The future of palliative care - Issue #30

The future of palliative care




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The future of palliative care

April 7 · Issue #30 · 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.

From a folded A4 sheet on which Jacinda Ardern scribbled notes before her first address after the Christchurch shooting: “They are us.” Reported in The Guardian.

Dutch scientist Jan van Hooff visits chimpanzee "Mama", 59 yrs old, before she dies.
1. Could we reinvigorate our understanding of emotion?
Emotion, for many clinicians working with dying patients, has been a third rail. We wag our fingers at the irrationality of decisions people make when they are near death, and often, we assume that emotions are the ‘problem.’ But in his new book–the culmination of a life’s work–scientist Frans van de Waal shows us quite the opposite. Emotions “may be slippery,” he writes, “but they are also by far the most salient aspect of our lives. They give meaning to everything.” Emotions aren’t liabilities, in his view; they are adaptive. What this book suggests is that, as we continue to fret about why our rational decision making doesn’t work (as in a recent, careful, study of ICU surrogates), we need a new theory about decision making that puts emotion at the center.
Mama's Last Hug: Animal Emotions and What They Tell Us about Ourselves: Frans de Waal
2. Is our usual response to loss why patriarchy persists?
Two months ago, in a leadership workgroup comprised of emerging palliative care leaders, the topic that made everyone stop in their tracks was *not* payment models, outcome measures, or Medicare-for-all. For these leaders, it was gender. I took away a big lesson from the ensuing, charged, conversation. They wouldn’t have put it this way, out of politeness, but the lesson is pretty simple: medicine is a patriarchy. And these women are still perplexed about it. We can give them leadership ‘skills’ to be sure, but my hunch is that the problem runs much deeper. That’s where a new book by Carol Gilligan, who put moral development and gender on the map, weighs in with a provocative hypothesis. The way our culture teaches men and women to deal with losses enforces, in an invisible way, a hierarchy of power in which men distance themselves from emotion to maintain the rationality, and women compensate by not saying what they really think and performing what psychologist John Bowlby called compulsive caregiving. At its core, this is a hypothesis about attachment. Dense but thought provoking. Palliative care is gendered. And that might not be what we need for social change.
Carefully Smash the Patriarchy - The New York Times
3. Is securely attached, embodied leadership possible?
Ardern on donning a hijab: "I gave it really little thought, it was so obvious to me..."
Ardern on donning a hijab: "I gave it really little thought, it was so obvious to me..."
Strikingly, current headlines draw a striking contrast between the leadership of two women. Re Teresa May, from the New York Times: ‘Every question I asked, from how she [May] was doing to what challenges she faced at the home office, was batted away with monosyllables. I was baffled. She clearly saw no point in creating a relationship, or explaining any of her thinking to me.“ Jacinda Ardern, from The Guardian: "Very little of what I’ve done has been deliberate. It’s been intuitive.” According to The New Yorker, Ardern is “inarguably modeling a new type of gendered leadership” that is person-first, politician-second. What this comparison suggests to me is that as palliative care goes from volunteer work to system linchpin is that we need to consciously figure out how to lead in ways that enable us to embody and enact the values we’ve come into medicine to preserve & amplify.
4. Is attachment theory the basis for a new ethics?
One of the handicaps that has long faced palliative care is the absence of a workable ethical theory. The ethics of care that Carol Gilligan pioneered has not fit in well with the kind of scientific measurement that she suggests is part of the patriarchy. Enter now, a new theory of ethics, based on attachment theory, something well supported by empirical studies. In hius new book, Aner Govrin, describes a whole new kind of ethics that uses the mother-child bond as a kind of template for every moral decision that follows: “through early interactions with the caregiver,” he writes, “the child acquires an internal representation of a system of rules that determine how right/wrong judgments are to be construed, used, and understood. By breaking moral situations down into their defining features, the attachment model of moral judgment outlines a framework for a universal moral faculty based on a universal, innate, deep structure that appears uniformly in the structure of almost all moral judgments regardless of their content.” I predict that we will be hearing much more…
Ethics and Attachment. Aner Govrin
5. A stunning visual about living with serious illness.
Finally: Jeremy Hawkes has a neurodegenerative movement disorder. “I live with symptoms of early onset Parkinsons….after i was diagnosed, I went through an intense period of self-loathing.” He stopped his meds to make this video, “a performance of my disability…a process of surrendering…” It gave me chills.
Freeing the ghost within: Cartesian mind-body dualism in art powered by disability | Aeon Videos
I hope you’re having a wonderful Sunday. This newsletter is made possible by The John A. Hartford Foundation, but the opinions, recommendations, and views are mine alone.
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