UnHex: A Conversation on Medical Pessimism

Whenever you hear something said very confidently the first thing that should come to mind is: Wait a minute, is that true?

-Noam Chomsky, Distorted Morality

More than a decade ago an acquaintance, let’s call her HippieGirl, recommended I read a book called Spontaneous Healing by Andrew Weil. I took one look at the cover and judged it rubbish. My issue, which is clear in retrospect, was a confusion about the person recommending it. She was too enthusiastic about herbs, taking echinacea and ginseng for everything, Bob Marley, not showering, and she likely thought that her tattoo of a dream catcher really did something supernatural in her sleep. Weil’s book cover at the time had his face covered with a hippie style beard. I lumped these two people together in my head and didn’t come back to Spontaneous Healing until a physician at a Crohn’s and Colitis Foundation of America conference mentioned it [1]. Oh how I wish I would’ve listened to HippieGirl’s advice (at least about reading the book).

Spontaneous Healing covers a lot of ground and this is not a book review. What I’d like to expand on is a topic of the chapter called Medical Pessimism. Weil recounts two types of medical pessimism, thoughtless and intentional. I’d like to add a third: Institutional. But let’s back up and take a look at the conversation as Weil frames it. Coincidentally his examples include Ulcerative Colitis but the ideas apply in general.

It is difficult for me to write about the failings of my profession, but these failings have negative consequences for all of us. Simply put: too many doctors are deeply pessimistic about the possibility of people getting better, and they communicate their pessimism to patients and families… Finally, many of them [patients] have suffered physically, emotionally, or financially as a result of encounters with conventional medicine. Here are complaints I hear most commonly:

Doctors don’t take time to listen to you or answer your questions.

All they do is give you drugs; I don’t want to take more drugs.

They said there was nothing more they could do for me.

They told me it would only get worse.

They told me I would just have to live with it.

They said I’d be dead in six months.

The last four statements are particularly disturbing because they reflect deep pessimism about the human potential for healing. At its most extreme, this attitude constitutes a kind of medical “hexing” that I find unconscionable. Anthropologists and psychologists have studied medical hexing in shamanistic cultures, where, on occasion, a shaman or witch doctor will cause someone (usually at the behest of a person’s enemy), and the victim of the the curse then withdraws from society, friends, and family, stops eating, and weakens. The medical literature contains reports of chronic illness and death resulting from this process, with some speculation about physiological mechanisms that might account for it, such as derangement of the involuntary nervous system. So-called voodoo death is the ultimate example of a negative placebo response. Although it is easy to identify this hexing phenomenon in exotic cultures, we rarely perceive that something very similar goes on every day in our own culture, in hospitals, clinics, and doctors’ offices.

Spontaneous Healing was published in 1995. In terms of a patients’ belief in physicians, things haven’t changed. Things also haven’t changed with respect to the pessimism surrounding Crohn’s and Ulcerative Colitis. It’s eerily similar now to how things were 20+ years ago. I’ll illustrate with Weil’s words and an excerpt from a Facebook group:

Two years ago a man in his mid-thirties came to me for a second opinion about his illness. After several months of worsening episodes of diarrhea and abdominal pain, his family doctor referred him to a gastroenterologist, who diagnosed the problem as Ulcerative Colitis and started the patient on a standard suppressive drug but gave him no information about modifying his lifestyle. The man disliked the side effects of the drug and did not think it controlled the symptoms very well. He also suspected that his problem had something to do with stress. He complained about the drug treatment and persisted in questioning the gastroenterologist about other possible strategies, without success. “Do you know what the doctor said to me on my last visit? He said, ‘Listen, I’ve got nothing else to offer you, and, anyway, the chances are you’ll eventually develop colon cancer.’ 

Now contrast Weil’s accounts with a recent Facebook post in the Crohn’s and Ulcerative Colitis Support Group by a young woman with the initials BRS on November 6, 2013:

Ok guys. Hope all r doing well. I have a question. Went to see my new GI doctor today and pretty much the same concern as the nurse practitioner I was seeing before. Saying it is dangerous not being on any kind of meds with my ulcerative colitis because on down the road I am at higher risk of getting colon cancer. I have done so much better off meds than on them and I dont know what to do. Any advice. Thanks.

There’s another issue lingering in here regarding physicians’ use of the counterfactual to elicit prescription drug compliance but I’ll leave that for another time. And now Weil’s take on the truth behind Ulcerative Colitis and colon cancer:

People with Ulcerative Colitis are statistically more likely than others to get colon cancer, it is true, probably because chronic inflammation and destruction of the lining of the colon leads to increased cell division and with cell division comes increased risk of malignant transformation; but the probability of colon cancer in any individual with ulcerative colitis is low, especially if the disease is controlled and, as in this case, mild. Besides, even cases of not-so-mild Ulcerative Colitis can respond dramatically to changes in lifestyle and outlook. I remember a woman in her mid-forties who had suffered for years with a severe form of the disease, managed imperfectly with high doses of prednisone and other suppressive drugs, who was told that surgical removal of the entire colon was her only option. She went on a macrobiotic diet, and the disease promptly disappeared. Fifteen years later, when she consulted me about an unrelated problem, it had still not returned.

