Commentary by Kelly J. Shipman, MS, Palliative Care and Resilience Research Program, Seattle Children’s
Feature Articles: Mekelenkamp, H., Lankester, A. C., Bierings, M. B., Smiers, F. J. W., Vries, M. C., Kars, M. C., & de Vries, M. C. (2020). Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: “Have I been a good parent?” Pediatric Blood & Cancer, 67(5), 1–8.
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Making medical decisions for one’s children can be challenging at any time, but it is particularly heart- wrenching at end-of-life (EOL). In this qualitative study, the authors interviewed parents who faced EOL decision-making in the post-hematopoietic stem cell transplantation (HSCT) setting and whose children had passed away due to cancer relapse or complications of transplant. These parents described holding a lot of hope for this curative treatment, and then felt they were suddenly forced to quickly shift their mindset to end-of-life care for their child. Upon reflection after their child’s death, parents reported wanting to do everything possible for the survival of their child, with the crucial guidance of health care professionals, and many struggled with doubts when reflecting on the care decisions made.
As a senior research associate in pediatric palliative care (PPC), I have worked on numerous PPC studies. I am fascinated by the rich stories I hear when interviewing parents that get at the core of their values and desires for their children. I have implemented studies on parent-clinician relationships during medical decision-making, the decision-making process surrounding home mechanical ventilation, and care conference communication between families and clinical teams who have both concordant and discordant primary languages. I have also worked on longitudinal quantitative studies, interacting with families intermittently over time about their quality of life and experience with PPC. The most powerful part of my work is when parent revelations transform our roles as researcher and subject, albeit momentarily, to simply human beings.
An example of this poignancy is in the article’s central question: “Have I been a good parent?” The authors did a beautiful job of illustrating the complexities of decision-making while parents were taking care of their child through EOL. Some wondered if they had exhausted all possibilities to help their sick child get better. In my role working with parents on studies, I have learned one of the ways parents can feel like “good” parents is by participating in research itself. We know that many parents have benefitted personally from participating in PPC research, appreciating the opportunity to tell their story, experience positive meaning making, and help other families who will undergo similar situations in the future.1 The study results and discussion made me wonder about opportunities to explore with parents whether they had participated in research and if so, how that experience was for them, and if not, if they thought that might have lessened or ameliorated lingering doubts surrounding their child’s EOL experience. Perhaps participating in research is something parents can look back on as therapeutic and something that created meaning during their child’s palliative/supportive care phase of treatment.
In addition to asking parents about participation in research, a related opportunity is the inclusion of a greater diversity of parents in our PPC studies. When we lack a diverse population, as the literature suggests, families historically under-represented in research miss out on another opportunity to feel like good parents through study participation. Therefore, we would benefit from asking parents not only what it means to be a good parent, but what it means to be a good parent in the context of research. Hearing many different voices speak about meaning at a child’s EOL can provide a kaleidoscope of understanding about this uniquely difficult time of life.
References:
1 Weaver MS, Mooney-Doyle K, Kelly KP et al. The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review. J Palliat Med. 2019 Aug;22(8)915-926. Epub 2019 Mar 5.