Back on November 27, I posted on shared decision making, or SDM for short, and opined that in broad brush, this seems like a mom-and-apple pie initiative, with the goal of encouraging better communication, informed by better data more clearly communicated, about an individual’s medical decisions. Central to that effort is the desirability for tools—written, audiovisual, and the like—that support the decision by making complex medical matters accessible to the average person, who is likely not to be sophisticated about medical or scientific matters.
Now, in a recent “Perspectives” article in the New England Journal of Medicine, Emily Oshima Lee and Ezekiel Emanuel urge more formal efforts to develop, certify in some meaningful sense, and use these decision-support tools. The discussion strikes me as similar to a long-standing parallel concern about how to develop better consent forms for human subject research.
The kicker is that the authors urge a strong active stance by government to mandate the use of such tools. This would serve three goals: “promote an ideal approach to physician-patient decision making, improve the quality of medical decisions, and reduce costs.”
Although the authors of the article seem clearly to endorse a strong physician-patient relationship, with clear communication and decisions aligned with the patient’s values, the assumption is that in the preponderance of cases involving aggressive or costly care, or difficult decisions, the cheaper course of action will also be the medically appropriate course and the one that patients will prefer. That may often be the case (and they cite reports from groups like the Kaiser Foundation to that effect), but when the patient prefers the more costly approach, there could be a conflict, to say the least.
The government would approve the tools, and, in order to ensure not only their use but the chance to collect data about the effect of using them, would demand they be used in Medicare, on pain of reduced reimbursement along the scale currently imposed on hospitals if they have to re-admit too many patients too soon after discharging them. The CMS, the agency that administers Medicare, has the legal authority to proceed, that authority having been granted in the Affordable Care Act. All they have to do is write the regulations, and put them into effect after the legally required advance notice (with open comment period) to the public. CMS would mandate the use of the tools, not specific decisions about care—at least, they would not necessarily mandate specific decisions, not initially in any event.
Over at his “Human Exceptionalism” blog, Wesley J. Smith worries that this constitutes “the bureaucrat looking over your doctor’s shoulder.” On one level, I’m not so worried—in my experience, the government is generally an accurate source of summary medical information, as on the NIH websites, for example. Further, I bet the authors would insist that they do not mean to override individual decisions by a patient and his or her doctor. It’s an open question how much the decision-support tools that eventually are derived will be written to push decisions one way or another. In its human subject protection rules, the government is quite concerned, from at least the Belmont Report since, to guard individual safety and choice, so I am loathe to jump to conclusions here.
On another level, the goals do not exactly align with what I understood SDM to entail when I wrote about it before. I thought that we were talking about helping a patient understand choices and clarify his or her values in conversation with the doctor, to support as informed a choice as possible—realizing that fully informed consent remains an elusive goal. I didn’t think cost control was part of the deal. While it is important to control costs, and it’s important that doctors not practice ineffective medicine, especially when to do so is expensive, cost control per se seems to me outside the boundaries of what I’d consider SDM to entail.
Further, I think we encounter again the tacit assumption that “data” will usually underwrite unambiguous, general rules that apply to all, or nearly all, medical decisions of a given kind and that are unencumbered by scientific controversy. Regular readers of my posts will recall that I am suspicious of that assumption. Add to that an assumption that government officials are especially if not uniquely equipped to create the decision-support tools, analogous to the HHS’s recent suggestion that it develop a single, national informed consent form for use in all U.S. clinical trials, a suggestion that I understand is being questioned by significant parts of the clinical research community.
Were this approach to SDM being taken by the medical insurance industry, we’d rightly be concerned that profit maximization was the goal. But if the government—which pays roughly half of all health care costs in the country, and whose lead on payments is often followed by the private sector—is driving the process, should we be more confident that it has the patient’s interests at heart? When does the government move from being a facilitator to a driver of care? And should we really care?
These questions may be moot. This interpretation of SDM is empowered in law and is probably coming. Perhaps it would be a development of a more privately-driven approach, as well. It seems like large organizations and rule-making regimes (I choose this language rather than the ill-suited term “system”) are engulfing more physicians’ regulated participation through mechanisms like direct employment, large contracts, etc, so this all may be the tide of history at work. But we—patients and physicians—may need to read the print—which hopefully will not be too fine—carefully.