Narrative, expectations and relevant outcomes for patients

Gustavo Tolchinsky

At the beginning of my medical residency, I used to experience some frustration with some patients whom, despite having gone through a correct assessment and having been diagnosed with a treatable and straightforward pathology, when they were discharged, they were still not satisfied. After some time, I began identifying that at least one of my mistakes was in my approach to patients. Excessively focused on diagnosing a pathology as if I were to “nail it” in an exam, I wasn’t paying attention to what led the patient to visit me, their concern; this couldn’t be solved by giving a mere diagnosis and treatment. When we go through these situations, we find it traumatic, frustrating and disconcerting. On top of that, this may lead to over-acting that only leads to over-treatment due to repeated patient demand at different points of the system. This could be because the clinical solution we offer does not solve those concerns that went unidentified in the clinical interview, or that the patient's expectations are ill-adjusted to realistic results and these, therefore, are unattainable.

Precision medicine cannot turn its back on emotions

Gustavo Tolchinsky

Two weeks ago in his post, Jordi Varela brought us a critical vision of precision medicine, which shows us a somewhat less triumphalist scenario than expected. Precision medicine was born with the intention to give better answers to spaces of uncertainty regarding clinical problems from different areas of medicine such as genomics or big data. Linking with this theme, we shouldn’t forget that even being more effective than what has been proven at the moment, we still depend on the human factor to reach the best possible result. When it comes to decision making, multiple factors are involved. There is a rational part, which we believe we control, but above all there is an emotional part that ends up directing us towards that scenario in which we believe we are going to be more comfortable in.

Montori points out that the tools he uses in decision-making only serve as a support, aware that the emotional factor needs to be guided with the least abstract information possible. In addition to that, our verbal communication carries more than one message: the explicit and the symbolic. The explicit derives from the literal meaning, what we call Verbatim, very limited and of an exact, unequivocal definition, and doesn’t give rise to mistakes of understanding by itself. The symbolic is that which derives from the context, the interpretation and the value of those who understand it in their own way, what we call it Gist.

What are the objectives of cancer prevention programs?

Vinay Prasad and Adam Cifu in "Ending Medical Reversal, Improving outcomes, Saving lives" affirmed that in order to interpret the meaning of secondary cancer prevention programs, three objectives must be kept in mind: 1) cancer ought to be discovered ahead of time, 2) specific mortality ought to be reduced and 3) overall mortality should be decreased.

The authors say that what really matters is objective number 3, given that the first two are purely instrumental. After all, if a healthy person accepts a screening, this is supposed to be because he or she wants to live longer. Unfortunately, the data shows that preventive programs (cancer of the colon, prostate, breast, cervix and lung) obtain the following results (with small nuances among them): a) objective 1: achieved, b) objective 2: weak, and c) objective 3: not reached.

What if I decide to do nothing?

TIME magazine has surprised us with a question on its front page: "What would happen if I decided to do nothing?" Desiree Basila, a 60-year-old teacher, had just been diagnosed with ductal carcinoma in situ (DCIS) and, overwhelmed by the aggressiveness of the treatment proposals offered to her, began to investigate on her own and realized that there were many unknown elements about the progression of this type of injury and also saw that there was no agreement in the scientific community on what should be the most appropriate therapy for her case. For this reason she made a bold decision and asked her oncologist to do nothing, which resulted in two checks a year and a treatment with Tamoxifen, a drug that blocks estrogens that could cause the tumour to grow.

The case of Desiree Basila is quite valuable because when she made this decision, 8 years ago, it was not yet known that the mortality of women with DCIS, regardless of the type of treatment they adopt, is 3.3%, a figure comparable to that of the general population, and it was also not known that chemotherapy has no effect on tumours in initial staging. But to better understand the pressure that Desiree had to endure, it should be added that the attitude of most oncologists, even in the case of DCIS, was, and remains, "the sooner the better and the more the better."

Could the cancer numbers be better explained?

Cristina Roure explained in a post in her blog series "Pantone", an experience that Gerd Gigerenzer, Director of the Max Planck Institute for Human Development in Berlin, wrote in the book "How to know when numbers deceive you", where more than half of the surveyed gynaecologists did not estimate, after seeing published scientific data, what was the probability to have cancer of an asymptomatic woman’s with a positive screening mammogram. In fact the error of most of the colleagues was monumental: they said it was 90% when in fact it was 10%.

In a recent post, I commented on the book of Peter Ubel "Critical Decisions", in which the author showed what the emotional force of numbers was, both for patients and for the doctors. In this certainly worrying line, I want to give you a shred of hope. There are ways to show the numbers in order to reduce the reigning confusion. Many experts are warning us to flee percentages, the ineffable pies and the relative risks, and we have to get used to talking to patients of real numbers, pictograms with people and absolute risks. To make myself understood, I include a couple of graphics from the Harding Center for Risk Literacy, a centre which is in the orbit of Gigerenzer and Max Planck. The first is a pictogram on the evaluation of prevention programs for prostate cancer based on PSA controls and anal touch of the gland.

"Too much mamography" or the mirage of screenings

By Cristina Roure @crouren

The BMJ recently published the results of a randomized Canadian study which shows that annual mammography in asymptomatic women under 60 does not bring any advantage in reducing mortality from breast cancer compared with physical examination without mammography and, instead, it leads to more than 20% over diagnosis. The article is accompanied by an editorial entitled "Too much mamography" which suggests the need to rethink the breast screening policies as it has done with PSA screening in the case of prostate cancer.

It can be somewhat counterintuitive to think that a test that can detect cancer early and therefore provide the opportunity to treat it early, does not reduce mortality, but often not only the citizens but also the professionals have difficulty interpreting the benefits and risks of screenings and to communicate them clearly to patients when making the decision to participate or not in the program. Gerd Gigerenzer, Director of the Max Planck Institute for Human Development in Berlin explains it very well in his book Calculated Risks. How to know when numbers deceive you¹.