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The future of palliative care - Issue #20

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"We all carry within us our places of exile, our crimes, our ravages. Our task is not to unleash them
 

The future of palliative care

September 4 · Issue #20 · 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.

“We all carry within us our places of exile, our crimes, our ravages. Our task is not to unleash them on the world; it is to transform them in ourselves.” [Albert Camus]

1. Two extraordinary people teach us at their funerals.
What the public learned from John McCain and Aretha Franklin about how to orchestrate a funeral was nothing short of remarkable. McCain, in his orchestration of his funeral (the Russian pallbearer who had survived poisoning, the visuals of Trump going to play golf because he wasn’t invited), gave us the values he lived by, and if those gestures weren’t clear enough, his daughter Meghan channeled him in a eulogy that is worth watching in full. Franklin’s public procession, open to anyone who wanted to pay tribute (which went for 4 days without letting up), attracted every leader involved in social change in the African-American community, and the symbolism of her service being in the church where she had sung for Martin Luther King and Rosa Parks was unmistakable. McCain and Franklin make an unlikely couple indeed. But the lesson of living into your values–and what that can mean in your death–is indelible. Thank you, Senator and Queen.
Aretha Franklin (You Make Me Feel Like) A Natural Woman - Kennedy Center Honors 2015 - YouTube
2. Yet our work is so *not* over -- ugh.
Our colleague Marian Grant, lost her mother in the spring. But despite her insider knowledge, connections, and effort, things did not go well. Her mother, upon arrival to the nursing unit in the retirement community where she already lived, was met with zero coordination between units, carers who didn’t have the training they needed, and an absence of medical detail that is seriously terrifying. The staff promised Grant that they would check on her mother ‘every hour’ during a tough night–but in the morning, none of her meds had been given. The story illustrates where our field is now: the decision making was clear, the patient and family were prepared, and the patient was in good shape up to a planned transfer–and yet it all fell apart at the end. As she writes in the op-ed 'the system isn’t a system’. We often tell ourselves that this kind of thing wouldn’t happen at our place, or that this experience is an outlier. But we need to step above our own defensiveness and use these story to do something bigger. Thank you Marian for this profound lesson.
Dying badly despite all my efforts - Baltimore Sun
3. A researcher finally gets that hospice is a business.
Anna Rahman is a PhD researcher at USC, in Gerontology, and her experience as a family member for a brother dying of liver cancer is as discouraging as Grant’s–but for different reasons. What she describes were clinical decisions she saw as driven by cost above all other considerations. She writes of a family conference that addressed requests for paracentesis and rifaximin that “profoundly altered my view of the hospice. From then on, I saw it as patient centered and family oriented only up to the point that those patients and families did not demand services deemed too expensive.” She writes of being relegated to a ‘largely passive’ role as care 'recipient.’ What this reveals is a bigger theme in the construction of end of life care by people with good intents. Yes the patients and families are vulnerable, but leaving them feeling that their role is passive? What Rahman doesn’t say exactly is that she felt condescended to, but that what she’s too polite to put into words.
Who Knew? Hospice Is a Business. What that Means for All of Us | The Gerontologist
4. Hastened death, frantic daughter version.
Sarah Lyall, whose byline i’ve come to recognize as London correspondent for the NYT, came back to the US in part to care for her dying mother. Her account of being a family member is heartbreaking and infuriating. Her mother doesn’t sound like the autonomy-focused people that Linda Ganzini describes opting for physician-assisted suicide in Oregon. From what i see here Lyall’s mother was more like demoralized and sad, and channeled that into off-the-cuff suggestions that her daughter suffocate her with a pillow. Which her daughter took literally. The infuriating part is Lyall’s account of seeking help: “I go online and start calling end-of-life organizations. The people are endlessly compassionate, but no one will, or can, tell me what dosage to give, or how to give it. I try to talk to one of the hospice workers, but she threatens to report me to the police. “We are not having this conversation,” she says. When I read this, I can feel my head exploding. In an alternative world, i’d hope the nurse would say ‘Stay right there–i’m sending someone to your house now.’ Instead, incompetence (and maybe fear) left behind a family experience of abandonment and failure. Really sad.
The Last Thing Mom Asked - The New York Times
5. If you're old, frail, and develop breast cancer...
The tradeoffs for surgery that has palliative intent are soberly described in a new study of elderly, impaired nursing home patients with newly diagnosed breast cancer. Over a 10 year period ending in 2013, 5969 nursing home residents (average age 82) in Medicare claims data had a lumpectomy or mastectomy. The results are much worse than I would have expected: 1-year mortality rates of 41% after lumpectomy, 30% after mastectomy; functional decline rate for 1 year survivors at 60%. More: patients with the least functional dependency before surgery were most likely to have a 1-year functional decline. Clearly, a recalibration in clinical decision making is needed, along with clear ways to describe these outcomes to families and patients. Disappointingly, neither the paper (below) nor the editorial really lay this out. We need a way to talk about these issues with the public–it’s the next layer, beyond end of life prefs.
Functional Status and Survival After Breast Cancer Surgery in Nursing Home Residents | Breast Cancer | JAMA Surgery | JAMA Network
This newsletter is made possible by the John A Hartford Foundation. But the opinions and exasperated commentary are my views alone. [Late this week because of a technical glitch!]
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