benefits for participants. The authors reported that bereaved parent mentors, through their own shared grief experiences, were able to provide advice, encouragement, and anticipatory guidance that many medical professionals may not be able to provide.

Wolfe et al. describe a prospective qualitative study using a focus group and semi-structured interviews of pediatric intensive care unit physicians (critical care attending physicians, critical care fellow physicians, and pediatric residents) over 6 months in 2021. The aim of the study was to describe features of impactful pediatric patient deaths and explore practices/environments surrounding those deaths that fostered physician resiliency. The authors described that unexpected/sudden deaths and first/early career deaths were most impactful, particularly for trainees. Trainees were also more likely to describe avoidance, numbing, and rumination as grief reactions compared to more senior physicians.

Analysis of the illustrative quotes in the two papers identified interesting counterpoints. The unique advice, encouragement, and anticipatory guidance that McNeil et al attributed to bereaved parent mentors (distinct from what many medical professionals may offer) appeared to address some unmet needs of the grieving physicians, especially trainees. For example, a trainee reported struggles with engaging with their partner in attempts to debrief: “Even my husband doesn’t understand what I do… I told him once about a kid who died and I made him cry and so, now I just said I had a bad day at work.” Another trainee described a desire for mentorship: “I felt utterly and completely alone… I wish my attending had been there with a cup of coffee and a listening ear.” Bereaved parent mentors reported: “[My mentee] said that her husband still got sad when she talks about (daughter.) … [If talking about their deceased child with her husband was too difficult,] I suggested a memory [and/or reflection] jar. When they think of something… they write it down and place it in a jar and they can keep adding to it. Over time, they [may] take the memories out and read them.” In another instance, a pediatric resident physician described the vulnerability of a first/early career patient death: “It was horrible… There’ve been a lot after, but there’s something about the first [death] that you see [that] becomes the picture in the front of the chapter book.” A bereaved parent mentor reported, “I told [my mentee that] the firsts are always difficult… I shared with her how my first Christmas without (my son) was stressful because I worried about making everyone sad around me because I was sad… I finally gave myself permission to feel what I was going to feel that day.”

Some of my prior published research concerning the narrative experiences of adolescent oncology patients, their parents/friends/caregivers, and their health professional teams has identified overlapping and parallel experiences, particularly amongst parents/caregivers and health care professionals (D’Alessandro, 2022; D’Alessandro & Frager, 2014; D’Alessandro & Frager, 2017; Flavelle, 2011; Nelles et al., 2018.) These articles further this discourse. Not only do these studies describe universal aspects of grief, they highlight innovative ways to support grief. Specifically, there is a need to address physician and trainee grief moving forward.

Other Cited Works:

D’Alessandro, P. (2022) Research-based theater in the pediatric oncology setting: balancing ethical tensions. Qualitative Inquir. Advance online publication: 10778004221097637

D’Alessandro, P., Frager, G. (2017). Digital medical humanities: stage-to-screen lessons from a five year initiative. BMJ Medical Humanities: 43(4), 269-270.

D’Alessandro, P., Frager, G. (2014). Theatre: an innovative teaching tool integrated into core undergraduate medical curriculum. Arts and Health: 6(3), 191-204.

Flavelle, S.C. (2011). Experience of an adolescent living with and dying of cancer. Archives of Pediatrics & Adolescent Medicine: 165(10, 28-32.

Nelles, L.J., Hamilton, P., D’Alessandro, P.R., Butterworth, S.A., Frager, G., Rezmovitz, J., Gao, L., Suvendrini, L., & Skorzewska, A. (2018). The use of theater with medical residents: An Embodied approach to learning about self and other. In A.D. Peterkin. & A. Skorzewska (Eds.) Health humanities in postgraduate medical education: A handbook to the heart of medicine. (pp. 169-190). Oxford University Press.