I am worried that we are going full circle around the bioethical issue informed consent. Where once, patients and families weren’t allowed to decide to stop heroic medical efforts—the dreaded “paternalism,” as it came to be called—today a neo paternalism movement advocates giving doctors (or bioethicists or society) the right to refuse life-sustaining (and other) treatments that patients/families want. And that impetus too often leads to conflict in which family and medical team find themselves on different “sides.”
But so much of these trust-destroying conflicts could be avoided if doctors, bioethicists, and hospital staff hearken to an interesting blog post by Dr. Pauline W. Chen, at the NYT’s site. Don’t be fooled by the title, which I don’t think is descriptive of the author’s actual intent. From “Letting Doctors Make the Tough Decisions:”
But a new study reveals that too much physician restraintmay not be all that good for the patient and perhaps may even be unethical. While doctors might equate letting patients make their own decisions with respect, a large number of patients don’t see it that way. In fact, it appears that a majority of patients are being left to make decisions that they never wanted to in the first place.
Researchers interviewed more than 8,000 hospitalized patients at the University of Chicago. When it came to medical decisions, almost all the respondents wanted their doctors to offer choices and consider their opinions. But a majority of patients two out of three also preferred that their doctors make the final decisions regarding their medical care. “The data says decisively that most patients don’t want to make these decisions on their own” said Dr. Farr A. Curlin, an associate professor of medicine at the University of Chicago and one of the authors of the study.
Of course they don’t. They don’t feel equipped. But this doesn’t mean Chen is arguing that doctors just grab the levers of power and take over. Rather, she argues both against merely giving clinical information and stepping back to allow the family to flounder, and using emotional manipulation to force certain outcomes:
A doctor may, for example, tell relatives that it is their choice to withdraw life support from a dying patient. But that doctor may also use value-laden language to describe the options. One alternative may be described to the family as “reasonable” or “comforting,” while the other is depicted as “invasive,” “aggressive” or “painful.” “This creates a kind of bizarre dishonesty in how we communicate,” Dr. Curlin said. “Patients end up feeling manipulated and will resist making any decision at all.”
For doctors, then, the key to preserving patient autonomy and patient-centered care lies not in letting patients make the final decisions alone but in respecting their opinions and shouldering the responsibility together... “We have to stop drawing a circle around patients and their families,” Dr. Curlin said. “We have to stop subjecting them to the loneliness and burden of autonomy and instead begin standing in that circle with them.”
I think that is right. People can make tough calls in cooperation with physicians, perhaps even delegating the ultimate pick to a trusted doctor. But if they feel pressured and pushed, they are more apt to get their backs up, become paranoid, and come to believe (occasionally with good reason) that the medical team is hostile and wants their loved one dead and out of their hair. Such approaches lead to conflict, litigation, and clinical paralysis.
Thus, rather than calling for “doctors to decide,” if I read her correctly, I think Chen is urging that doctors do a much better job of helping people grapple with ultimate decisions by becoming part of an intimate conversation that respects—and doesn’t shrink from—the magnitude of the factors with which they are dealing. Sounds good to me.