How Shared Decision-making in Healthcare Has Improved My Well-being

Originally published on Hemophilia News Today by BioNews, Inc.

Shared decision-making in healthcare was a topic at the National Hemophilia Foundation’s Bleeding Disorders Conference I attended virtually last week. Shared decision-making means you have a voice and your overall well-being should be considered as part of any treatment plan.

We think of medicine as a science. But as a doctor friend explained it to me, “Medicine is not science. Medicine is an art.”

As anyone with a bleeding disorder knows, the clotting cascade is exceptionally complex, and our bodies constantly change. Medication that works for one person might not work for another. Treatment can be more art than science, especially for women with mild hemophilia.

I thought back to examples of shared decision-making with my own hematology team, including the following:

When I decided not to use factor treatment

My treatment includes infusions in the vein of expensive blood-clotting medicine called factor. In the 1980s, HIV and the hepatitis virus had slipped into the national blood supply and made their way into factor products. At the time I decided not to use factor products to treat my von Willebrand disease and hemophilia type B. My doctor at the hemophilia treatment center (HTC) supported my decision.

I struggled with products that didn’t work well to control my bleeding, but I’m fortunate. Those with severe hemophilia didn’t have such choices.

Today, the products are safe, and I accept the risks.

When I decided to learn self-infusion

In 2019, I had a major surgery requiring 10 days of daily infusions of two medicines. The thought of using home healthcare sent my anxiety through the roof, so the nurse at my HTC asked if I wanted to learn to infuse the medicine myself. The decision was mine, and I decided to learn.

The decision to self-infuse has been empowering. I live in a small town, where the hospitals don’t have my medication. But my experience with home healthcare after some procedures in 2010 was downright scary. The nurses mixed the expensive medication incorrectly and infused it too quickly. They frequently blew my veins or couldn’t start the IV. One nurse decided to skip the weekend infusions.

Knowing how to self-infuse provides me a level of comfort because I can access my treatment when I need it.

When I decided not to use prophylaxis

My foot has been affected by bleeds, and I struggle to walk for more than a mile.

Last year, my doctor suggested I infuse weekly or before walking to prevent bleeding — a therapy called prophylaxis. I decided not to try this, but the decision was left up to me and remains open should I change my mind.

When I decided to treat first and explain later

Until last week, I would contact my HTC nurse before infusing. My medicine is costly, and I need reassurance. However, after two recent tongue bleeds, I explained that I’d like the ability to infuse myself first and explain later.

My HTC nurse said they have full confidence in me and my ability to make that decision. They simply asked that I document the bleeding for insurance purposes. I’m grateful to be able to make these decisions moving forward.

Shared decision-making in healthcare can apply to everyone with a bleeding disorder or other chronic disease. I encourage you to speak up if your voice is not heard by your medical team.