How do you prepare for the possibility of death on the waitlist?
It’s hard for clinicians as well as patients and families, because lots of time you are traveling both paths: you’re trying to extend their life by giving them a transplant, but at the same time you’re sometimes thinking about how to care for them at the end of their life. We have kids that die on the list. We try not to, we hope that doesn’t happen, but sometimes it does, and with the family and with the kid’s guidance, you have to determine how far do you go, how much do you push, when is it time to stop? And that’s going to be mostly driven by what the family and the patient wants, but sometimes they need to know from you that it’s okay to say we’re not going to do this anymore if the kid is suffering. So some families at some point decide that, or the kids get too sick and they’re not a candidate anymore; they’re not medically able to go through the transplant. Sometimes it’s something that is clearly just never going to change, but sometimes it’s, “Well, maybe the kidney issue will resolve.” In that case, we obviously follow along and hope to see that whatever was the issue resolves so the kid can go back on the list. It just depends on the situation.

Debra Boyer, MD, Associate Medical Director, Lung Transplant Program

Almost 20% kids die waiting for their heart, and so for a lot of families, not knowing whether that’s them or whether their heart will come, it’s really hard to prepare too much for a life after transplant – families protect themselves from getting too hopeful. I think families are hesitant to sort of move past transplant in their minds until the organ actually comes.

Elizabeth Blume, MD, Medical Director, Heart Transplant Program