Bioethics, the term first coined by someone (who is a controversy) in 1971, includes four principles – respect for autonomy, nonmaleficence (do no harm), beneficence (for me, on behalf of me), and justice. Ken Goodman spoke about two of the four principles autonomy and beneficence. As with much when you start peeling back the layers, bioethics are not simple, not black and white, rather shades of grey.
Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world.
This second podcast of the series is with Sara Lorraine Snyder, a fine, eloquent, young woman who has lived her entire life with chronic medical issues. She’s learning to drive her own healthcare and manage the transition to adult medical care.
“If you were playing with the team for football or whatever and then they come you come in the next practice and half of your team is completely new people that you don’t even know and then you don’t know how to effectively work with that team so that in the end of the day you can win or like achieve, whatever you need to.” Sara Lorraine Snyder
Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries, crossing the threshold, primary physician, autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. “If there’s any communication, that has to go through me. Unfortunately, I have to network that system and that’s just really cumbersome.” “I can also help other people that have questions about how to transition. I’m certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better.” “He’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. But it’s hard.” Read More