Critical Reviews in Oncology/Hematology 84S2 (2012) S1–S4

Medical Humanities: a question of style

Graziano Martignoni a,b, Nicola Grignoli a, c, *, Valentina Di Bernardo a,Martina Malacrida a, Guenda Bernegger b, Fabrizio Barazzoni d, Roberto Malacrida a

a Clinical Ethics and Medical Humanities Interdisciplinary Research Institute, Ente Ospedaliero Cantonale andSasso Corbaro Medical Humanities Foundation, Bellinzona, Switzerland

b Medical Humanities Observatory, Department of Business and Social Sciences, University of Applied Sciences and Arts of Southern Switzerland,Lugano/Manno, Switzerland

c Psychiatry Consultation Liaison Service, Organizzazione Sociopsichiatrica Cantonale, Mendrisio, Switzerlandd Medical Division, Ente Ospedaliero Cantonale, Bellinzona, Switzerland

Contents

1. Beyond bioethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S12. The art of getting close in a complex terrain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S23. How do we stay at the bedside? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S24. Medical Humanities for an idea of mankind . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S3Reviewers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S3Conflict of interest statement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S3References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S4Biographies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . S4

Abstract

The Medical Humanities go beyond bioethics, cross over multiple disciplines and represent a new way of perceiving, seeing and thinkingabout illness. They represent a different view that gives value to the human side of treatment, that recognizes in self-narration an authenticand living foundation. Today, the technical aspects of medicine need more than ever to be accompanied by content derived from the arts andsocial or human sciences that focus on other, but not less important, aspects of being sick or in health. Everyday clinical practice in a “MedicalHumanities style” can change the encounter with patients and their families, as well as the relationship with one’s self and with colleagues.Adopting this wider perspective allows us to go further than contemporary biomedicine and continue to explore a unique understanding ofmankind.© 2012 Elsevier Ireland Ltd. All rights reserved.

Keywords: Medical Humanities; Medical ethics; Quality of care; Social sciences

Beyond bioethics

The Medical Humanities can flow through and over thespaces and details of life, as well as its turmoil – whichcan bind or destroy a helping relationship or treatment. Thisis possible because the Medical Humanities belong to therealm of “fluidity” [1]. They are the children of Hermes, themessenger, the one who lives by and through combinations,mixtures and correspondences.

* Corresponding author at: Clinical Ethics and Medical HumanitiesInterdisciplinary Research Institute, Ospedale Regionale di Lugano, ViaCapelli, 6962 Viganello, Switzerland.Tel.: +41 (0)91 811 61 11; fax: +41 (0)91 811 66 60.E-mail address: nicola.grignoli@eoc.ch (N. Grignoli).

The Medical Humanities took on their contemporary formin a religious setting in the United States at the end of the1960s [2]. Their declared purpose was to humanize medicinethat was experiencing a techno-scientific revolution, that wascharacterized by a progressive increase in the number ofmachines at the bedside of the patients. While the diffusionof the Medical Humanities owes much to the theologianEdmund Pellegrino and bioethics, our reflection here pointsto other areas that reach beyond bioethics. In our view,bioethics alone does not adequately contain the risk of losingthe human side that medical treatment may cause becauseof the constant deeper breaking down and analysis of thosethat are ill. Given this unfortunate, yet natural consequence

1040-8428/$ – see front matter © 2012 Elsevier Ireland Ltd. All rights reserved.

G. Martignoni et al. / Critical Reviews in Oncology/Hematology 84 (2012) S1–S4 S2

of wanting to improve the efficiency of treatment, andin order to address the vulnerability of man caused bydisease, the Medical Humanities attempt to take advantageof the cultural contributions from, for example, philosophy,anthropology, sociology, literature and psychology. In theirrecent history, the Medical Humanities have often beenconfused with ethics, or reduced to simple techniques ofgood communication between caregiver and patient. Instead,in our view, they represent a way of perceiving, seeing andthinking about illness, that can be embraced by scientificrationality as a symbolic aspect that may guide the treatmentprocess.At the center of the Medical Humanities, there is self-

narration, telling one’s story, about one’s suffering, theanguish and restlessness [3]. They represent that transdisci-plinary view, that gives value to the human side of treatment,that recognizes in self-narration that authentic and livingfoundation, from which different types of knowledge derivetheir own purposes. A living foundation that precedes moraljudgment – stories, we can say, came before ethical theories.Following the great literature on illness [4] found in

