I was surprised and a bit disappointed by a recent opinion published in JAMA Psychiatry by Yara Zisman-Ilani and colleagues (1) about how it’s time to support shared decision-making when it comes to helping patients choose mental health treatments. Surprised, given that the idea is hardly new and in an ideal world shared decision-making would be common sense practice for any doctor, psychiatrist, or therapist who respected their patients’ right to be informed and participate in treatment choices. Disappointed, since it is an unfortunate truth that when it comes to making decisions about your mental health treatment, a shared approach is actually uncommon in real life practice. In fact, this is one of the driving concerns behind Myndplan - that it’s time more sophisticated tools were available that empower patients, particularly those looking to improve their mental health.

What is Shared Decision-Making?

In case you were wondering, shared decision-making is a model that seeks to eliminate the power imbalance between health practitioners, who often have all the say, and their patients, who often have very little say in what decisions are made when it comes to their treatment. The idea was first proposed in the 1970’s when there was a concerted push-back against the “doctor knows best” philosophy that had guided medicine for much of the twentieth century. It took a couple of decades before it was formally defined, most notably by Cathy Charles et al. (2). In the time since this article laid out the critical features of shared decision-making there has been a lot of discussion about how to implement it and several research studies demonstrating its benefits but little real uptake when it comes to routine practice, particularly in the field of psychiatry.

Charles and her colleagues pointed out that shared decision-making must involve at least two people - the patient or client such as yourself, and a clinician, be it your physician, psychiatrist, psychologist, or other therapist. Both of these parties actively participate in a process that involves the sharing of information - most commonly about things like treatment alternatives and the risks and benefits that go with them. The goal is to arrive at a treatment decision that both your clinician and you agree to. 

In their Viewpoint article, Zisman-Ilani et al point out that with shared decision-making your own lived-experience counts as much as professional experience of the clinicians you are dealing with - regardless of how expert the latter are, or how many are involved in your care. The process also requires that a real choice is possible based on at least a couple of options, as opposed to getting your approval for a single treatment or procedure. Furthermore, while understanding risks and benefits is necessary to the process, it’s just as important that any decision you make is consistent with your personal values and preferences. This means that the process is open to the possibility that your decision may be different than the one your doctor, psychiatrist, or therapist would make.

But there are barriers...

So what exactly are the barriers to shared decision-making that have prevented its widespread use? Zisman-Ilani and his colleagues have a lot to say about this, though again, much of it is not new. For example, they point out that stigmatization and discrimination directed towards people with mental health concerns by their health care providers fosters the old “doctor knows best” approach to decision-making. What’s more, because psychiatrists are capable of hospitalizing you against your will if your condition presents a risk to the safety of yourself or others, they can easily find themselves in a position where it seems to make sense that they take responsibility for all of your important decisions. Yet outside of extreme cases - such as if you were to experience a psychotic episode and lose touch with reality - there is no evidence that severe mental illness interferes with your ability to participate in decision-making. Plus, even in extreme cases you’ll have proxies such as a partner, family member, or trusted friend that are quite capable of shared decision-making. And don’t forget that if you are at risk of another episode there is no reason why you could not make your treatment decision in advance. That’s something people do all the time in the case of advance directives in medicine, such as when an elderly person specifies the level of intervention they want should they present in the emergency department with a stroke or heart attack. 

We can do better

When I began building Myndplan, part of my motivation was to ensure that consumers were enabled to fully understand and participate in decision-making around their mental health care. This requires things like providing assessment results directly to you along with the resources you need to interpret these findings; creating self-diagnostic tools with built in aids for decision-making, such as symptom screens with realistic cut-offs and evidence-based estimates of effect sizes; and building treatment tools that clearly explain how different methods work and best-practices for implementing them in your life. These things are important not just because they boost your ability to make informed decisions that align with your values, but because they improve the chances that whatever your choice, you’ll get the most satisfaction possible from your efforts. 

References:

(1) Zisman-Ilani Y, Roth Robert M, & Mistler LA (2021) Time to Support Extensive Implementation of Shared Decision Making in Psychiatry. JAMA Psychiatry, 78:11, 1183-8.

(2) Charles C, Gafni, A & Whelan T (1997) Shared Decision-Making in the Medical Encounter: What Does it Mean? (or It Takes At Least Two to Tango). Soc Sci Med, 44:5, 681-92.