Remember so-called death panels?
When Congress debated the Affordable Care Act in 2009, the legislation included a provision that would have allowed Medicare to reimburse doctors when they meet with patients to talk about end-of-life care.
But then Sarah Palin loudly argued that such payments would lead to care being withheld from the elderly and disabled.
Her assertions greatly distressed Dr. Pamelyn Close, a palliative care specialist in Los Angeles.
“It did terrible damage to the concept of having this conversation,” she says.
Amid the ensuing political uproar, Congress deleted the provision. And that, says Close, further discouraged doctors from initiating these talks.
“We just are not having these conversations often enough and soon enough,” Close says. “Loved ones who are trying to always do the right thing end up being weighed with tremendous guilt and tremendous uncertainty without having had that conversation.”
When done right, Close says, these nondirective counseling sessions often delve into end-of-life treatment options and legal documents, such as advance directives and living wills. The issues to be covered are complex and typically require a series of discussions.
Right now, Medicare pays for this sort of advanced care planning only if it happens during the first visit for new Medicare enrollees. But now the government is proposing that Medicare reimburse doctors for including these conversations in their practice, whenever they occur.
Already, some private insurance companies are starting to do just that.
Meanwhile, the Alliance Defending Freedom, a conservative Christian organization, has formally opposed Medicare’s proposal.
“By paying doctors for these conversations, what we’re doing is opening the door to directive counseling and coercion,” says Catherine Glenn Foster, an attorney with the group. Foster says her organization supports end-of-life counseling and planning, but not in a doctor’s office.
“A doctor is not really the person you’d want to be having it with — particularly not a general practitioner who would not be able to advise on the nuances of end-of-life care in the first place,” she says.
But patients do seem to want these talks. A 2012 study by the California HealthCare Foundation found that 80 percent of Californians want to have an end-of-life conversation with their physician, but fewer than one in 10 has done so.
Many doctors who do initiate the discussions often do so on their own dime. More often, they don’t have them at all, says Dr. Daniel Stone, an internist with Cedars-Sinai Medical Center in Los Angeles.
“When a doctor has patients scheduled every 15 minutes, it’s difficult to have a face-to-face conversation about values and goals related to the end of life, which is one of the most sensitive topics that you can possibly discuss with a patient,” Stone says.
Dr. Susan Tolle, an internist with the Center for Ethics in Health Care, at the Oregon Health and Science University, says the informality with which such conversations are held now means that family members may not be included. She’s all for the proposed change.
“What it does is it gives this really important conversation dignity and standing,” she says.
In Oregon, doctors have been squeezing end-of-life discussions into regular medical appointments for decades, under less-than-ideal circumstances. Over the past five years a quarter of a million Oregonians registered their wishes with a state registry. They use what’s known as a POLST form, which stands for Physician Orders for Life Sustaining Treatment. A version been adopted by some other states, including New York and West Virginia.
Jo Ann Farwell, a retired Portland social worker, has completed one such form in Oregon.
“I had surgery and had a prognosis of four to six months to live,” she says, after she was diagnosed with a brain tumor.
Farwell talked to her doctor, and then filled out a POLST form to make sure her last hours are as comfortable as possible.
“I wouldn’t want to be on tube-feeding,” she says. “I wouldn’t want to be resuscitated, or have mechanical ventilation, because that would probably prolong my dying, rather than giving me quality of life.”
In the 1990s, health care workers all over Oregon recognized that the wishes of patients weren’t being consistently followed. So the health care establishment worked with the state and with ethicists to prioritize end-of-life talks; the result was the POLST form.
Congressman Earl Blumenauer, a Democrat from Portland, has introduced the Medicare reimbursement legislation every session since 2009. Until now, he says, the federal government hasn’t placed any value on helping people prepare for death, and he finds that ironic.
“The Medicare program will pay for literally thousands of medical procedures, many of them very expensive and complex, even if the person is at the latest stage of life and it may not do any good,” he says.
From a purely financial point of view, the change could save money. But Blumenauer says that’s not what’s driving him.
“I don’t care what people decide,” he says. “If they want to die in an ICU with tubes up their nose, that’s their choice. What we want is that people know what their choices are.”
Farwell well remembers when her sister was dying from cancer.
“She never talked about death or dying,” she says, “never talked about what she wanted at the end. It was very, very difficult for me to try to plan and give her care.”
Farwell wants her sons to be in a better position when it comes to carrying out her wishes.
The federal government is now accepting public comment on the Medicare reimbursement proposal. It’s expected to make a decision in November.
This story is part of NPR’s reporting partnership with KPCC, Oregon Public Broadcasting and Kaiser Health News.
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