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Washington might actually be ready for a sane conversation about death

(Stephen J. Boitano / LightRocket via Getty News Images)

On Wednesday, I published a story with this headline:

I was wrong. Not about Medicare paying doctors to talk about death. That part is definitely in the works! And you can read more about it here. But the second part — political controversy — so far hasn’t surfaced.

My prediction was based on experience. In 2009 and 2010, the last two times the Obama administration attempted to move forward on end-of-life care legislation, the move became a political mess almost instantly.

I hope I stay wrong. If there’s never a backlash, that’s great news. The current quiet suggests that Washington might actually be ready to start a very frank and very necessary conversation about how Americans plan for death.

Earlier attempts to pay for end-of-life planning backfired

The White House nixed a provision in Obamacare that would pay doctors for explaining “the continuum of end-of-life services” after it became the center of an ugly skirmish over whether Obama wanted to “pull the plug on Grandma.“

The Obama administration then attempted to quietly set up such a payment system through regulations, like the ones proposed today. But after a front-page New York Times story drew attention to the decision, Medicare backed off and once again dropped the issue.

I thought that this time would play out similarly: that my inbox would fill up with a slew of press releases decrying so-called “death panels” and accusing the Obama administration of “rationing.”

I did get a bunch of press releases — but they were universally in favor of the White House’s decision. Other longtime health reporters noticed the shift, too.

From “death panels” to discourse: What changed?

The politics of the situation, mostly. Back in 2009 and 2010 there was a political imperative for Republicans to make Obamacare seem terrible: namely, to stop the law from passing — and, when the law did pass, to make the case for repeal.

Five years later, that incentive doesn’t really exist. The law covers millions of Americans, making it difficult politically for opponents to try to take it away. The repeal ship has sailed, after the law survived numerous repeal votes — not to mention three Supreme Court challenges.

Plus, when politics aren’t in play, pretty much everyone agrees paying doctors to discuss end-of-life care is a good idea. Medicare says it got 200 comments when it proposed the idea earlier this year — and 199 of them were in favor. End-of-life planning has always been a political controversy, never a policy one.

The key issue: ensuring autonomy for patients at the end of life

The supposed fear at the heart of the death panel debate was a fear about the loss of autonomy: that a group of anonymous bureaucrats would make the decisions that ought to be reserved for the terminally ill.

Obamacare opponents worried that doctors would use these conversations to recommend less expensive care that costs the government less — and shortchanges the patient.

Patients, meanwhile, face a different and very significant loss of autonomy when they don’t have these conversations. They don’t get to decide what type of death they want, what goals will be important to them, and what type of life-sustaining treatment they’d prefer.

“It’s one of the most uncomfortable things,” says Donn Dexter, a neurologist in Eau Claire, Wisconsin, who works on end-of-life planning. “The family can be so at odds, and the patient has not made clear what they want. I’ve seen families just torn apart by this, and their loved ones tortured with prolonged, futile treatment at the end of life.”

Unarticulated end-of-life decisions get outsourced to family members and doctors, who make their best guess at what a loved one would have wanted. Without advance care planning, patients end up living a version of the scenario that the death panel rhetoric made so fearsome: giving over decisions about their last moments of life to another party.

The aim of these discussions, then, is to make sure that end-of-life care wishes do get articulated — and that doctors have a financial incentive to take the time to make that happen.

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