Manufacturing Consent

There are a few things I could talk about regarding the previous post, but it turns out from the comments that the subject I had planned on discussing is exactly the right one. Indeed, the basic facts of the story are, apparently, sufficiently contrary to expectations that some people misread them. So here is a clear statement of the story.

The doctors did not tell me that they thought I might have acute appendicitis. They told me that I did have acute appendicitis, and that they were going to perform an appendectomy. That's a very common operation, I already knew plenty of people who had had it, and I expected to be in the hospital for two days and then back to my usual continual round of parties and entertainments, which is what they told me to expect. I signed a consent form which had general language about surgery. While it is true that if you read it literally, it basically gave them permission to do anything at all, including a lobotomy or a heart-lung transplant, I understood that I was signing it in order to consent to an appendectomy.

The discovery of the unexpected mass on the cecum, the decision to perform the hemicolectomy, the pathological examination of the excised tissue, the anastomosis (reconnection of the remaining intestinal tract) occurred while I was unconscious -- a state in which I remained for 7 hours. I only learned about these events after the fact.

So, what would truly informed consent have consisted of in this situation? They would have had to tell me that the condition most likely to produce the clinical signs they had observed was acute appendicitis. However, there are various conditions that can produce these symptoms, some more serious, others not. These included colon cancer, and right-sided diverticulitis. Most likely I would have a simple operation and be home soon, but conceivably I would have a more difficult course. Since they did not say that, it is literally the case that they lied to me.

Until the mid 20th Century, the generally accepted relationship between physicians and patients in the West was of a nature now characterized as "benevolent paternalism." The expertise and wisdom to choose the appropriate treatment of disease resided entirely with the physician. The patient's role was to trust the physician and to follow "doctor's orders" --a condition analogous to childish dependency.

Patients ordinarily could be said to have consented to treatment, if only because, as a practical matter, they had to physically submit to the surgeon's knife or swallow the doctor's potions. However, there was no expectation that the patient would be specifically informed about the physician's theory of the patient's disease state, the theoretical basis of the proposed remedy, possible adverse effects, or alternative treatments.

This paradigm came into serious question after 1950, in connection with broad changes in social attitudes about hierarchy and personal autonomy, and the growing technical complexity of medicine, which, along with more effective treatments, brought increasing uncertainty and tradeoffs among risks and benefits.

Today, we all more or less implicitly believe in a model of medical decision making in which physicians and patients are partners. While physicians possess expertise about diseases and treatments, the patient is the expert on his or her own tolerance for pain and inconvenience, fear of disability or death, and other subjective factors essential to determining the consequences of a treatment choice for the patient's well-being. Doctors are supposed to tell us our diagnosis and prognosis, the risks and benefits of treatments, alternatives, and no treatment, tell us the truth, and invite and answer our questions.

But we all know that they don't. Psychiatrists have reported that they do not routinely disclose the side effects of neuroleptic (i.e., antipsychotic) medications to their patients. Most emergency department patients in one setting were found not to know that they had the right to make treatment decisions. Audiotapes of routine office visits have revealed that patients were rarely informed of the risks and benefits of proposed procedures. Many cancer patients who had undergone chemotherapy were found not to recall the nature of the procedure or the risks involved. Recently, it has been reported that the basic elements of informed decision making, even using the least stringent criteria, are absent from the majority of clinical decisions in a set of tape recorded general medical visits.

So why is this?