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.”
“We estimate it would be a payment of $75 to $80 every five years,” he says. That’s a pittance, Tuch says, compared with the much greater monetary incentive doctors have to perform surgery or provide services like chemotherapy, dialysis and artificial nutrition.
Amid growing signs that Section 1233 could ultimately be dropped from the House Democrats’ health care bill, health experts say the fear-mongering unfairly characterizes an important discussion. “The damage of this hype is that people will be frightened to engage in this conversation at all,” Tuch says.
Study finds benefits
Several studies in recent years have found that when doctors have end-of-life discussions with patients and families, patients have less anxiety. Published last October in theJournal of the American Medical Association, one study found that when terminally ill patients had end-of-life counseling, it enhanced the quality of their final days.
“Less aggressive care and earlier hospice referrals were associated with better patient quality of life near death,” wrote the authors. Moreover, the researchers found family members and caregivers who did not participate in the discussions “experienced worse quality of life, more regret, and were at higher risk of developing a major depressive disorder.”
Larry Schreiber, M.D., who runs a family practice in Taos, N.M., doesn’t wait until patients are dying. He initiates conversations with patients at their annual physicals once they turn 50. “I’m 62,” he says. “I tell them I have a living will and I’m healthy. I just want to have my ducks in a row, and you should, too.”
He also provides them with a do-it-yourself living-will template called Five Wishes to help them spell out their desires and designate a health proxy with power of attorney. As for the physician compensation contemplated by Section 1233, “it’s long overdue,” Schreiber says. “All physicians do end-of-life counseling.”
Michele Meyers, a retired editor in Albuquerque, N.M., has faced all these questions as her 86-year-old mother has slowly succumbed to dementia over the past decade. She says even though her mother signed advance health directives that include a do-not-resuscitate order, Meyers and her sister—along with her mother’s doctors—have had to interpret her wishes amid an unpredictable array of worsening symptoms. They did not interpret it to mean the older woman wanted no treatment, or that she wanted to be left in pain.
Early on, her mother had arterial stents implanted for heart disease, followed by bypass surgery, Meyers says. When she recently fell and broke her hip, Meyers consulted with three doctors. “They said, ‘Even if your mom was in hospice we’d recommend surgery, because she’d be in pain for the rest of her life,’” Meyers says. A surgeon performed a half-hip replacement, which required a five-day hospital stay and weeks of rehabilitation.
Meyers is dismayed at how, when push came to shove, she and her sister found themselves approving expensive surgical procedures, despite her mother’s stated wish. “You want to do the best thing for your parent,” she says. “You don’t want them to be in pain."
It all underscores the need for people to have frank discussions with their health proxies, she says. “People really need to be thinking about this,” she says. “I didn’t think it would be this hard.”
Nathan Kottkamp, a Richmond, Va., attorney who sits on several hospital ethics committees, says that when terminal patients’ wishes are unknown when they are heavily sedated or suffering from dementia, the legal default is simply to keep the person alive"
“It’s recognized in clinical practice, if for no other reason than to avoid lawsuits,” Kottkamp says. “If you keep your patient alive, you can’t be sued for wrongful death. There clearly is a default to do more and push, push, push.”
That might mean operating on a dying patient to remove an aggressive tumor, even though it won’t stop the progress of his disease, Kottkamp says. “Do you go ahead and do it? To decide, we need to know what we think the patient would want us to do. It may not be possible to anticipate specific situations like this when creating an advance directive, but other statements and instructions in the directive may still provide helpful guidance when dealing with tough decisions such as this.”
Absent an advance directive, health proxies often can’t agree among themselves what their loved one would want. “That’s what leads to this mess,” Kottkamp says. “It’s not that we don’t have a decision maker. It’s who is making the decision and in what context.”
Federal law requires hospitals to ask patients whether they have an advance directive, but the question is often simply checked off a list and there is no follow-up.
People’s expectations about end-of-life care are often buoyed by an unrealistic belief in the power of medical advances made in recent decades, says Carol Taylor, who, as director of the Center for Clinical Bioethics at Georgetown University, often counsels family members at the university’s hospital.
Guilt plays a role, so does hope
“Probably the most common consult comes because families of actively dying or end-stage patients are continuing to insist upon resuscitation, the use of ventilators, the use of dialysis—the use of all sorts of stuff that the health care team believes is no longer helpful,” she says.
Guilt-stricken family members “oftentimes think, ‘If we haven’t done everything we possibly can, somehow we’re not loving enough or we’re failing,’” Taylor says. “Hope in a miraculous cure is certainly fueled by the TV, medical dramas and other programs, and by science that says, ‘Give us your dollars, and by golly we’re going to cure you.’”
Thomas, the geriatrician, concurs that health proxies have a tough job, but in the end doctors can help them face the reality that their loved one will die.
“For that man or woman standing there, it’s the first time in their life that their father has lain on their deathbed,” he says. “But if you have a physician there who’s been through the process, it can be very calming, very reassuring to know, ‘We’ll get through this. It’s going to be all right.’ ”
Michael Haederle is a freelance writer whose work has appeared in People, the New York Times and the Los Angeles Times.