The Doctor Doesn’t Always Know Best
There was an almost audible gasp in the room as I was making a presentation recently at a multiple sclerosis talk. What did I say that was so shocking? I merely said – if you don’t agree with your prescribed course of treatment, it is perfectly OK to speak up and say so to the doctor. You would have thought I breached some long ago, agreed-upon pact, similar to keeping the truth about Santa and the Easter Bunny a secret. I dared to say this out loud to a full room of people wanting to know more about how to live well with a chronic disease like MS, and in front of my own neurologist.
It is OK to disagree with your doctor. It is your life and the doctor doesn’t always know what’s best …
I’m an advocate for people living with MS, but I am also a healthcare activist, and want to help push for change in the way we care for people and their medical needs. This change begins at the roots — and that is with you and me, as individuals, speaking up and becoming truly engaged in our own healthcare.
The model for healthcare used to be that we went to our appointments, sat in the exam room, and listened to the doctor tell us what was wrong and what we needed to do to get better, and then we would thank our doctors for their time and leave. There was little exchange between the provider and the patient, and even less room for the people needing help to add their own thoughts. It was expected that patients would be grateful for their doctor’s expert care.
Fortunately, this model has changed for many physicians and patients, but not all. I know my parents are of the generation that still listens obediently to everything their doctors tell them, even if it doesn’t make sense for their needs. It has never occurred to them to question a doctor’s advice. I’m equally sure there are doctors who still run their appointments as lectures rather than discussions.
Fortunately, today is much different for so many doctor/patient relationships, and I hope that the message my audience took away was we can disagree politely, but we need to speak up if our treatment doesn’t feel right. Maybe the dosing schedule doesn’t mesh with our daily lives, or the side effects of treatment interfere with going to work. Perhaps, it is just an instinct within us that says, “This isn’t working, and can we try something different?” It’s OK to say this to our doctors and ask about other treatment options. Physicians should be willing to explain their treatment choice, listen to the concerns, and make adjustments where possible.
Our physicians are not mind readers, and they can’t know what we are thinking unless we are willing to speak up and get engaged on our own behalf. If there is something on my mind that means questioning my doctor, then I need to speak up. I recognize that many people are not comfortable with challenging doctors, but I stress that when I leave the examination room after my appointment, my MS doesn’t stay there with the doctor. My MS goes home with me. It is my disease, and I need to be comfortable with the approach on how it is going to be treated. If we can’t do that with the providers we have, then we need to end that relationship.
Not only is it OK to disagree with our doctor, it is equally OK to fire our doctor and move on until we find one who will respect our need and rights to be engaged in our own care.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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MikeD
I agree completely with the concept of being your own advocate and also if possible having close friend of relative also being an advocate. Why? decades of being in the healthcare industry, being an insider.
For example I have a VERY close relative with RRMS. When first diagnosed about 5 yrs ago this person met with a highly respected Neurologist at a major University medical center. When my person asked about vitamin D for MS the Neuro said he didn't believe in vitamin D, but he did however have an ongoing study how the immune system might react in RRMS patients if a tapeworm was introduced into the patients gut, and that he could get my person into the study. The theory was the patients immune system would be distracted by the worm and stop attacking the patient. The Dr. did start copaxone, my relative left this Dr. started on the OMS diet (which includes larges does of vitamin D) and later went gluten free ( from the Wahl's diet) while remaining on Copaxone. No flares in 5 yrs last MRI shows healing/ healed lesions and no new ones, these findings from one of the top MS Neuros in the country. The Neuro said it was the best report he'd ever given.
