“Therapeutic illusion” and prostate cancer care

In this week’s New England Journal of Medicine there is what your sitemaster considers to be a highly informative article on what is known as “therapeutic illusion” and its impact on clinical practice.

As regular readers will be aware, we have often brought to their attention some of the recommendations (for doctors and for clinicians and consumers) made through the “Choosing Wisely” initiative that are affecting management of prostate cancer. In his article on therapeutic illusion, Casarett addresses many of the issues related to what it means for a clinician to “choose wisely” in making decisions about how to manage the care of a specific patient, and he gives a number of interesting examples of how therapeutic illusion can affect the choice of management strategy. (The examples are not prostate cancer-specific.)

What your sitemaster would like to note, however, is that therapeutic illusion doesn’t just affect clinicians. It affects patients and family members too.

We tend to believe that it is almost always better to be “doing something” when we are told we have a medical “disorder” of some type. However, one only has to watch some of the advertising on television to recognize that we have now raised a whole range of relatively common “disorders” (like having dry eyes) to the status of at least “illnesses” if not “diseases”. Such language can make relatively minor, if problematic, disorders seem much more serious than they really are.

The use of the term “cancer” — yes, as in, “Jim, I need to tell you that you have early stage prostate cancer” — may come with therapeutic illusions for physicians, patients, spouses or partners, and other family members of the patient. But context is critical, and the majority of patients (and their family members) do not understand that when the words above are first spoken to a patient.

For most patients, the immediate reaction to a statement such as the one immediately above is a mental one: “I have CANCER!” And it is open to question just how much of the ensuing conversation they will remember 6 hours later.

For 50 years until about 1980 (i.e., much of the lifetime of most men diagnosed with prostate cancer today), being told you had CANCER equated to TREATMENT, side effects, chemotherapy, and DEATH. Many patients therefore start out with the assumption that immediate treatment is ESSENTIAL or they are going to die. This is as much a form of therapeutic illusion as is the presumption on the part of at least some urologists that radical prostatectomy is necessarily the best way to treat most men with localized prostate cancer.

For prostate cancer patients, treaters, and particularly prostate cancer educators and advocates like support group leaders, explaining how such therapeutic illusions affect every conversation about “the best” ways to manage prostate cancer care for individual patients are critical. We have a long way to go before we can persuade the majority of newly diagnosed patients with low-risk disease (and many of the treaters of early stage prostate cancer) that simple forms of monitoring may be a much wiser therapeutic choice that immediate treatment.

So just to be clear, Jim (above) has a PSA of 3.6 ng/ml, a clinical stage of T1c, and a single 1.5-mm-long focus of cancer in one out of 12 biopsy cores. That focus of cancer is Gleason 3 + 3 = 6. In addition, Jim is 72 years of age; he had a heart attack 15 years ago (from which he has recovered reasonably well after implantation of a stent); his body mass index (BMI) is 31; he has a mild form of Type II diabetes; he is on a variety of different drugs already to control his cardiovascular and pre-diabetic condictions; significant exercise is something that he hasn’t indulged in since he was in his 20s; and he is starting to have a hard time getting up and down the stairs each day.

Yes, Jim does have prostate cancer. Whether he has a form of prostate cancer that needs any form of treatment within his likely remaining lifetime seems like something that could be seriously impacted by everyone’s therapeutic illusions.


4 Responses

  1. Well in today’s age of social media and cancer-specific related websites this issue may be magnified for some patients.

    I am generally stunned by the seemingly expert advice doled out on these sites by non-medical people with at best a limited understanding of the individuals whom they are advising. I realize there is a balance required between anecdotal experience and medical advice. I believe the line is often crossed. I believe that sharing personal experiences can be helpful for patients who may be in a similar situation. However, reader beware, just because someone posts something on an internet forum does not make it true or a correct treatment for everyone.

  2. Something like therapeutic illusion was active in a quick conversation I had, a week or so before I left Nederland for Sweden. I wanted world-class care for localised, high-risk prostate cancer. A friend told me not to worry, as 50% of affected men survive.

    I probably told him why that might be both true and unhelpful to me. Was he under a therapeutic illusion owing to pop science? Was I, having grabbed the Swedish offer of an effective (in what sense?), aggressive treatment? That is, was I convinced that my treatment was not over-treatment? I doubt that I was over-treated, as I have good reasons to doubt the ethical soundness of the Dutch argument for a less aggressive treatment with, following current trial statistics, a larger chance of biochemical failure than I run now. So, talk about that illusion can involve ethics.

