|25th April 2019
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When I was diagnosed with multiple sclerosis (MS) in 2008, aged 28, I felt completely disengaged from the healthcare system. I received no signposting or guidance about how to become better informed. I felt alone and overwhelmed. Back then, I was under a very traditional, paternalistic model of healthcare where “doctor knows best.” I became increasingly frustrated because my feelings and thoughts about my care and my treatment plan were dismissed as irrelevant. It led to resentment because I no longer felt in control of my future. However, all that changed in 2011 when I moved to a hospital where shared decision making was very much on the agenda.
There are various treatments available for MS patients, many have similar efficacy but different risks and benefits. The number of treatment choices available is also increasing fast. This means the treatment decision is very much based on the patient’s personal preferences. If the patient is well-informed, they can choose the treatment that will work best for their lifestyle and needs, which is why shared decision making is key.
Moving away from the paternalistic model of healthcare means the healthcare professional has to trust the patient. This may not be easy - the doctor has years of medical education and they are often used to making decisions for their patients. However, it’s important to remember that the patient is an expert in his or her own right – they know their own body, their symptoms and what side effects they can endure, as well as the ones they can’t. This means establishing mutual respect for each other’s role in the relationship is important.
When shared decision making is done well, the healthcare professional informs the patient that a decision needs to be made and then elicits the patient’s preferences, values and goals about their care to determine next steps.
The doctor then discusses, in plain language, all the suitable options, given the patient’s goals, including the option of not treating. A decision is then agreed, with the possibility of the patient delegating the final decision to the doctor. Importantly, the choice stems from a joint discussion and both parties assume responsibility for the consequences.
Being diagnosed with MS is overwhelming – at first it seems like the disease is unmanageable. When I found out I had MS, I had a choice of four disease modifying therapies. It’s much easier to find information on such small number of options. However, if I was diagnosed today, I could be faced with a choice of up to 14 treatments, making deciding on one much more complex.
Every person with MS is different, not just because of their particular symptoms but also in terms of their personality and what they want out of life with MS. As a result, what a patient wants can often differ from what the doctor thinks they want. This means, creating a personalised healthcare plan is crucial, and the only way to do that is to make decisions collaboratively.
An informed patient often makes different and more confident choices about their healthcare as they are able to develop a better picture of how the therapy works and the side effects. Shared decision making encourages a patient to take responsibility for his or her health. This not only leads to better adherence and outcomes, it also has wider implications for the patient’s overall health. Often patients will take better care of themselves - losing weight, stopping smoking, exercising more and eating better.
|25th April 2019
Patient advocate Trishna Bharadia explains why shared decision making is crucial for ensuring multiple sclerosis patients feel heard and empowered
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David Lazarus charts his journey from initial MS diagnosis in 1990 to his experience participating in innovative clinical trials, along with his advice for other patients.
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