decision-making: Studies find that people chosen as proxies for people who may becomeincapacitated choose different health-care options than the patient about one-third of the time.
CHICAGO -- Don't assume you know what a loved one might want if he or she became incapacitated. There's a good chance you could be wrong.
This humbling point is driven home by two recent studies examining end-of-life decision-making.
In one, Dr. K. Michael Lipkin of Northwestern University demonstrated that people are inclined to make unexpected choices when selecting a health-care proxy. A proxy, also known as a surrogate, is someone who will make medical decisions on an individual's behalf if the person can no longer speak for himself.
Lipkin found that one-third of married people wouldn't choose their spouse as their proxy -- instead they would ask a child, a sibling or a parent to manage their medical care under adverse circumstances.
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Why? Some people don't want to burden their husband or wife with wrenching choices at a time when there is a possibility of being emotionally overwrought, said Lipkin, an assistant professor of preventive medicine at Northwestern's Feinberg School of Medicine.
Others might believe a spouse wouldn't follow their wishes -- often to discontinue medical treatment -- because of different values or beliefs, said Lipkin, whose study was published online this summer in the Journal of General Internal Medicine.
In some families, a relative who works in health care might be preferred because of experience. In others, cultural traditions may dictate that a senior family member -- for instance, the oldest male -- be granted that responsibility.
The point is, ``people should choose'' by signing a durable power of health-care attorney, a document that gives a preferred proxy legal authority, Lipkin said. His study found that when doctors raise the issue, patients are eager to name a proxy. The problem is, doctors don't routinely initiate these discussions.
There is good reason to make sure your wishes are known in advance. In some states, if someone who is incapacitated hasn't appointed a health-care surrogate, one will be appointed. Under Illinois state law, for example, a spouse is the first choice, followed by an adult child, a parent or a sibling, in that order. Dozens of other states have similar laws.
But merely saying ``this is who I want as my substitute decision-maker'' isn't enough, according to another study published earlier this year in the Archives of Internal Medicine by researchers at the National Institutes of Health.
The report was a broad review of 16 previous studies that have looked at the ``accuracy'' of surrogates' decisions. Basically, those studies asked a hypothetical patient ``what would you want done if you were in this condition?'' and then posed the same question to the person's proxy.
The finding: Proxies were accurate 68 percent of the time but off the mark in almost one out of every three cases.
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That may sound alarming, but there's a silver lining. Proxies were far better than physicians at predicting patients' wishes.
The results didn't surprise Dr. Kristi Kirschner, the Coleman Foundation chairwoman for rehabilitation medicine at the Rehabilitation Institute of Chicago. Doctors routinely misjudge ``what's tolerable or not'' for patients and underestimate how people with disabilities or serious illnesses assess the quality of their lives, she said.
Similarly, surrogates often have no idea what it's like to have a medical condition and so can't really put themselves in a patient's shoes. ``When you've not had any experience of an illness or a disability, there are significant gaps in your knowledge, and that can lead to faulty decision-making,'' Kirschner said.
It's well established that as people age or become ill, they are ``more willing to live in a debilitated state'' than they might have been when they were younger and healthier, agreed Dr. Linda Emanuel, director of the Buehler Center on Aging at Northwestern's medical school. But surrogates might not understand that.
The solution has to lie with improving communication between the patient and the proxy, experts agree. That means end-of-life planning can't consist of signing a document such as a living will and leaving it at that. Every time a person's health status changes in some significant way, the individual and his or her proxy should have another discussion that clarifies the patient's values and expectations, experts suggest.
``Have these conversations with your proxy around the kitchen table until you feel comfortable, and have them often,'' Emanuel advised, ``the same way you talk about other things that are important in your life.''