    The ethical issue is this. After I had decided to leave Nederland, I had a friendly conversation with a Dutch professor of radiology. I asked him why I was not told about the Swedish trimodal treatment. I did not tell him about my decision. He told me that the morbidity was too high.

    I said, displaying ignorance, “But I will not die from the treatment!”

    He told me about toxicity, implying that side effects could be quite damaging.

    “But Professor,” I said, “my survival chances are higher so should I not risk these effects?”

    He said, “We have our own views of this matter in Nederland.”

    In other words, these professionals consider a heightened risk of prostate cancer mortality to be less important to deciding amongst treatment options than heightened survival chances with QOL lowering toxicity. Indeed, these authorities thought they need not tell me about toxicity. That is, they did not fully inform me about a vital (literally) matter. Hence any decision between options (radiotherapy or radical prostectomy, perhaps with 6 to 18 months of adjuvant ADT) I made would have been epistemically invalid. This Dutch attitude is ethically wrong.

    Right Alan and Sitemaster, I said I would get ethical so there it is.

  3. Excellent points.
    Thanks for sharing the link.

  4. One aspect of “Choosing Wisely” initiative presents profoundly flawed and misleading information on screening

    This is a good article, but I decided to check the link to the Choosing Wisely initiative for clinicians and “consumers”. The link had “some” good, solid information and recommendations, as Sitemaster suggests, but was unfortunately laced with some really dangerously misleading and obsolete information, which is probably why Sitemaster has not recommended the entire Choosing Wisely set of recommendations.

    Specifically, there is a major problem with the information in the link to “PSA Blood Test for Prostate Cancer – When Men Need It, And When They Don’t”: “Studies show that routine PSA tests of 1,000 men ages 55 to 69 prevent one prostate cancer death. But the PSA also has risks.” Immediately on seeing that I realized they were referring to an obsolete, and misleading, statistic from the European Randomized Study of Screening for Prostate Cancer (ERSPC), and I then looked over and noticed that the information was sponsored by Consumer Reports, which has been doing a bad job of addressing prostate cancer screening for years now. In essence, Consumer Reports, like the misleading and blundering negative recommendation about PSA testing of the US Preventive Services Task Force, is influencing men and their supportive loved ones to view all PSA testing negatively, including PSA testing by patients well aware of low-risk prostate cancer and active surveillance strategy.

    Here’s are some of the key facts about that widely quoted but obsolete and misleading statement that it takes routine PSA tests of 1,000 men ages 55 to 69 to save a life. The statement is based on the findings reported in the 11-year (since enrollment started, very short follow-up time since diagnosis) update in March 2012 of the ERSPC, which was the second of three major reports. That report stated: “To prevent one death from prostate cancer at 11 years of follow-up, 1055 men would need to be invited for screening and 37 cancers would need to be detected.” But first, consider the trend as the ERSPC went from its initial report with 9 years of follow-up (2009), to the 11-year report, to the 13-year report (2014). The initial report stated that “1410 men would need to be screened and 48 additional cases of prostate cancer would need to be treated to prevent one death from prostate cancer.” Then we see that the figure drops to 1,055 with two more years of follow-up. Next, after an additional 2 years of follow-up — now just 4 years of follow-up more than in the original report, the 13-year report tells us that the figures in the study are “equivalent to one prostate cancer death averted per 781 (95% CI 490-1929) men invited for screening or one per 27 (17-66) additional prostate cancers detected.” Note the trend: from 1,410, to 1,055, to 781! The latest figure is just about half the initial figure, and far more favorable to screening!

    Consider also that even the 13-year figure is woefully premature: that report, for the first time, gave us the median years of follow-up since diagnosis: only 6.4 years in the screening group and 4.4 years in the non-screening group. Also, the figures do not consider the very real impact of non-compliance with assigned screening. Once that is factored in, the 13-year report shows us that the impact of screening increases. Moreover, some of the data included in the report is from countries that had a porous screening process (every 4 years for most), had to curtail screening due to funding (Belgium), started quite late in the study (France), or had other issues that dilute the effect of screening. I find it inexcusable that the Choosing Wisely campaign has not even updated the key figure of number of tests needed to save a life, and of course they should have also put that figure in context, indicating, at least, the trend.

    The bottom line: the “Choosing Wisely” initiative has lost a lot of credibility for me.

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