Takeaway
Capable minors deserve a voice in their care plans—particularly in decisions that will define the rest of their lives. Clinicians must advocate for their perspectives to be heard and valued.
Lifelong learning in clinical excellence | July 21, 2026 | 2 min read
By Thomas Cox, MD, Washington University
Connor, an adolescent patient, shared with the preoperative nurse and the nurse practitioner who performed his initial assessment that he didn’t want 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 a permanent indwelling catheter for medications, Connor said again that he didn’t 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 was looking down at the floor.
Connor’s mom said they felt he was too young to make a life-and-death decision. She then asked if I could just give Connor something through his IV so he didn’t know 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 responded that I didn’t feel comfortable proceeding until we’d explored Connor’s apprehensions further. I shared that we could have counselors assist with this discussion, but I felt a reasonable first step would be for them to have a private family discussion. She agreed with this.
As I was observing Connor’s mom having a thoughtful discussion with Connor, the operating surgeon approached me asking why we were delaying surgery. Before I could respond, the patient’s mom approached us and said they didn’t want 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.
What I learned
I learned from a transplant coordinator that the patient and his parents reached a mutual decision regarding his second transplant. I remain grateful for the intuition and wisdom of my nursing colleagues when navigating challenging professional encounters with patients and their families. I’m especially appreciative for the values and ethical principles that I share with my physician colleagues. I’ve also learned to not prejudge a parent’s initial reaction when confronted with a challenging medical decision, which is rooted in love and their ultimate desire to prolong the life of their child.
Further reading:
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.