The woman on the phone was worried. She had signed an advance directive specifying what kind of end-of-life care she would receive in the event she could no longer communicate her wishes—and now she wanted to revoke it.
Why? Because someone had told her that it didn’t matter what the directive said—just having a directive meant that she would not be given even the most basic care or pain relief, said Kathy Brandt, the woman who took that call. Brandt, a vice president of the National Hospice and Palliative Care Organization, said the woman had come to believe that she had signed away her right to medical treatment.
Advance directives do not signal the patient wants to die in pain, without any care at all. They are legal documents that specify the kind of treatment a patient would like if he is unable to speak for himself. But rational planning for debilitating illness and eventual death is an idea that seems to attract whole clusters of frightening misconceptions.
Brandt talked to that caller a few months ago, before an obscure section of House bill HR 3200—the American Affordable Health Choices Act—seemed to take on a life of its own amid charges that the government was creating “death panels” to euthanize the elderly. Angry protesters flocked to town hall meetings where they vented their rage at members of Congress.
What the proposal would actually do is allow physicians to bill Medicare for discussing with their patients what kind of end-of-life care they would want in the event there was little chance of recovery and they were unable to decide for themselves. Would they merely want pain control or expect the doctors to try every available treatment?
Such discussions would not be mandatory, but could help patients to articulate their wishes in a living will and designate a health proxy—usually a spouse or adult child—to carry out their wishes.
“You can boil it down to two words: ‘Who decides?’ ” says Bill Thomas, M.D. of Ithaca, N.Y., a nationally known geriatrician who developed the concept of “green house” nursing homes—facilities that are less institutional and help patients live richer lives in smaller settings.
“The entire point of doing this planning is thoughtful communication with a physician and creating some documents that can guide your care,” he says. “It’s so you decide.”
Palliative care, in which doctors control pain symptoms without trying to treat a terminal illness, is different from assisted suicide or active euthanasia, Thomas stresses. Palliative care is what’s done “when someone’s in an end-of-life situation,” he says. “When there’s no cure available, you definitely want palliative care.”
Most patients will say they don’t want heroic measures to be taken, but “some people will tell you, ‘Doc, I want everything done. Don’t spare anything. If there’s something that can be done to prolong my life, do it,’” Thomas says. “To me, as a physician, it doesn’t matter to me which position a patient takes. What matters is that I follow their wishes.”
That conversation is essential, says Brandt, whose organization makes advance planning forms available on its Caring Connections website. Medicare pays doctors for procedures and treatments, but a physician who spends an hour explaining the ins and outs of medical directives cannot currently bill for that time and effort. What the Advance Care Planning Consultation proposal would do, she says, is “at least not make it a money-loser for doctors to spend that time with patients.”
But that isn’t how the proposal, known as Section 1233, has been portrayed. Critics charge that it gives doctors a financial incentive to pressure their patients to refuse life-prolonging procedures in favor of palliative care. And that, they declare, is a slippery slope leading to euthanasia—a charge that outrages many doctors and health care workers.
Howard Tuch, M.D., a palliative care specialist and director of health policy at the nonprofit Suncoast Hospice in Pinellas County, Fla., calls the charge “absurd.”