On the Value and Importance of “Shared Decision Making”

A physician should make difficult medical decisions in close consultation with his or her patient.

Duh, right?

In America, where we place high value on personal autonomy and open communication, and tend to look askance at paternalism in medicine, “duh” would seem to be the correct response. (Perhaps this is not so much so in cultures where the patient is not even told of certain diagnoses.) But insuring the effective involvement of patients in their own medical decision making is not a simple matter. The information is complex, the situation may be distressing, the messages (from numerous health professionals, the Internet, family members, etc.) may be mixed, and what the patient really wants or values may not be clear—even to the patient.

In medical ethics/bioethics at large, a lot of work has been done on defining a practical, relatively simple, formal framework, with practical tools, to assist the process of “shared decision making” between patient and physician. In part because these kind of communications are hard, and in part, I suppose, because we need to make everything “scientific” or rule-driven, shared decision making, or SDM (everything needs an acronym, too) seems to have become—quite reasonably—a subspecialty within medical ethics.

I am not versed in the SDM literature at all, but I recently saw an article on the subject in the journal The Oncologist. (This journal’s content is generally available for free on the web, and should be easily found with a Google search.)
The relevance of SDM is easily grasped in oncology, but it of course encompasses all of medicine. A more detailed, formal process is recommended if:

1) There is substantial uncertainty about the best medical decision in a given situation, in which case–
2) The decision and its pros, cons, and alternatives are described to the patient (similar to the formal process of informed consent);
3) The patient’s preferences are elicited; and
4) A plan for next steps is agreed upon.

This all seems to make great good sense. The second and third steps seem to me the most challenging. Few people in America are sufficiently “medically literate” to follow instructions for taking their medicines. (I can’t seem to locate the reference right now, but it is true.) Also, medical information tends to be communicated in complex, scientific language that goes over most folks’ heads. Add the constant controversy over medical close calls, and explaining options in terms a person can understand is a substantial challenge for any clinician, especially one who is harried and unlikely to be paid for the time and effort to have the conversation at all.

Further, eliciting patient preferences is NOT seen as a matter of setting up a “what if” game of tradeoffs. Rather, it involves a more personal, complex process of understanding, over time, what really matters to a person and how that will effect medical decisions. End of life care is the most obvious example but the principle applies more broadly. It requires an ongoing relationship that is closer than the episodic encounters most of us have with the modern medicine. It takes a spouse, a pastor, a family, a group of friends who are aware of the importance of such values clarification. It seems necessarily hard—think of how hard it can be just to decide what to have or where to go out for dinner sometimes.

I think that sometimes our attention—or at least, my attention—in bioethics can be preoccupied with extreme cases or prospects. We do well to remain aware that important work on SDM is being done. It seems to me that this work is not particularly worldview-dependent. And given the structural and economic pressures affecting contemporary medicine, we should guard against trends that make it harder for people to engage, with their doctors, in the hard calls about their care.

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