What is shared decision-making in multiple sclerosis?
The traditional scenario when visiting a doctor is you describe the problem, the doctor diagnoses your condition and recommends a course of treatment, and you take the treatment as instructed. This has been called the ‘paternalistic model’, one which reflects a power imbalance between the physician who has knowledge and the person who lacks knowledge. The person is thus transformed into a patient who has little role in the decision-making.
The paternalistic model is not inherently bad. In many situations, the person is looking for answers to a problem that requires specialized knowledge, and it is often reassuring that someone else is taking control of the situation. For example, if your doctor prescribes an antibiotic for an acute infection, the choice of treatment generally doesn’t involve a lot of discussion (unless you have an allergy).
Shared decision-making in MS
In some areas of medicine – such as multiple sclerosis – a ‘top-down’ model of care is not ideal. MS is a very individualized illness. The symptoms a person experiences, the severity and timing of those symptoms, and how the disease changes over time are largely unique to that person. Indeed, many MS symptoms (fatigue, difficulty concentrating, depression and anxiety) are not even detectable by a doctor, laboratory tests or MRIs.
This means that while the doctor may be an expert on MS, you are the expert when it comes to your MS.
The individualized nature of MS also has implications when it comes to how you want your MS to be managed. There are many treatment options (each with its pros and cons), they work somewhat differently in every person, and each will have a differing impact on a person’s daily life. All of these factors mean that there is no ‘best’ treatment, only one that is better for that person’s circumstances. In other words, the decision is ‘preference-sensitive’. The right decision for a person will be influenced by the person’s preferences.
This realization that people need to have some input into the care they receive has led to widespread adoption of a shared decision-making (SDM) model in MS.
1. The doctor explains from the outset that decisions will need to be made, and the person has a key role in that decision-making. So your care will be a team effort and you are an important member of that team. You will work alongside your doctor, MS nurse and other health professionals to devise the best approach to managing your illness. Your task is to try to educate yourself as best you can about MS so you can make more informed decisions.
2. The doctor lays out the options you have. Your task at this stage is to explain your preferences, your values and what you are trying to achieve. MS may be the condition you have, but it must be understood within the larger context of your life. So your role is to give voice to your experiences, your hopes and your expectations. For example, you might say that you do not want a medication that you have to take every day, or you are concerned about certain types of side effects, or you want a treatment that will not be a problem during pregnancy and breastfeeding. The doctor will not know your preferences or your life circumstances unless you explain them to him/her. Your role is to be your own advocate: express your needs and ensure they are accommodated in the treatment plan.
3. Once you have expressed your preferences, you and your doctor can weigh the pros and cons of different approaches and arrive at a decision regarding your care. Your task is to participate in the planning, come to a decision and to sign off on the course of action. The goal is to reach a decision that you can live with. This may seem like a great responsibility, but keep in mind that you are not locked in. It is likely that the plan will need to be revised over the course of your illness to reflect your changing circumstances. Your task as you move forward will be to periodically reappraise the plan to ensure it still meets your evolving needs (Ubbink and colleagues. Front Neurol 2022;13:1063904).
At a minimum, these discussions with your healthcare team should address three key questions:
- What are my options?
- What are the possible benefits and risks of those options?
- What does that mean in my situation? (Shepherd and colleagues. Health Expect 2016;19:1160-1168).
So SDM shifts the conversation. In the paternalistic model, the doctor might say: ‘You have MS and this is the treatment I think you should take.’ In the SDM model, the doctor might say: ‘You have MS and there are many options available to you. Before we review those options, let’s talk about your life situation so we can figure out together an approach that will best suit you.’
Advantages of a collaborative approach
SDM is not a one-size-fits-all model. The goal is to enable people to achieve the level of control they want over the decision-making process. But keep in mind that the degree of control will also be a matter of preference: some people will want to be involved in every decision, others will prefer that the doctor make the decisions. The only right or wrong in this process is how well you feel your needs have been met. (And you are allowed to change your mind.)
This collaborative approach to decision-making offers two important advantages to people living with MS. First, it can give a person a greater sense of control over the process: you are an active participant, rather than the person to whom things are being done. Greater engagement in your care may encourage you to more actively promote other health behaviours (eating well, maintaining a healthy body weight, regular exercise, quitting smoking, learning how to de-stress) that support your wellness.
Secondly, SDM helps you come to terms with the decisions that are made. It reduces what is known as ‘decisional conflict’ – feeling at odds with the plan (Kopke and colleagues. J Neurol Neurosurg Psychiatry 2014;85:411-418). No one is telling you what to do (which may awaken the inner rebel). So you can just get on with doing what needs to be done. And if the plan is no longer working, you have the authority to suggest changes at your next visit to the doctor.
A change in plan is often necessary when it comes to the medications you take to control your MS. In Part 2 of this article we’ll look at how SDM is applied when selecting an MS medication.
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