Are you a passive patient or an active patient? A passive patient does exactly as they are told by their physician; following orders to take a pill, have a test, undergo surgery, and more. An active patient is engaged and informed in their own healthcare. They understand the importance of a team approach.
If you believe best practice is to completely place your care in the hands of a medical professional or you believe “my doctor knows best in all situations”, you may be surrendering vital decisions regarding your health, and therefore your life. This is a dangerous mindset. Advocating for your own health is not a spectator sport. Best outcomes are achieved when your care is patient-focused and not provider-directed. Empowered patients have better health outcomes. A team approach partners you with your doctor to achieve healthcare goals as you feel more confident when making decisions about your health.
Your healthcare team may start with just you and your primary care doctor. The common denominator is you and that is why you need to be your own greatest health advocate. Dr. Glenn Pheffer, MD with Cedars-Sinai Orthopaedics - Los Angeles states, "Patients who actively participate in their healthcare invariably obtain the best outcomes. Do your research in picking the best doctor for you, seek out several opinions, understand your diagnosis, and realize that without your active participation success may be impossible. You are the most important part of your healthcare team. Get involved and stay involved. It’s your life after all."
“When it comes to my health I drew the short straw.”
I say this matter of factly but there is definitely a grain of truth to it. I have Type1 Diabetes and wear an insulin pump; was diagnosed with CMT (Charcot Marie Tooth Disorder), a neuromuscular disease; have issues with my tendons resulting in multiple surgeries. But a medical chart packed with challenges is not who I am. I’m a middle-aged woman who is full of life. I love being a wife, mom, daughter, sister, aunt, friend, speaker, author, blogger, and nurse. It is through the many health challenges I have faced that I feel empowered to live my best life and to help others navigate these waters. Empowered patients have better health outcomes.
My journey…
January 16, 2020, I was in the car with my husband when I received a phone call from a doctor informing me that my recent MRI of my brain revealed I had hydrocephalus, a condition in which an accumulation of cerebrospinal fluid (CSF) builds up in the brain. I would need brain surgery to have a shunt inserted. I had been experiencing severe headaches and balance issues but this news was shocking. As I knew I was not in immediate danger, I decided to slow the roll and seek another opinion. And so the journey began. I went into combat mode watching videos, reading articles, speaking with anyone who could help educate me about this condition. I reached out to several nurse friends to find recommendations for local neurosurgeons for a second opinion. I did my research. Hours and hours of research. I started trying to wrap my brain (enjoy the pun) around all of this and I can laugh now, but I must confess I spent time searching for a surgeon who would operate without shaving the entire head. I even had a friend willing to do a “unity” shave. The first doctor wanted to do more testing. It was true my MRI showed hydrocephalus, but he was not ready to make a clear diagnosis. I felt relief but also confusion. A second doctor was not convinced this was hydrocephalus and scheduled me for skull injections to help with the inflammation. I wanted to be sure and not just bank on what I hoped would be the outcome. Time for my 3rd opinion. My company has a program to submit medical records when a diagnosis is difficult or unclear, and a panel of expert doctors will meet together to review your case and make a formal recommendation. My case was accepted and I waited… for weeks. This panel of doctors also agreed that my MRI was suspicious but that hydrocephalus was unlikely and to just keep an eye on my symptoms. No shunt. I was relieved but empowered by my ability to seek multiple opinions and use that expert evidence to make the best decision.
I learned that no one is a better advocate for my health than me. The idea of keep asking until you get the answer you want is, not what I’m saying. Medicine is not an exact science and unfortunately, misdiagnosis happens every day, but you can minimize those chances by being an active patient.
Active patients take an active role.
The best colleague a doctor can have is a fully informed patient.
Educate. Seek. Network. Do not settle if you feel there is more to learn. Thomas Jefferson said, “Whenever the people are well-informed, they can be trusted with their own government.” The same is true with our health... a fully informed patient can be trusted with their own health.
Educate yourself. It’s okay to research symptoms on the internet but make sure you are using reputable sources. Your research should not be motivated by fear but rather a quest for facts through discernment. Don’t turn to Dr. Google to self-diagnose. Symptom checkers are designed to be a starting point," says John Wilkinson, from the Mayo Clinic. He hopes that these sites allow patients to "be better equipped to have a conversation with their doctor as to what the next step might be."
Seek additional opinions. And a third or fourth if needed. If you are facing a serious health condition, other treatment options exist, or the diagnosis is not clear, getting a second opinion could be warranted. Consider seeing someone from a different healthcare institution. At another hospital, even across town, there may be a very different philosophy. You will need to tell your current doctor that you would like a second opinion because you will need all your medical records. It can be awkward to bring up, but doctors generally welcome having their patients seek second opinions and if your doctor would be offended by a second opinion, he or she probably does not embrace a team approach. Earlier this year I was facing a complete reconstructive foot surgery so I decided to seek an additional opinion. Dr. Pfeffer came highly recommended. I sent my records to him and scheduled a phone consultation and this call completely changed my course of action. “Whoever is going to do your surgery, and that's fine if it’s not me, please ask how many surgeries like this have you performed. Because you want someone who has a massive amount of experience in this procedure.” I returned to my local doctor and asked that question. He answered, “Tons. At least 10 a year.” Dr. Pheffer performs an average of 6-8 reconstructions a week! Needless to say, I became a patient of Dr. Pfeffer.
Network. Talk to people. Many times people who also have this condition, or care for someone who does, can be a great resource. Join support groups. Facebook has many. This can be so valuable to learn, ask questions, and locate resources, including recommendations for doctors. But this does come with a warning. Don't rely on chat rooms and message boards for medical advice. These online forums, full of personal stories, can cost you hours of research time as you seek that story that aligns exactly with yours, leading to your path being diverted and your health jeopardized. I have also found that sometimes these forums can be filled with a lot of doom and gloom. Bypass the gloom because that never helps.
Yay for you! This is the end of part 1. I hope you feel more empowered to take an active role in your health. And remember that empowered patients have better health outcomes. Please stay tuned for the conclusion coming out next week. Please subscribe so you receive the blog reminder.
See ya soon!