Even though the notion of shared decision-making in healthcare was first mentioned in scientific literature already during the 1970s, the main development in the field has taken place since 1997, when the well-cited article “Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)” by Charles et al. was published. In it, the authors state that “To date, the concept has been rather poorly and loosely defined”. They go on to suggest the following four “key characteristics of shared decision-making (1) that at least two participants–physician and patient be involved; (2) that both parties share information; (3) that both parties take steps to build a consensus about the preferred treatment; and (4) that an agreement is reached on the treatment to implement.”

Since then, many thousands of scientific studies have been published to further our understanding of the mechanisms of shared decision-making, the last few years several thousands of articles every year. Various different guidelines and recommendations have been developed to support effective shared decision-making and many of them include some version of ensuring that the patient’s values and preferences are given appropriate weight during the decision-making process. Of course, this is especially important when the implementation of the treatment or action to be decided upon is entirely in the hands of the patient themselves. Which, if we’re honest, is actually the case for the absolute majority of treatments in healthcare today.

For this reason, I am always surprised when I meet healthcare professionals who don’t seem to realize that the patient can always exercise their veto in treatment decisions. I want to mention two occassions that that I have been involved with recently. In the first example, I was in conversation with a primary care physician. Even though my heart, according to the tests dr X had ordered, showed no signs of disease, they wanted to prescribe me beta blockers. I asked what the most common side effects are and dr X said that since the desired effect of the beta blockers are to lower the heart rate to hopefully reduce the number of extra beats of my heart, many patients report increased fatigue. This made me a bit concerned and I told dr X that I am not sure that I want even more fatigue in my everyday life, I already get more than I want from my Parkinson’s disease. I asked them what the specific benefits are for me with taking beta blockers. At this point, instead of continuing this conversation in the asynchronous chat that my primary care centre offers, dr X picked up their phone and called me. They didn’t respond to my question of specific benefits, instead they reiterated that they recommended me to start beta blockers, and that: “you (using the Swedish word for people in general rather than referring to me specifically) can also die from sudden cardiac arrest”.

The other example is from a discussion I had with a healthcare professional regarding a potential lifestyle change, including, among other things, changes in diet. We were discussing various different options and I got the impression that the person had some personal convictions of what they thought would be best for me. This escalated when the topic of different types of milk (cow/oats/soy/etc) came up and the person seemed to think that all kinds of milk should be avoided. I asked what kind of milk I then should use for my cappuccinos and the answer was: “do you want to drink cappuccinos or do you want to get well?”.

Don’t get me wrong, I am well aware that it is entirely possible that both these clinicians are completely correct in their statements. I may very well suffer a sudden cardiac arrest and it is entirely possible that my health would benefit from excluding all sorts of milk from my diet. My point is that if they don’t take my concerns seriously and don’t answer my questions, they cannot be sure that I will follow their recommendations. I would argue that one of the main “currencies” in health and healthcare is trust, that trust goes both ways, and that trust has to be continuously nurtured. Effective healthcare relies on mutual trust and respect for patient concerns and values in decision-making.