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About doctors’ and patients’ narrative style in writing about disease and illness. The Tower of Babel.

Pieter_Bruegel_the_Elder_-_The_Tower_of_Babel_(Vienna)_-_Google_Art_Project_-_edited[Genesis 11, 1-9] And the whole earth was of one language, and of one speech. And it came to pass, as they journeyed from the east, that they found a plain in the land of Shinar; and they dwelt there. And they said one to another, Go to, let us make brick, and burn them thoroughly. And they had brick for stone, and slime had they for mortar. And they said, Go to, let us build us a city and a tower, whose top may reach unto heaven; and let us make us a name, lest we be scattered abroad upon the face of the whole earth. And the LORD came down to see the city and the tower, which the children of men had built. And the Lord said, Behold, the people is one, and they have all one language; and this they begin to do: and now nothing will be restrained from them, which they have imagined to do. Go to, let us go down, and there confound their language, that they may not understand one another’s speech. So the Lord scattered them abroad from thence upon the face of all the earth: and they left off building the city. Therefore is the name of it called Babel; because the Lord did there confound the language of all the earth: and from thence did the Lord scatter them abroad upon the face of all the earth.

Any attempt of improving physician-patient relationship and of bridging the communicational gap between the two entities must necessarily consider the longstanding barriers of spoken and written language, and the unconscious influences (as Lacan would argue) behind language and behaviour.

In the context of Narrative Medicine, whose mission is to give voice and dignity to patients’ inner experience, the analysis of linguistic style is extremely relevant in interpreting personal patient stories which represent the individual’s way of coping with the disease.

Patient narratives are fraught with emotions, personal anecdotes, considerations, fears, hopes and fantasies expressed through a plethora of idioms, expressions, and symbolisms belonging to the baggage of each patient’s personal background. In many cases they are expressed with such picturesque descriptions to the point their credibility. Indeed, patients’ narratives have also been termed by some as “factions” [1], combining a component based on core of true facts embedded within a second component of falsified perception of reality, which has eventually led to the creation of the appellation of faction illness narratives.

Thus, because patients are accompanied by the hovering ghost of an everlasting disease, or the menace of death, can we authentically consider all patients’ stories credible?

As narrative medicine has been developing over the years, we have seen the establishment of an etiquette, a sort of globally accepted rule, to honour the patients’ stories of the disease —whatever the stories narrate— to safeguard and legitimate the patient’s voice.

From a linguistic point of view, it is interesting to notice that linguistic styles used in patients’ narrative fall within a specific clusters as that proposed in 2001 by Bury [2], who evidenced the six different styles: military/heroic, tragic, disembodied, romantic, ironic/comic, didactic.

As an example, let’s peruse the reactions of some physicians upon reading 121 stories of patients with multiple sclerosis. The narratives were a collection of the patients’ experiences beginning from the moment of the breaking of the body’s health status to present; they were formulated in a romantic style, with an open flow of emotions and sturm und drang. I had thus proposed to attribute such collection a subtitle Amor Omnia Vincit (Love wins everything): despite the patients considering it a beautiful and appropriate title, most of the physicians who participated to the project had banished it and considered it unfitting.

Yet, in reading these 121 narratives, love emerges as an astonishing core of truth, coloured by strong emotions: once the diagnosis of multiple sclerosis was communicated, the main picture portrayed appears that their natal family or the family that they will be able to build are a continuous and everlasting loving and affective harbour to their disease. Indeed, not surprisingly, in response to the prompt that introduced the section of open text… “what did you have to give up on”… And “what did you get back,” many people answered that they gave up on physical ability, in sports and movement, but that they gained back love, spouses, wives, and children… solid families. Love and affective boundaries.  And the deepest sign of change in mind-set they report is represented as their gained skill of understanding others better. An expansion of Empathy, but not that learnt on a didactic manual, Empathy with capital letter— that one which is possible to achieve only through the direct experience.

My romantic title Amor Omnia Vincit proposed for this collection of stories —which I believed mirrored the style used by most of the patients in this condition— was considered too sensational by the scientific community: Hence we negotiated to came up with a title that satisfied both patients and physicians: Enlightened stories of people who live with multiple sclerosis. However, this was accepted by the physicians on the Board, not by the patients who were very glad to be promote, at least on paper, this energetic loving feeling. So, which were the main doubts on behalf of the physicians?  From their point of view, there can be no true “Honoring the stories of illness” [3]: they cannot accept the patients’ narrative styles which appear too romantic, far from the scientific language and style they are accustomed to, like in the metaphor of the Tower of Babel.

Now, turning to another aspect, let’s analyse the current language used by physicians, across all specializations, in the context of Evidence Based Medicine (EBM).

At a first glance, the language, as seen according to Bury’s classification, seems didactic: very plain, no emotions, no inner realms, no disembodiment, or spiritual drive, and, above all, no humor. Numbers, methods, facts, figures, and references. A very dry and concise text using English as vehicular language, similarly to Latin used by the Church and Political Power in the past. A scientific paper should be easy to understand by the scientific community of the global world, so that colleague clinicians can reproduce the knowledge gained in the research being reported. No —or very little— room for intangible knowledge to be transferred — a weak spot as recently denounced in the Economist of October 2013 [4].