How did the gastroenterologist’s words of doom affect my patient? “I didn’t sleep for three nights,” he reported. “All I could think was, ‘I’m going to get cancer of the colon,’ and, frankly the idea still haunts me.” 

Weil’s second example of a hex is this:

When he did finally go to a urologist, the problem turned out to be prostate cancer that had already escaped the gland and gone to the bones of the pelvis, making for a poor prognosis. He went to a university hospital, where the only treatment offered him was female hormones to antagonize the growth of the tumor. The main impression I had of this man was of someone in the grip of fear… When I asked about the smoking, he said: “Three months ago, I was at university hospital, in the office of the chief urologist. He explained the hormone therapy to me and said that it was not worth doing any other treatment. I asked him, ‘Should I stop smoking?’ and he said, ‘At this point, why bother?’”

Were I to ask that urologist about his reply – assuming he even remembered making it – he would probably say that he was doing the patient a favor by sparing him further trouble. What the patient heard, however, was “You are going to die soon.” A high priest of technological medicine, enthroned in his temple, had uttered the equivalent of the shamanistic curse, for doctors in our culture are invested with the very same power others project onto shamans and priests. Those words were the source of the patient’s terror, a terror that paralyzed him and prevented him from making constructive efforts for his own survival and well-being…

There is a difference worth noting between the hex in this case and in the previous one…the urologist revealed his pessimism in an unthinking way, without any intent to upset the patient. The gastroenterologist who predicted colon cancer for the man with early Ulcerative Colitis may have been annoyed by a patient who questioned his treatment and repeated demanded information he was not able to provide. My experience is that thoughtless medical hexing is much more common than intentional hexing, though it is no less harmful…The usual effect of a medical hex is despair, and I cannot believe that despair has beneficial effects on the human healing system. It is not a good idea to stay in treatment with a doctor who thinks you cannot get better.

With Weil’s insights in mind let’s take a critical look at a problem in the Inflammatory Bowel Disease community: Medical pessimism is often embedded in the explanation which is given for both Crohn’s Disease and Ulcerative Colitis. It’s what I meant when I suggested there’s also institutionalized medical pessimism. Here are a few examples of medical pessimism embedded in explanations of disease. From The Free Dictionary:

 Crohn’s disease is a life-long illness. The severity of the disease can vary, and a patient can experience periods of time when the disease is not active and he or she is symptom free. However, the complications and risks of Crohn’s disease tend to increase over time….Crohn’s disease is a chronic disorder. While the symptoms can be improved, a patient will not be completely cured of the underlying disease.

From the Wikipedia entry for Crohn’s Disease (Oct 5, 2013):

There is no known pharmaceutical or surgical cure for Crohn’s disease. Treatment options are restricted to controlling symptoms, maintaining remission, and preventing relapse.

Both of these authoritative resources contain wrong information. For decades now Crohn’s patients have reported sustained remission, sometimes for the duration of their life. That’s cured. There are instances of surgery curing. There are also instances of dietary and lifestyle changes curing. I’m a patient who was diagnosed with moderate to severe Crohn’s and I haven’t experienced symptoms for years and years. I had a small bowel resection and eventually changed my diet and my lifestyle. I haven’t taken prescription medication for Crohn’s since the summer of 2011 and I keep getting healthier. And I’m not an isolated case.

Under no circumstance should a Crohn’s or Ulcerative Colitis patient be told they have a life-long illness. Likewise they should also not be told they will never be completely cured. It’s simply wrong information in too many cases. The phrase “life long disease” is a pessismistic assumption unrelated to the biology of the problem. The confusion in the medical community likely stems from at least two places. (1) The eitology of Crohn’s and Ulcerative Colitis are complicated and uncertain. An unknown eitology does not imply impossible cure. That confusion is a mistake of arrogance. (Just because YOU, Oh Holy Representative of Medicine, can’t cure it, doesn’t mean it’s an impossible feat.) (2) There’s commercial incentive for the pessimism. Physicians tend, on occasion, to mindlessly repeat the marketing they read in medical journals. [2] I’ve been told by multiple physicians, with a lot of confidence behind their words, that I have an “incurable life-long disease.” The words always seemed recited, as if from a script.

Unfortunately it’s not only medical professionals, and authoritative references which display institutionalized pessimism, well-intentioned activist patients in the Crohn’s community do it too:

 Crohn’s disease is an incurable autoimmune inflammatory bowel disease.

(It’s not the point I’m trying to make but the current thinking is that Crohn’s is an immune deficiency state and not an autoimmune disease.)

