Humanism and literature in every area of healthcare

Marco Inzitari
 

Oliver Sack

Luckily, the person is regaining a central role in health care and his/hers perceptions, experiences and values are gaining importance at all levels: care, research and management. This is especially important in addressing the complex health and social issues with which we are increasingly surrounded.

This year, Jordi Varela published a post on reflexive medicine on this blog, in which he highlighted the value of spontaneity, listening and knowing how to include people in the medical history, inspired by a book by John Launer, a doctor from a poor London neighbourhood and writer. These considerations seem especially important to me in a world that has been progressively standardized with a multiplicity of guidelines and protocols and has token evidence-based medicine to the extreme. The problem is that the care of chronic diseases has been putting this model into the spotlight since the needs of many patients, especially older adults, have become more complex. Complexity, which by definition entails uncertainty in decision-making in the face of multidimensional and non-stereotyped problems and needs of people, can hardly be managed with an algorithm or a protocol.

On the other hand, the traditional scientific evidence of the "randomized and controlled clinical trial" as the gold standard, often does not answer the complexity because it fails to control the complex relationships between the multiple exposure factors and the outcome measures (by the way, does a “gold standard” make sense in this context?). Thus, also research, which must continue to support clinical decision-making, is opening up to qualitative and narrative aspects of health that include the experience of the person, as well as a longer vision of the context, assessing what barriers and facilitators can affect our interventions, beyond their potential intrinsic value. This does not have to replace, but rather complement, the quantitative methodology to guarantee this extended view of complexity.

Finally, the same paradigm is being applied to health management, where not everything can be reduced to efficient protocols and procedures, delegating the organization to expert engineers and consultants, but it is key to complement this organizational vision with the experience of the user and with the vision of professionals.

The idea of recovering humanism in the clinical practice is very clear in the biographical film (or biopic) about Oliver Sacks, neurologist and writer, son of a family of doctors (his mother was a renowned surgeon in the early 20th century in England). Sacks, after many years, observing his patients and collecting medical records in a qualitatively exhaustive way, became famous with the book “Awakenings”, brought to the big screen by Robin Williams and Robert De Niro and based on the spectacular and unpredictable reactions of twenty patients with sequelae of lethargic encephalitis treated with L-dopa.

Some moments in the biopic make us reflect about how, from the health professions, we approach people with chronic pathologies and complex problems. Here are some quotes:

1. "We and the problems and needs of our patients find ourselves at the intersection between biology and biography"
2. Faced with complex situations and needs, "the role of the doctor and the patient is to jointly find a solution to live with what cannot be changed".
3. "What you have to contribute to the disease and the patients is yourself. You do not contribute just a handful of medicines, you contribute yourself and you have to interact ... I often think of hanging up the coat and going into the community. "
4. "When everyone wanted quantitative medicine, science and statistics, Oliver stood for qualitative medicine, writing, description, observation, sympathy. And imagination."

As Jordi Varela already commented in another post about the autobiography of Dr. Sacks that inspires the film, the end is also a great lesson about the end of life.

Beyond integrating the qualitative vision of the person in health care, research and management, the complex current situation of “syndemic” linked to COVID-19 ‒ given the social and economic implications of the pandemic, beyond the health and psychological implications‒ also it would benefit from more humanism and literature, especially in communication aspects. Scientific dissemination, which translates technically rigorous and reliable information understandably, is strategic in such critical moments and in which the avalanche of information and misinformation confuses, anguishes, and tires the public, in which it causes reactions such as stress or pandemic fatigue that affect both the quality of life and adherence to preventive measures. For this reason, the contribution of health professionals and scientists who have also cultivated an interest in literature, as is the case of Salvador Macip, medical researcher and writer, with his recent contributions, is of great value.

So, without reducing ourselves to anecdote and without losing the rigorous vision of quantitative data, which has brought so many improvements to health, we must recover the qualitative and narrative aspects at all levels. Only with a broad vision will we find answers to complex problems. As Menken said, “for every complex problem there is an answer that is clear, simple, and probably wrong”.