Mann, Dostoyevsky, Tolstoy and Camus, today there isconsiderable attention being paid to cinema, since cine-matographic narration is probably the most direct vehicleof communication, thanks above all to moving pictures.Pictures have a double role. On one hand they allow thefilm director to tell a story, on the other, they cause sensationsand emotions to be created in those that watch and listen [5].The Medical Humanities then do not define a new professionor discipline, but open up challenges of understanding andinterpretation of illness itself, and thereby take a proper placein the process of diagnosis, prognosis and therapy.

The art of getting close in a complex terrain

The Medical Humanities represent a tool for listening andbeing present, in order to understand better the feeling of“exile” that illness produces in people. None of us, neitherpatients nor caregivers, are at home when faced with illness,whether when we find ourselves in bed or at the bedside ofthose that are ill. Clearly, we must keep the event of theillness and its treatment at the center, as well as the spaceand time in which the events occur, all of which become partof the life story of the ill person. In other words heart diseaseis not just heart disease, just as liver disease is not justliver disease – they are much “more”, because the “more”is always connected with the occurrence of the illness itselfand with the existential damage the illness causes. Becauseof this, it must be properly respected when consideringdiagnosis and treatment.The desire on the part of caregivers to work with and

determine the meaning and value of theMedical Humanities,is born of the desire to give better care to the sick, to treatpeople more humanely, through concern for their dignityand fragility. This concern, that has its roots in the historyof medicine and all its battles, gives credence to the idea

that theMedical Humanities are historical sciences, that havecontinually confronted tradition and the conquests and limitsof medical thought. They are, naturally, also ethical sciences,that explore the values and choices of caregivers when facedwith the imponderable, the unavoidable, and at times, thevery limits of life. All this, while knowing how to shape andaffect benefits and autonomy for the patient as well as doingwhat is right for the community as a whole.Right at the moment of the illness, which above all other

things is a time of existential crisis and/or catastrophe,the Medical Humanities attempt to understand better thepsychological functions and the relationship between themind and the body, in their most hidden and most painfulintricacies. In doing so, they emerge as the means to realand proper exploration of terrain, and yet must abhor overlyrigid conceptualizations and disciplinary close-mindedness.In any case, the ground is slippery, because the MedicalHumanities do not easily fit into rigid categories, they arenot a single profession. It is easier to say what they are not,or what they may not be reduced to, than define their limits,or specify their contents. They look for, at the bedsideof the sick, the tracks of existence, not data or proofs.With a critical approach, the Medical Humanities will, attimes, emphasize the very heart of medicine itself, withoutcreating rigid categories. They can, on behalf of caregivers,provide an identifying function, strengthening feelings ofresponsibility, in a broad sense, with regard to their ownactions, by encouraging self-interrogation. How do I fit whatI do into the society I am part of? What values do I respector not respect through my actions? What am I really doingat the moment in which I perform certain types of medicalacts?What aremy reference points, implicit or explicit, whenthinking about my work?In addition to all of this, the Medical Humanities bring

a “figurative function” [6] along with them, literary, philo-sophical, historical and even artistic and cinematographicdisciplines all offer images to caregivers, that are more orless in common, that can represent suffering and treatment,in all their historical and cultural variations, as well as waysthat both patients and caregivers can view themselves, andtheir relationship one with the other.

How do we stay at the bedside?

