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.
It would be helpful if the clinicians mentioned could share evidence to support their words. It would be the first time I hear of a person with PD becoming completely well by not drinking Cappucchino or by taking Beta Blockers
Thanks Amy, I completely agree
I’ve been part of many conversations with people who are coping with medical guidance that they suspect may not be well supported by evidence, and have had this experience myself. One of the factors that may lead to this style of communication is the mistrust practitioners have in the reasoning power of their patients. They don’t want to “get into it” as the phrase goes here in the US, because they’re concerned it will just lead to fruitless argument. They’ve studied and prepared to give this advice, so if you don’t want it, too bad for you. What they miss is that most patients are not trying to just substitute our own wisdom for that of the practitioner; on the contrary, we want to hear _more_ from the practitioner, to see the thinking behind the guidance. Unfortunately, most practices lack any structured way to make this possible; neither a way to share the evidence Amy Price mentions, nor the new kind of evidence we can gather through “enhanced trial and error” by collecting some observations and reasoning with them, making practice more than like research. I think this lack of a framework and tools to share reasoning with data is the missing layer (along with training to use them).
Sara, I’m so glad you steered me here on LinkedIn – this resonates on so many different issues – I will be back to say more, I hope, but I’ll just note that you’ve done a superb job of articulating some nuances of SDM that I haven’t seen stated so clearly before!
I’ve lately become fascinated with the deep questions of what it is to be a doctor and to be the doctor in a medical encounter, so these anecdotes just stir me up! But you’re absolutely right that a clinician ought, sensibly, to think out how well the rx will play out in reality.
I first learned about the difference between theoretical efficacy and practical efficacy when different birth control methods were being evaluated during the sexual revolution (because yeah I’m that old). It made QUITE a big difference that some methods work better in a lab but not at all well in the, ahem, heat of “battle.”
One thing that resonates with me is the 1997 article saying that SDM had been poorly defined. That’s the core assertion of the keynote I gave in June at the DCI event “Future of Patient Engagement”: I said the reason the field has gotten nowhere is that we’ve never defined the term!
If this interests you I’d love to pursue it with you. My talk had quite similar thinking was necessarily not at the disciplined level of a PhD, so it might be quite helpful to have you as a guide.