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The future of palliative care - Issue #10

"We will embarrass our descendants--just as our ancestors embarrass us. This is moral progress." Sam

The future of palliative care

April 29 · Issue #10 · 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 will embarrass our descendants–just as our ancestors embarrass us. This is moral progress.” Sam Harris

1. What shapes the moral landscape of our work?
“Looking back, it seems strange that health care providers would ever have been so troubled by things that seem so routine to me now.” In Health Affairs, a palliative care physician, Myrick Shinall, reflects on moral feelings prompted by deactivation of a VAD. My own take on this: facing death that is foreseen, and orchestrated is changing everything about how we deal with it. You can read Shinall’s account here–he wrestles with orchestration vs hastening. And for a stunning account, albeit one that involves physician-assisted death, listen to the story of John Shields.
Planning the Perfect Death - The New York Times
2. The continuing moral struggle of families vs doctors.
Medical expertise about dying is being challenged–at the edges of practice, for sure, but there has been a steady stream of chronicles in the professional and lay press. Most recently, the parents of Alfie Evans, a nearly-2-year-old with a degenerative neurological condition, mobilized protests from a variety of sources, from Alfie’s Army to the Vatican, to protest a death that physicians foresaw and were trying to orchestrate. Rachel Aviv, in the New Yorker, describes a child who is legally dead in California but alive in New Jersey. The explanations from experts in medical journals didn’t help. These aren’t anomalies–they’re logical products of our current medical care system.
What Does It Mean to Die? | The New Yorker
Alfie Evans: the controversy surrounding the terminally ill British toddler, explained - Vox
3. A re-examination of compassion.
In a provocative commentary in Medical Humanities, Zaman et al note that “[Western] legal and regulatory codes…promote the thinking that dying requires professionals because they will know how to conform to regulatory health and safety requirements….The fear of inadvertently transgressing causes a degree of public anxiety and reluctance for the lay person to get involved…” 
A moment for compassion: emerging rhetorics in end-of-life care
4. A view of compassion as a series of edge states.
In her new book Standing at the Edge, Roshi Joan Halifax sees the moral landscape, from the individual view, as a series of edge states. The edge, in her view, is the place we need to learn to stand–too little empathy, for example, leaves us disconnected; too much empathy, can suck us in.  [Full disclosure: I’ll be teaching with Roshi next week at Upaya.]
Standing at the Edge | Joan Halifax | Macmillan
5. Could we talk about cost?
With public opinion polls indicating that the number one fear of families is now bankruptcy, the question of ‘who pays what’ has become the godfather of palliative care. The impossibility of discussing cost is evident in the stories mentioned above about McMath and Evans. And as much as I love Elisabeth Rosenthal (I’ve featured her must-read book An American Sickness), I’m a little ambivalent about her latest op-ed calling for a Financial Bill of Rights for patients. I love the things she wants, but i’m uneasy about calling for more 'rights’. Perhaps this language will indeed mobilize patients who feel oppressed by a Kafkaesque system. But 'rights’ point to politics, and justice–and right now, those American systems have succumbed to a different kind of sickness. 
Opinion | Nine Rights Every Patient Should Demand - The New York Times
6. Even families are being re-invented.
If you live in Tokyo, you can rent a spouse, children, and ancillary relatives. They act, you relate, and something happens. This takes emotional labor to a whole new level. But the existence of the rent-a-family industry puts another layer on the moral landscape that forms the social context for palliative care: our culture is capable of commodifying even human feeling, and absent a solid moral anchoring, our common-sense, gut-level, guidance about what’s right is all-too-subject to failure. Mortifying.
Japan’s Rent-a-Family Industry | The New Yorker
This newsletter is made possible by the John A. Hartford Foundation. But the opinions, views, and recommendations are all mine. Have a great week. And if you need moment of whimsy, look at this
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