The patient is at times very near, we bend over to see howthey are, we adjust the bedsheets, we examine their body, welook into their eyes, we notice how they smell. Every day,in the ward, in the clinic, we make contact with the sufferer,the sick, the person that hopes, the person that recovers, andwe enter their intimate spaces. And we become involved. Wesympathize, we share a living moment, a feeling or a wish.When wemeet a vulnerable person, which is necessary whenwe help or treat someone, we are challenged as everythingcomes into play [7]. The profession of treating the sickmeans that the caregiver must face on a daily basis, notonly the one in need, but also him or herself, with all the

G. Martignoni et al. / Critical Reviews in Oncology/Hematology 84 (2012) S1–S4 S3

physiological and psychological intricacies that entails. Welearn to live the surprise of encountering and discovering thehumanity of every one involved, but also the need to controlandmanage reactions of revulsion and escape, that, naturally,each of us experiences when confronted with the frailty ofthe body, and the spectre of death. This work is not easyto learn, and so the work of caregiving envelops the life ofthe caregiver. Being at the bedside can become dangerous inthese cases, as it can affect the quality of the treatment itself.In medical specializations that face incurable conditionsand the attendant existential threat, such as in oncology,caregivers can be tempted to stay clear or turn away from themore difficult patients and avoid difficult responsibilities [8].In addition, when they lean on the patient’s bed, at timesthey don’t do it to make contact with the patient, but becausethey are exhausted themselves. In these chronic situationsof emotional stress, working in hospital wards that have aproven risk of burnout syndrome, such as in hematologicaloncology [9], it is surely important to seek out a support, atan individual level as well as a group level [10]. And yet, itis equally important to regenerate the proper sense of one’sown profession, by leaving the clinical environment.It appears to be indispensably the healthy choice to take

time and try to assimilate what humanity, cultural and artistictraditions, and traditions of thought have been able to collectthrough the ages on the themes of treatment, illness, lifeand death. In encountering our finiteness, we see the needto develop medicine beyond its merely technical aspects, aswell as the practice of an art [11]. Faced with existentialquestions it is possible to refer to a manual, that is able toshow us the way, and yet most of the time, what is neededis finding the personal pathway that must be taken. In orderto do that, we need to create a framework and stimulateour imagination. Here, those that can help us are the artists,the poets, the thinkers, those that are very far from and atthe same time so close to our world of health and illness.For the patient, as well as for the caregiver, when facingthe problem of our finiteness, there needs to be space forfantasy, for traveling through history and time, in order tocatch a glimpse of the drama or the “tragedy”. Facing thedespair, while moving toward loss, mourning, rebirth andrecovery, it is essential that modern biomedicine maintainsa sense of dialogue that intertwines the threads of not justthe patient’s case history, but also the human episodes thathave characterized these experiences, and then, finally, putthem all in contact with each other. In this understandingof treatment, that is based on building something in acommunity, the true sense of treatment can be found againand regenerated.

Medical Humanities for an idea of mankind

Medicine, that oscillates constantly between an art form anda technique, has always been facedwith dilemmas such as theliberation of man from illness, its own and man’s salvation,

in order to give direction and deeper meaning to positiveknowledge and the gesture of healing.In modern medicine, the signs of distress, and the knot

that being at a loss for words causes, in medicine’s thoughtand practice, are on the rise in both modern medicine’sself-understanding, its techno-therapeutic procedures, andeven inside the “social perspective”, or how society viewsmedicine, which feeds and legitimizes it from the outside.Modern medicine therefore appears as a sort of “victor undersiege”, within the very general crisis of modern rationality,a prisoner of the pathways that reveal themselves becauseof its searching, that inwardly explore the hidden truthsof an organism, and externally deals with the pressingquestions that society and the general public ask. Often,the two sides clash. An implicit trust in modern medicine’s“unlimited” power is contrasted with public aggressionagainst the organizational and administrative framework andagainst those in that framework. The Medical Humanitiesare not merely an ornamental form of treatment, they arenot just a way of making the caregiver–patient relationshipmore humane, they are not simply examples of rightbehaviour, and they are not just techniques for improvingcommunication. They represent practical and theoreticalknowledge, able to bring to the forefront, in the veryexperience of illness, an idea of mankind, connected with ourdestiny and our destination, somewhere between biology andtranscendence.In conclusion, the Medical Humanities are therefore,

above all, a style [11,12], a spirit of things, within the actof listening, of making visual contact, of uttering words andmaking gestures, that require the presence, or rather, theabundance of all those things that are human and not human,that involves everyday life.We have attempted here to brieflynavigate around the archipelago of the Medical Humanities,and in doing so we hope to encourage thinking differently ,within the theoretical, methodological and clinical contextand framework of techno-scientific and techno-bureaucraticcontemporary medicine. The Medical Humanities, in thisway, internally indwell treatment, as a sort of immunityagainst the results of techno-science and against epistemic,interpretive and value-system challenges, and externally area constant act of vigilance on behalf of the human rights andcitizenship that are at risk because of illness.

