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The future of palliative care - Issue #29


The future of palliative care

March 4 · Issue #29 · 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.

“Let me tell you the picture that really, really pained me. You were leaving the prison…and, I guess it’s your daughter, had braces or something on…man, that hurt me.” Rep. Elijah Cummings, closing Michael Cohen’s public testimony.

1. What does trust mean for an organization?
Thomas Lee, writing in JAMA, notes that “trust is increasingly understood to be at risk and in need of attention.” I’d say: we’re having a trust crisis. And watching Michael Cohen taught me something that i think applies directly to medical care. Let me step back to explain: Lee points to ‘solutions’ that are almost entirely external: the first 3 are “leadership”, “measurement”, and “transparency”. When he does mention “relationships”, Lee only references relationships ‘between patients and health care professionals’. But what i think is missing here, is that trust really starts at the relationships that individuals have with each other. When you trust an organization, it is because you trust the individuals who make up that organization. What Michael Cohen demonstrated is that trust needs to exist between the people in the organization. And that is where the trust building in medicine needs to begin–with our colleagues, with our clinical managers, with our organizational leaders. That is where the big disconnect exists. As Rep. Cummings said at the end of Cohen’s hearing. “I’ve sat here and listened to all this. And it’s very painful.” [Access here.]
A Framework for Increasing Trust Between Patients and the Organizations That Care for Them. JAMA
2. A tale of a trust breakdown, in hospice.
Steve Lopez, a reporter for the Los Angeles Times, writes about his own loss of trust in hospice, in what i’d consider an ecosystem failure–his mother Grace was discharged from a hospital to a private home with hospice beds on a friday, arrived there still delirious (one of the problems that influenced the inpatient team to recommend against hospice at home), not enough support from the hospice team (although lots of apologies). This journalist son is left asking, ‘why the rush’, and ‘shouldn’t the hospice and hospital have coordinated the handoff?’ And he’s planning to write more: “I’ve been talking to local and national authorities about the strengths and weaknesses of hospice care and about their recommended reforms, and I’ll have more on that in coming weeks.” His real message: you can’t trust them.
To Grace Lopez with love — and apologies that your end wasn’t better - Los Angeles Times
3. Where is medical care located, really?
“The mobile phone is the disruptive technology, and that is where the hospital will move.” This is Shobana Kamineni of Apollo Hospitals in India (the largest integrated healthcare conglomerate in Asia), quoted at Davos. The future of medicine, according to Stephen Klasko, CEO of Jefferson Health in Philadelphia, present us with a choice: disrupt or be disrupted: “the consequences of clinging to legacy systems of care will become even greater, further growing a fragmented, expensive, inequitable health delivery system. The U.S. has strung together popsicle-stick-and-glue federal policies that continue to graft Star Trek-level medicine onto a Fred Flintstone delivery platform.” What’s implicit in this comment, although Klasko doesn’t call it out, is a call for a kind of reconstruction of trust in a new, distributed, virtual + f2f care. You knew Fred Flintstone, and knew his foibles. But even Star Trek, with its ‘medical tricorders’, had a doctor–a person (with his foibles too.).
Dispatch from Davos: Hospitals of the future will not be traditional hospitals
4. Katy Butler explains serious illness as a journalist.
Disclosure: I know Katy well, and there's a blurb from me inside.
Disclosure: I know Katy well, and there's a blurb from me inside.
I’ve read a zillion ‘how-to’ books about palliative care for laypersons–and this one has become my new go-to. It’s got a journalist’s sensibility, so just enough medical to be credible, but not constrained by a professional perspective. We in the field would do well to read how Katy uses patient stories and experiences to illustrate every point–and the majority of stories about things people did to make good decisions. This focus on ‘what works’ is what distinguishes this book from the others, which are mostly stories about bad deaths. We get focused on the bad deaths, and what we tell patients and families to avoid, i think because we have a little bit of PTSD lingering from those memories. But what i have learned–over and over (because i’m stubborn)–is that what really motivates people are the good outcomes. The future of our field now depends on engaging the public. Totally worth a read.
The Art of Dying Well: A Practical Guide to a Good End of Life by Katy Butler.
5. Disrupting the 'chemical imbalance' view of depression.
The Real Causes of Depression | Johann Hari
Johann Hari is another journalist, like Katy motivated by his own experiences, to take a non-professional look at depression. What he ends up covering is much less about the neurochemistry of the brain, and much more about social determinants of health. He ends the book with an argument that, as a review The Guardian put it, “if our current malaise lies in disconnection from vital human requirements such as neighbourliness, professional fulfillment, acknowledgment of trauma and so on, then we need to find ways to reconnect. Interestingly there is a chapter on grief as an exception that proves the point that the neurochemical theory about depression (eg you don’t have enough serotonin) is far from the whole story. It’s a great read–i plowed through it in 2 days–and what it made me wonder is: have we medical professionals channeled our own sense of failure into a psychological experience of hopelessness and worthlessness during a serious illness. Do we inadvertently reinforce cultural messages that you must overcome this on your own, that you are worthy to the degree that you perform, or that you will be left to your own devices in a winner-take-all lottery in the high-tech medical care that promises cures (just not for everyone). Thought-provoking.
This newsletter is made possible by The John A. Hartford Foundation, but the recommendations and opinions are mine alone.
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