Not too many decades ago, in the history of medicine, healthcare providers were culled from the ranks of the clergy. These practitioners, often with marginal healing skills, were viewed as having a sacred body of secret knowledge that was not available to the vast majority of the population. The word and recommendations of the provider were almost never challenged, and patients accepted, sometimes blindly, their recommendations.
Let us forward the tape to sometime in the 1970s and 1980s. We became ill, we typically sought the guidance of a benevolent family practitioner who almost always was a white male. We followed his advice, there was very little discussion about options, and patient and doctor had faith in the system. We would be viewed as being foolish if we did not follow the doctor’s recommendations. After all, the doctor had the training and the knowledge, and we patients did not have access to these data.
From a cancer standpoint at that time in history there was an emergence of interest in alternative therapies in my field of cancer, notably laetrile and vitamin C. Despite compelling evidence from prospective randomized trials that these potions were not effective, there continued to be an underground support of these programs—often to the detriment of the patient.
But now we are in a very different environment.
Enter the Empowered Patient
Let us suppose that we were in a graduate program and an upcoming examination would assess our skills in algebra. We studied, we did our homework, and we took sample examinations and were fully prepared to pass the test. We log onto the computer, username and password, and then to our horror the test was not for algebra but for calculus. We became flustered, unhinged, and our straightforward world quickly disintegrated.
We doctors are now dealing with a similar situation in medicine as the doctor-patient relationships are changing, and this is reflected in a clumsy word, democratization, which is defined as the action of making something accessible to everyone as in the democratization of information through technology.
A classic example was the plethora of confusion and misinformation about COVID, its origins and its management. Because of search engines and now artificial intelligence, everyone with a mouse can become an expert on everything. Mr. Google is our second opinion. The playing field has been leveled.
But hold on, not so fast. It really is not level.
Medicine has now merged in some circumstances into a sparring battle where patients access information and recommendations and have already made up their minds about a course of treatment. Data are then teased out by the patient and the family, and selected opinions are obtained to support that decision. This is called tunneling or cognitive bias.
Here is the thinking: “I as the patient will listen to you as the provider, but since I have the information that you have, I know what is best for me.” I can vividly recall a number of clinical scenarios where I was addressing the management of a complex cancer situation with a gravely ill patient, and the adult children of the patient were furiously typing the information into Google. In the exam room.
Is Medicine Now a Team Sport?
Let's consider this real-life scenario: An acquaintance of mine had a PhD in a very narrow area of research. Because of lack of exercise and an alarming increase in weight gain, he required a new hip (well, two, but one at a time).
As expected, he did an extensive review of the literature and determined that the anterior approach where the new hip mechanism is inserted through the front of the leg is statistically better (faster recovery, and fewer complications for example) than the more traditional surgery where the hip is inserted from the side. He interviewed a number of surgeons, and if they did not agree with his philosophy, he sought out surgeons who would agree with them, even if those surgeons were not comfortable with that anterior approach.
Another typical example. A gentleman in his sixties was spiraling through Alzheimer’s disease. His memory was impaired, his judgment was faulty, he was not capable of rationally processing information.
He tragically fell, fractured his hip, and surgery was performed and that went smoothly. From their literature search the family understood the importance of physical therapy so he could regain mobility, but the wife and adult children became angry and frustrated at the healthcare team, especially with the physical therapist, because of the patient’s lack of progress on that front.
What the family did not understand was that the patient was not capable of following even simple instructions so the physical therapy (PT) was ineffective. The patient never walked again. Not because of the failure of the PT program but because the patient did not have the cognitive bandwidth to process the exercises. Who had tunnel vision here?
Most patients are reasonably proactive, preemptive, and totally engaged in the decision-making process, and of course that is the American way. I encourage patients to be empowered. However, there are myriad subtleties and nuances of medicine and surgery that may not always be obvious to the patient and family caregivers. Is medicine a team sport? Yes and no.
So we have a conundrum, and when we need care or surgery, when our illness is complex and when management is controversial, how do we sort through this potential wilderness of confusion?
How to Work with Your Doctor
Here is a potential road map:
Access literature for patients from reputable organizations and reputable institutions. Beware of offbeat websites. Visit sites run by major medical centers such as Mayo Clinic www.MayoClinic.com or MD Anderson Cancer Center at https://www.mdanderson.org/ or by consumer health advocacy groups (American Lung Association at https://www.lung.org/ or American Cancer Society at https://www.cancer.org/) or government entities like these: https://health.gov/myhealthfinder or National Library of Medicine at https://www.nlm.nih.gov/.
Stay away from diatribes on Facebook from disgruntled patients. Your heart disease or your cancer or your autoimmune condition may not be like theirs.
If the pitch is trying to sell you something like a miracle cure, best keep your hand on your wallet and leave. The cure for cancer or diabetes or disease X is not on the internet.
Understand the pros, the cons, the risks and the benefits of management of your condition. If a cure sounds too good to be true, it probably is too good to be true.
Be thoughtful and respectful. The confrontational encounter in the physician’s exam room is of little value to the patient, the family, and the provider. We are in this together—for your health.
Develop trust. You as a consumer may have an area of expertise in project management or small business or engineering or financial planning, but that expertise is almost never translatable into a complex issue such as surgery, cancer management, or end-of-life care. At some point, trust the medical professional, just as your clients and colleagues trust your expertise in your chosen area.
I discuss much more about how to become an empowered patient and work with your doctor in my book How Not to Be My Patient. You do need to be an active participant in your care, and I show you how, especially if you have a frightening diagnosis.
Image from Shutterstock.