Healthcare is a highly technical field. Patients are vulnerable to experts because they’re unequipped to evaluate healthcare claims for themselves. They must rely on experts for information. This is the information asymmetry problem.
Unfortunately, the history of medicine is replete with experts selling bad medicine.
Whether it's bloodletting, lobotomies, or stem cells. Therefore, the modern approach to healthcare isn't about more healthcare, it’s about trying to empower patients to evaluate claims for themselves; for patients to be active participants in their healthcare decisions. However, as you will see, it’s been a long road to patient empowerment.
The age of Medical Paternalism
Prior to the twentieth century, patients were completely excluded from healthcare decisions. Doctors saw patients as weak, debilitated, childlike victims, lacking expertise in medicine, and incapable of making good decisions. This "doctor knows best" mindset is known as medical paternalism. It dates back at least two thousand years in the Western tradition, and can be found in the writings of Hippocrates. The following excerpt is from On Decorum,
"Do everything in a calm and orderly manner, concealing most things from the patient while treating him. Give what encouragement is required cheerfully and calmly, diverting his attention from his own circumstances...revealing nothing of his future or present condition."
Diseases with a bad prognosis, such as cancer, were almost always withheld from patients. The psychological impact of the diagnosis was feared to affect patient compliance and outcome. This practice was written into their 1847 AMA code of ethics,
"The life of a sick person can be shortened not only by the acts, but also by the words or manner of a physician. It is, therefore, a sacred duty to avoid all things which have a tendency to discourage the patient and to depress his spirits."
This attitude remained prevalent well into the middle of the 20th century. In a survey of physicians from 1953, 69% of respondents would withhold a cancer diagnosis.
Society essentially gave doctors carte blanche to sell what they wanted, and do what they wanted. A surgeon could operate without advising you of the potential complications. There was no malpractice, no regulation, and no accountability.
The reason doctors could get away with this was that the field of medicine lacked true scientific rigor. The evidence doctors used to justify their treatments was subjective: either personal anecdotes or their pet theory of how the body works. Without objective evidence, there was no way of proving them wrong. In other words, you just had to trust "the expert". It was an "eminence" based medicine.
The birth of Objective Evidence
The 20th century witnessed the birth of objective evidence. This made it possible to evaluate whether a medical claim was actually true. No longer was it necessary to take an experts word for it. Doctors were now made accountable for their claims. The subsequent list outlines these changes:
Randomized controlled trial (RCT) - This kind of evidence was developed in the 1940's. It was truly objective because large groups of experimenters witnessed real outcomes in large groups of patients. And it was very accurate because the control group ruled out being fooled by confounding and placebo effects.
Hierarchy of evidence - The older kinds of evidence (anecdotes, pet theories, and expert opinion) mostly failed when tested in an RCT. This established a hierarchy of evidence. Objectively, some evidence was better than others.
Sharing evidence - Medical science has always been a competitive endeavor. To get credit, one must publish. Journals sprang up in the thousands, and access to evidence became democratized. Currently, databases like the National Library of Medicine (PubMed.gov) give access to all 35 million papers published since 1965. This leaves no secrets in healthcare.
Peer review - Both sharing of evidence and a hierarchy of evidence, allowed doctors to objectively evaluate each other's claims. Journals developed a peer review system, and doctors began organizing peer review societies (like the American College of Cardiology) to help advocate on behalf of patients. Peer review was successful because of the competitive nature of science. Who better to police doctors than other competing doctors?
Legislation of medical practice - With an ability to objectively evaluate claims, it was possible to establish objective standards of how doctors should practice medicine. State medical boards, licensing, and malpractice lawyers began to hold doctors to these standards. Patients were now protected from doctors practicing bad medicine, or practicing medicine without qualification.
Regulation of drugs - Many dangerous medicines were being sold over-the-counter; this included the infamous patent medicines containing opioids and cocaine for infants. To protect patients, the Pure Food and Drug Act of 1906 began regulating food and drugs, and eventually morphed into the FDA.