At a second glance though, if we delve deeper into the language of Evidence Based Medicine, beyond the didactic style surface we encounter a hidden layer composed by the military/heroic style, with some flares of a tragic style: there is always an explicit war between the weapon —the treatment used in Group A of patients— versus the weapon treatment—alias Golden Standard— to defeat or overcome patients of Group B. Thus the paradigm appears to be conflict of a battlefield: in her treatise Illness as Metaphor, Susan Sontag clearly evidenced [5] the crusade language against AIDS and Cancer used in medical reporting. Here, I will attempt to transfer such military metaphors to the context of Evidence Based Medicine.

Aside from numbers, the words of EBM are few: patients are be envisioned as enrolled “soldiers” as belonging to an army, and are equipped with weapons: in the feat against what? The meta objective is fighting the disease, but the current objective of each trial is to defeat the opposite group.

And what about the use of the term “cohort” in epidemiological studies, a word that has always been used to define a group of soldiers? And again, “drops-out” in surveys? The same term used in competition, and failures cases. A very military language, with some nuances of heroic language when referring to the survivors and the cases of death. Yet, with few emotions behind it: it’s like the Caesarian statement, Veni, Vidi, Vici [6] – I came, I saw and I won.

In brief, EBM presents a surface layer featuring a didactic language cover a deeper core-level canvas characterized by a heroic plot, and a battle with no room for romantic or spiritual flights. The restitution [7] of health, or of a stable life conditions is a continuous series of battle trials starring diagnostic defences and treatment weapons to win the final war.

This is probably one of the possible reasons behind such a difficult alignment between the languages- which mirrors the mind set of the physicians (very logic and sharp, closed to the medical regard of Foucault),  and the language used by the patients’, reflecting their mind set of emotions, hopes, love, attachment, fears. Other explanations might be found in the sociological and historical venue, for which the health care system and in particular the schools of medicine developed in the centuries also over the wars, and had a very strict hierarchic code inside.

So, how can we combine this Tower of Babel and join both the misunderstood and rejected patient’s language with the physician linguistic style? Had there ever been a common language between patients’ and physicians before the building of the Tower of Babel? Had there ever been a golden age of better communication? In the book of Genesis, it is told that people used bricks instead of stone; showing a  technology is in an expansion rate with a  price to pay which might be the shrinkage of the language of the souls, the language of emotions. However technology now is there, a matter of fact, and it cannot be denied in our contemporary age, especially in medicine. The archetype of the Babel tower reminds us of the everlasting feat between the innate emotional language and the technological languages that have brought complexity and somehow clouded the social relationship among scientists. In the Babel archetype, there is a heroic tension of challenging the current situation, the denial of the easiness of having a broader, more inclusive, common language to allow the alignment among human beings. God came and confused the languages merely because human cultures and trades and crafts were transforming men [8], the more they got specialized the less they were prone to be understood by the other communities.

Should we accept this Babel of styles between physicians and patients, this city and confused medley of sounds? Couldn’t we hope for a better semantic alignment, a line which trespasses and links the patient’s narratives and the physician’s peer reviewed publication?

Indeed, there are some love opening which may sound s exaggerations in the Amor Omnia Vincit collection of the 121 patients with multiple sclerosis: physicians behave cautiously in front of this language as patients might suddenly relapse the day after, and fall in a depressive phase where no love is capable of curing their disease. This is what physicians fear, they have declared it; however it is the doctor’s fear, not the patients’. It could well happen that physicians who at first glance reacted impulsively pushing off these romantic stories, one day find benefit from this language, opening their military, heroic style to a less technological and more emotional language. In an ideal world even in the peer reviewed journal, where the language is so for skilled people, representing a cryptic military code (jargon) just for the trained professionals of the trade, there should be room for other styles of expression, a humbler language which is able to explain and to touch the inner realms of the essence of living with a chronic condition. And on the other hand patients’, right through empowerment, and activism to patients associations, could learn always more and more about how to become knowledgeable and able to treat their disease, but without losing the skill to talk about their daily living, with spiritual belief, of with irony if this is one of the best key to cope with a disease. In fact, it has scientifically been proven that a sense of humour releases endorphins. Although it is difficult to identify a single pattern in patient narratives, we can see some trends among age groups: younger people use a very ironic, humoristic style, whereas adults facing a chronic conditions are more equipped in using different registers, and elderly with cancer are more attached to a disembodied spiritual language.

A balance could be found, with no unsourmountable walls about the different styles: just using mere reflections to understand why some language styles are used more frequently in specific communities of practice and of being. The Tower of Babel is one of the most beautiful metaphors to express the possibility and the complexity for human kind to interact though language.

References

[1] Shapiro J., 2011, Illness narratives: reliability, authenticity, and the empathic witness.

[2] Bury M., 2001, Illness narratives: fact or fiction?

[3] Charon R., Honoring the stories of illness

[4] The Economist, Why science goes broken, ottobre 2013

[5] Sonntag S., 1978, Illness as metaphor

[6] Caesar C.J., De bello gallico

[7] Frank A., 1995, The wounded storyteller

[8] Dante, De vulgari eloquentia, cen XIII. Un ringraziamento a Francesco Varanini per la sua interpretazione della lettura di Dante della Torre di Babele: http://www.bloom.it/vara68.htm

 

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Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

One thought on “About doctors’ and patients’ narrative style in writing about disease and illness. The Tower of Babel.

  1. This is a wonderful and quite remarkable article. I haven’t come across the metaphor of the Tower of Babel before in connection with doctor-patient communication, although it is so appropriate. The story of how physicians couldn’t cope with romantic narratives of MS is very revealing. It also makes a fantastic contrastwith the hidden heroic and military narrative underlying EBM. A highly original contribution exposing the metaphorical substrate of the stories that patients and doctors offer to each other.

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