Good decisions in a hospital room require trust and teamwork
In a culture where social media influencers are often seen as the voice of wisdom, what does informed decision-making really look like from person to person?
How do you make decisions? Are you a pros-and-cons list maker, weighing each side like it’s a courtroom debate? Or maybe you like to test-drive your choices (my preference): Pretend you’ve picked one path for a few days just to see how it sits with you, then flip to the other and compare.
Making medical decisions brings a whole new level of uncertainty and deliberation. Having to decide between a particular procedure or a medication for yourself, or having to make a difficult decision for someone in your care, can be overwhelming.
Expecting the unexpected
Shortly after the 20-week mark in my pregnancy with our Rachel, we learned of what eventually grew into a long list of concerns with how she was developing in utero. Decisions were placed in front of us regarding different tests, including whether or not to continue the pregnancy. Ralph and I did our best to learn what we could and to make what we felt was an informed decision. Yet we were keenly aware of our limited understanding and that very few people in our community could relate and therefore help us in our decision-making.
Throughout Rachel and Janneke’s first weeks and the years that followed, we continued to face decisions that challenged us. Some of the timelines on these decisions extended into several years, such as determining whether or not to do surgery on their spines. Other choices were presented with just minutes to spare. There were a few circumstances that proved to puzzle even the experts, so we as parents offered the options.
Stretching the medical muscle
In recent years, there’s been a role created in some of Ontario’s hospitals to help patients, families and support persons. It’s called a decision coach, with the intention to provide support with medically-related decisions. In decision coaching, everything starts with a trusting relationship. It allows for personalized support, tailored to the individual’s needs. A decision coach can also serve as a bridge between patients and clinicians – helping to guide conversations and support patients as they move toward making and acting on a decision that aligns with their values.
In a culture where social media influencers are often seen as the voice of wisdom, I wonder what informed decision-making really looks like from person to person. The phrase “do your own research” has become a popular refrain, yet as I work with health research partners, I’ve come to appreciate the power of trusted teamwork.
I think back to the different supports we tried to access in decision-making for our girls. Given that their life-limiting diagnosis is so rare, it was and continues to be difficult to know who can help. We’ve been privileged to have great medical teams over the years who have listened to our concerns and respected our choices. We’ve had particularly meaningful conversations with our paediatric palliative team about advanced care planning and end-of-life care. That trusted along-the-sidelines guidance from service providers over the years is training we don’t take for granted.
