The practice of medicine is changing. An expanding array of approaches is available to address patients’ health situations, and patients are increasingly encouraged to collaborate with their clinicians to figure out which is best for them. Patients are considered autonomous, and, in their work of being a patient, they are expected to take responsibility over their health, to be informed about their care, and to be actively involved in managing their care.
Particularly, they are expected to actively take part in the medical decision-making by preparing for clinical encounters: by reviewing booklets, videos, or decision tools, and then using this information to develop preferences to discuss with their clinicians. Clinicians, in turn, are expected to provide patients with the required information about their health and (possible) care, to apply (inter-)national and regional guidelines, and at the same time, to provide patient-centered care that fits the wishes and needs of their “client”: the patient. In this way, shared decision-making — patients and clinicians working together to figure out what is best — is like a business transaction.
It is questionable, however, whether all patients can, should, and want to be actively involved in making decisions about their care. Assuming — or imposing — patient autonomy could lead to “an underestimation of patients’ vulnerability and an overestimation of patients’ abilities to make such decisions.” Realizing that there are options, and that the outcomes of care are uncertain, can feed the fear of making the wrong decision and be enormously burdensome to patients. However, we must also stay alert for the opposite: when patients are considered vulnerable and helpless, clinicians may engage in paternalism, underestimating patients’ ability and wish to be involved in deciding what is best. Ultimately, this could lead to patients receiving care that is unnecessary, unwanted, unreasonable, or harmful.
Shared decision-making refers to more than just making decisions about care. It is a process, a conversation between the clinician and the patient, a way to craft care. The shared decision-making process can be broken down into different elements, including creating choice awareness, discussing reasonable approaches and their respective desirable and undesirable characteristics, discussing patients’ values and deliberating to form preferences about the options, and making a final decision. Shared decision-making is thus more than just offering patients information or choice and asking them to be autonomous in making decisions about their care.
Shared decision-making is not a transaction in which clinicians claim to be “patient centered” but in fact abandon our patients to uncertainty and fear. It is irrelevant who makes the final medical decision, as long as the chosen approach makes the most sense to each patient and his or her life. If patients are not able or willing to be autonomous, clinicians could make decisions about care based on whatever imperfect information they may have about each patient’s informed preferences, with the utmost respect for what the patient values in life and health.
Although there is some evidence — unfortunately much weaker than usually acknowledged — that shared decision-making can lead to improved patient outcomes, the primary goal of shared decision-making is simply to ensure that patients receive good care. It is a way to fundamentally care for this patient, not just for people like this patient. This approach to care can be difficult, both for patients and clinicians. Clinicians must be up to date on the available approaches (treatment strategies, for example) and be able to conduct clear, unhurried conversations with each patient about these approaches and what each one would mean for them in their situation.
This is not a sinecure. But who has ever claimed that clinical care should be easy? Indeed, in this way, shared decision-making is a challenging practice, one that clinicians and the systems that support their work must master on behalf of patients. Done well, it draws a stronger connection between clinicians and patients, and rewards clinicians with meaning within care routines. While not easier, shared decision-making can make care better.
This is a modified and translated version of this paper, first published in Dutch. This article originally appeared in NEJM Catalyst on March 22, 2017.