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The future of palliative care - Issue #28

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"You’ve got to surround yourself with people you can be in the struggle with for 50 years." [Vincent
 

The future of palliative care

January 21 · Issue #28 · 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.

“You’ve got to surround yourself with people you can be in the struggle with for 50 years.” [Vincent Harding]

1. What we could learn from Dr. King.
Vincent Harding, a historian of the civil rights movement, looked back at the civil rights movement, and the current talk of ‘failure’ like this: “[Harding] saw it not as some clearly defined and unique moment of history, but rather as another chapter in a series of moments in world history, where the people Europeans sought to colonize and enslave decided to resist — sometimes en masse, sometimes in individual acts of conscience, dignity, and defiance.” Speaking as an elder of the movement, Harding saw not the 'success’ or 'failure’ of the individual act, but rather the cumulative impact of a multi-chapter story that reinvents itself anew in every generation. What care for people with a serious illness means is, of course, very different. But we could learn from civil rights pioneers like Dr. King and Professor Harding about what it takes to make social change happen.
Our Elders Didn’t Fail Us | The On Being Project
2. Marketing is a force we have to take seriously.
Just this month in JAMA: the astonishing amount of money that big pharma spends on marketing drugs. “From 1997 through 2016, spending on medical marketing of drugs, disease awareness campaigns, health services, and laboratory testing increased from $17.7 to $29.9 billion.” Exhibit 1: misleading cancer center advertising: “Truth in Advertising’s 1-year investigation into the direct-to-consumer television and digital marketing materials showed that 90% (43/48) featured positive patient testimonials about treatment outcomes in cancers with a 5-year survival of less than 50% [without mentioning that the featured response was ‘not typical.’]” Exhibit 2: the strong-arm tactics that Purdue Pharma used to market OxyContin, including the courtship of academic medical centers. 'Post-truth’ discourse meets the patient-clinician relationship.
Purdue cemented ties with universities and hospitals to expand opioid sales, documents contend
3. What marketers do now: 'surveillance capitalism.'
My first essential read of 2019: Shoshana Zuboff’s new book, The Age of Surveillance Capitalism. You know those creepy ads that turn up on your browser (if you still use chrome or explorer) after you’ve looked at a product on facebook? This is your human experience translated as behavioral data into a prediction product that is being sold without your knowledge or consent. Your online activity is becoming a means of behavior modification–so that you will buy more stuff. As Zuboff puts it, ‘They predict our futures for the sake of others’ gains, not ours.’ Why this matters to palliative care is that it represents the dark side of predictive analytics and population medicine in health systems that are run for profit. And there is something we should recognize even at the clinician-patient level that our 'creepy’ reaction reveals: when people say they know something about you that you didn’t authorize, it feels intrusive. A caveat for your next prognosis discussion.
How Tech Companies Manipulate Our Personal Data - The New York Times
4. Is resistance about learning to make better decisions?
In The New Yorker, Steven Johnson’s new book Farsighted gets a practical review that suggests something we can each do about the behemoth that Zuboff lays out: we can pause to make better decisions. ‘Choices are constrained by earlier choices; facts go undiscovered, ignored, or misunderstood; decision-makers are compromised by groupthink and by their own fallible minds. The most complex decisions harbor “conflicting objectives” and “undiscovered options,” requiring us to predict future possibilities that can be grasped, confusingly, only at “varied levels of uncertainty.”’ Sound like the last family conference you were in? Well, yes: “Professional deciders, Johnson reports, use decision processes to navigate this complexity”–decisions in stages (divergence, then convergence), and scenarios that describe possible futures. Is the future of serious illness about structuring decisions better?
The Art of Decision-Making | The New Yorker
5. A troubling update from the Netherlands.
“The process of bringing in euthanasia legislation began with a desire to deal with the most heartbreaking cases – really terrible forms of death,” notes Theo Boer, a professor of ethics who served on a Dutch regional board that reviewed cases of euthanasia. “But there have been important changes in the way the law is applied. We have put in motion something that we have now discovered has more consequences than we ever imagined.” I heard Professor Boer last year, in Reykjavik, and where he is circumspect, this article goes into much more detail. And what emerges is a picture of the complicatedness of suffering. Don’t miss this: as the practice of physician-assisted dying becomes more widespread, these are questions that we in the US will be wrestling with–the Netherlands is 20 years ahead.
Death on demand: has euthanasia gone too far? | News | The Guardian
Endnotes
This newsletter is made possible by The John A. Hartford Foundation but the opinions, views, and recommendations are mine alone.
If you’d like to read a bit more by me about my recent experience with psilocybin and what i learned about dying, my account was just published here.
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