Since the 1970s, the credo of progressive medical practice has been shared decision making, which rejects the “doctor knows best” approaches to care, prioritizing the preferences and goals of patients. Slowly, medical schools have adapted curricula to emphasize bedside manner and cultural competency, and many practices have shifted to a medical-home model that takes patient-centered, a team-based approach to care.
While there is no question that patients have benefitted from many such innovations, it is also clear that realizing truly shared decision making would require altering current medical practice profoundly. For example, research on decision making at the end of life has shown that far more people wish to die at home than actually do. It takes little imagination to foresee the degree of change in culture and structure of medicine that would be needed to guarantee that the majority of people died in a setting and manner of their choosing. This issue of Virtual Mentor shows that improving shared decision making in a meaningful way will significantly change medical culture and systems for the better, from ideas about consent and autonomy to medical education to health care policy.
First, Jane DeLima Thomas, MD, discusses a common dilemma in shared decision making: that of the patient who seems to harbor unrealistic expectations. Dr. Thomas recognizes that communication and information are, in a sense, interventions like any other and should assessed in terms of their risks of harm as well as promises of benefit.
Several articles explore informed consent. This month’s excerpt from the AMA Code of Medical Ethics includes the opinions on informed consent and withholding information from patients. Bryan Murray’s contribution to the health law section reviews the legal history and definitions of informed consent. In an op-ed, Zain Mithani, MD, considers whether physicians should seek patients’ consent before prescribing medications for off-label use and reviews the arguments both for and against. Peter H. Schwartz, MD, PhD, explains that giving patients quantitative information on risk during the process of obtaining informed consent may contribute to their over- or underestimating the risk in question, distorting their ability to decide between treatments.
Several other contributors discuss challenges and alternatives to classical, autonomy-focused informed consent. Steven D. Freedman, MD, PhD, and Camilia R. Martin, MD, MS, point out that merely opening health-system electronic medical records to patients will not help them interpret, understand, or remember the relevant information; health record systems intended to facilitate shared decision making must be designed for that specific purpose. Sorcha A. Brophy reviews a survey of physicians that found a gap between some physicians’ stated beliefs about disclosing information to patients and their behavior, concluding that more research is needed into the particular circumstances and relationships surrounding these behaviors.
In an op-ed article, Brian C. Drolet, MD, and Candace L. White, MD, MA, argue that shared decision making is not always possible—patients may lack sufficient health literacy to be equal partners, physicians and patients may be unable to agree, and surrogate decision makers may be overwhelmed. They conclude that paternalism, used selectively and sensitively, may sometimes be appropriate. Similarly, in his case commentary, J. Randall Curtis, MD, MPH, proposes an alternative to explicit informed consent for situations in which surrogate decision makers for ICU patients must consider withdrawing certain treatments. Dr. Curtis argues for the use of ”informed assent” in certain settings where making difficult decisions about ending futile care for their loved ones is a significant burden to families. In this way, we see that care centered on patients’ and families’ decisions does not just involve considering the type of information disclosed but also the degree of involvement that is required.
In the medicine and society section, Judith A. Hall, PhD, reframes what it might mean for physicians to train and practice patient-centered care. In her vision, further work would be put not only into training clinicians to express compassion, as is commonly done in medical schools, but also into improving their receptiveness to patients: to build better relationships through reading patients’ emotional states, concerns and preferences, even when not verbalized. Steve Crossman, MD, discusses one method of helping student clinicians develop this receptiveness: Balint groups, in which medical student group members describe a difficult patient relationship, and other participants put themselves in the shoes of patient and student, thus strengthening all students’ empathic response to patients.
Finally, Allan Ramsay, MD, a family physician in Vermont who has made the transition from clinical practice to membership on the board responsible for designing the nation’s first single-payer health system. In an interview, Dr. Ramsay discusses the crucial role of another party in patient-physician decision making: the government. Ramsay’s comments are a powerful reminder that changing medical practices in the doctor’s office requires the support of policy reform.
This issue again and again speaks to a common theme: truly putting the patient at the heart of decisions is a much more nuanced and less formulaic endeavor than it may initially seem, and doing so can profoundly transform medicine for both patients and clinicians. As Dr. Hall points out, improving shared decision making expands the ethical duties of physician to obtaining as much understanding about our patients as possible; it shifts the physician role from simply providing treatments with some patient input to building relationships. It is from this subtler, more sophisticated perspective that, I hope, we physicians may also benefit, experiencing a more satisfying and enriching practice of medicine in which both our humanity and that of our patients is better realized.