An important goal of modern medicine is to empower patients. This means giving you greater control over the decisions and actions affecting your health. Your empowerment comes from two rights: your right to make decisions (autonomy), and your right make good decisions (with good information). Let me expand on these two key elements of patient empowerment.
Your right to make decisions (autonomy)
Prior to the twentieth century, patients were often excluded by their doctors from involvement in 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 from ancient Greece. 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 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 code of ethics in 1847,
"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 in JAMA from Philadelphia in 1953 revealed that 69% of respondents would not inform their patients of a cancer diagnosis. I suppose, in an age where the majority of treatments relied on the placebo effect, this was acceptable .
However, the 20th century yielded earlier diagnosis, treatments that actually worked, and new perspectives on human rights. Patient autonomy - the right to make medical decisions for yourself - became a important medical ethical issue in the twentieth century. It was born out of several tragic incidents including the infamous Tuskegee experiments.
It is now unthinkable for a doctor to deceive a patient and not inform them they have cancer. Patients want to get involved with their healthcare. In fact, patients will even protect their autonomy when incapacitated with a living will or power of attorney. 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.
Your right to make good decisions (with good information)
Once a patient has autonomy to make decisions, they need to be armed with good information to make good decisions. 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.
Patients are vulnerable to bad information
There is a lot of bad information out there, and patients are vulnerable to bad information. There are two reasons for this:
1. Patients are vulnerable to information that offers solutions. Many patients are suffering and desperate for treatments, or healthy and desperate to live better. They want answers to why they are sick, and treatments that work. Wishful thinking disables their critical thinking, and lowers their threshold for evidence. They want to believe. This makes them vulnerable to bad information, especially bad information that claims to answer questions, and promise solutions.
2. Patients are reliant on experts. There is an information asymmetry in healthcare. Experts know more than patients, leaving patients vulnerable to the whims of experts. Unfortunately, experts are not incentivized to give good information; instead, they are incentivized to provide solutions. Experts with solutions can achieve fame and fortune - they are rewarded financially, academically, and socially. (To learn more about incentives in medicine, click here.) Experts are also intellectually bound to their specialty. Whether it is an acupuncturist or a neurosurgeon, they naturally view their specialty, and the tools of their specialty, positively. (To learn more about specialty bias, click here.)
The Internet amplifies vulnerabilities
The information age has certainly provided patients with the opportunity to be informed and empowered. It gives us unprecedented access to medical information. With resources like Pubmed, we can view the abstracts of every medical article ever written since 1960, within seconds, for free.
These freedoms, however, come with a price. Patients are still vulnerable to information that offers solutions, and reliant on biased experts for information; but now, instead of a few biased experts with a few solutions, the Internet can offer thousands of biased experts with thousands of solutions. If a patient is looking for solutions to their medical problems, they will definitely find them on the Internet.
The Internet provides a voice for every expert, and every solution ever dreamt up. Even the extreme opinions. In fact, extreme opinions not only thrive on the Internet, but are rewarded, by Internet algorithms. Misinformation spreads faster than good information. It is increasingly more difficult to tell good information from bad information, and good advice from good marketing. Patients searching the web can be easily radicalized.
Informed consent and your right to good medical decisions
The legal concept of "informed consent" was born to protect patients' right to good medical decisions. The Canterbury vs Spence trial in the mid-twentieth century set the precedent in the US. Jerry Canterbury was 19 years old in 1958 when he developed back pain, and a herniated disk. His surgeon, Dr. William Spence, recommended back surgery, without mentioning the risk of paralysis. Mr Canterbury became paralyzed and incontinent after the surgery; he sued for malpractice and prevailed. The surgeon was found guilty of not informing the patient of the possible complications of the surgery. Now, patients not only have the right to make decisions, they have the right to make good decisions with good information. Before obtaining consent for a treatment, doctors are responsible for accurately informing patients of the risks and benefits of a treatment.
However, 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 in 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. Multiple large clinical trials have consistently shown, when the blockage is chronic, a stent is of no benefit. The majority of Cardiologists in the survey acknowledged this - stents would not prolong life, or prevent heart attacks. However, 88% of the patients in the survey believed stents would prolong their life, and prevent heart attacks. Patients had inflated expectations of benefits, lack of appreciation of harms, and a general lack of awareness of treatment alternatives - despite informed consent. 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.
Concierge Medicine and patient empowerment
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.
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.