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Tuesday, August 16, 2005

The burden of medical decisions

On Sunday, the New York Times ran a front-page article by Jan Hoffman on the burden of making medical choices called Awash in information, patients face a lonely, uncertain road. (The New York Times requires that you register in order to read their articles. Registration is free.)

The NYT articles focuses on several highly-educated older people and treats with sympathy and respect the difficulties they had in making potentially life-altering medical decisions:

"Who will decide?" she asked a surgeon from Los Angeles.

The doctor then recited what has become the maddening litany of medical correctness: "We're in the outer regions of medical knowledge," he said, "and none of us knows what you should do. So you have to make the decision, based on your values."

Ms. Gaines, bald, tumor-ridden and exhausted from chemotherapy, was reeling. "I'm not a doctor!" she shouted. "I'm a criminal defense lawyer! How am I supposed to know?"
The NYT article stands in sharp contrast to a recent post by the blogosphere's resident abortion clinic workers in When to say no, which adopts a very different attitude toward patients and the abortion decision-making process.

Early on in this post, abortion provider Lou writes of a woman who was "sent away" by another clinic four times. This language--when you send someone away, the implication is that you have assumed responsibility for the outcome--means that initially the abortion clinic assumed moral and medical responsibility for the outcome.

The idea that the doctor is responsible for making medical decisions and for the outcome of those medical decisions, used to be prevalent, according to the New York Times article:

Until the late 1960's, patients perceived doctors, then almost exclusively white men, as unassailable figures of authority. They knew best.
As Jan Hoffman writes, this attitude slowly started to change at that time. As things stand now:

Whether patients make a decision by themselves or at the behest of a doctor, the fact that the choice is theirs has become known among bioethicists as patient autonomy - the right of governance over one's own body. The term is symbolic of the pendulum swing away from the paternalism common through the 1960's. Patients began seeking second and even third opinions.

Within the past decade, the shift in the doctor-patient conversation - from, "This is what's wrong with you, here's what to do," to "Here are your options, what do you want to do?" - became all but complete. Baby boomers had gotten what they had asked for. And then some.
They did, and as the article details, medical choices have become confusing and painful:

As this new responsibility dawns on patients, some embrace it with a sense of pride and furious determination. But many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming.

"At 57, it's a little late to be starting medical school," Mr. Schneider remarked acidly. "But the burden still falls on me, having to pick among opinions."
Can you feel sympathy for Mr. Schneider? I can and do.

So do lots of other people, such as this sociologist:

"People want to feel a part of their health care," said David Mechanic, a medical sociologist at Rutgers University. "But they don't want to be abandoned to making decisions all on their own. When a doctor says, 'Here are your options,' without offering expert help and judgment, that is a form of abandonment."
Returning to the abortion clinic:

The clinic sent her away four times for more thinking, for more in depth counseling, and she did seem to be making progress at getting clearer about what she wanted to do. Ultimately, she did have an abortion at that clinic--she, and the clinic staff agreed, that she had made a decision that was right for her. And yet, when the clinic called her back a week later, she felt that she had not only made the biggest mistake of her life, she blamed the clinic for not making her realize it. Although she agreed that she was ultimately accountable for her actions, she could not really accept that, and blamed everyone and everything she could think of, including legal abortion.
Considering that the abortion clinic initially assumed medical and moral responsibility for the decision--they "sent her away four times"--it's not hard for me to see why this woman felt that there was at least a measure of joint responsibility between her and the clinic. But abortion provider Lou doesn't see it that way. The decision whether or not to abort, which the clinic assumed the first four times, once the woman has been aborted and becomes distraught is no longer, in Lou's eyes, even a joint decision. It is now solely her decision, and Lou adopts an attitude toward her that is simultaneously paternalistic and blaming/shaming for her inability to see it that way.

Lou's attitude toward patients is so very different from the kind and respectful attitude taken by the New York Times toward people who face difficult medical choices. When you consider that the frustrated patients in the NYT article are older, highly-educated, high-functioning, competent adult decision-makers, while most of Lou's patients share very few of those characteristics, the contrast between the two attitudes becomes all the more disturbing.

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