The “fado” of the European Society of Health and Medical Sociology at Lisbon

The origins of the Fado, a mournful existential way of singing date back to the beginning of the XIX century, in Lisboa, right in the same city where the congress of ESHMS – European Society of Health and Medical Sociology too place between 6 to 8 June.  Today Fado is commonly regarded as simply a form of song which can be about anything, but must follow a certain traditional structure. In popular belief, Fado is a form of music characterized by mournful tunes and lyrics, often about the sea or the life of the poor people, and infused with a sentiment of resignation, fatefulness and melancholia. However, if the old Fado songs were more based more on desperate loving, and death, the new ones, are more related to the “way to find”, “the quest”:  only singing FADO, one could get answers to existential quests.

The Sociology ESHMS went much further being European: there were many participants from Brasil, and this is quite natural since Portugal has an open thread with this country, but less natural was  the massive attendants by Australia, by Canada and by US.

The title of the congress “Old tensions, Emerging Paradoxes in Health: Rights, Knowledge and Trust” was based on the injustice, the paradoxes in health and illness of so called western countries, or better defined as those which follow a biomedical model, full of technology, and somehow hyper medicalized, and of other countries, as the African and South American  ones, in which mainly NGOs (not governative organization) are those which provide health care and dictate rules, raising contradictory reactions by some people who are grateful to them and some others- as the anthropologist Levi Strauss told already 60 years ago-  who clearly stated that NGO are patronized by venture capitalism and they should leave free these countries to embark themselves  on their own projects, to provide Health.

The Vulnerability was at the centre of the congress, similarly to the topics of the the Fado singers, exploited women, mariners, and low class social income people, and expressing a certain Fatalistic approach towards life: here the Vulnerability was represented by poor people who die earlier that rich people even in countries with public National health Service. Yes, because it has been demonstrated that access of care is one of the least cause of dying earlier; the highest causal relationship for a shorter length of life is due to the traumas that life brings in less literate people, when they are adult, in family, at work, and as multifactorial cause also if they had a heavy childhood.

Women are more vulnerable, in a difficult tournament to understand if the reasons are due to genetics, epigenetics or both. Migrants, as always been during the centuries, are more vulnerable. However, vulnerability arises also form changing from a Social Health Service, as that on in the ex USSR, to the current fee for service that the citizen has to pay to get a better health: currently there are two opposing cultures in the ex USSR countries, a former which is more devoted to a “slow, lazy, low technological, patriarchal, way to cure patients, still belonging to the communist age”, the latter, a culture based on technology, on money, on new competencies, more oriented towards the customer. It looks like a third way, the competence without greediness for money, is not given.

The choice was topic of the congress: had the Fado singers choice to sing the topic of their life? They had limited topics because their life was limited… “ O fado nasceu um dia, quando o vento mal bulia e o ceu o mar prolongava Na amurada dum Veleiro.  No peito dum Marinhero, Que estando triste cantava, que, estando triste, cantava.” The Fado was born one day, when the wind badly moved and the sky the sea prolonged towards the wall of a Sailing boat. In the chest of a mariner who  being sad, sang, who being sad, he  sang.” “Un de otro assim  perdido, somos dois gritos calados, dois fados desencontrados, dois amantes desunido”.  “We both together, we are two low screams, two kept apart fates,- Fados- two lovers disunited.” These are sad songs of migration and of impossible relationship. The love thy choose is too often the wrong one. Parallelly, discussion where there to discuss the patient’s free choice, and if there was any: chemotherapy protocols which are proven to prolong life of six months, despite high side effects? Is the patient free to choose whether to go for this prolongation of life? Narrative research was ther to show that women with breast cancer declare to accept these therapies not for themselves but because they want to be “good” patients with their doctors, and they want to do it for their relatives or children.

Breast screening: a new world was opened to my eyes; publications data are so inconsistent on the benefit of the screening:  it is officially said to prevent 8 deaths out of 1000 women. However, data are inconsistent, up to one third of data they are not included in the metanalysis and not shown.  Australian, policy makers just talked about the results on mortality, not saying anything about the inconsistency of data. Same news coming from Norway, the mammography screening was included in an era of optimism and now epidemiological data disagree on the value of mammography screening. There is the risk to overdiagnosis and of false positive, so to treat women with aggressive chemotherapy when they do not have cancer. The mandatory screening is against the concept of personalization of therapy and is a global /international knowledge production. It is like a given destiny, a Fado.

The choice seems limited, no major point was raised on vaccination, since the data are so inconsistent: and there is, however,  a moral responsibility for belonging to a community which obliges vaccinations before school time in almost every country. The problem of choice regards the Very Self, in a world that pushes medical biotechnology, and that says that the body is a machine to be repaired with tools for rigid pipes, and hackers to enter in the brain is nothing more that a computer. A world which is fatally -losing the soul even the art of singing.

