“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.”