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The future of palliative care - Issue #21


The future of palliative care

September 24 · Issue #21 · View online

In many respects, we've arrived. Yet what we know now won't get us to the next level. So I'm looking for signals from the future, & I'm curating them here.

“To attain knowledge, add things every day. To attain wisdom, remove things every day.” Lao-Tzu

1. Patients & clinicians aren't aligned...on incentives?
The fact that incentives for patients bear little relationship to incentives for providers is so obviously a fact of life that i’ve never given it any thought. But as Navathe et al point out in JAMA, from the perspective of incentive design, what patients and providers get rewarded for doing is frequently at cross purposes. For example, physician salary structures often reward them for increasing their performance of procedures (eg volume of surgery done); patient out of pocket expenses often create extra burden for beneficial services (eg rehab after cardiac surgery). What could alignment look like in palliative care? Could clinicians be rewarded for understanding patient values *and* patients be rewarded for doing the work to understand and articulate their own values? Instead of specialists feeling like they don’t get reimbursed for conversation, and patients feeling like they are being forced to discuss uncomfortable stuff?
Aligning Patient and Physician Incentives
2. The illness experience that isn't heroic.
In an illness narrative that flips the usual heroic, Joseph-Campbell-inspired, journey, Porochista Khakpour evokes a fundamental experience that is often overlooked. Her account of Lyme Disease is frustrating, maddening, and horrifying. “An ambulance arrived, and a black paramedic tried to take my vitals as I convulsed, foaming at the mouth, going in and out of coherency. When she finally got me to make some sense, I immediately expressed a worry: Please don’t take me somewhere where they are racists.” Her sense of being yanked into an unreal world reminded me of Safe, arguably Todd Haynes’ best movie (it put Julianne Moore in the top rank), and Audre Lorde’s Cancer Journals. In the future, these accounts would form a new kind of textbook for clinicians trying to understand what ‘patient-centered’ really means, and where that rhetoric fails.
Memoirs of Disease & Disbelief | The New Yorker
3. A social media star wise beyond her years.
Claire Wineland, a well known social media personality with cystic fibrosis, died after a lung transplant that was complicated by a stroke. What interested me about her story is that is a new kind of transplant story: she gave it her all, and then in the aftermath of her stroke, it was clear to her mother that ‘it was Claire’s time to go’–they had a series of conversations in which Claire had made it very clear where her values were. Claire’s decision making before her transplant and her mother’s experience making the decision didn’t receive a lot of attention. But it should have: there was a lot of wisdom in this young woman.
Claire Wineland on Instagram: “This post is about to be a life update/rant of all rants so click if you are bored and in need of entertainment.…”
Meet Claire, Finding Beauty in the Sadness | My Last Days - YouTube
4. What kids ask, if we let them.
@HiHoKids is a Facebook video channel with over 100 thousand subscribers, created by, a storytelling company launched in May 2017. They post a weekly video: kids talking to a bank robber, an opera singer, a vet, a school shooting survivor. It’s fresh & genuine, and charming. This video, which i heard about from Katy Butler, really puts a new spin on the serious illness conversation. What could we learn from this? At the very least, getting out of our worn-out storytelling boxes…
Kids Meet a Terminally Ill Person | Kids Meet | HiHo Kids - YouTube
5. A regional collaborative improves cardiac care.
From Health Affairs, an important descriptive study of Be There San Diego, a multi-stakeholder regional collaboration to improve quality that targeted four domains: “clinical, community, community-clinical linkages, and the health care ecosystem.” This started with Federal funding as a voluntary organization; they set up governance to sustain the project, which involved confidential sharing of aggregate data among health systems. As the authors write, “activities were aimed at increasing trust and engagement among entities that frequently compete in the medical market.” San Diego county is large–the second most populous in California, and home to a diverse population–you can’t object that this happened in a small boutique state. That they have created a collaboration of this kind suggests a model that we could follow–and given current politics, regional work might be a way to build capacity so that we can be prepared when the next moment of opportunity strikes. (If you have a paywall issue, look here.)
Be There San Diego
This newsletter is made possible by the John A. Hartford Foundation, but the opinions and recommendations are mine alone.
I’ll be at the C-TAC Summit in Denver Oct 9-11, presenting work about the future of palliative care–see you there!
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