Freedom is a topic more complex than most realize; certainly more than I had realized. In the sense of freedom of choice, more freedom does not necessarily mean one will be happier (see work by Barry Schwartz), nor does it mean that one will necessarily make the best decision (Bounded Rationality by Herbert Simon). However that is the topic of another post. Here I write my thoughts on the specific topic of health freedom.
On one extreme of health freedom is the days of the snake oil, where anything can be sold to anyone with any health claim, a full “buyer beware” system. On the other extreme is an authoritative mandate that all must prescribe to an official course, scientific or otherwise, where one cannot decide on one’s own fate, even life or death. Clearly neither are reasonable options.
In the US the situation is somewhere in between, with drugs and supplements regulated to a certain degree. The National Center for Complementary and Alternative Medicine (NCCAM) is responsible for investigating complementary and alternative medicine scientifically, and this blog post shows how I feel about it.
Not too long ago, before widespread use of the internet, mainstream healthcare consisted of two words – “Doctor’s Orders”. The MD was the expert, the professional, the authority. Not many people were informed, and far fewer people misinformed. A good old fashioned PDR was all that was needed.
The information revolution that came with the internet changed the entire landscape. All of a sudden information is at your fingertips (whether one can properly make sense of it or not is a different story). Unfortunately the driving force of the internet, the search engines, are designed such that search results are ranked based on popularity; accuracy plays no role in the ranking. A vicious circle forms – medically accurate sites are unpopular because few understand the language, and the interfaces apparently have been designed by sadistic dysfunctional underpaid trolls on drugs, while quackery sites rise quickly by virtue of being written in plain English, sleek, well-designed, and have no shortage of salient material including false promises, unsupported claims, logical fallacies, plenty of anecdotes and “user testimonials”.
Suddenly to the physician, faced with a barrage of semi-informed inquiries, dubious questions, and the occasional legitimate inquiry of the latest e-pub clinical study that he didn’t even know about, that PDR seems about as useful as an outdated Yellow Pages, and the CME seems woefully inadequate.
Nowadays it is far more common for the physician to present options for treatment and defer the actual decision to the patient. When done properly this is a reasonable approach, however it is time consuming and often impractical. More often than not it is a way to shift the responsibility and provide an easy out for the physician. Options are not equally valid simply because they are presented side-by-side, and although the physician is professionally obligated and morally bound to present the best objective expert opinion, sometimes it is not practical to present the options adequately for the often under-educated consumer to make an informed choice.
The bottom line is, although truly horrible decisions can be made with real harm and danger, I feel that a mentally competent adult should be able to make any choice regarding his/her own health, regardless of intent, up to extreme decisions such as suicide. What I also feel is that one should NOT be free to impose his/her choice upon another person, regardless of intent, through action or inaction.
For example, one should be free to choose if, when, and how to die, be able to refuse treatment of any kind, and pursue whatever medical experiments on himself. However one should not be free to impose this on anyone else, for example, people under his care, children, elderly, etc. Parents should not be given free rein to decide whether their kid should get a qi manipulation instead of emergency surgery, or to replace life-saving medication with homeopathic concoctions; that is what I consider child endangerment. It should be considered reckless endangerment when people with HIV knowingly have unprotected sex (inaction), even if one believes that he is cured of it through whatever modality. Unless a subsequent test shows that one is HIV negative and no longer a risk.
This is my stance on health care, on religion, and on life. One should be free to choose to believe in whatever they wish, be it scientific methodology, religion, magic, conspiracy, fairy tales, ideology, whatever. One should be free to act upon those beliefs, as long as the effect is confined to himself or to consenting and informed participants. One should be able to believe in any monotheistic or polytheistic god, but should not be able to blow up those who do not subscribe to the same view.
It would be easy to make a straw man argument that I should, by extension, oppose all regulation and advocate an anything-goes, buyer-beware snake oil system, which is not the case. I am simply stating that people should be free to do whatever they wish when it comes to their own body, informed or not.
An informed decision is only as good as the information it is based on, and the process to come to that decision. The information is only as good as the trustworthiness of its source, since few of us are directly involved in raw data. The human mind has evolved not to think scientifically, and that is why opinions, reviews, and anecdotes influence our decision-making process more than it should. Emotions aside, the reality is that it is difficult if not impossible to make an optimal decision on complex matters anyway, since we are limited by the information available, the cognitive limitations of our minds, and the amount of time to make a decision considering the cost of gathering and processing information.
I personally subscribe to the cautionary principle of “do no harm”, keeping in mind that inaction may be a better option than action considering the potential harm. I consider evidence based on scientific merit only, and whenever possible I read and try to evaluate the methodology and quality of the underlying studies. I try not to be influenced by anecdotes, testimonials, and personal biases, however that is self-delusional to a degree. I will get a typhoid fever shot to protect myself if I know I will be served by Typhoid Mary, since it is quite clear to me that typhoid fever is caused by bacteria rather than “excessive heat/wind” or “imbalanced energy”. To those that do not, hey, it’s a free country. I promise not to judge, unless it presents a clear and present danger to others.