Hospice and Palliative Care 2.0 – CCCC

All of us do it. Literally 100% of us die.

That death doesn’t have to be full of pain and suffering, though. Marta Friedman, LCSW from UCSF remarked during one of the office hours sessions that, “Almost any moment can be a palliative moment.” It’s true.

My favorite session at the Coalition for Compassionate Care of California and Children’s Hospice & Palliative Care Coalition 9th Annual Summit was Defining, Evaluating & Articulating Social Work in Pediatric Palliative Care. The biggest realization I had during the session was that when children ask, “Am I dying?” it’s a social worker’s job to try and get to the real question of what the child is wondering about, and more often than not that’s really about a symptom, a parent’s behavior, or change of environment. I also really liked how this group of highly intelligent women talked about being “generalists,” and having to understand all disease continuums and processes across care. That’s quite the responsibility.

The panel that I spoke on with Rachael Goldring went extraordinarily well, and received nothing but positive feedback. I think that this largely had to do with the different energies we presented the audience with, as well as how opposite our stories and experiences with (or without) palliative care were. My final message for the audience in regards to talking to pediatric patients about palliative care was to ask early, ask often and ask gently. You can view the panel here by starting around 51 minutes into the stream.

Rachael’s perspective was that not telling a pediatric patient everything about their care is the worst thing you can do as a provider, but I countered her statement to remind audience members that there really is no one size fits all recommendation here, as some patients are information seekers, others information avoiders, and that the use of developmentally appropriate language during disclosure is critical. I also asked those in the audience to reflect on Dr. Zitter’s recent column about the necessity of Death Ed with Dr. Dawn Gross, and ask themselves why we have sex education, but not death education when both are relevant to everyone’s developmental lifespan.

Dr. Jessica Zitter’s talk reminded me that patients cannot die well if they don’t know they’re dying. They can’t access hospice or palliative care if they don’t know they qualify or even need it. Why doesn’t this get talked about? Well..what do we fear more than dying? Dying badly. In fact, in the information that she presented, 54% of patients said that being dependent on a breathing machine or ventilator would be worse than death.

My biggest takeaway from the conference was probably wrapped up in Dr. Zitter’s talk about medical interventions that are put into place, and while they might be seemingly well meaning, they don’t always produce outcomes that patients want, or even need, really. Sometimes interventions are trauma more than anything. How do we make sure that medical interventions aren’t just trauma? We share what we know as patients.

Disclosure: I receive financial support for travel, lodging, and registration fees for this conference, as well as a speaking honorarium. The views expressed in this post are my own.

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.