A book to fix the gap between theory and reality in shared decision making

One lesson that covid-19 has taught us is the importance of communicating accurate and clear health information to the public. Messages from healthcare officials and policy makers were devoured daily and used by the public to make key decisions about how to behave and what actions to take. It is therefore a shame that the recently released book Your Life Depends on It: What You Can Do to Make Better Choices about Your Health,1 by Talya Miron-Shatz, was not published 20 months earlier.

It is precisely the kind of book that everyone—whether they are laypeople, policy makers, or healthcare professionals—would have benefited from reading. It could have helped design better communication strategies, based on behavioural economics and psychology, for interventions such as face masks and vaccinations, and provided patients with a better understanding of how to approach their health in a way that improves their wellbeing.

In this erudite, personal, informative, and funny exposition, the author recounts their personal healthcare experiences as a hushed child with a scoliosis diagnosis, before discussing more broadly the medical journeys that millions of patients and healthcare providers must undergo every day. As one of the quotes nicely conveys at the start of the book, it is not an easy path but one which our life depends on. Indeed, being able to make the right health decision is one of the hardest and most challenging tasks we face throughout our life. Improving the probability that better decisions are made is the author’s aim.

Like most people, in the past 18 months or so I have had many discussions about covid-19. These featured elements of scepticism, assurance, confusion, uncertainty, risk, anger, frustration, envy, regret, and happiness (when the vaccine was announced). This tumultuous mix of feelings would not be foreign to most healthcare professionals and patients, who will have faced them before (and after) covid-19. How we navigate these emotions, thoughts, and choices more effectively are topics that are woven throughout the book. Interestingly, however, it argues that the shift to a model known as shared decision making, where a patient jointly makes healthcare decisions and takes shared responsibility for them, sometimes to the point of leaving the decision entirely in patients’ uninformed and possibly unwilling hands, might be, to use Miron-Shatz’s words, “unfair.” Not everyone will agree with this assertation but drawing on her personal experience and scientific work, the book makes a powerful case for why this might be so.

A key term that Miron-Shatz uses to elaborate on why shared decision making can be unfair is “the gap.” The gap refers to the chasm that exists between the ideal process for reaching a medical decision, and how it takes place in real life practice. This is a fundamental challenge that patients, healthcare providers, and healthcare systems must understand and assimilate into their mental schema and interactions, as within this gap rest many of the ills that pervade the medical system.

The gap refers to what healthcare professionals might expect from patients, and to the degree to which they can live up to these expectations given the limits of healthcare systems. The current model of shared decision making places a large burden of choice on patients, assuming that they are able and willing to process the healthcare information they have been given and make an informed decision. Yet, in practice, a large scientific body of evidence questions this fundamental idea. Patients often lack medical and technical knowledge, have inaccurate knowledge, or possess low health literacy. To make matters worse, the information materials that patients receive seldom take these difficulties into account. Given the limited time physicians can spend with their patients, Miron-Shatz makes the case that it is simply not always realistic (or fair) to place the decision on the patient.

Likewise, healthcare providers might be under stress, lack good communication skills, or misunderstand a patient’s culture or background. Under these circumstances, it is equally not realistic (or fair) to expect that healthcare professionals will be able to always guide patients through their health choices without either abandoning them to make decisions on their own or taking the onus on themselves and acting in a paternalistic manner, which ignores their patients’ preferences altogether. In many cases, our healthcare systems are simply not attuned to patients’ or healthcare providers’ needs and helping each party to realise shared decision making.

Step by step, the book exposes some of the key obstacles responsible for creating this gap, which prevents patients from fully participating in their care, and examples of how to overcome them. A striking example is the presentation of probabilities. Miron-Shatz praises the NHS Predict tool, which displays the likelihood of gaining additional survivorship from various treatments after breast cancer surgery. When written in clear language that explains risk and probability in a way that is easy to apply to you as an individual (e.g. “out of every 100 women in your condition, three will benefit from the treatment”), women can truly choose their course of action, based on this knowledge and on their own preferences. Importantly, the book offers clear and simple guidance and solutions that can be implemented by the three relevant actors: patients, healthcare providers, and the healthcare systems. Indeed, at the end of each chapter, sound and practical advice is provided for every stakeholder.

While it is slightly unclear how likely or easy it is to implement these ideas, one thing is certain: all three stakeholders must be engaged in this ongoing process for the gap to shrink.