Shared decision-making has become something of a sacred cow in medicine, even though few physicians actually practice it. There is certainly evidence that patient participation in discussions about their health care and patient engagement in self-care lead to better outcomes, as well as to greater patient satisfaction. Promoting patient autonomy requires that patients play a role in shaping their fate. So some kind of patient involvement is decidedly a good thing. But shared decision-making, I argue in an article just published in the Journal of Medical Ethics, needs to be re-engineered for it to work in practice.
To be sure, not everyone means exactly the same thing by shared decision-making. But most of the definitions look like this one, offered by a leading proponent and expounder of the model: shared decision-making is an approach in which the patient receives information about available treatment options (including their risks and benefits), the clinician and the patient consider each one in light of the patient’s situation, goals, and preferences, and the two parties jointly select the best option.
The focus of all this deliberation is the selection of a treatment. Which treatment to provide is what the doctor needs to know. And the reason for involving patients in the decision-making is that, unlike in selecting which antibiotic to use in the treatment of pneumonia, which is strictly a technical decision, deciding whether to use chemotherapy or radiation for the treatment of cancer, or whether to use fourth line chemotherapy or hospice for treatment of cancer when it progresses to a very advanced stage, depends on the patient’s values. But what I suggest in my essay is that respecting patient autonomy requires eliciting those values. Once the doctor understands the patient’s goals, once he or she knows what is most important to the patient, that information constitutes data that goes into the decision about treatment along with other data involving outcomes, side effects, and probabilities. To ask the patient to draw conclusions about which treatment is best, rather than to have the doctor make a recommendation based on a whole raft of information that includes the patient’s input about goals and values, makes no more sense than providing a patient with data about antibiotics and then expecting a patient to select which antibiotic he should take for his pneumonia.
I argue that despite several decades of work seeking to overcome the barriers to shared decision-making—barriers such as cognitive biases, innumeracy, and health illiteracy—and despite evidence that sophisticated decision aids can help patients, most doctors and patients don’t like the conventional approach to shared decision-making and don’t use it. Even medical ethicists who believe strongly in honoring patient autonomy and who have traditionally advocated shared decision-making balk when they themselves or their family members develop cancer and the physician tries to implement shared decision-making.
The approach I advocate doesn't go back to the older paternalistic model in which physicians decree and patients obey; rather, it reformulates the way shared decision-making takes place by suggesting that what needs to be shared is the process of determining the patient’s goals of care, not the process of deciding how to translate those goals, along with other highly technical information, into a treatment decision.
Perhaps we need to expand the concept of shared decision-making beyond just clinician and patient. In fact, the patient often consults multiple trusted advisors as part of their process of understanding, assessing risk, and crystalizing treatment preference. Having just recently gone through this process for myself, I have realized that making a decision is often the result of multiple inputs acquired over time. The information from my clinician is only one part of what I considered. Thus, the "capture into the EMR" that the clinician has to do to meet documentation requirements is just that, documentation. It does not get to the core of decision-making. To really support patient-centered care delivery and shared decision-making the physician must capture not only the "what I want " but also the "why I want" along with the inputs.
I have a recent example where the standard treatment recommendation was medication therapy rather than surgery. My personal journey included talking to the clinician, the surgeon, a second opinion doctor, my sister who had had similar surgery, my brother who had had medication therapy and thinking about my lifestyle and personal goals. Only after all those inputs, was I able to decide that I was willing to risk surgery and to advocate to my clinicians a surgical approach.
Shared decision-making for me included many more sources than just the physician and myself. Perhaps this is why even doctors abandon "shared decision-making" when confronted with personal health issues.
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