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The future of palliative care - Issue #27

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"[Because of all the hostility]...I prefer to be in the dark." Jamie McDaniel, interviewed by Hidden
 

The future of palliative care

November 20 · Issue #27 · 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.

“[Because of all the hostility]…I prefer to be in the dark.” Jamie McDaniel, interviewed by Hidden Tribes.

These clusters predict views better than demographics or partisan labels.
These clusters predict views better than demographics or partisan labels.
1. What the narrative about our polarization leaves out.
A fascinating empirical report on political views
A fascinating empirical report on political views, conducted by the nonprofit More in Common, paints a view of the US quite different from the ‘blue coasts vs red interior’ rhetoric. The Hidden Tribes study started a survey of 8000 Americans using values questions to separate people into clusters (rather than using self-reported political affiliations) identifies 7 clusters. What the media reports is largely the extremes–progressive activists vs devoted conservatives–and what we don’t hear about are the 3 clusters in the middle containing people who are tired of the fighting, cynical about the political process, and actively disengaged. What this means for palliative care: my hunch is that these clusters have something to say about the use of life-sustaining interventions, the right-to-try, and what caregiving means. The danger is that palliative care becomes affiliated with liberal ideas about healthcare–that would put us in the crosshairs of the next death panel message.
Just skim the figures--well worth 15 minutes.
Just skim the figures--well worth 15 minutes.
The Hidden Tribes of America - Hidden Tribes
2. The 'triple aim' faces a 'triple threat'.
Andy Slavitt was the Acting Administrator for the Centers for Medicare & Medicaid Services under President Obama, and in the JAMA blog he writes about a ‘triple threat’ that will 'overwhelm the potential for any significant progress’ towards the triple aim. What does he name as the triple threat? 1. 'overwhelming disparities’; 2, 'revenues, revenues, revenues’ as the driver of C-suite decision-making; and 3. the 'politicization of health care’. He writes: “Vaping companies and gun rights groups have significant influence on public health and massive lobbying operations that fly directly against the Triple Aim.” I have a great deal of respect for Slavitt, and he’s right about the lobbying. Yet these issues are not the place for a dialogue that could bring our country closer together on health care. We need a message that lives in a separate space from the most polarized issues.
JAMA Forum: The Triple Aim Must Overcome the Triple Threat – news@JAMA
3. What our brand means now, & what it needs.
For many of our colleagues and patients, the term ‘palliative care’ has become synonymous with 'end of life’ care. And even though 'palliative care’ was meant to be an inclusive term, it was originally positioned as separate from end of life care because dying is so threatening. This issue is resurfacing as palliative care moves into the outpatient / community space, and the lesson from a California project is clear: clients don’t want to hear, at the beginning, about dying. In another study, done by researchers at the University of Pennsylvania, health information materials framed as 'supportive’, 'palliative’, or 'hospice’ were rated by breast cancer patients; materials labeled as ‘supportive’ were “most likely to be selected and considered valuable (p <0.01). [For access click here] If we want laypeople who are looking at our services at a time of huge stress and threat, we need to create message that enables them. What we have now is message confusion–as one foundation exec told me, 'it’s brand failure’.
Patient and Caregiver Perspectives on How to Introduce PC
4. What we do is more clearly defined than ever.
Underneath this messaging issue, though, we have more clarity than ever about what constitutes palliative care. New guidelines, developed by the National Coalition for Hospice and Palliative Care (NB: the messaging issue is really everywhere), backed by a systematic review in JPSM, lay out what we are capable of. Now we need to figure out how to translate the benefits to the public. Importantly this work reflects a broad consensus across the field built on over a decade of leadership by Betty Ferrell, Diane Meier, and the participating organizations–it proves to policymakers and legislators that we have a professional consensus even in the midst of a chaotic environment.
New Clinical Practice Guidelines for PC
5. Why we have to pay attention to messaging.
At an earlier point in my career, i figured that doing good clinical work would eventually solve these pesky messaging problems. I was wrong. And what makes our need to address messaging is the tendency of social media to amplify extremes, the preference for credible reporters to cover conflict, and the weaponization of outrageous memes. What Donald Trump does in the media is straight out of the playbook of internet trolls who intentionally plant outrageous ideas to gain coverage for the fun of it. Ezra Klein covers this brilliantly in his podcast with Whitney Phillips (it’s long but fascinating)–and what’s clear is that mainstream media outlets now realize they are being manipulated but still operate by a now-sadly-outdated adage that shining their media spotlight operates as a disinfectant. What this means for palliative care is that we need to reexamine what we are doing with social media and how we participate in it. The heart-tugging stories of extremes–ones i’ve covered in this newsletter like Charlie Gard and Jedi McMath–might just be stoking a polarized response to how we view technological miracles, care for people living with a serious illness, and the medical management of dying.
The Oxygen of Amplification | Data & Society
This newsletter is made possible by the John A. Hartford Foundation, but the opinions, recommendations, and views are mine alone.
Big thanks this week to Diane Meier, Lisa Morgan, & Amy Melnick; and be generous with your thanks this holiday. If you need a chatbot to give you tips how to talk about politics with your relatives, read this.
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