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The future of palliative care - Issue #22


The future of palliative care

September 30 · Issue #22 · 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.

“Empathy is radical in this kind of environment.” Jane Fonda

1. Is the term "comfort care" creating a problem?
We clinicians know what ‘comfort care’ means: most often it’s an order set intended for a patient who is immanently dying. But as a family member points out a commentary in JAMA Internal Medicine, “Don’t you think he [her father, who is dying] looks comfortable?…So why are they talking about ‘making him comfortable’?” The commentary makes much of the problem of ‘comfort care’ implying that other care is discomfort care [my paraphrase]. What interests me, however, is how this commentary illustrates the way medical shorthand leaks into the interchanges clinicians have with patients. We haven’t figured out how to create spaces for professional discourse (which requires technicality and precision) that are separate from patient-family-clinician discourse (which requires adaptation to maximize understanding). [If you need access, click here.]
Ambiguity in End-of-Life Care Terminology—What Do We Mean by “Comfort Care?”
2. ICU admits for dying lung cancer pts are going up.
A disturbing analysis of an all-payer database including <412,000 admissions shows that ICU use for patients with lung cancer during their terminal hospitalization is increasing. A lot. “From 1998 to 2014, the proportion of patients admitted to the intensive care unit (ICU) during the terminal hospitalization increased from 13.3% to 27.9% (P < .001).” The frustrating thing about this study, however, is that it doesn’t explain why. During this period, palliative care consults for these patients during this period increased from from 8.7% to 53.0% (P < .01)–dramatic–and correlated decreased aggressiveness in care, but this did NOT offset the increase in ICU use. What’s going on? Is more PC skill penetration required (ie the critical care docs need it and/or need more PC specialists for difficult cases)? Or ICU use a ‘tip of the iceberg’ indicator for the absence of PC skill upstream?
Trends in End of Life Care for Patients with Stage IV Lung Cancer Journal of Oncology Practice
3. The next phase of change needs to go big.
Writing in the New England Journal, Pham and Ginsburg (from Anthem and the Brookings Institution, an interesting combo), suggest that, as the previous study suggests, “to truly redesign a system, one has to take a holistic approach and move multiple levers in concert, rather than fiddling with individual factors serially and hoping for a coordinated effect.” The big question for the US is, in the absence of a governmental body that could coordinate a national strategy, where could that kind of redesign discussion happen?
Payment and Delivery-System Reform — The Next Phase | NEJM
4. A regional example of big redesign: California
The entire Sept 2018 issue of Health Affairs describes how the state of California has taken on access, diversity, cost, and quality–with interesting results. Even the descriptive data is worth a look:
Excerpt from a graph describing the incidence of diabetes in various regions.
Excerpt from a graph describing the incidence of diabetes in various regions.
What these reports say, in short, is that California is addressing large-scale health care issues regionally–by assembling informal groups of payers, government, providers. And while foundations have provided critical support for these projects, the challenges they have taken on seems quite generalizable to all the issues we face at the national level. One of the reports headlines this as ‘changing the narrative’. My only quibble? They didn’t write a narrative with impact.
Managing Diversity to Eliminate Disparities
5. What would a better narrative look like?
The Stanford Social Innovation Review has laid out a nice set of rules for crafting better stories: 1. Tell stories about *individuals*; 2. Give your audience two plus two [eg set your audience up to put together the insight you want them to leave with]; 3. Be strategic with your empty spaces; 4. Paint a picture in the mind of your audience. What this calls for is a new kind of engagement with the different stakeholders we are trying to influence. For the stories themselves? Remember, there are actually 6 basic plots: Kurt Vonnegut lectured about them for years–but now an AI group form Vermont has empirically defined them. We could be more persuasive.
How to Tell Stories About Complex Issues
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