Shared Decision Making

Do you and your health care team employ a shared decision making process?
Shared decision making (SDM) is a process in which clinicians and patients work together to select tests, treatment and disease management based on clinical evidence and the values and preferences of the patient. I learned a great deal today during a teaching course at ECTRIMS 2013, entitled “Shared Decision Making for Multiple Sclerosis Treatment.”
I am a huge fan of a shared decision making approach. Besides the simple fact that it results in more dignity for the patient, I believe it is crucial to increasing adherence.  When people are prescribed treatments that they don’t want (either because they think they don’t need them or are afraid of some of the side effects), there is a very good chance that they will not use the medications correctly – or at all.
In order to help you understand the SDM process, I will present the six steps that normally occur. You may want to evaluate your own experiences as you read through these. (And when I say “physician,” it could also refer to the many health care professionals a person with MS may need for optimum care, including, nurses, rehabilitation specialists, and mental health professionals and others):
  1. The physician and patient should work together to define the problem – the physician offering a medical opinion, based on tests and experience and the patient giving any necessary information about symptoms and medical history to help the doctor determine the scope of the issue.
  2. Both the patient and the doctor need to understand the concept that there are always choices to be made. While it may be difficult for physicians to accept, “doing nothing” is always an option that the patient has the right to consider.
  3. The physician should explain and discuss all options with the patient. This includes the potential benefits and harms, as well as the probabilities of each. All of these things need to be discussed in a way that is understandable to the patient.
  4. The patient should be encouraged to discuss his or her expectations from the treatment, in addition to concerns. This may include factors such as cost, fearof self-injecting, or perspectives of risks.
  5. The patient and the doctor should arrive at a decision together.
  6. Follow-up strategies should be discussed so that both parties understand what it means when the treatment is considered to be “working” (or not), what to do in case of side effects and when they will evaluate the treatment together.
While SDM seems straightforward, it is not. Like any relationship, there are nuances that affect communication, and a doctors’ attempt to share the decision with a patient may not work if:
  • Information is incomplete about available choices.
  • Explanation turns into “information overkill,” piling too many facts and statistics in the lap of the patient at once, leading to confusion.
  • Fears and needs of the patient are not incorporated into the process, possibly trivializing something very meaningful to the patient. For instance, how many of you expressed concerns about self-injecting, only to be told, “everyone gets used to it eventually?” 
Usually, a failure of shared decision making isn’t a doctor’s lack of positive intent. I want to remind everyone that just as we, as patients, need to learn to express ourselves clearly (often while wearing a paper gown), fully listening to and understanding what patients have to say may be a developing skill for your doctor, too.
Doctors need to realize that while the majority of patients want to participate in the decision making process, many patients are intimidated by physicians. Additionally, patients often feel vulnerable and do not want to be categorized as “difficult.” In my own experience, there have been many instances when my doctors would certainly think that they were trying to engage in SDM, but due to miscommunication, were not.
In my opinion, selecting a treatment must be a team effort. While clinicians usually bring a greater knowledge about the treatment options, we, as patients, definitely bring a greater knowledge of our own preferences. Both need to be respected and integrated into the decision.
The bottom line here is that it is a new world for both patients and physicians. We need to be ready to do the work of examining both the facts about possible treatments, as well as our feelings about treatment options and taking some of the responsibility for the success or failure of treatment that we choose.  Our physicians have to be ready to listen to us and discuss factors around treatment that often don’t appear in the results of clinical trials, but that affect decisions and adherence. A very real obstacle to true SDM is time. All of these things simply cannot be achieved in a 15-minute office visit, and may require a series of visits or longer time devoted to each visit.
While it can feel intimidating to bring up our concerns and fears about treatment options, SDM clearly won’t work without an open dialogue. Are you ready to talk with your doctor about SDM?
Making Treatment & Lifestyle Decisions: Thinking About Benefits & Risks
Tags Healthcare, Research, Treatment      1 Appreciate this
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Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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  • Rob Cook   Oct 2, 2013 3:59 PM
    My wife really struggles with her care and managing medication. She has an annual appointment only with a neurologist 15 miles away, the MS nurses are so busy they never take calls and can take days to reply and when they do it's often inconvenient and her GP knows nothing about MS. She is self medicating with minimal input from her GP and making it up as she goes along. This is doing her no good at all.
  • Nancy Bergstrom   Oct 2, 2013 4:04 PM
    I am really fortunate to have a wonderful MS care. I always try to do my part by writing down issues and questions to take to my appointments. Thanks MS team, friends and family as well!
  • Avatar
    Brown-Poodle  Oct 3, 2013 7:55 AM
    I can appreciate Rob Cook's situation.
    My son's doctor did not keep a close enough watch on his reactions to the infusion drug he was on.
    Now we have more problems then we want because of neglect on her part.
  • Anybeth   Oct 17, 2013 4:24 PM
    I think my current neuro is very much for SDM, though he still has some strange sticking points. Before that, I had problems with a couple of neuros due to a combination of their own prejudices and reliance of rule-of-thumb instead of looking at the reality of the situation. One place, I reported sudden appearance of short-term memory problems, poor balance, and slurring. New "MS specialist" said I'd had too many relapses recently for it to be that; I sounded distressed, so that was obviously the cause of my symptoms (rather than a result) and I should see a psychologist. I pressed. MRI showed two new cerebellar lesions which fit the symptoms excellently. Another office, I showed up unable to stand. I asked for a wheelchair prescription so I could still go to school. The neuro initially refused, saying, "You're too young for a wheelchair!" So I was supposed to crawl? (I pressed and he reluctantly gave me a rental.) ABC-drugs failed me both not noticeably decreasing my exacerbations and giving me intolerable side-effects. I requested riskier, more powerful drug, figuring that, on the whole, letting my MS go on otherwise was the more dangerous choice. Same neuro told me that I hadn't been diagnosed long enough to try anything riskier, as if it was time that mattered rather than the utility of the other treatment, the side-effects, the lesion load, or the disability level. And one time, I asked about a rare and potentially dangerous symptom I'd gotten. It's one uncommon enough the NMSS didn't list it, but the similar Canadian group mentioned it as a rare symptom. Same neuro denied it could be a symptom (yes it can) and dismissively snapped, no kidding, "That's CANADA!" as if I had mentioned the opinion of third-world witch doctors... because, I guess, there couldn't possibly be a single MS symptom he didn't know.

    These neurologists lost my trust because they didn't see me or my case but rather some mythical "standard MS case" from which mine differed greatly. I've a much better neuro now who's fascinated by the complexity and wide variance inherent to MS. I don't think we can have SDM with doctors who treat based on how they think the case in front of them should be.