Another issue of the congress was TRUST: trust among doctors and patients, which has changed in European Countries and in Italy, over the last decades, moving from a kind of Blind Trust by the patients towards the doctors, to a more Critical Trust, since the patients deems themselves more competent. And some of them really are: not only they clearly see the physicians’ bonds between the private pharmaceutical and technological companies – and by bonds I don’t mean the right kind of information and the wonderful new progress of technology- but the pushing to a senseless use of tests, visits and drug prescriptions. Also, defensive medicine is a major factor for eroding TRUST; doctors are scared to be brought in trial and litigation so they follow better Evidence Based Medicine than Experience Based Medicine.

What Medical Humanities and Narrative medicine have to do with this? They have to do with the empowerment of TRUST, based on an intelligent empathetic style, they have to do with CHOICE, for a better alignment with patients’ needs and wishes. The difficult patients have been defined for the first time not as those who are not compliant but with the patients with whom is very difficult to establish a relationship. In a sort of friendship as the Fado says “one gives without waiting anything in exchange”. That’s a real friendship, that might be the ideal of a pure alignment. What Narrative medicine has to do with all this social medicine: narrative research is so powerful to detect, together with quantitative data, the different point of views of people, their relatives, their careers, their health care providers. Narrative research should be more fostered and not reduced to few patients’ verbatim, but carried out with a thorough methodology.

And as far for education as  Prof. Brian Hurwitz, King’s College, in his 12 minutes speech (this was the only major pitfall of the congress, speakers were given a time too short  to speak and time for questions was very limited, mimicking a medical congress, Why?) to try not to defragment women and men in case histories as published on scientific journals, as Samuel Beckett did in his novels, deconstructing the beloved woman and other human being. Case histories published on Journal use a language that Beckett used deliberately in an ironic way to describe absurd situation of a fragmented person.

As last, a Fado gives also an advice to prepare for the short time of life, because regret of the past time is there hidden behind a pillar:

 

Vida vivida

Volta atras vida vivida

Para eu tornar a ver

Aquela vida perdida

Que nunca soube viver.

Voltar de novo quem dera

A tal tempo, que saudade

Volta sempre a primavera

So nao volta a mom cidade…

O tempo vai se- passando

E a gente vai – se illudendo

Ora rindo, ora chorando

Ora chorando, ora rindo.

Meus deus, como o tempo passa.

Dizemos de quando em quando

Afinal o tempo fica

A gente e que vai passando.

 

Lived life

Turning   back to lived life behind,
to  see again
that lost life
That I  never knew how to live.
To return again who had given
The such time, that melancholy
always returns in  the spring
doesn’t only return in my place.
The time leaves – passing
And people go. illuding,
Some times laughing, other times crying
Some times crying, other times laughing.
My God, as the time passes.
We say from time to time
After all the time is
Us and that is going passing.

 

 

Beyond women, races, poor people, migrants a major ghost is behind us and already song in the Fado: the elderly people, those who have lived already a life, or living their last years of live, that nowadays have to strive not only to prolong their life but to add quality to quantity of life expectancy. One thing was clear, the medical access is important to save life but it is not enough to bring joy to life, so to get away from the mourning Fado mode, which is pertinent to certain time to life, and very good as an example of sharing sorrow, something that in this society is like a Taboo, – nobody should suffer but only wearing the mask of smiles, but to new songs, in which FADO expands in Major keys, with no anymore melancholy, but learning to the joy of being there, in nourishing relationship. In Cafe De Fado, in Lisboa, all people sings, on the guitar  melodies, and they share not only “faded lives” but also “new possibilities” for crossing the ocean and discovering new lands.

Here, we report a Fado entitled  “Madredeus – Ainda”, we would like particularly to invite you to listen and read the lyrics.

 

Maria Giulia Marini

Epidemiologist and counselor in transactional analysis, thirty years of professional life in health care. I have a classic humanistic background, including the knowledge of Ancient Greek and Latin, which opened me to study languages and arts, becoming an Art Coach. I followed afterward scientific academic studies, in clinical pharmacology with an academic specialization in Epidemiology (University of Milan and Pavia). Past international experiences at the Harvard Medical School and in a pharma company at Mainz in Germany. Currently Director of Innovation in the Health Care Area of Fondazione ISTUD a center for educational and social and health care research. I'm serving as president of EUNAMES- European Narrative Medicine Society, on the board of Italian Society of Narrative Medicine, a tenured professor of Narrative Medicine at La Sapienza, Roma, and teaching narrative medicine in other universities and institutions at a national and international level. In 2016 I was a referee for the World Health Organization- Europen for “Narrative Method of Research in Public Health.” Writer of the books; “Narrative medicine: Bridging the gap between Evidence-Based care and Medical Humanities,” and "Languages of care in Narrative Medicine" edited with Springer, and since 2021 main editor for Springer of the new series "New Paradigms in Health Care."

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