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.



Nevertheless, in some cases it goes the other way around. In a previous post on this blog I’ve talked about the growing epidemic of bilateral prophylactic mastectomies in patients who did not meet criteria for this treatment. In the United States, these cases tripled the interventions that should be carried out if they’d stick to the strict indication. The fact is that patients gave value to an approach that the medical community considered as over-treatment, with a higher cost and greater complications, but without improving survival rates. Researchers who studied this phenomenon highlighted that the decision-making model had a significant influence on the choice patients took. The reason why patients frequently chose the most aggressive option was to have a sense of control and tranquillity over the risk of future relapses. All this happens in a context in which the US legal background guaranteed the coverage of this option from the logic that a treatment that guarantees post-intervention symmetry should be on offer.

So, what do patients value the most? And, how do we apply it in the healthcare processes? Dr Varela exposes, in a very illustrative post "How to develop a value chain from a clinical trajectory". In summary, Dr. Varela pointed-out:

• Patient target definition
• Definition of outcomes or predicted results. It’s about evaluating the results of the processes according to the defined parameters
• Patient-centred care with shared decision dynamics
• Multidisciplinary teamwork
• Accessibility and adherence

Recently I had to reflect on the encounter between precision medicine and the evaluation of results based on value (granted by the patient) and initiatives such as ICHOM described in the post above mentioned. I asked myself some questions since it’s not easy to predict which results have more a priori value for patients. Pedro Rey helps us understand this phenomenon in his post “the shared decision in behavioural economics view” and the reasons why it’s a complicated challenge.

• First, because of the asymmetry of the information between doctors and patients. 
• Second, because of a tendency for patients to change their minds and because we also tend to give more value to losses than to gains. 
• Third, the difficulty in understanding the risk of both patients and doctors

The two extremes exposed at the beginning of the post, in which clinical act and perceived value don’t converge, denote that the role of the doctor - and in general of the healthcare professionals who accompany patients in the care processes - is relevant at the time of obtaining the best results desired by patients (patient outcomes). I will try to reason.

First, the need to explore hidden concerns, those of the patient, not just those of the doctor to get the diagnosis and treatment right.

Secondly, expectations regarding the results of intervention emerge long before the clinical meeting in the consultation. Each patient comes with his or hers experience or even other people's experiences, false myths that circulate in our society or directly misleading advertising of magical solutions. We must identify it individually and adjust it according to the expertise of our exercise. On a collective basis, the bombardment of diverse media and social networks circulate information that ranges from academic rigour challenging to interpret to fairy tales lacking any scientific basis, and that confuse the population. It is of institutions’ responsibility to protect the people and pay rigour and professional ethics their due attention. Public administrations, scientific societies and professional associations have their role and must count on the collaboration with the media. Some initiatives, like those promoted by the Barcelona Medical Council in recent years were, on the one hand, the publication of a position document on the advertisement of medical acts and, on the other, creating more than twenty years ago a stamp of quality of information on  websites, named Accredited Medical Web (WMA as for Web Médica Acreditada in spanish). The first initiative guides on how to disseminate and publicize medicine in a responsible manner so that professionals, health institutions. And WMA builds confidence in content that can be addressed to the general population as well as to other professionals.

Third, the accompaniment during the healthcare process is crucial with another paramount element: the narrative capacity of the professionals or their competence to describe what happens to his patient. Like that holiday, when one visits all the right places accompanied by someone with whom they were not in tune, but in the right company, they end up having an unexpected pleasant trip wherever they go. Therefore, it’s not the trip but the company that makes the experience memorable. Professionals often witness cases where families are grateful after the death of a family member or seeing a patient who was initially opposed and with whom they make an effort to try understanding and provide what is needed, ending up building a bulletproof relationship doctor-patient.

Dr Casado, in one of this posts’, formulates and raises a very pertinent question regarding the confluence between satisfaction, efficiency, results and costs: is it possible to design a health system without a narrative base?

In our health centres, we need professionals who, in addition to knowing in medicine, have the time to narrate integrating the three factors that we have listed and know how to accompany people on their trip. It’s not an easy task; it requires recognizing each patient as unique and a dose of inexhaustible empathy. Understanding this means getting on the right track of evidence-based practices and meeting patient preferences.