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Talking to your doctor about how you want to die

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(Bloomberg) — The government will begin paying doctors to have conversations about end-of-life care next year under a Medicare rule that was finalized last week. The goal is to help patients decide what medical measures they want—or want to avoid—if they face grievous illness or injury. Doctors and patient groups have long sought this change, but it’s been nixed in the past with political cries of government-run “death panels.”

Starting next year, physicians will be reimbursed by Medicare for spending up to an hour on advanced-care planning visits. The consultations are voluntary. But if patients choose to do this, what will these conversations be like?

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There’s no script. “Clinicians are going to need training because unfortunately, they don’t get this in medical school,” said Harriet Warshaw, executive director of the Conversation Project, a nonprofit initiative to encourage discussion about end-of-life wishes. While every doctor knows how to ask about allergies or family medical history, the process of talking about patients’ wishes for their final days is less familiar and less comfortable.

“The idea is to take the time to really try to understand what’s important to the patient, what matters to them,” said Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. “What is the patient’s experience of health care? What have they seen other people go through, and how did they feel about that?”

Legal documents such as advance directives or living wills allow people to declare their preferences around specific treatments in different circumstances. These documents can articulate whether patients want to be resuscitated, put on a ventilator, or given a feeding tube to keep them alive. A doctor’s consultation about end-of-life care planning can cover these questions.

But particularly for people in good health, discussion should begin from a broader discussion about patients’ values, said Warshaw. “Do you want to be surrounded by your family? Do you want to die at home? Do you want to die at the hospital? Do you want the most sophisticated piece of technology?” she asked. Letting your doctor know how you feel about these questions can help them understand your intent in a way that legal documents may not. “Technology will change, and there’ll never be enough checkboxes, and there are just a myriad of decisions,” Warshaw said.

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Patients should also tell doctors who they want to be making decisions in the event they are unable to. They can designate health care proxies, and doctors should know who these people are. The person trusted with that responsibility should know, too. “You would be surprised how many people are named a health care proxy and don’t even know it,” said Warshaw.

See also: National Health Care Decisions Day

The visit may also cover how caregivers will know patients’ wishes when they are no longer able to express them. Some health care providers are starting to include patients’ advance-care plans in electronic medical records. At a minimum, the visit should be recorded in a doctor’s chart. But a lot of health systems are still trying to figure out how to record, store, and retrieve such information so caregivers have it when it’s needed. “This is not going to happen overnight,” Warshaw said.

Still, the consultations that doctors and patients will begin having next year should help patients’ intentions persist through their treatment. “The whole purpose of this is so patients stay in the driver’s seat, and they always get the care that they really want,” Rotella said, “even if they’re now too sick to speak for themselves.”

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