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The future of palliative care - Issue #26


The future of palliative care

November 12 · Issue #26 · 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.

“Maybe I’m trying to whitewash history.” Pete Souza

Pete Souza was Obama's White House photographer.
Pete Souza was Obama's White House photographer.
1. Why we need better visual messaging.
Seattle Arts & Lectures presented Pete Souza last night, and his new book Shade: A Tale of Two Presidents. It made me a little teary, honestly. And I wasn’t the only one. There were 2500 people packing symphony hall for a *book* event. What sticks with me is Obama’s realness–in this time of packaged, focus-grouped, pundit-driven commentary–he managed something quite remarkable. And visually, the point for palliative care is that how much we need to learn about making images. The hands, rainbows, doves–they’re over.
A little hard to look at.
A little hard to look at.
2. What doctors think about leadership. Yikes.
In 2013, the UK National Health Service did a study to figure out why their physicians don’t want to take leadership positions. What they found: an “engagement gap” between medical leaders and their colleagues who chose to focus on service provision, education, and research. Worse, there was a “perception that doctors who took on leadership roles were going ‘over to the dark side.’ I’ve featured articles calling for leadership development previously, notably this piece in NEJM Catalyst, and this interview with Edgar Schein, who when asked whether the end of the heroic leader is particularly American says: "The American problem is not so much the worship of the individual leader, but the negative attitudes toward meetings and teams and group work.” What this represents, which i have been trained in myself, is the culture of physicians. It will require that we not only retrain ourselves but set up new conditions for the next generation to succeed. The question that Schein keeps raising is, what’s the culture?
Lessons in Health Care Leadership: Edgar Schein - Part 2 - NEJM Catalyst
3. Health care isn't just a 'product'. (Finally.)
Paul Batalden, in a fascinating essay in BMJ, deconstructs the old thinking that health care is ‘product dominant’ and that patient-physician relationships are ‘supplier-customer partnerships.’ It may be that in his conception of healthcare as a ‘co-produced’ product that we are getting to a better, less industrial-assembly-line vision of health care quality. It’s about time. Totally
Getting more health from healthcare: quality improvement is coproduction
4. What we could learn from Silicon Valley
On 05/02/18, they sent a single recruitment email.
On 05/02/18, they sent a single recruitment email.
The Apple Watch study enrolled <400,000 participants to examine rates of atrial fibrillation. The next largest study of arrhythmias was done in Sweden, the Strokestop study, that enrolled 25,000 participants. To be fair, Strokestop collected a lot more data about each participant. But the Apple Study has probably enrolled 12% of *ALL* the Americans affected by atrial fibrillation–of whom 70,000 don’t even know they’ve got the arrhythmia. Is there a parallel that we could use to address the people who don’t know their serious illness is putting them at risk–for a very complicated medical course?
A large-scale, app-based study
5. The future of serious illness care.
My C-TAC talk, finally.
I’ve been promising a synopsis of the talk I gave at the C-TAC Summit a couple of weeks ago. Here it is, in an abridged version that will take just 5 minutes of your time. What impressed me at C-TAC is how many groups are ready to go with this–there is a great deal of practical and political motivation that goes far deeper than just cost savings. Our assignment is to figure out how to tap into it, in a way that enables us to bring everything we’ve learned to the table. The website that is behind this, with much more detail, is But take a look at the video first. I’d love to know what you think.
6. Suffering, punishment, and a way through it.
Elaine Pagels is a historian at Princeton, well known for her work on the Gnostic Gospels. Her young son died of pulmonary hypertension, and like any good academic, she applied her scholarship to her own experience. The result is an interesting narrative, entitled Why Religion? A Personal Story–and the reason I include it here is that is it represents an important variant in the genre of pathography. “When Mark was diagnosed, I sometimes felt as if I’d caused his illness. Although I wasn’t a traditional believer, and didn’t take religious stories literally, somehow their premises had shaped my subconscious. Now I had to divest myself of the illusion that we deserved what had happened.” Her account of finding her way through is a kind of beacon.
Finding the Heart | The New Yorker
This newsletter is made possible by the John A. Hartford Foundation, but the opinions, recommendations, and views are mine alone. Special thanks this week to Jon Broyles, who featured CareLab at the C-TAC Summit. And a very special shout out to Amy Berman, who received the 2018 CAPC Innovation Award–bravo!
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