Doctors Should Be Educators, Not Just Medicators
Empowering patients to make informed decisions about their own bodies and lives.
Despite my recent resolution, I have not managed to publish in the past three days. One factor is that I have been very busy during that period with what could be called interstate medical tourism.
Three days ago, I flew from my home in the Atlanta area to the Boston area to stay with family for a while. Two days ago, one of the Boston area doctors I have been in touch with had me have another MRI scan of my brain. The results were inconclusive, but may include signs that the cancer is responding to the radiation treatment as intended. And yesterday, I spent the whole day going to medical appointments, driven and joined by my supremely supportive big sister.
I lined up these Boston-area appointments in order to get second opinions and to possibly transfer care with regard to my cancer. While I am deeply and forever grateful to my care providers in Georgia for very likely saving my life, I felt like it was time to move on, because I have been dissatisfied with some key aspects of that care.
I have deep misgivings about the medical establishment and its conventions in general, including its standard-of-care approaches to cancer. And I am largely persuaded by modern, science-driven naturopathic and integrative approaches to health care, including the metabolic approach to cancer pioneered by Nobel laureate Dr. Otto Warburg (1883–1970) and advanced by Dr. Thomas Seyfried of Boston University, Dr. Nasha Winters, and others.
That being said, I am in no way dogmatically dead-set against any and all allopathic treatments. After all, I have already consented to have my brain bombarded with a powerful dose of toxic radiation upon my radiology oncologist’s advice. And today I will most likely start taking a genetically-targeted enzyme inhibitor called osimertinib (brand name, Tagrisso) that I hope will arrest my cancer’s growth, even though it has a long list of known potential and potentially dangerous side effects.
But what I am dead-set against is passively and blindly following whatever my doctors recommend. For example, I have declined to regularly take the anti-seizure medication Kepra or to even begin taking a prescribed steroid for the swelling in my brain resulting from the radiation treatment (which can contribute to seizures). I have thus far decided that the side-effects I’ve experienced from the former and the risks of the latter outweigh the risks of not taking them, especially since, although I have continued to have periodic visual disruptions, I have only had one seizure and have been (thanks be to God) seizure-free for 47 days now.
I insist on actively making my own informed judgments about what I subject my body to. I base those decisions on multiple factors, which do include the expertise of my conventional doctors, but also the expertise of non-conventional doctors I read and consult with, as well as my experience with my own body and psyche.
I don’t expect conventional doctors to agree with the non-conventional doctors I read and consult with. But in order to weigh their advice against the other considerations mentioned above and to make informed decisions about my own body, I need conventional doctors who provide me, not only recommendations, but clear and complete explanations of the facts and rationales that underlie those recommendations.
The Boston doctors I met with yesterday were fully on-board with the prevailing standard-of-care conventions. Their second opinions all seconded the first opinions of my Georgia doctors.
The big difference was that the Boston doctors thoroughly explained those opinions and clearly answered my questions, while my Georgia doctors often omitted to offer such explanations and proved unable articulate such clear answers.
Two Boston doctors walked me through how to read an MRI scan to fully understand what has happening in my brain. None of my Georgia doctors bothered to do that.
The Boston oncologist thoroughly explained how an enzyme inhibitor like osimertinib works, and her explanation was a major factor in me deciding to go ahead and try taking the drug. Yet, no matter how I worded my questions about it to my Georgia oncologist, I could not get even a basic explanation of what it does beyond such vague statements as “it targets a genetic mutation.”
The Boston oncologist is taking over my cancer care, albeit only for a few weeks. I had already decided against fully relocating to the Boston area. But, I thought maybe my family and I could keep living in the Atlanta area, and I could “commute” to Boston for check-ups and treatments every couple months or so. But the good doctor cautioned against that as logistically imprudent. Instead, she is going to refer me to a medical team at Emory University Hospital in Atlanta, which she highly recommends as a top cancer care center. I hope and pray that the Emory doctors will be as clear and thorough in explaining things to patients as the doctors at Dana-Farber Cancer Institute and Brigham and Women’s Hospital were yesterday.
Patients should take charge of their own health and well-being, making informed decisions about their own bodies and lives. Doctors should not usurp that responsibility, but should instead facilitate that agency by being, not just medicators, but educators.
The word “doctor,” after all, is derived from the Latin verb “docere,” meaning “to teach.”
If you would like to help me and my family cover the costs of my cancer treatment, you can make a donation to this GiveSendGo campaign. I am deeply grateful for the support.
So glad the Boston doctors were helpful and that you feel positive about the path forward (though I was privately hoping you would relocate here to Boston for treatment!)