As I’ve grown older, I’ve become a self-advocate, taking initiative when possible. I’ve developed a close relationship with my care team, which I believe is crucial for adults with CF who want to become authorities on their care.
I took a sociology class in college on healthcare ethics. We discussed the physician’s responsibility to achieve a balance between paternalism and patient autonomy. The doctor needs to recognize what the patient wants (autonomy) while realizing that he or she is the expert (paternalism). This approach offers patients the best possible outcomes. The bond between chronic disease patient and care team is particularly important. Taking this class helped me to understand the tightropes that care teams tread when caring for patients over long periods. It also gave me a new respect for my team.
Dealing with chronic disease requires collaboration. If the patient thinks his or her care team has best health interests in mind, then there will be comfort in the care. Conversely, if the care team believes the patient is engaged and interested in his or her own care, they know they don’t need to be stern or overly paternalistic with him or her.
I’ve been seeing my care team for about five years now. Our relationship began during my sophomore year in college and I’m fortunate that we have developed a strong bond. I believe that when a patient sees the humans behind the professionals, the relationship between both parties improves.
While the members of our care teams may not share our experiences, they do care for us. It’s important that patients recognize that because they will be involved in our lives for years, or even decades. The work they do with us in the clinic goes home with them. Their care is compassionate; they care about us and want the best for our health.
Treating a chronic disease is a collaboration between a patient, his family, and care team. Since I’m writing this during the week of Thanksgiving, it seems like the apt time to thank our care teams. I think most of us with CF are thankful for our care teams who strive to improve our quality of life.
To my care team and other care teams across the country: Thank you.
Follow Tré at his humbly named website www.trelarosa.com.
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