Healthcare is a highly technical field. Patients are unequipped to evaluate healthcare for themselves, and must rely on experts for information. This is the information asymmetry problem. This leaves patients vulnerable to the experts.
Unfortunately, the history of medicine is replete with experts giving bad information. Whether it's bloodletting, lobotomies, stem cells, or actual snake oil. As a result, the best approach to healthcare isn't about more healthcare, it’s about trying to empower patients to evaluate healthcare for themselves. However, as you will see, it’s been a long road to patient empowerment, and there is still a long way to go.
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. It was feared that the psychological impact of the diagnosis would affect patient compliance and outcome. This idea is reflected in the 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 can be seen well into the middle of the 20th century. In a survey of physicians from 1953, 69% of respondents would withhold a cancer diagnosis from their patients.
Society essentially gave doctors carte blanche to sell what they wanted, and do what they wanted. When operating, a surgeon determined what they wanted to do, without your consent, and without your understanding 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 they 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 to prove 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, however, 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. This 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. It was highly accurate because the control group eliminated the possibility of being misled by placebo effects and confounding.
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. 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. There are 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 science's competitive nature. 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. 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, such as infant formulas containing opioids or cocaine. 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. Excluding patients from crucial decisions would now be considered "unethical," and by the mid-20th century, patient autonomy—the right to make one's own medical decisions—became one of the four pillars of bioethics.
This broader movement of individualism actually 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, such as the infamous Tuskegee experiments and the Nazi medical experiments, brought particular attention to patient autonomy.
Legal precedent also began ruling in favor of more patient autonomy. In 1914, a surgeon lost a judgement for failing to get a patient's consent for surgery. By 1972, 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 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
The essential message of informed consent. is that patient require good information to make good decisions. As such, the greatest modern threat to patient autonomy is misinformation. Unfortunately, as it stands, outside of surgery, informed consent isn't legally required, nor is it enforced.
Even for surgeries 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 the 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 is mostly achieved making weak evidence look strong, avoiding regulation and peer review wherever possible, and claiming persecution when opponents disagree. This is what generates misinformation.
However, misinformation, as you are probably aware, is not just a problem in healthcare; it has permeated all fields. We are living in an age of misinformation, where misinformation spreads faster and further than good information. We have all witnessed recent misinformation crises, or "infodemics". The cause of this are complex and likely due to sociopolitical forces and changes in how we consume media.
Critical Thinking and Patient Empowerment
We transitioned from an age of medical paternalism to an age of medical misinformation. In many ways patients as bad off and disempowered at ever. This is why teaching patients Critical Thinking is crucial in modern medical practice. In my practice, the extra time afforded by the Concierge Medicine model allows me to design my practice to fulfill these goals. The four following features ensure patient empowerment:
Emphasis on education - It's been estimated that just 20% of a doctor's visit is dedicated to patient education. In my practice, this is turned around. I prioritize most of our time together to be spent on education, with the goal of providing you with only good information. 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 prior success rates. To read more, click here.
Shared decision-making - Some decisions in healthcare are black and white. These are the minority. For everything else patients need to get more involved in decision-making. A process that incorporates your values, preferences, and circumstances. It is an open and collaborative process where you're encouraged to question everything. We work as a team and I treat my patients as equals. To read more, click here.
Addressing bias - Bias is the major source of misinformation in healthcare, and addressing it is paramount. Within my practice, I have eliminated all sources on conflict of interest, financial and non-financial. Outside my practice, my aim is to help you evaluate bias in others, particularly specialists, experts, and the media. To read more, click here.
Only with good information are you empowered to make good medical decisions.
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