The dictionary defines an advocate as …
- One that pleads the cause of another; specifically : one that pleads the cause of another before a judicial court
- One that defends or maintains a cause or proposal
- One that supports or promotes the interests of another
In this morning’s article I am asking you to become your own advocate when it comes to medical decisions. Far too often we find ourselves following the advice or decisions of our doctors without being given a chance to contribute our thoughts and concerns and be a part of the decision making process.
There are several forms of advocacy including the carrying of a wallet card or bracelet identifying yourself as a person with Kennedy’s Disease. My focus today is on your responsibility to discuss potential health issues with your doctors, including the anesthesiologist, before any elective surgery.
Examples of advocacy with two different surgeries
In recent weeks I heard of two cases where men with Kennedy’s Disease had medical procedures requiring anesthesia. One was a case where the doctors did not have time to consult with the patient and were prepared to move ahead without fully understanding the risks associated with a person having this medical condition. The other was the complete opposite. The doctor took the time to read the information provided on the KDA website regarding anesthesia and pre-post op concerns.
In the first case, the patient and his spouse had to strongly impress upon the staff their concerns even when the doctor was too busy to take the time to review and discuss the patient’s condition. In the second case, the patient and his wife felt very comfortable with their doctor’s understanding of Kennedy’s Disease and any potential surgery risks.
No experience with Kennedy’s Disease
A few years ago when I broke my tibia and fibula, the nurses were ready to wheel me into surgery when I spoke up about my concerns. My wife gave the anesthesiologist printed copies of three articles on the KDA website about Kennedy’s Disease. Two of the articles outlined concerns with certain types of anesthesia as well as keeping me warm during the surgery and the head elevated afterward. After the doctor read the articles and consulted with my Orthopedic Surgeon, they decided to forego the surgery and went with a fixed cast. When I asked why, my doctor said that the anesthesiologist did not feel comfortable moving ahead with the surgery until he understood more about the disease and concerns with the types of anesthesia to use. Personally, I was thankful that he was honest enough to come up with that decision rather than just forge ahead with the surgery.
Fortunately, I have had several doctors through the years that have excellent “bedside manners.” They present options and recommend what they feel would be the best course of action. They also listen to my concerns and my wishes. The conversations have become discussions occasionally, but by doing so, we arrive at an agreed upon decision.
Another example of advocacy happened while we lived in Pennsylvania. I refused a certain treatment because of my concerns even when my doctor and the hospital highly recommended (strongly emphasized the need for) the procedure. I had to sign two release forms before the hospital would allow me to leave. In a follow-up visit with my doctor, he applauded my decision and said it was the right one to make considering the options available.
I am not advocating that you refuse needed procedures. What I am saying is that you have the right to know all of the options including any risks, and a responsibility to educate the doctors on potential issues with regards to your health condition.
Do not be afraid to speak up
In some ways, being an advocate is similar to the marriage ceremony where the presiding official asks, “Speak now or forever hold your peace.” You need to speak up and you need to make certain you are heard. The decisions made should be mutually agreed upon once all parties understand the potential risks and benefits for the treatment recommended.
Are you an advocate?