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The future of palliative care - Issue #15


The future of palliative care

June 24 · Issue #15 · 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.

“We cannot solve our problems with the same kind of thinking we used when we created them.” Albert Einstein

James Lewis and his wife Jennifer, before his heart transplant
James Lewis and his wife Jennifer, before his heart transplant
1. A post-transplant parable: the hi-tech conveyor belt.
Charles Ornstein of ProPublica & Mike Hixenbaugh of the Houston Chronicle detail a story not often heard in the media: what happens when a high-risk, high-reward procedure like a heart transplant goes bad. What they’re chasing is an investigation of St. Luke’s, a heart transplant center in Houston. But what they captured is a much larger pattern: the reassuring patter from the doctors, the gradual abandonment, the family’s confusion and, later, fury over a horrible death. The audio snippets are devastating: when the attending asks, before placing an artificial heart, ‘do you want him to die,’ his wife says ‘I was shocked at first…it was just point blank…“
A Death in Slow Motion
2. The physician-hero: a cherished role now obsolete?
“Some of the hardest-working physicians have responded to the demands of complex medicine by redoubling efforts to manage all aspects of care. [They] embody what we call heroic value.” Writing in NEJM Catalyst, Nurok, Sundt and Gewirtz, describe why an old pattern in which a physician-hero-expert serving as a linchpin now creates problems: longer decision cycles, inefficiencies, poor staff morale, reduced value. All true. But what they don’t describe is what the new role for physicians looks like, and what physicians gain in exchange for giving up the trappings of authority and privilege they cut their teeth on. We are going to need to be a lot smarter about how we engineer culture change.
The Adverse Impact of the Physician-Hero on Value and Team-Based Care
3. "I thought i knew my patient." [But i didn't.]
In the Guardian, Ranjana Srivastava describes how her own habits of mind blocked what she took in about her patient’s values: “Within the confines of my small, windowless office, our world contracted until all I saw of her was what I expected to see.” A beautifully drawn example of what Harvey Chochinov calls clinical humility. “Filing out, I think about my patients who deserve more. A man next to me sighs, “I’ll miss her. Did you know her well?…I have to confess ‘not really’…” Thanks Ranjana for your fearlessness, and wisdom.
I thought I knew my patient. At her funeral, I realised my hubris | Ranjana Srivastava | Opinion | The Guardian
4. Is the NIH peer review system broken?
In PNAS, Pier & colleagues examined whether the NIH peer review process is replicable. Spoiler alert: the re-review is not even close. From the abstract: “We replicated the NIH peer-review process to examine the qualitative and quantitative judgments of different reviewers examining the same grant application. We found no agreement among reviewers in evaluating the same application.” My own unsystematic take on this is actually more discouraging: anecdotes of reviewers texting scores to colleagues outside the room, etc. Perhaps understandable, given the difficulty of NIH funding these days. But worth noting because this PNAS study surfaced in the NYT, along with another report on a ‘disturbing’ collaboration between NIH researchers and the alcohol industry. This is not just academic politics; it’s undermining public trust and willingness to fund research.
Low agreement among reviewers evaluating the same NIH grant applications | PNAS
5. The 'right to try': our doppelganger?
While we await for HHS to approve a Medicare demonstration of a new payment model for serious illness, there’s this: on May 30, President Trump signed new legislation that gives ‘terminally ill patients the right to use experimental medications that have not yet been approved by the Food and Drug Administration’. This legislation will change little–even CBS News concluded that it was ‘false hope’ for patients but a political win for Libertarian politicians. But it’s worth following because it’s part of the cultural dialogue about dying, and in particular, the deep story that you need to go down trying. For this group, the ‘good death’ is not just irrelevant–they find it offensive.
How the 'right-to-try' movement muscled its way into Washington
6. A father & son make their way through The Odyssey.
Daniel Mendelsohn, a classics professor at Bard College, writes in The New Yorker about having his father, then 81, take his freshman seminar on Homer’s Odyssey. Then they take a cruise together to visit Troy. “It occurred to me,” Mendelsohn writes, “that perhaps this affable and entertaining gentleman was the person my father was always meant to be, or had possibly always been, albeit only with others.” An endearing look at the mystery of what fathers and sons mean to each other, and how they talk about it. Including an exchange about dying that made me smile. They never quite make it to Ithaca, and Mendelsohn mentions his own translation of a poem by C.P. Cavafy; my own favorite translation is here. Totally worth a click.
A Father’s Final Odyssey | The New Yorker
This newsletter is made possible by the John A Hartford Foundation. But the opinions & recommendations are mine alone. The thing that really made me cranky over the past week is in the VitalTalk blog.
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