Exploring the ethical considerations of direct contact in pediatric organ transplantation: A qualitative study
Jordan Wadden1,2, Jordan Hermiston3, Alice Virani4,5, Tom D. Blydt-Hansen6,7, Ranjeet Dhaliwal8, Shelby Gielen8.
1Ethics Department, Ontario Shores Centre for Mental Health Sciences, Whitby, ON, Canada; 2Department of Philosophy, University of British Columbia, Vancouver, BC, Canada; 3Family Services, BC Transplant, Vancouver, BC, Canada; 4Ethics Services, Provincial Health Services Authority, Vancouver, BC, Canada; 5Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada; 6Department of Pediatrics (Nephrology), University of British Columbia, Vancouver, BC, Canada; 7Multi-Organ Transplant Program, BC Children's Hospital, Vancouver, BC, Canada; 8Patient and Family Partner, BC Transplant, Vancouver, BC, Canada
Background: Non-anonymized direct contact between organ recipient and donor families has been explored internationally in the adult context, including the recent development of such a program in British Columbia. However, there is limited discussion about whether direct contact should be extended to pediatric settings due to clinician and researcher concerns of the potential harms to pediatric patients.
Methods: This qualitative project draws on narrative interviews with pediatric recipients, their families, and organ donor families. Interviews were semi-structured and deliberately naive to ensure participant-centred knowledge translation. Interview questions fell into three broad categories: developing context, determining the harms and benefits of direct contact, and identifying needs and safeguards. Interviews were conducted in two stages: those who were further removed from the transplant process occurred first and informed the approach to interviews with those who more recently went through the transplant process.
Results: Twenty-nine individuals participated in twenty in-depth interviews, where some interviews included multiple participants from the same family. Participants were pediatric recipients and families who have aged out and are now in the adult program (n=13), pediatric recipients and families who are still in the pediatric program (n=11), and family members of organ donors (n=5). The study included participants from three major organ systems: kidney (adult n=3, adolescent n=6), heart (adult n=4, adolescent n=2), and liver (adult n=3, adolescent n=6). Eleven recipients indicated they had already met their donor family (n=5) or had learned substantial identifying information about them (n=6). Across all groups, only five participants expressed that direct contact might cause harm or discomfort, while twenty-three indicated they saw significant potential for benefits. Nearly half (n=14) focused instead on the harms to others rather than themselves, and nearly two-thirds (n=20) focused more on the benefits for others than benefits to themselves.
Conclusion: This study indicates that expanding direct contact to the pediatric transplant community may provide more benefits than harms to both recipients and donor families. Likewise, this expansion could take a harm reduction approach to mitigate the effects incurred by those who seek out information even where no direct contact program exists. Therefore, current practices employed in protecting patients and families from harm may have moved beyond reasonable measures. These results suggest a need to revisit assumptions in our practice as clinicians and researchers.
Transplant Research Foundation of British Columbia 2021 Venture Grant.
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