Reviewers

Matjaz Zwitter, M.D., Ph.D., Institute of Oncology,Department of Radiotherapy, Zaloska 2, Ljubljana, 1000,Slovenia.

Conflict of interest statement

The authors confirm that there are no known conflicts ofinterest associated with this publication and there has beenno significant financial support for this work that could haveinfluenced its outcome.

G. Martignoni et al. / Critical Reviews in Oncology/Hematology 84 (2012) S1–S4 S4

References

[1] Martignoni G. Le Medical Humanities, un pensiero orientale?[The Medical Humanities, an oriental thought?] Rivista per le MedicalHumanities 2009;11:78–89.

[2] Spinsanti S. Una prospettiva storica [A historical perspective]. In:Bucci R, ed. Manuale di Medical Humanities, Rome: Zadig; 2006.

[3] Kleinman A. The illness narratives: suffering, healing, and the humancondition. New York, NY: Basic Books; 1988.

[4] Charon R, DasGupta S. Narrative medicine, or a sense of story.Literature and Medicine 2011;29(2):vii–xiii.

[5] Darbyshire D, Baker P. A systematic review and thematic analysis ofcinema in medical education. Medical Humanities 2012;38(1):28–33.

[6] Bernegger G. Le recit incontournable [The inescapable narrative].Medical Humanities in der Schweiz. Bern: Swiss Academies of Artsand Sciences; 2012. p. 25–30.

[7] Hirsch E. Traite de bioethique [Treatise on bioethics]. Paris: Eres;2010.

[8] Baider L, Wein S. Reality and fugues in physicians facing death:confrontation, coping, and adaptation at the bedside. Critical Reviewsin Oncology & Hematology 2001;40(2):97–103.

[9] Bressi C, Manenti S, Porcellana M, et al. Haemato-oncology andburnout: an Italian survey. British Journal of Cancer 2008;98(6):1046–52.

[10] Gilewski T. The art of medicine: teaching oncology fellows about theend of life. Critical Reviews in Oncology & Hematology 2001;40(2):105–13.

[11] Calza GC. Stile giapponese [Japanese style]. Turin: Einaudi; 2002.[12] Martignoni G.Medical humanities, uno stile per “pensare in altra luce”

[Medical humanities, a way to “think in another light”]. Rivista per leMedical Humanities 2006;1:25–31.

Biographies

Graziano Martignoni (Prof. M.D.) is a Physician anda Psychoanalyst, Professor at the Medical Humanities

Observatory of the University of Applied Sciences andArts of Southern Switzerland and Adjunct Professor at theUniversity of Insubria (Italy) and Fribourg (Switzerland).

Nicola Grignoli (Ph.D.) is a Psychologist practicingat the Psychiatry Consultation Liaison Service and atthe Psychopathology of Work Laboratory of Lugano,(Organizzazione Sociopsichiatrica Cantonale, Mendrisio,Switzerland), Research fellow for the Clinical Ethics andMedical Humanities Interdisciplinary Research Institute(Ente Ospedaliero Cantonale and Sasso Corbaro MedicalHumanities Foundation, Bellinzona, Switzerland), Memberof the Head Office of the Swiss Society of BiomedicalEthics.

Roberto Malacrida (Prof. M.D.) is the former Chief ofthe Intensive Care Unit of Civico Hospital of Lugano (EnteOspedaliero Cantonale, Bellinzona, Switzerland), Directorof Clinical Ethics and Medical Humanities InterdisciplinaryResearch Institute and of the Rivista per le medicalhumanities (Ente Ospedaliero Cantonale and Sasso CorbaroMedical Humanities Foundation, Bellinzona, Switzerland),Associate Professor at the University of Geneva and AdjunctProfessor at the University of Fribourg.