Healthcare is a highly technical field. Patients are vulnerable to experts because they’re unequipped to evaluate healthcare for themselves. They must rely on experts for information. This is the information asymmetry problem in healthcare.
The reason it's a problem is that all the players in healthcare - academia, industry, and practitioners - from surgeons to energy healers - all carry a similar bias. They all need to show you that their product will help you. That their product is safer and better than it really is.
Essentially, patient are talked into more healthcare by the experts. From bloodletting, to lobotomies, to 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. 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 critical 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 not only supported by the AMA, but written into their 1847 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. A survey of physicians published in JAMA from 1953 revealed that 69% of respondents would not inform their patients of a cancer diagnosis. Doctor essentially had a free reign in what they could do to you, and the products they could sell. There was no malpractice, and there was no reguluation.
The reason doctors got away with this was because the field of medicine lacked true scientific rigor. The evidence doctors used to justify their practices was subjective: either anecdotes or their own theory of how the body works. In other words, you just had to trust "the expert". (We now refer to this as, "Eminence-based medicine"). There was no objective evidence, and no way of proving them wrong.
The age of Patient Autonomy
However, the 20th century yielded several paradigm shifting advances: scientific, social, legislative, and political. That all produced our current age, the age of Patient Autonomy.
yielded earlier diagnosis, treatments that actually worked, and other incidents, such as the infamous Tuskegee experiments, that brought us new perspectives on human rights. And evidenced based medicine.
This ushered in the age of Patient autonomy - the right to make medical decisions for oneself. Autonomy quickly became one of the four pillars of medical ethics. It's now unthinkable for a doctor to deceive a patient and not inform them of a cancer diagnosis. By drafting documents like a living wills or power of attorney, patients ask for autonomy even when incapacitated. It probably surprises you to hear that it’s all relatively new.
However, there was still a problem. Although patients had the right to information, they didn’t have the right to all the information, or accurate information. This wasn’t addressed until 1972 with the Supreme Court decision of Canterbury v. Spence. Washington Neurosurgeon William Spence operated on 19 year old Jerry Canterbury for a herniated disc. Mr Canterbury ended up with paralysis and incontinence. Dr Spence never informed Mr Canterbury of these potential complications.
Dr Spence lost the case, and set up the legal precedent of informed consent - before obtaining consent for a treatment, doctors are responsible for accurately informing patients of all the risks and benefits of a treatment. Now, patients not only have the right to make decisions, they have the right to make good decisions with good information.
Informed consent has major limitations. Legally, it is not required for medications, alternative medicine, or anything sold on the Internet. It is only required for invasive procedures. Yet, even with invasive procedures, informed consent does not appear to do what it claims to do. This was demonstrated in a recent survey of several hundred patients undergoing cardiac stents for chronically blocked arteries. Despite multiple large clinical showing a stent is of no benefit in this situation, 88% of the patients believed stents would prolong their life, and prevent heart attacks. The reason for this is that the informed consent process in quite nuanced. Doctors are still able to communicate the benefits of the procedure with anecdotes and non-verbal cues. Patients may not receive the sobering information due to wishful thinking and a desensitization to boilerplate-type disclosure forms.
Regulation
The age of misinformation and health gurus
To make things worse, Unfortunately, finding accurate information is very challenging. Health misinformation spreads faster and further than good information. Patients are frequently bombarded with speculative claims, such as hormones to keep them young, supplements to improve memory, and food that will cure disease. We have all recently witnessed several misinformation crises, known as "infodemics". Without the skills necessary to distinguish good information from bad information, patients are very vulnerable to this misinformation.
Critical Thinking and Patient Empowerment
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 aim is to empower you to make good medical decisions by leveling the information playing field between you and other health experts. This is accomplished by: making complex medical concepts understandable, providing good information (clear, accurate, unbiased, and complete), and teaching you how to distinguish good evidence from bad evidence.
With patients vulnerabilities and the of the prevalence of bad information, I consider empowering patients one of the most important goals of my practice. This is accomplished by creating an atmosphere of equality and openness, providing a source of good information, teaching how to detect bad information, and giving patients insight into their vulnerabilities to bad information. The Concierge Medicine model, with low patient volumes, is the optimal practice model for this rewarding yet time consuming process.
1. Atmosphere of equality and openness - Instead of doing things "to" my patients, I do doing things "with" my patients. My patients are equals, we are a team. They are encouraged to question everything, including my suggestions.
2. Source of good information - I try to level the information playing field between my patients and the experts. While most primary care doctors spend only twenty percent of a visit on patient education, in my practice this is reversed. I spend the majority of our time on education. To keep information unbiased, I have designed my practice to be free from conflict of interest. To read more about this, click here. What is good information? Good information is clear, accurate, unbiased, and complete information on a topic. Good information tries not to exaggerate the likelihood of benefit, or minimize the likelihood of harm. It is not afraid to be critical. It presents all points of view, discloses limitations of current knowledge, and puts the evidence into context. Only with good information can patients be empowered to make good medical decisions.
3. How to detect bad information - Learning to evaluate evidence objectively is very important. It requires the application of critical thinking where information is systematically broken down to review it objectively. To read more about critical thinking in medicine, click here.
4. Detect vulnerabilities to bad information - Critical thinking also teaches us that our brains are not perfect and we are prone to errors and biases.
Only with good information are you empowered to make good decisions for yourself.
Getting involved in your health is a good choice. You can incorporate your values and preferences into the decision. These personal choices include: quality of life versus quantity of life, aggressive screening tests versus minimalistic screening tests, use of experimental treatments vs use of only established treatments, etc. Incorporating these personal choices into your decisions, will help you attain the outcomes best for you.
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