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.