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The future of palliative care - Issue #23

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"Being mad can be joyful and productive and connective." Rebecca Traister
 

The future of palliative care

October 7 · Issue #23 · 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.

“Being mad can be joyful and productive and connective.” Rebecca Traister

One reason Americans are angry about health care.
One reason Americans are angry about health care.
1. Your deductible is going up: 212% since 2008.
The new Kaiser Family Foundation report on Employer Health Benefits shows a notable data trend: deductibles are skyrocketing. As Dylan Scott put it in Vox: “Just a decade ago, the average American with employer-sponsored coverage had a deductible of $303. Flash forward just one decade, and that number now sits at $1,350.” What this is showing is the back side of the cost problem that Elisabeth Rosenthal laid out in her book, An American Sickness. My take: in the absence of cost controls, the costs inevitably are funneled back to consumers–all of us–but the time lag and lack of transparency make the connection hard to see.
Employer Health Benefits Annual Survey 2018
2. Your family caregiver is female, & "pleasant".
In a national moment that has crystallized the ways that men and women are treated differently, it is worth reflecting that palliative care is gendered too. This systematic review of family caregiving, written by a team from New Zealand (whose Prime Minister Jacinda Ardern brought her baby to the UN), concludes “the moral imperative surrounding family caregiving at end of life falls disproportionately on women.” Care is “commonly perceived as a natural element of femininity”, rendering it “invisible (and devalued)” within systems, policies, and public dialogue. Even while female caregivers report more mental strain and disproportionate rates of depression than male caregivers (who focus more on instrumental tasks), female caregivers are expected to ‘maintain a pleasant and perceived socially acceptable disposition’. Guys: we need to talk about this. [If you need access, look here.]
Gender and family caregiving at the end-of-life in the context of old age: A systematic review
3. Is a 'nostalgic environment' for dementia a lie?
A 'bus stop' in the Netherlands, at the Amstelring Leo Polak care center.
A 'bus stop' in the Netherlands, at the Amstelring Leo Polak care center.
Two accounts of ‘nostalgic environments’ for dementia care just appeared, in the New York Times, and The New Yorker–characterized by a sharp difference in tone. The New York Times saw these residential experiments in a positive light, emphasizing that these institutions are “harnessing the power of relaxation, childhood memories, sensory aids, soothing music, family structure and other tools to heal, calm and nurture the residents, rather than relying on the old prescription of bed rest, medication and, in some cases, physical restraints.” Larissa MacFarquhar, in The New Yorker, wrote that these “psychological placebos, like any placebos, are a form of deception, and so they make people uncomfortable. They seem like a throwback to a time, not long ago, when it was normal and acceptable for a doctor to lie to a patient.” I am reminded of the controversy over John Bayley’s Elegy to Iris. The question here is: how do we decide what it means to respect personhood when cognition has changed to a degree that the self has also changed?
The Comforting Fictions of Dementia Care
Take a Look at These Unusual Strategies for Fighting Dementia
4. Are we ignoring aides as a valuable human resource?
A blog post from a company that does ethnography: “Spending time with [home care aides] offered our team a new and very valuable lens through which to observe the patient’s wider treatment ecology [because it] revealed an important facet of the infrastructure that underpins much in-home care, far from doctors and nurses.” This is echoed in one of the scenarios we developed for the future of serious illness care project that i’ll be talking about in Denver: one of the most emotionally resonant moments for a family was when a home care aide took out his own bible to pray with a patient. These ethnographers write that typical analyses ‘often overemphasize the classic dyad of patient and primary health care provider’, suggesting that the view of these aides as 'unskilled’ and 'replaceable’ that we should view them as 'valuable, untapped assets…“
Why Ecology Research Should Include Auxiliary Actors for Truly Powerful Results
5. When anger can be a good thing.
For me, one of the most interesting analyses of our political moment has to do with why men can show anger, and why women cannot. I remember from years ago a conversation with Kathy Foley, in which she told me that (and i’m paraphrasing) there is a place for outrage. Rebecca Traister’s new book Good and Mad is eloquent on this–it is an updated view of feminism that has ‘come out of a deep freeze’. Even if not all the radical feminism resonates for you, this is a view from the edges that ought to inform our field. The construction of 'care’ within biomedical culture, and the 'support’ offered by many palliative care teams, owes much to the way women have been socialized to speak–and might explain why palliative care has trouble connecting with people who see the oppression embedded in this socialized way of speaking.
The Ezra Klein Show [podcast]
This newsletter is made possible by The John A. Hartford Foundation. But the views, recommendations, and opinions are mine alone. Special thanks this week to Chris Corrigan!
If you’re coming to Denver this coming week for the C-TAC National Summit (where i’ll be talking about the future of serious illness care), stop by to say hello!
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