FEATURE

Grave Decisions

Columbia psychologist Sheena Iyengar applies her expertise in human decision making to the most difficult question of all.

by David J. Craig Published Winter 2010-11
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A sticky proposition

There’s considerable debate among bioethicists about whether patients and their families in the U.S. and other industrialized nations receive too little guidance in making painful medical decisions. The American medical system, in this regard, is more typical than the French system. In France, doctors adhere to a traditional set of ethical guidelines that date back to the time of Hippocrates and hold that patients are incapable of acting in their best interest. Doctors throughout the West tended to subscribe to this view until the 1960s and 1970s, when the idea took root that patients are in the best position to choose their own treatment. In the U.S. and many European countries, a series of court cases formalized the doctrine of informed consent, requiring doctors to detail all treatment options, along with their potential benefits and risks, and to obtain patient permission before administering care.

“The question now being asked by many medical researchers is whether this line in the sand is too strict,” says Orfali, who is an associate clinical professor of bioethics in pediatrics at Columbia University Medical Center. “I’ve found that patients often need a type of advice and emotional support that only doctors can provide, and which they’re not getting.”

Iyengar, Botti, and Orfali were the first to study how people are affected emotionally by watching over a family member’s removal from life support. They say one implication of their work is clear: U.S. doctors should be having more candid conversations with dying patients and their family members about the range of end-of-life options available to them, such as hospice care, the removal of ventilation, and instructions to avoid resuscitation.

Illustrations by James SteinbergBut this is a tricky proposition, Iyengar says, in part because U.S. doctors are paid according to the number of patients they see. In many other countries, doctors are salaried under nationalized health-care systems. “U.S. doctors pack in so many patients,” she says, “they simply do not have the time to dedicate to these types of conversations.”

There’s also the threat of malpractice. “Clearly the litigiousness of U.S. society plays a role,” she says. “I suspect that many doctors would like to tell a patient’s family when they think it’s time to let the person go, but they’re too scared to express their opinions on something like that.”

But there are ways that patients can make these types of traumatic decisions more manageable, according to Iyengar. And in an upcoming study to be conducted in San Francisco, she’ll examine one of the possibilities: the use of advance health-care directives, commonly called “living wills.” Living wills typically leave instructions limiting the use of life support.

Iyengar says her new study will address interesting questions about the culpability felt by family members, who are usually the ones who must inform the doctor of a patient’s living will. “My hypothesis is that family members will feel some guilt about their role in the death, but not as much as when there’s no will,” she says. “If you can tell yourself that you’re merely carrying out that person’s wishes, you should be able to externalize a lot of the guilt.”

The final option

Very few Americans are aware of end-of-life options, such as living wills and hospice care, multiple studies have shown. Another reason why there’s little discussion about these options in hospitals, Iyengar says, is that health-care providers earn lots of money sustaining people on life support and administering expensive tests in their final days. Currently, it costs up to $10,000 a day to maintain someone in an intensive-care unit. According to a CBS News report aired in 2009, Medicare paid out $50 billion for doctor and hospital bills during the last two months of patients’ lives the previous year — a figure nearly equal to the total budget of either the Department of Education or the Department of Homeland Security at the time.

A good way to educate people, Iyengar suggests, would be for the U.S. government to distribute information about living wills in the paperwork packages that all citizens receive when they become eligible for Social Security benefits. She also supported an early version of President Obama’s health-care-reform bill that would have required Medicare to cover doctor consultations about end-of-life options. Some right-wing critics of the bill charged that this would lead to the creation of “death panels,” or government bodies that would halt care for the terminally ill as a cost-cutting measure. There was nothing in the bill that would have permitted the rationing of treatments, but senators, amid a conservative media uproar, excised the provisions.

“People say in surveys they don’t want to be kept alive for long periods on life support,” Iyengar says. “Yet no one likes to think about dying, so we put off these types of decisions unless we’re encouraged to consider them. Discussing with people how they want to die doesn’t limit their freedom. Failing to discuss it does.”

Adrienne Frank contributed to this article.

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