The age of Patient Autonomy
The development of objective standards of practice, and holding doctors accountable for their actions, forever changed the dynamics between doctor and patient. Keeping patients out of critical decisions would now become "unethical", and by the mid 20th century, patient autonomy - the right to make medical decision for oneself - became one of the four pillars of bioethics.
This general movement began with the Enlightenment and flourishing with the human rights movements of the 20th century. Society as a whole was progressively embracing the fundamental concepts of individual rights, freedom, and self-determination. High profile cases of human rights abuse in medicine brought particular attention to patient autonomy, like the infamous Tuskegee experiments, and the Nazi medical experiments which led to the Nuremberg code of 1947.
Legal precedent also began ruling in favor for more patient autonomy. In a 1914 case, a surgeon lost a judgement for failing to get a patient's consent for surgery. In a 1972 case, a surgeon lost a supreme court judgement for failing to give a patient informed consent. He got consent for the surgery, but failed to inform the patient of the all the risks involved. In other words, patients were not only entitled to determine what happens with their bodies, they were entitled to know all the pros and cons of a treatment. They were entitled to good information.
Misinformation: The greatest threat to Patient Autonomy
Informed consent reminds us that in order for patients to make good decisions they need good information. Therefore, the greatest threat to patient autonomy is misinformation. Unfortunately, for most things in healthcare, informed consent isn't legally required, nor is it enforced. For instance, it's not required for: medications, alternative medicine, or anything sold on the Internet. Even for surgeries, where informed consent is required, misinformation slips in. Doctors easily persuade patients with anecdotes and non-verbal cues, and patients don't read the fine print. Case in point, in a survey of several hundred patients undergoing cardiac stents for chronically blocked arteries, 88% believed stents would prolong their life, despite multiple large trials showing no benefit in that scenario.
Why is there misinformation in healthcare? The greatest source of misinformation is bias, both financial and non-financial. All players involved in healthcare - from academia to industry, from surgeons to energy healers - are incentivized to show you that they know WHY you are ill, or that they have the product to help you. However, as miracles in medicine are rare events, this can only be accomplished by using weak evidence, cherry-picking evidence, avoiding regulation and peer review wherever possible, and claiming persecution when opponents disagree. This is what generates misinformation.
However, misinformation, as you know, is not a problem restricted to healthcare; it has permeated all fields. We are living in an age of misinformation. Now, misinformation spreads faster and further than good information, and we have all witnessed several recent misinformation crises, or "infodemics". The causes of this are complex and likely due to sociopolitical forces and changes in how we consume media. Regardless, we're left with a big dilemma: despite more misinformation than ever, we also live in an age that highly values patient autonomy.
Critical Thinking and Patient Empowerment
This is why Critical Thinking, Concierge Medicine, and Patient Empowerment all go hand-in-hand. Critical Thinking teaches patients to question and evaluate medical claims for themselves, and the Concierge Medicine model, with its low patient volume, allows me to specifically engineer my practice for this purpose. The following are my practice's four key features to help teach my patients Critical Thinking in medicine:
Emphasis on education - It's been estimated that just twenty percent of a doctor's visit is dedicated to patient education. In my practice, this is turned around; I prioritize most of our time together on education. My goal is to provide you with good information. Information that is: clear, understandable, accurate, relevant, unbiased, and complete.
Evaluating medical claims - Although healthcare is highly complex it is possible to learn how to evaluate claims for yourself. The key is to take a systematic approach and factor in our success rates. To read more, click here.
Shared decision-making - Some decisions in healthcare are black and white. These are the minority. For everytinng else, patients need to get involved with the decision-making process. Incorporating your values, preferences, and circumstances into the decision ultimately leads to better choices. The process is collaborative and free. I encourage my patients to question everything. We are a team and I treat my patients as equals. To read more, click here.
Addressing bias - Since bias is the major source of misinformation in healthcare, addressing it is paramount. Within my practice, I have eliminated all sources on conflict of interest, financial and non-financial. Outside my practice, I help you evaluate sources of bias in others, particularly specialists. To read more, click here.
Only with good information are you empowered to make good medical decisions.
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