MikeD
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Bojana Balen
I too agree with the comments in the article. Still, a part of me asks why should patients need to change doctors because their neuro is not willing to be open to other treatments? Why should there not be more independent oversight for doctors and independent conciliation service to help patients obtain access where patient's voice is not being heard? In Victoria, a person is able to make a complaint to the Health Services Commissioner for lack of access to treatments and the Commissioner can organise a conciliation meeting - but (a) no patient i've spoken to is aware of the Health Services Commissioner and (b) no patient I've spoken to is willing to make a complaint for fear of reprisals in their medical care. To me that is a wholly unsatisfactory state of affairs. Yes those in the city centres can find an alternative neuro fairly easily - but what of those in remote locations? Do they not deserve to have a doctor actually listen to them if they don't have access to alternative specialists?
bb
I too agree with the comments in the article. Still, a part of me asks why should patients need to change doctors because their neuro is not willing to be open to other treatments? Why should there not be more independent oversight for doctors and independent conciliation service to help patients obtain access where patient's voice is not being heard? In Victoria, a person is able to make a complaint to the Health Services Commissioner for lack of access to treatments and the Commissioner can organise a conciliation meeting - but (a) no patient i've spoken to is aware of the Health Services Commissioner and (b) no patient I've spoken to is willing to make a complaint for fear of reprisals in their medical care. To me that is a wholly unsatisfactory state of affairs. Yes those in the city centres can find an alternative neuro fairly easily - but what of those in remote locations? Do they not deserve to have a doctor actually listen to them if they don't have access to alternative specialists?
miked
I think you would have a hard time finding someone who would disagree with you. However what would happen to those who complain or the Dr. complained about. The Dr. would justify his/her treatments unless real negligence could be proved or maybe the Dr. is just a general practitioner without MS expertise. We need spend time learning about ms, keeping up with new things (like reading this letter for starts). We need to take some responsibility for ourselves rather than relying strictly on someone else. As to those living away from cities visits to Neurologists in most cases "usually" only take place once or twice a year at most. So even long trips can been usually be undertaken. In short no one is going to take better care of you than you. So you owe it to yourself to become your own personal expert and advocate. Study the disease, go to websites like OMS and others there are several. Read, read, read. Find out who the best Neuros for MS are and how you can get to them. The fact is some Drs. don't care, some don't have time to care, like GPs, some are just are more talented than others like in anything.
Carol
Mike may I ask what is the OMS website? I also try to learn as much as I can on this disease and cannot locate a website called OMS. Is there good information out there?
miked
Carol it is https://overcomingms.org
There is a lot of good info and a very nice group on the forum.
Good luck
Mike
Deb Lamanske
I feel like my body went haywire after I had implants due to breast cancer..is it possible my body is raging because of these foreign things now in my body? I had a huge flare up two months after implants...its been going on now for 5 months. DO I need them out?
Steve
This is probably the most important statement anyone could make about managing their health care, thank you for saying it! I take this approach with myself and those I help care for, but my personal experience is that the majority of doctors don't want to hear any push-back from their patients about their diagnosis or treatment recommendations. And if you've done your research and gotten in with a really top Doctor, they're even less likely to want to listen to you. Which in my opinion borders on malpractice.
miked
Steve I agree with you with the exception of the "top Dr." statement. A really good Dr. tends to be much more open than others that's because they are always interested in learning, even from their patients. Will grant you though many big names are just egos on wheels.
Judy Lynn
"...my MS doesn’t stay there with the doctor. My MS goes home with me. It is my disease, and I need to be comfortable with the approach on how it is going to be treated."
So well said, Laura- I love this article! I recently had some new symptoms that landed me in Urgent Care, Primary Care, and then Neurology. It wasn't until the neurologist appointment that I found the courage to say, "You know, everyone keeps telling me to do that...but no one has asked me if I am able to do that. And the answer is, I CANNOT do that. It does not work for me because...."
He listened (and so did the medical student that was observing!) and we found a new solution. I'm going to keep practicing!
Linda waxman
I have a great relationship with my neurologist. From diagnosis until today, through two medications and a couple flairs, we always discuss all aspects of the treatment and alternatives and together come to a conclusion. How lucky am i.!