I have practiced medicine for over 40 years. I have yet to find a physician without a chronic disease in question who is smarter than the person with that chronic disease. I have been impressed that a patient’s numeric insights and intuitions when they are ill surpass their skills when they were not ill. All a patient needs is information, in all its glory and messiness, to know if the information is worth anything to them when they face a medical decision. Patients, in my view, are the best information managers and evidence experts I have ever seen, and I know a bunch of evidence experts to draw upon for the comparison. My interpretation may be biased, but I have been doing shared consults with patients for twenty plus years and I have learned that patients are smart. Consider the following:
1. The man had been advised to have surgery. The man and his wife stared in stunned silence at the data on prostate cancer treatment outcomes with surgery. The study was described in detail including a description of the people who were studied. The wife finally spoke, “You mean to tell us you want my husband to have surgery when so few have been studied! You mean to tell us that not a single person of our cultural heritage has been tested in the study?” I responded and reminded, “I am not asking you to have surgery. We are going over information of potential benefit and harm that you must balance for your choice.” They were kind in response, refused to consider surgery or further discussion, and, instead, chose to enter a clinical study.
2. The patient had been advised to have a CT to screen for cancer. He exclaimed, “Let me get this straight. You are saying that out of nearly 55,000 people studied, there were only about 30-80 fewer deaths from lung cancer over nearly 5 years if a low dose computerized scan (LDCT) was done rather than a chest-x-ray?” I replied, ‘’Yes, that is correct. There were, remember, about 100 fewer patients dying of any cause if they received the LDCT rather than the chest-x-ray.
As you also know, alternatively, about 10 extra people getting the LDCT died or got a complication within 60 days of the exam due to the work-up of abnormal findings on the exam. That is your trade-off for having a LDCT; a potential small benefit in the future balanced by a potential small chance of dying or having a severe complication early due to a work-up”. He replied, “I am not a scientist, but these numbers represent miniscule differences. The study could be wrong. I am not willing to take the LDCT scan based on the data”.
Medical care has been described as a, “philosophy informed by science”. There is a subtle problem with this view, however. This comment suggests that evidence informs the philosophy of how medical care should be delivered. It may be, however, as others have suggested, that evidence might be produced in biased ways by the prevailing philosophy. If this is true, then we have to sit up straight and reconsider our philosophy of medical care.
So, here is what’s wrong with the present practice of medicine. The totalities of medical care delivery, the cost, the inequality, the profit margins for some and not others, the arguments, and political plotting are meted out by decisions made. Those who make decisions are those who define what the practice is. The problem with medical care is that physicians decide. This is philosophically dysfunctional. Physicians should not, and should never have, made decisions for their patients. For sure, in an acute situation, acute care experts must make decisions. But, there is no such thing as a physician chronic care decision expert. Only patients are experts. They are the only ones who can know if one option is worth more than another based on the absolute differences engendered by the comparisons and their preferences for said differences.
The patients above compared the options proposed to them and chose in contrast to their physicians’ decisions. These people embodied the appropriate philosophy that medical care is theirs to define. Their idea is the fix for medical care. If physicians followed these patients’ philosophy, physicians could be worthy of being the patient’s partner; if physicians do not, they are doomed to follow a problematic philosophic stance. Trying to fix medical care based on a philosophy that allows physicians to be the decision makers will be like trying to float a sinking battleship with bubble gum. It is impossible to overcome a poor philosophy of care with edicts, ruminations, and patchwork insurance fixes. It is time to rethink the goals of best medical care; patients will tell us what evidence is worthwhile and what their care is worth. It will never work the other way around.