DAVID GREENE, HOST:
Let's hear about a difficult decision many of you have probably had to make or will have to at some point - how best to care for a loved one at the end of his or her life. One idea to make this easier is to plan ahead, and the federal government is considering changing Medicare rules to encourage doctors to begin these kinds of conversations before it gets too late. To hear more about this, we're going to two parts of the country - first, Southern California. Here's Stephanie O'Neill from member station KPCC.
STEPHANIE O'NEILL, BYLINE: Remember so-called death panels? When Congress was considering the Affordable Care Act back in 2009, one version included a provision that allowed Medicare to pay doctors for end-of-life conversations with patients. But then Sarah Palin claimed, incorrectly, that this would lead to care being withheld from the elderly and disabled. These claims distress Dr. Pamelyn Close, a palliative care specialist in Los Angeles.
PAMELYN CLOSE: It did terrible damage to the concept of having this conversation.
O'NEILL: Amid the ensuing political uproar, Congress deleted the provision. And that's as Close further discouraged doctors from having these talks.
CLOSE: We just are not having these conversations often enough and soon enough. And the loved ones who are trying to do always the right thing ends up being weighed with tremendous guilt and tremendous uncertainty without having had that conversation.
O'NEILL: That conversation often delves into end-of-life treatment options and legal documents such as advanced directives and living wills. It's complex stuff that typically requires a series of discussions. Right now, Medicare only pays for advanced care planning if it happens during the one-time "Welcome To Medicare" visit for new enrollees. Some private insurance companies are starting to reimburse doctors for the service. But many physicians who have these talks often do so on their own dime, or more often, not at all says Dr. Daniel Stone. He's with Cedars-Sinai Medical Center in Los Angeles.
DANIEL STONE: When a doctor has patients scheduled every 15 minutes, it's difficult to have a face-to-face discussion about values and goals related to the end of life, which is one of the most sensitive topics that you can possibly discuss with the patient.
O'NEILL: A 2011 study by the California HealthCare Foundation found that 80 percent of Californians want to have an end-of-life conversation with their doctors, but that fewer than 1 in 10 have done so. The Alliance Defending Freedom is a conservative Christian organization that formally opposes the proposed rule. Catherine Glenn Foster is a lawyer with the group.
CATHERINE GLENN FOSTER: By paying doctors for these conversations, what we're doing is opening the door to directive counseling and coercion.
O'NEILL: Foster says her organization supports end-of-life counseling and planning, but not in a doctor's office.
FOSTER: The doctor is not really the person that you would want to be having it with, and particularly not a general practitioner who wouldn't be able to advise on the nuances of end-of-life care in the first place.
O'NEILL: But those who support the proposal say health providers are key partners in such conversations, and they say that makes a doctor's office an ideal place to start talks about end-of-life care. For NPR News, I'm Stephanie O'Neill in Los Angeles.
KRISTIAN FODEN-VENCIL, BYLINE: I'm Kristian Foden-Vencil in Portland. Here in Oregon, doctors have been squeezing in end-of-life discussions during regular medical appointments for decades. Over the last five years, a quarter of a million Oregonians registered their wishes with the state registry. They use what's known as a POLST form, or Physician Orders For Life-Sustaining Treatment. And a version's been adopted by states like New York and West Virginia. Retired Portland social worker Jo Ann Farwell has one.
JO ANN FARWELL: I had surgery and had a prognosis of four to six months to live.
FODEN-VENCIL: She had a brain tumor, and she filled in a POLST form. The form dates back to the 1990s, when health care workers all over the state recognized that the wishes of patients weren't being consistently followed. The health care establishment worked with the state and ethicists to prioritize end-of-life talks, and they created the POLST form. Farwell talked to her doctor and filled one out to make sure her last hours are as comfortable as possible.
FARWELL: I wouldn't want to be on tube-feeding. I wouldn't want to be resuscitated or to have mechanical ventilation because, the way I see it, that would probably prolong my dying rather than give me quality of life.
FODEN-VENCIL: Medicare doesn't allow doctors to bill for these kinds of conversations, but patients want them. Dr. Susan Tolle, with the Center for Ethics in Health Care, says squeezing them into regular appointments isn't the most effective way to have such a delicate discussion. It also makes it hard for family members to be there. So she's all for the proposed change.
SUSAN TOLLE: What it does is it gives this really important conversation dignity and standing.
FODEN-VENCIL: Portland Democrat Earl Blumenauer has introduced this legislation every session since 2009. He says until now, the Feds don't seem to have placed any value on helping people prepare for death.
EARL BLUMENAUER: 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.
FODEN-VENCIL: From a purely financial point of view, the change could save money. But Blumenauer says that's not what's driving him.
BLUMENAUER: I don't care what people decide. 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.
FODEN-VENCIL: Retired social worker Jo Ann Farwell remembers her sister dying from cancer and says she didn't give any indication how she wanted to pass away.
FARWELL: She never talked about death or dying, never talked about what she wanted at the end. And so that was very, very difficult for me to try to plan and give her care.
FODEN-VENCIL: Farwell wants her sons to be in a better position when it comes to her wishes. The federal government's now accepting public comment on this idea. It's expected to make a decision in November. For NPR News, I'm Kristian Foden-Vencil in Portland.
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