The importance of shared decision-making in healthcare

Do you know what shared decision-making means in terms of health? It’s not a widely discussed term, but it’s important to understand. With my diagnoses of aplastic anemia and paroxysmal nocturnal hemoglobinuria, learning about this concept helped me feel I was part of my care team.

According to a 2022 article in the journal BMJ Evidence-Based Medicine, shared decision-making can be defined as “a collaborative approach by which, in partnership with their clinician, patients are encouraged to think about the available care options and the likely benefits and harms of each, to communicate their preferences, and help select the best course of action that fits these.”

As a patient, I’ve often relied on my doctors’ expertise and advice. That’s not a bad thing, but it doesn’t help me practice advocating for myself and being involved in the decisions regarding my health. It can also lead to habits such as not doing my own research or following instructions without asking questions. These actions — or inactions — can make it easy to sideline my personal beliefs and forget about what’s important to me when deciding on a treatment plan.

In my column “How I discovered the medical team for my rare disorders,” I explain the importance of trusting that my physicians understand my diagnoses and have my best interest at heart. It’s necessary for us to work together as a team.

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Shared decision-making creates a sense of collaboration. If you’re not used to this, it can initially seem awkward. The key to collaborating with your providers while ensuring that trust and comfort remain intact is open communication.

As the article I mentioned above notes:

“Care happens in interaction between the patient and the clinician, in conversation where the patient and clinician uncover or develop a shared understanding of the problematic situation of the patient and identify, discover, or invent ways to make that situation better, given what each patient prioritises and seeks. Thus, to get the right care for each patient, patient and clinician collaborate and deliberate together to figure out what to do.”

Open communication is key

In my experience, a diagnosis can blur priorities or prompt concerns such that a provider may not consider what’s important to the patient when developing a treatment plan.

I was diagnosed with my rare blood disorders in my early 20s. After the initial shock wore off, I found myself thinking about my future. Many questions swirled in my mind. Would I be able to have kids? Would I be able to maintain a career? How would I battle my conditions and prioritize relationships?

These questions raised significant concerns regarding my treatment options. One of them was a bone marrow transplant, which might have affected my ability to have children.

Fortunately, I felt comfortable enough to speak candidly with my doctor about my desire to have kids at some point. He knew this mattered to me, and so he referred me to a fertility specialist to gather information about freezing my eggs. As a result, I was able to complete the egg-freezing process and keep the option of a bone marrow transplant on the table.

Reflecting on the open communication with my doctor that day, I question what might’ve happened if I hadn’t spoken up. Where would I be? Would I regret not laying all my cards on the table?

This example is only one view of what shared decision-making with your healthcare team can look like. Regardless of your situation, it’s important to know what matters to you, build trust with your doctors, speak openly about your concerns, know your body, and advocate for yourself. Your life depends on it.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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