Last fall, the prestigious Institute of Medicine released a “discussion paper” supporting the use of shared decision to improve outcomes in medicine. It specifically advocated greater use of decision aids, formal algorithms (written, oral, or video) to facilitate the process. Shared decision-making is not a new concept: the term itself was used and the practice recommended in 1982 when the President’s Ethics Commission (the full name is the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research) issued a lengthy report on decision-making in medicine. What's fascinating is that the New England Journal of Medicine could feature an article called “Enduring and Emerging Challenges of Informed Consent” that makes only a passing reference to shared decision-making. How is informed consent related to shared decision-making (SDM)?
Both shared decision-making and informed consent are supposed to be prerequisites to any decision about medical treatment. In the SDM approach, clinicians share information with patients about the potential risks and benefits of possible treatment options (or testing or screening); patients explore with clinicians their preferences; and through a process of deliberation, they reach a mutual decision. In the informed consent approach, clinicians recommend a particular treatment, summarize its risks and benefits in the context of available alternatives, and patients either accept or reject the clinician’s proposal.
The two models overlap a great deal—both involve presenting information and both hinge on patients’ understanding their options and making an un-coerced choice. But there are also stark differences. Informed consent is all about “getting to yes;” the clinician has decided what’s best for the patient (perhaps but not necessarily based on a prior conversation), though the patient is free to decline. It is a very legalistic process, whose centerpiece is a form in which a patient officially agrees to the treatment, sometimes signing away all liability on the part of the clinician. Shared decision-making is all about enabling patients to choose their own healthcare.
What’s striking is how separate the literature on these two subjects is today, as the IOM report and the NEJM article attest. The topics are like descendants of a common ancestor that diverged in their development 50 years ago. Lawyers and surgeons focus more on informed consent; ethicists and internists on shared decision-making. But there is little justification for two separate processes.
Far more reasonable would be a single process that begins with physicians describing to patients their general health status and the likely course of any new condition that warrants treatment; the process would then move to patients indicating their goals of care; next, physicians would explain how to translate those goals into a treatment, describing the risks of pursuing the proposed strategy. Based on this give and take, physicians recommend a treatment, patients accept or reject the treatment, and then both parties sign a document indicating their conclusion and briefly describing the process by which they reached that decision. For some kinds of treatment, for instance those well-established therapies for which there are no viable alternatives (eg surgery for a mobile patient with a hip fracture), the first few steps would go very quickly. For other kinds of treatment, for example those with multiple alternatives (eg chemotherapy, radiation, or hospice for a patient with advanced cancer), all steps of the process would be followed and documented.