Hospice and Palliative Care 1.0

I had the privilege to attend both The Social Work Hospice & Palliative Care Network 2017 General Assembly and The Annual Assembly for Hospice and Palliative Medicine last week. One was planned, and the other was a sneaky maneuver that I could not have done without a little help from Twitter. Once word got out that I was interested in attending the second conference, fellow patient advocates, doctors, social workers, and friends jumped on the wagon cheering me on and offering up solutions for how I might be able to sneak in.

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Within 24-hours an extra pass for me had been located, and I had found my way past security.

There was a plenary session on physician-assisted death, a topic very relevant to the brain tumor community. When I saw that the session was taking place, I immediately thought of Brittany Maynard and her advocacy for the right to die on her own terms in 2014 . I decided to ask a question. I asked, “The brain tumor community had a Twitter chat dedicated to the right to die when Brittany Maynard moved to a different state for the right to have a physician-assisted death because she had glioblastoma. My question is how do you think social media and media attention to physician-assisted death will play a role in this conversation as it continues to evolve?” The presenters in the session responded very thoughtfully, agreeing with each other that this is an issue that they think people are simply going to have to get on board with as time evolves, just as many people have with same-sex marriages.

My favorite session out of both of the conferences had to do with when medical and legal worlds collide and conflict at school. Unfortunately, many schools require court orders from parents or are being sued before they will agree to follow a Do Not Attempt Resuscitation (DNAR) plan for a medically complex child, such as the adolescents with muscular dystrophy that I interviewed for my thesis. This is because parents of other children are afraid of what their children will witness, and because teachers are afraid that they won’t be doing enough to prolong children’s lives if they do not attempt resuscitation based off of personal beliefs. What teachers don’t realize is that by following a family’s Do Not Attempt Resuscitation wishes they are doing exactly what the family wants them to do. Most importantly, do not code does not equal do not care for the child. Comfort care can and certainly should be applied at end of life whether that is at home or in a classroom. There have been a number of cases where schools have actually called child protective services and reported families who have submitted DNARs, causing families to become fearful about expressing their child’s end of life wishes – something that should never happen.

These opportunities to of learn about hospice and palliative care were a great primer for what’s coming up next week: Coalition for Compassionate Care of California and Children’s Hospice & Palliative Care Coalition Annual Summit, where I’ll be speaking about palliative care, or lack thereof, in adolescent and young adult medical experiences. We don’t know what we don’t know, and attending these conferences right here in Arizona was a huge learning experience. I was able to share some of what I had discovered from my own research, as well as add to my resource list for others. I’m curious to see how next week’s conference differs from these two, and in what ways it’s the same given that they’re all taking place so close to each other and on the same overarching theme.

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