The American Heart Association (AHA) recently published a statement on the importance of shared decision-making (SDM) between physicians and patients. This concept, though at least 50 years old, has become popular in the last decade or so, with expectations of improving patient care, satisfaction, safety, care efficiency, and cost reduction. Though some preliminary research appears to support these promises, other researchers have found that it can increase costs and decrease both patient satisfaction and care efficiency. Additionally, with increasingly fragmented care, decreasing provider reimbursement, and the emphasis on increasing the number of daily patient visits, the likelihood of expansive growth is questionable.
In the 1960s to 70s, patient engagement relied on the assumption that patients wanted to participate in their care if only information was simplified and understandable. Today, we know that SDM is more complicated than this, making it surprising that the AHA harkened back to simplification as the base for their care model. Poor literacy remains a major problem, and the current recommendation is that information be provided at the fifth-grade level. Realistically, though, not all concepts can be simplified to a point with an average word length of 4 to 5 letters and an average sentence of 10 words. Given the influx of individuals for whom English is a second language, further literacy complications are introduced.
The AHA fails to consider other crucial factors, like patient interest in engagement. Polls on patient disinterest in SDM have varied widely, depending on multiple factors, with 14 to 80 percent of respondents indicating a lack of interest in participation. How does this fit the AHA model? Are physicians (or others) expected to compel patients to participate? Given the ethical concept of patient choice, does a patient not have the right to choose non-participation? If not, then the concept of choice is meaningless!
Humanists have contended that the paternalistic model of patient care is unacceptable as it denies a basic human right, individual choice, and had to be replaced by shared decision-making, as this somewhat equalized the power between doctor and patient. However, if, as the AHA recommends, it is the doctor’s responsibility to provide the information necessary for patient choice, then paternalism remains, and the balance of power is unredressed as the physician decides what material to provide.
In his book, The Good Doctor, Dr. Lerner discusses his father’s approach to patient care, “beneficent paternalism” (my term). He did not approve of it, though he saw its necessity in certain circumstances, as he admitted that: “In some instances, the ramifications of some choices are so genuinely complicated that it makes little sense to expect laypeople to know what should be done.” While I can conditionally agree with the practicality of this approach, Dr. Lerner noted that it requires a close, even intimate, relationship between physician and patient, which he indicated is likely impossible given today’s style of medical practice. I would also be concerned that, given these same demands, it would be too easy for a doctor to slip back into traditional paternalism.
If one wants the right to make decisions, then they have the responsibility of gathering information for themselves rather than being dependent on another for it. Knowledge about virtually every medical condition and procedure is readily available online, regardless of education or English proficiency. Given the ubiquity of smartphones, with 312 million estimated users in 2023, the multiplicity of locations with free internet, and the numerous organizations that provide simple-to-understand, reliable information in multiple languages that people could review and subsequently discuss with their physicians; effectively, no one can claim an inability to find applicable material if they were motivated to do so.
Researchers unsurprisingly have indicated that the likelihood of shared decision making tends to reside in the better-educated, as those who are less so and/or have limited fluency tend to see themselves as of lesser power and remain silent. Rather than information, they require encouragement and empowerment to conduct their research. An office associate could demonstrate how easily material can be accessed, encourage them to do so, and even provide a list of trustworthy websites. Researchers have additionally indicated that encouragement and empowerment are more effective when promoted on an organizational level so that they come not only from a doctor’s office but from all aspects of the health care system.
Patient engagement does not have to be an “all or none” option. Many individuals may wish to be involved in and satisfied with some aspects of their care, though not all. Discussion of this topic can be initiated through either a simple question during an examination or on an intake form. It can be part of a conversation regarding whether one has a health care proxy or a DNR on file, etc. Even asking these questions initiates patient engagement. Or one may simply encourage a patient to ask questions or say something like, “At this point, I would like to know …. what about you?”
M. Bennet Broner is a medical ethicist.