Weighing the Chances at Life's End

By PAULA SPAN

The New York Times, The New Old Age blog.

You're the surrogate charged with making decisions for an incapacitated loved one in the intensive care unit of a California hospital. You've also agreed to be part of a study on how such decision-makers interpret information about how patients will fare.

In a private room next to the I.C.U., the researchers emphasize that the statements on the questionnaire they're about to hand you are hypothetical; they have nothing to do with your own relative's care.

You're asked questions like, "If a doctor says, 'He has a 90 percent chance of surviving,' what does that mean to you?" Or, "If a doctor says, 'It is very unlikely he will survive,' what does that mean to you?" You mark your responses on a scale indicating the chance of survival, by percentage.

The backdrop to this intriguing experiment, published in Annals of Internal Medicine this week [March 8], is concern and frustration over the discordance between doctors and family members confronted with wrenching decisions about critically ill patients.

We talk frequently here about medical workers subjecting frail, sick elders to aggressive care. But the reverse situation also applies: Doctors may explain that further interventions are futile, that patients won't recover, while families push for every possible treatment. Why is that?

On the medical side, the assumption has been miscommunication.

"Either the surrogates weren't told, or they were told but they didn't understand," said Dr. Douglas White, a University of Pittsburgh bioethicist and critical care physician who was the study's principal investigator. It's a reasonable-sounding explanation; doctors do speak a different language from families, who may also be distraught in the midst of a medical crisis. "If only the information were given more clearly, they'd comprehend it and all would be well," Dr. White said, summing up the prevailing mind-set among doctors.

But as his study shows, he continued, "that's not the full story by a long shot."

The 80 people who took part in this experiment, recall, were all in the throes of making decisions for incapacitated patients, either as appointed health care proxies or as next of kin. "They were in the heat of being surrogates for very sick individuals," Dr. White told me in an interview. "There's something important about the heightened emotional state people experience when someone is in an I.C.U."

Their interpretations of what hypothetical doctors were saying about hypothetical patients proved to be reasonably correct - as long as the prognoses were encouraging. Sixty percent responded accurately to a statement predicting a "90 percent chance of surviving," and only 26 percent answered more optimistically than was warranted.

But the grimmer the prognosis, the more inaccurate and more optimistic the surrogates' responses became. Only 22 percent correctly interpreted a statement about what a "5 percent chance of surviving" meant, while 65 percent answered with greater optimism.

"They clearly grasped the meaning of these statements," Dr. White said. "They were not misunderstanding the numbers. They weren't misunderstanding the language." If that had been the case, you'd expect them to have been inaccurate about good news, too.

Instead, relatives hearing doctors deliver dire prognoses just didn't accept or believe them. They displayed, in medspeak, "a systematic optimism bias."

Such bias has shown up many times before in the medical literature. Cancer patients enrolled in early phases of clinical trials, for instance, told interviewers that they understood the uncertainties of such research, yet expressed markedly overoptimistic expectations of personal therapeutic benefit. (The purpose of such trials isn't to cure individuals, but to test new drugs or procedures.) A majority of American adults in a 2008 survey said they believed that divine intervention could save someone's life, even when doctors say further treatment is futile.

"This is the powerful desire not to be dead - we all have it," Dr. White said. "It's unsurprising that we have a powerful wish for our loved ones not to be dead either."

When interviewers asked a subset of 15 surrogates to explain their reasoning, certain themes emerged. The surrogates invoked the "Lake Wobegon effect": those prognoses might be right for some people, but not their relative, who had some exceptional quality that would allow her to triumph.

Some were skeptical about physicians' predictions, and not without reason - but notice that they weren't skeptical of the doctors' hopeful tidings, just the bleak ones. Other surrogates just needed to hold onto hope to get through the day. These are psychological processes, Dr. White pointed out, not communication errors.

Such biases may have unhappy consequences for those relatives in the I.C.U., however. "We know that many individuals don't want to be kept alive on life support if they have a dire prognosis," Dr. White said. "If family members bring great optimism to their decision-making, they may go against the patient's values and wishes."

Gerontologists, elder attorneys and experts of all stripes are forever urging people to complete advance directives. I've joined that chorus, too; I still think advance directives are crucial. (None of us has had much effect, I should note.) I'm my father's designated health care proxy; my daughter is mine.

But findings like these point out that having legal documents in place doesn't mean that families will do as asked at the end of life. Not if, as a layperson might put it, they're hearing what they want to hear.