Physician advocacy for shared decision-making with a capable minor

By Thomas Cox, MD, Washington University

Connor shared with our preoperative nurse and the nurse practitioner who performed his initial assessment that he didn’t wish to proceed with preparations for a second transplant. They related to me that he was a very mature teenager who’d already done research regarding his predicted life expectancy following transplant as well as his anticipated quality of life given his past medical history. For much of his life, Connor had endured frequent hospitalizations, rejections, biopsies, and was now on supplemental oxygen at home. As he was still a minor, his mother and father had parental authority to make definitive medical decisions. They wanted him to proceed with the upcoming catheter placement prior to awaiting a hopeful transplant in the future.

When I entered the room to discuss the impending procedure and general anesthetic to place an permanent indwelling catheter for medications, Connor abruptly stated he did not want to have another transplant. His mother immediately asked to speak with me outside the room. I tried to make eye contact with Connor but he remained stoic looking down at the floor.

Connor’s mom stated that she and her husband felt he was too young to make such an important life-and-death decision. She then asked if I could just give Connor something through his IV so he didn’t he was going to surgery. I immediately felt a mix of anger and empathy following this request knowing this is a difficult situation for any parent to be in. I replied that I didn’t feel comfortable proceeding until we had explored Connor’s apprehensions further. I told her that we have counselors assist with this discussion if desirable, but I felt a reasonable first step would be for her to have a discussion with Connor and her husband first. We sat in silence for a moment. Connor’s mother than stated she was ready to go back to Connor’s room.

As I was observing Connor’s mom having a thoughtful discussion with her son, the operating surgeon approached me asking why we were delaying surgery. Before I could respond, Connor’s mom approached us stating that they didn’t wish to proceed with surgery until they’d decided whether Connor should move forward with another transplant. I was happy the surgeon and I agreed with postponing surgery until everyone was comfortable with Connor having a second transplant. I was prepared to unilaterally delay surgery if necessary and had already prepared myself for the repercussions.

I learned from a transplant coordinator that Connor and his parents reached a mutual decision regarding his second transplant. I remain grateful for the intuition and wisdom of nursing colleagues when navigating challenging professional encounters with patients and families. I also appreciate the values and ethical principles I share with my physician colleagues. Finally, I’ve learned to not prejudge a parent’s initial reaction when confronted with a challenging medical decision, which is rooted in love and the desire to prolong the life of their child.

Learn more:

Scopetti M, Santurro A, Gatto V, Padovano M, Manetti F, D’Errico S, Fineschi V. “Information, sharing, and self-determination: understanding the current challenges for the improvement of pediatric pathways.” Front Pediatr (2020) 8:371. DOI: 10.3389/fped.2020.00371

Vallo-Sacchettini, Zimmerman C, Janjic O, Elger B. “Involving adolescents in decision-making in pediatric organ transplantation: a qualitative study in Switzerland.” Pediatric Transplantation (2025) 29:1-9. DOI: 10.1111/petr.70146

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.