Recently, an acquaintance asked me what to do when she strongly disagreed with a recommendation made by their family doctor for her disabled husband. I've certainly been in that situation. Still each family is different and what works for us, may not work for you.
Really, there are no hard and fast answers that I've found. I strongly prefer a medical practice that encourages dialogue and that is willing to discuss the pros and cons of alternative therapies. We can deal with more autocratic practices. It just isn't as pleasant and straight forward.
Here are seven things that I've found helpful when considering treatments other than what Boo's doctor, physical or occupational therapist, etc. recommends. (Most of the time we do follow the recommendations, even after looking at other options. Not always, but usually. We do always clearly communicate our decision to Boo's primary care doctor. That way he or she is completely aware of what's happening with Boo.)
If this is an emergency situation, clearly state your medical wishes, provide a medical power of attorney and let the professionals save your loved one's life. This is not the time to get in the way.
If the medical professional suggests a therapy or medication that seems out of line, I ask the reasoning behind his or her recommendation. Many times this simple questioning is all it takes for us to understand. It also helps to eliminate second guessing on my part later on.
Once when I questioned a doctor, with whom we were very pleased, he gave me a rather blank look, glanced at the prescription he'd just written for Boo and did a double take. He was in the wrong room. They were exceptionally busy that day and the doctor mistook Boo for a different patient.
After questioning the doctor or therapist and understanding their reasoning if I still disagree with the treatment, I'll ask what alternatives there are. The practices I like best will discuss them. Ultimately this saves a lot of time and a lot of my energy. Many times the alternatives haven't been chosen for a good reason. Sometimes I just need to know the reasoning involved.
At this point, if a medical professional refuses to discuss alternatives, I ask if a different time would be better. Just for the record, that has never been the case. Still, I like to ask. Then, I clearly tell whomever I'm dealing with that I'm uncomfortable with the recommendations they've made and I tell them why I'm uncomfortable. I also tell them that I'll be examining alternatives and that we'll contact their office later.
At home, I promptly search the internet for alternative treatments, the effectiveness of the various treatments and the feasibility of Boo using the different treatments. The Mayo Clinic and Web MD are two good sources of medical information.
I call several good friends to ask questions. One is a retired doctor. Two are nurses and one is an occupational therapist. Many times insurance companies have hotlines with nurses that will answer questions. That's not a bad resource to consider. In our area, we have two large teaching hospitals. Both have public hotlines staffed by nurses, residents and interns who seem knowledgeable.
At this point, I contact the original medical professional again to discuss what I've learned. This has met with mixed results. Usually, they are open to some discussion. On one occasion I was told that, “I don't discuss that type of thing with patients. They aren't doctors. They need to follow my plan or go elsewhere.” We went elsewhere.
Generally this is the point where we come up with a treatment plan that works for all of us. Rarely, that hasn't been the case.
If we haven't reached a treatment plan that both the medical professional and Boo and I are comfortable following, I get a second opinion. Generally Medicare and insurance companies will pay for second opinions with little fuss. Locating another doctor has never been a problem for us. I call the local hospitals. They have referral services. Another alternative is to call the medical licensing board in your state and ask for a referral.
After I've researched different therapies, considered the feasibility of them and talked to the doctor again...or gotten a second opinion, it's time to decide what to do. Make a plan and adhere to it.
Boo's health is too important to dilly dally around. No treatment plan will be perfect. If we come up with one that generally works well, then I'm happy.