Mind Experiment for Doctors
People with Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH) have a difficult time obtaining appropriate medical care and are often subject to rude treatment by doctors and medical workers. Aside for a few advanced medical centers with specialized autonomic dysfunction clinics (Johns Hopkins, Mayo Clinic, Vanderbilt University, Medical College of Ohio), the medical community does not seem to want to take the time to understand the phenomena of chronic orthostatic intolerance. Here is a quick mind experiment that can help physicians appreciate the problems patients with dysautonomia disorders face every day.
The physician should imagine the following scenario personally for themselves, their spouses, and for their own children. The physician and/or family member does not eat or drink anything for 24 hours straight, a complete food and water fast. Next the subject goes to the local Red Cross and donates a full pint of blood. Then, using all available will power, the subject pushes himself home and turns up the thermostat to 100 degrees Fahrenheit. Finally, the subject attempts to stand motionless for a period of one hour straight.
What would happen to you physiologically in the situation described above? First you would experience severe flu like symptoms, muscle aches, fever, chills, sweating, and headache. You would become lightheaded, dizzy, develop a rapid heart rate, chest and heart pain, and almost certainly pass out, possibly injuring yourself seriously. The unnatural vasodilation and abnormally low blood volume many patients with POTS and NMH suffer from can produce the same basic symptoms, caused by orthostatic stress, as the above scenario. It is interesting to note that is some cases the blood volume of POTS and/or NMH patients may be more than 30% below normal.
There are millions of humans world wide who experience orthostatic stress, the stress of standing up or even sitting up, every single day of their lives. Imagine being inflicted with this horrible condition and going to your local physician seeking help. Now imagine that instead of getting help and understanding your doctor blames you for your own severe symptoms and harshly interrogates you as if you were a common criminal.
As author of this Web site, I have received over 1,800 letters (as of February, 2002) from patients all over the world. Many patients tell me horror stories of how shockingly badly they are treated by physicians. Medical school professors, physicians, and several hundred registered nurses with POTS and/or NMH have also written me. Even many of these medical professionals report being treated badly by members of their own profession while trying to obtain a diagnosis for their illness.
After reading hundreds of heartbreaking letters from men, women, and even young children who were traumatized by ignorant doctors, it is clear that current medical treatment for orthostatic intolerance disorders often represents a criminal abuse of patients. Blaming the patient for their symptoms is not good science, and is the lowest expression of inhumanity in our high speed, profit driven medical profession. In past years the same moral crimes were committed against people with MS, diabetes, polio, and those with other poorly understood illnesses of the day. The gradual but positive trend is that more patients in major population centers are being diagnosed quickly and treated with the dignity and respect they deserve.
It is essential that all physicians become educated in how to diagnose and treat orthostatic intolerance syndromes rather than continue to abuse their patients out of ignorance and arrogance. An obvious example of this problem is one nationally known radio doctor who has become so ego inflated that he has advertised his radio talk show by declaring that he was "never wrong." How can a God be wrong? The medical community must establish accountability in the system so that disciplinary action can be taken against abusive doctors, including fines and/or revocation of their licenses to practice medicine. Currently, physicians are treated as royalty, with no controls on their behavior and no boss or governing body to keep their egos in check. Power corrupts, and unlike our politicians, our police, and our school teachers, physicians are accountable to no one, thus patients continue to suffer abuse.
One possible way to bring doctors down from Mount Olympus is to have every state develop lay (non-doctor) citizens' review boards to mediate disputes between patients and doctors. Just as police departments cannot be expected to objectively investigate themselves, doctors cannot reliably monitor the behavior of other doctors. The knee jerk reaction is to circle the wagons and stick up for fellow professionals, patients be damned. The medical profession is currently without effective codes of conduct and patients' rights are routinely abused. Civilian review boards would have sympathies for both overworked doctors and abused patents, and could easily throw out frivolous and erroneous complaints, while correcting serious issues of professional accountability at a much lower societal cost than filing expensive lawsuits to resolve issues of simple conduct.
The HMO insurance system has made doctor-patent relations very difficult in the United States. Primary care physicians are forced to see too many patients in a day to maintain a relaxed frame of mind, which is essential for good judgment. Recent studies show that up to 98,000 Americans die each year from medical mistakes, and stressed-out doctors undoubtedly make more mistakes than happier, well rested MDs. HMOs should greatly increase fees paid to primary care physicians so that they are not overworked, angry, and more apt to abuse patients and make medical blunders which can cost lives. It is a false savings to provide bad medicine on the cheap when lives are at stake, as well as the dignity of both doctor and patient.
Christopher Calder