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The future of palliative care - Issue #25

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"Love is not a victory march. It's a cold and it's a broken hallelujah." Leonard Cohen
 

The future of palliative care

October 28 · Issue #25 · 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.

“Love is not a victory march. It’s a cold and it’s a broken hallelujah.” Leonard Cohen

1. The 'puke funnel' and the use of science.
Google Trends from The Puke Funnel
One of the most perplexing phenomena about the current political discourse is about the use of information. As Judd Legum, the founder of ThinkProgress, put it in his newsletter Popular Information: “Trump isn’t interested in the facts. He’s interested in shifting the political conversation. And he’s succeeding. Trump has not been able to do this alone. He’s had a lot of help from the right-wing puke funnel. Trump vomits words, and a constellation of collaborators gets them everywhere.” This is not just about politics: we’ve been seeing it–construction of rhetoric that seizes an emotional need–in palliative care. Think Alfie Evans, the baby that died of a mitochondrial disease at Alder Hey Childrens’ Hospital in Liverpool. It’s a signal from the future about the nature of science itself. Bruno Latour, profiled just this week in the New York Times, has been philosophizing about this for some years, and the core of his point is this: facts do not speak for themselves. Scientific knowledge is the product of a sociological process, in which there will always be those who place themselves outside. This has even been featured in Science, in a commentary on meta-analyses (for access click here). We’ve been seeing patients and families distrust science for some years, and we’ve written it off as ignorance; now we’re seeing it at the ballot box. This issue isn’t going to go away.
The puke funnel
2. Patients don't shop: more data on the market fallacy.
What many clinicians know is something that economists are still trying to figure out: when you’re sick, your don’t shop around for the best price. To me, it’s a ‘duh’ insight. But to be fair to the economists, the empirical data is scant. So this new study, covered in Bloomberg, and accessible here, warrants attention. Lower limb MRI scans are an 'undifferentiated’ service (ie quality not variable) but prices vary 5-fold (!)–and even though patients are responsible for big co-pays, “fewer than 1 percent of individuals used a price transparency tool to search for the price of their services in advance of care.” It’s another example of when facts don’t change minds, as Elizabeth Kolbert put it. This point is foundational for the direction health care takes in the US. Is there a route towards real dialogue about it?
To Save on Health Care, Change What the Doctor Orders - Bloomberg
3. What patients & families know that deters them from shopping.
The current not-so-great state of living with a serious illness is having to piece together, over and over, the completeness of your own medical information. In a great piece from Undark, an independent medical reporting site funded by the Knight Foundation, Ilana Yurkewicz (a physician-journalist) describes a horrifying case of fragmentation. And what’s even more awful is that my own response, reading it through my clinician lens, was resignation: ‘oh yeah, I see this all the time.’ As Yurkewicz concludes: “We will continue to push papers through fax machines, to wait on hold as we cold-call those who may provide answers, and to repeat tests from scratch when we’re stalled.” That’s life in between the silos.
Paper Trails: Living and Dying With Fragmented Medical Records
4. Thinking on power and social justice.
From Chris Corrigan’s blog, a thought-provoking pointer to the moment we’re in. Recounting a discussion focused on “How do we collaborate with dictators?” he reflects: I have come to ask that question of myself, reframing it as “How do I collaborate with myself when I am being a dictator?” Yow. As we (leaders, stakeholders, and commentators in palliative care) work towards scaling up, it is instructive to step back and remember we too are at a moment before collaboration or polarization. Think how hospice turned into the opposite of right-to-try. Chris points to Tuesday Ryan-Hart’s work on collaboration as a way to loop power into models of collaboration, and i find principles 3, 4, and 5 especially notable. #3: Seek multiplicity; #4: All levels, all the time; #5: Power (all types) matters. As we are seeing, creating divisions to create support has a huge cost. We need a big tent.
Can we find a way to focus on what we share?
5. Facts still matter, even when they're inconvenient.
Adjusted for age, preexisting cognitive impairment, frailty, comoribidites. Wow.
The randomized trial just published in the New England Journal of Medicine showing that haloperidol and ziprasidone were no better than placebo for ICU delirium was shocking, since these drugs are considered a mainstay of ‘usual care’. It’s a useful reminder that science, carefully done, can really help us–even if it tells us that we need to go in a different direction altogether. But as Latour might point out, the evolution of science, like the evolution of clinical medicine responds to the exigencies of the moment in which it occurs. The particular situation of ICU delirium, and our hope that another medication will be the answer, deserves a step back to a larger question–that Ryan-Hart might say is: does this reflect the illness trajectory laid out by the power structures that currently exist in medicine?
Haloperidol and Ziprasidone for Treatment of Delirium in Critical Illness | NEJM
This newsletter is made possible by the John A Hartford Foundation, but the view, opinions and recommendations are mine alone.
To our friends in Pittsburgh: we are holding you in our hearts, and we stand with you.
I know i promised you access to a talk I gave in the last newsletter, but i’ve had a series of technical glitches and other complications–so stay tuned! (And thanks for your patience)
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