The Preacher and the Exterminator

People with cancer and chronic illnesses are often admonished to have a positive attitude. Health care providers as well as family, friends and complete strangers tell us that our attitude will change our outcome. This message, though well intended, has no clear scientific basis and may cause emotional discomfort. At other times, patients with advanced stage cancer and other terminal illness may find that their expressions of hope are snuffed out by clinicians as if they were delusional thoughts. In this essay, I will discuss my experience as a physician caring for patients with multiple sclerosis for 20 years and as a patient recently diagnosed with a cancer that carries a median survival of two years.

To illustrate, I ask you to consider two extreme positions, the preacher and the exterminator, neither of which is usually experienced in a pure form. By showing the extremes, I hope to demonstrate the potential issues. The preacher is generally found outside the health care system, so-called after reading an excellent cancer memoir entitled Everything Happens for a Reason and Other Lies I've Loved, published in 2018. The author, Kate Bowler, is an assistant professor in the Divinity School of Duke University. In the memoir, she discusses her several medical illnesses including the stage 4 colon cancer diagnosed in her mid-thirties. As background, she describes her dissertation research on the Prosperity Gospel. In her memoir she discusses the Prosperity Gospel teaching that if we pray hard enough all good things will come to us, as is preached at many mega-churches. The thought process is that if someone becomes ill and doesn't get well, or has other difficulties in their lives, they probably weren't praying hard enough, and/or had some unforgiven sin. Although it isn't always expressed so plainly, patients with chronic illness and cancer encounter expressions of this concept. The comments and advice given to a patient by family and friends may not have any religious undertones, but the message is clear: you just need to think positively, loudly and consistently, about what is happening to you, and you will get better.

While it may or may not be beneficial to have a positive attitude, a major problem is that if you continue to get worse, despite working hard on your attitude, you may suffer damaging self-recrimination (i.e., I didn't have enough positive thought, I didn't try hard enough, it's my fault my condition worsened). Immediately after my cancer diagnosis I received a copy of Norman Cousins' book discussing the use of high dose vitamin C and watching Marx Brothers movies to induce the correct state of mind. I have also received a number of religious themed books and gifts, not so much for my immediate comfort as to aid in my ability to recover from the cancer. This point of view can lead to self-blame and depression, compounding an already difficult health situation.

While it may or may not be beneficial to have a positive attitude, a major problem is that if you continue to get worse, despite working hard on your attitude, you may suffer damaging self-recrimination...

The exterminator approach is more often found in health care settings. Paradoxically many providers encourage patients to have a positive attitude but then behave as if such an attitude is delusional. It isn't clear why this double message occurs, possibly out of concern for not providing false hope. Too often, health care providers undermine positive statements or other expressions of a positive attitude. Many clinicians do not encourage activities or thoughts that might assist with a positive attitude, such as exercise, yoga, walks outdoors, meditation, etc. Indeed, a positive statement is sometimes treated as if a cockroach was found in an exam room, hence the name exterminator. Patients who are already vulnerable can feel belittled. As a practitioner attempting to care for patients with a highly variable but potentially neurologically devastating disease, I was often confronted with the dilemma of how to encourage a positive attitude without raising potentially unrealistic optimism. While it is clearly important to help patients gain a realistic view of their illness and prognosis, and not to foster false expectations, it is also important not to eliminate hope.

Paradoxically many providers encourage patients to have a positive attitude but then behave as if such an attitude is delusional.

Sometimes as a practitioner I would couch my discussion in terms of healthy denial versus unhealthy denial. Healthy denial can be as simple as trying to live in the present, and not constantly jumping to the worst possible outcome, or emphasizing and encouraging what the patient can still do and try. Unhealthy denial can manifest as a complete rejection of any discussion of prognosis or it can lead to relying on unproven or potentially dangerous alternative therapies or avoiding treatment altogether.

Often practitioners make inaccurate assumptions about why a patient doesn't seem enthusiastic about more aggressive treatments. The practitioner when faced with any resistance to discussing a new therapy assumes that the patient doesn't “want” the therapy. Often patients are actually feeling that they don't want to consider a medication unless reassured that safer and better tolerated options aren't available. Clinicians aren't mind readers and the best way to discover patients' concerns is to ask them; assuming leads us astray. For example, as a cancer patient, when I expressed concern about being started on a regimen of chemotherapy, the immediate response of the practitioners was to reassure me about side effect control. I was later chastised about not “wanting” chemotherapy. However, my main concern about starting on chemotherapy was to make sure all alternative options had been considered, as I considered chemotherapy as the end of the line for my condition. Similarly, a friend of mine expressed some concern to her practitioners about having a cardiac ablation, and at subsequent visits was chastised for not “wanting” an ablation, when all she had expressed at the first visit was concern as to whether the procedure was really necessary. Likewise, any jokes I might make to my cancer providers about wanting to see the next solar eclipse in 2024 were roundly dismissed as unlikely to occur, let alone seeing my son graduate from college in 2020. The exterminator approach tends to discourage any possibility of discussion of patient goals, wishes and understanding.

This discussion of how to and whether to cultivate a positive attitude in a patient is after all another version of “first do no harm.” Encouraging a patient to believe that he/she can cure herself by a positive attitude is clearly not a reasonable course, but likewise, snuffing out all hope—particularly of maintaining a reasonable quality of life for a time—isn't appropriate either. Drawing out a patient's concerns leads to much better communication and allows patients a modicum of control in what is frequently an overwhelming situation.

Clinicians aren't mind readers and the best way to discover patients' concerns is to ask them; assuming leads us astray.

Maybe instead of recommending that a patient have a positive attitude, or complimenting them when they do, we should consider asking “what are you doing to take care of yourself and how can I assist you in those efforts?”