Crohn’s disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea and even malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people. The inflammation caused by Crohn’s disease often spreads deep into the layers of affected bowel tissue. Like ulcerative colitis, another common IBD, Crohn’s disease can be both painful and debilitating, and sometimes may lead to life-threatening complications. While there’s no known cure for Crohn’s disease, therapies can greatly reduce the signs and symptoms of Crohn’s disease and even bring about long-term remission. With treatment, many people with Crohn’s disease are able to function well.

Notice that the Mayo Clinic’s explanation of Crohn’s doesn’t say it’s an autoimmune disease. It doesn’t make a definitive statement that it’s life long and it doesn’t exactly say incurable. It says “no know cure” which is slightly less pessimistic but I’d rather see a phrase like “no cookie-cutter cure” or “no magic bullet pill”. The Mayo Clinic’s explanation is not a hex but it could still be tweaked a little by saying that some people do experience lasting remission with surgery and some with dietary and lifestyle changes, some with Fecal Microbiota Transplantation, and others with the conventional commercial therapies. The phrase “proactively sustained remission” is what I feel applies to my case.

Weil also states in the chapter:

Some of the stories I hear are so outrageous that all I can do is laugh; when I can get patients to laugh as well, I feel that the curses are dispelled.

I imagine Weil is right and laughter is the best medicine for dispelling the effects of medical pessimism. As a matter of entertaining my imagination I’ve invented the conversation that I wish would’ve happened to me upon my diagnosis. The imagined conversation is my unhex and it’s not only extremely reasonable but factually in-line with the current thinking about Crohn’s:

Me: Did you find out what’s wrong with me?

Physician: Yes. It turns out you have Crohn’s disease.

Me: What’s Crohn’s disease?

Physician: We’re not entirely sure. It’s classified as an Inflammatory Bowel Disease but it can also effect other parts of your body.

Me: What caused it?

Physician: We don’t know. It seems to have many causal components some of them are: genetic, environmental, and the distribution of your gut’s bacteria all play a role. It’s also a psychosomatic disease. There may be other things we don’t know yet.

Me: Is it curable?

Physician: Yes. But there’s no magic pill. Life-long remission is not only possible it’s common, even with moderate to severe disease like yours. But there is work you will have to do in many aspects of your life.

The reasons why there is this medical pessimism is a separate discussion which I’ll let Weil lead:

It seems most strange that practitioners of the so-called healing art should have such little faith in healing. What are the roots of medical pessimism? One that I identify is the lopsided nature of medical education, which focuses almost exclusively on disease and its treatment rather than on health and maintenance. The preclinical information about disease processes. Here the word “healing” is used rarely, if ever; the term “healing system” not at all.

Yet underlying all this are deeper motivations, never discussed and rarely considered, that have to do with why people become doctors in the first place…When I ask students why they chose medical school, the usual kinds of answers I get have to do with helping others, enjoying prestige and power, and having job and financial security. I believe there is another reason that is less conscious. The practice of medicine provides the illusion of control over life and death. One way to deal with fears of life and death is to seek comfort in that illusion. But every time a patient fails to get better or, especially, dies, doctors must confront the fact that their control is illusory. The prediction of a negative outcome may offer psychological comfort to the physician: if the patient gets better, the doctor can be pleasantly surprised and take credit for it, whereas if the patient gets worse or dies, the doctor predicted it and therefore still seems to be in control. Medical pessimism may thus be a psychological defense against uncertainty, which does not excuse it or lessen its impact on patients. The fact is that we live in an uncertain universe, and do not have the ability to understand how the human organism can heal itself, a subject that is inherently comforting and gives reason for both doctors and patients to be optimistic.

The institutionalized medical pessimism that I outlined is a small example of a complicated conversation. Weil’s “illusion of control” is a wonderful insight. I think there’s an exacerbater to his observation: the commercial incentive structure of our health care culture. Drug manufacturers, for example, have a strong incentive to impress upon physicians that diseases need their brand of drug. The more diseases are marketed as “life long and incurable” the scarier they seem. Physicians, of course, pass this fundamentally biased information along to us patients, and we believe it. In the case of the Inflammatory Bowel Diseases some patients cease to seek other options. This is a revenue boon for the commercial health care system. I’m not suggesting a grand conspiracy theory but just the practical result of a health care ecosystem with misaligned incentives. The entire idea of a commercial narrative being handed to physicians, patient advocacy groups, and patients is likely the topic a different discussion, but at least, hopefully, you can get a sense of its scope and power from my example of institutionalized pessimism.

It was my conviction then, as it remains now, that we need to have a habitually critical attitude toward language – our own as well as that of others – both to provide for our personal well-being and to ensure that we will function adequately as citizens.

-S.I. Hayakawa, Language in Thought and Action (Preface, 5th Edition)

Notes:

[1] Roy Steinbock, MD FAAP (More in this post about the CCFA meeting.)

[2] There are a lot references to back up this idea. Here is the most concise: Medical Journals Are an Extension of the Marketing Arm of Pharmaceutical Companies by Richard Smith

Posted in Book Reviews, Rants, Uncategorized.

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