We know that in politics lobbyists hope to have influence on important political decisions. They are advocates for their specific causes. They are respected for their expertise and they keep focused on getting the results they desire. Wouldn't you assume the same is true when applying the analogy to your own healthcare? When diagnosed with a chronic or life-threatening illness it's important for you or a care partner to become knowledgeable about advocating for the best outcome from treatment.
No one expects you to take a crash medical school course after being diagnosed with an illness. It's not necessary that you understand anatomy and physiology or cell biology. It is important that you know how your own body works. What are the unique features of your body? What illnesses and injuries have you had? What medications are you allergic to? How do you respond to medication? It's also important that you have at least a basic understanding of your diagnosis. You should know the actual diagnosis and all its particulars. If your specific disease has stages, phases or degrees, know where you are on the continuum. Do enough research so that you aren't buried in information on your first doctor's visit.
Curiosity may have killed the cat, but it could save your life. Today's healthcare culture is about increasing the numbers of patients seen by doctors while reducing the reimbursement schedules and insurers increasing malpractice insurance premiums. Curiosity allows you to feel prepared for your consults. It shows the doctor that you are part of the team and not simply a bystander or a victim. Curiosity may even get the doctor to think twice about a test, a diagnosis or a treatment. It tells the doctor that you're not simply a tourist in this process, but you are truly the CEO of your own health. Curiosity also keeps the medical team connected to you even when you're not present. They will think about questions or research answers about protocols and outcome studies so the next time you come in for a visit they are just as prepared as you.
Western culture has created a power imbalance between the doctor and patient. It's not uncommon for doctors to be put on pedestals, unfortunately that means many fall off. When meeting with your healthcare team make clear your expectations. If you feel a particular test needs to be done, don't take a simple "no" based on the insurance company declining the request. It's fine to ask the doctor or hospital to appeal the decision and requesting the doctor to provide additional information if necessary to make sure the test is authorized. If you have specific side effects that you don't feel are being addressed make a firm request of your provider. Suffering should be eliminated at every possible juncture of your treatment process. This is no time to be a wallflower. Your presence is important, so make sure your voice, your concerns and your problems are addressed.
Becoming your own healthcare advocate provides you with a sense of ownership. It gives you the presence of mind to partner with your healthcare team. You're empowered to ask questions at every step of the process. Your inner strength translates to improved immune function. We all need an advocate so either step up and take that role or team up with someone who has the experience in that position, but don't be led down a path without having a voice.
source: Greg Katz