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What Doctors Should Be Asking Their Patients About How They Want To Die

CREDIT: SHUTTERSTOCK
CREDIT: SHUTTERSTOCK

Are doctors ready to talk to their patients about death?

At the beginning of this year, Medicare announced it will cover at least 30 minutes of “advance care planning” — a conversation between a doctor and a patient about what medical decisions they’d like to make when faced with death. The policy change was very popular among medical professionals, who hoped it would spur more meaningful — and vital — conversations about end-of-life care.

It’s a simple question: What do you value most at the end of your life?

But nearly four months later, a recent study found only 14 percent of doctors have actually billed the federal health program for this service, leading many experts to question if physicians are truly prepared for the critical task.

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“This shouldn’t be an ‘end-of-your-life’ conversation,” said Harriet Warshaw, director of The Conversation Project, an organization geared toward normalizing end-of-life discussions. “We need to normalize it. We need to build comfort around having these conversations around the dinner table, with friends, at an annual check-up — our hope is that these become ubiquitous with normal primary care.”

Part of the problem may stem from the fact that primary care doctors lack formal education in this area. While training on end-of-life counseling is commonplace for palliative care doctors, the medical professionals who don’t work with patients struggling with a serious, fatal disease are less familiar with this sensitive conversation.

A recent poll by the Kaiser Family Foundation found that only 29 percent of U.S. doctors have received any kind training on how to talk with patients and their families about end-of-life care. And just 29 percent said their practice or health care facility had a formal system for assessing a patients’ end-of-life desires.

“This is a job mostly for primary care and other specialist physicians,” wrote James A. Tulsky, the co-director of Harvard Medical School’s Center for Palliative Care, in an email to ThinkProgress. “In contrast to palliative medicine specialists, other physicians have variable degrees of training in communicating about advance care planning.”

Past research has found that communication between doctors and elderly patients can be fraught with inconsistencies and misunderstanding. At times, doctors wait until the patient brings up their concerns on their own. But fear of death and social stigma around discussing death have left patients ignoring these choices until it’s too late.

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Tulsky said that more training in this area would be welcome. Susan Enguidanos, a professor of Gerontology at University of California, Davis, agreed.

“What we hope is that more clinicians — non-palliative MDs, specialists, nurses, social workers — will start having these conversations and having them early — before they need palliative care,” Enguidanos wrote in an email.

So, what does a respectful conversation look like between an aging patient and their doctor?

According to Warshaw, it shouldn’t be saved for the last minute — or for a sterile clinic bed.

The Conversation Project is one of the growing number of programs that’s created an online toolkit for family members and doctors wanting to have a successful and respectful end-of-life discussion with someone. The organizations’ online starter kit offers sample questions to “break the ice” and suggests comfortable places to have such a conversation. ACP Decisions, a similar organization, offers video tutorials for unprepared doctors on how to explain a patient’s options in a clear, jargon-free manner.

Instead of basing patient needs on what modern medical technology can provide for them, Warshaw said the conversation should put patients’ values first. And it doesn’t need to be complicated.

“It’s a simple question: What do you value most at the end of your life?”

Though talking about death may not come naturally to doctors, Warsaw points out there’s a lot at stake. Most Americans haven’t planned ahead for their deaths — and if they aren’t aware of their end-of-life options, they may end up in situations that are difficult for their family members or that actually end up prolonging their physical pain.

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“Doctors are trained to save lives, not how to accompany patients on the journey toward death,” Warshaw said. “When a patient is dying, a doctor is on autopilot to keep them alive. But what if that’s not what the patient really wants?”