Rivista per le Medical Humanities

Elio Franzini
rMH 38, 2017, 13-15

Unrepresentability of feeling

Can everything really be represented? Are there any limits to representation? The author’s answer is that not everything can be represented, because there is a need to put some limits to “exhibition”: there are concepts, notions, and images that, by their own presence, sensitive evidence, and affective pregnancy, seem to “reject” a representation precisely because what they show us is not just an invisible reality rich in meaning, but also a universe of pain that may be wished to remain a private space. There are affective contents so rooted in individual subjectivity, and so deeply constitutive of the “invisible” psychology of the subject, for which – perhaps – we had better avoid looking for images, albeit aesthetically valid, with the purpose of representing them. Feeling, which establishes with artistic forms a non-representational bond, as well crossing manifold representative and expressive contents – taking shape in the latter, yet without ever exhausting itself in them – is an attitude that bears within it a cognitive component bringing with it intelligence, and imagination, while rejecting lyrical ecstasies and being suspicious of everything that wants and demands a “exhibition”. To seek in the unrepresentable the authenticity of feeling is tantamount to declaring its lack of topical interest, along with its labyrinthine and doubtful character.

Nicoḷ Saverio Centemero
rMH 38, 2017, 17-20

Beautiful images of suffering: storytelling

Is it ethical to take beautiful photographs of suffering people and observe, thanks to them, the pain of other human beings? This is precisely the question to which the author of this essay tries to give an answer. The starting point are the pictures of photographer Jacek Pulawski, published in the number 36 of the Journal for Medical Humanities. Thanks to his experience as a physician at the sickbed and passion for the writings of those photographers who, throughout their career, have immortalised suffering in all its forms, the author gives us a key to interpretation of his own. Although we let ourselves be humanly moved by the beautiful images of suffering, they should also urge us to do something tangible, as is the case for the doctor in front of the suffering of his patients. It is therefore the action, the reaction they spur in those who look at them, that makes certain photographs necessary. The focus then shifts, in the second part of the article, right to Pulawski’s shots. In these, it is the centrality of the patients’ gaze and the carers’ hands, two key elements in the care relationship, what, according to the author, emerges most. After a quotation from the famous American photographer Steve McCurry, which is useful to reiterate that it is the responsibility of the one who takes the photo to be able to convey suffering through his shots, in the final part of the article the author writes again about himself. Describing the feeling of déjà-vu experienced when looking at a photograph in the portfolio, which is able to evoke in him W.E. Smith’s most famous shot, Tomoko Uemura in her Bath (1971), he reiterates that this almost magical power of the photographic medium, merely serves to universalise suffering, starting from the single image, to invite anyone who looks at it to take action.

Roberto Malacrida
Federica Merlo
rMH 38, 2017, 21-30

Instant and destiny. Interview with Ferdinando Scianna

The sense and responsibility of the photographic gesture are the actual focus of the interview with one of the most famous Italian photographers, who started his career in the 60s telling by images the Sicilian culture and traditions of that time, then working in the fashion and advertising industry, and finally being part, since 1982, of Magnum Photo, one of the most prestigious photographic agencies worldwide. Through dialogue, Scianna’s attention for the moment emerges, i.e. for the moment in which something is organised in the world in order to produce meaning, both from the point of view of forms and of storytelling, where – according to Cartier-Bresson’s words – a sort of alignment takes place between eyes, heart and mind. A characterisation of the photographic gesture also emerges as a gesture that, at the same time, requires awareness, as well as being performed in a sort of trance: a gesture that requires openness, willingness to what is happening, renouncement to interpose too much knowledge, too many intentions, and too much will between oneself and reality, because this would precisely lead you to run the risk of missing the moment. When it comes to taking a picture, however, you do need to be ready for chance. For only under this condition, while taking a picture, a divinatory instant can occur in which every element, though apparently casual, turns a story into destiny. However, when the photographer’s work – and in particular the reporter’s – leads him to cross individual and mass pain, the question of responsibility arises strongly, and the doubt about the usefulness of pain representation arises as well: do images really need to make people aware of other people’s suffering? This is one of the highlights of the interview, to which Scianna responds by retracing his existential path: from youth, when, ideologically motivated, he thought to be able to change the world through his photos, to the time of disenchantment, in which he no longer thought about photography as being enough to improve the world. Yet, he continues to think that bad photos make it worse, so the photographer’s duty remains, in any case, to try   and take good photographs.

Roberto Malacrida
rMH 38, 2017, 31-35

Look and dignity.

The essay presents an interview with photographer Katja Snozzi, born in Locarno in 1947, who grew up between Kenya, German-speaking Switzerland and Ticino. She is one of the first female war reporters from countries such as Rwanda, Somalia, Lebanon, and Pakistan, who in recent years has focused on portraiture, as evidenced by a recent publication that presents a hundred faces of Swiss centenarians and ultracentenarians. The dialogue is centred around the theme of the look, observation, filtered by the photographic lens (“The camera protects like a wall and separates as a filter”), of vulnerable subjects – ranging among the various contexts in which Katja Snozzi carried out her work. The interview focuses on ethical issues, with respect to which the author’s response consists in passing the responsibility on to the photographer’s hands: “It is the photographer himself who defines ethical limits”, both with regard to what can be represented, and, for example, to the multiple possibilities of manipulating images.

Brenno Balestra
rMH 38, 2017, 59-61

Dying in hospital

Today, most patients die in hospitals or nursing homes, even though a great majority of the population would prefer to die at home. Research shows that despite treatment, several symptoms in end-of-life cases (such as pain, dyspnoea, anxiety, etc.) are not as optimally controlled as they could be. Analysis of the fit-Study – a prospective study in Ticino’s hospitals over the last 48 hours before death – confirms that there is room for improvement of end-of-life care. It is crucial to improve access to palliative care and to extend it to patients with conditions other than cancer. In fact, data show that patients with end-organ failure and chronic disease generally receive lower quality or late end-of-life care as compared to patients with cancer. Hypotheses point to a potential reluctance among health care staff and patients’ relatives to accept impending death and provide adequate palliative care instead of other more “aggressive” forms of treatments in these conditions.

Claudia Gamondi
rMH 38, 2017, 62-64

Dying at home

The primary commitment of the Hospice and Palliative Care movements has always been to respond to patients’ demands in relation to their needs and, not least, their preference with regard to the place of death. As literature shows that patients often prefer to die at home, especially in some Anglo-Saxon countries, a reversal of tendency has recently been observed, which sees an increasing number of patients in the process of being taken over by the palliative care service, who end their life at home. This ongoing process converges with the global need to reduce the costs to be borne these patients during the last period of their life, which are almost always very high. In the event that it is not possible to allow them to stay at home, “less technological” and more homely care environments are made available to patients, where high or futile costs are less likely to arise. The reasons that lead the patient to want to stay at home for as long as possible are to be identified within four main domains, namely: family resources, body care, the experience of the presence of home help services and existential expectancy. Patient preference then changes over time, depending on whether it is expressed in ideal conditions, i.e. when the individual is still healthy, or in real conditions during the course of the disease. Other variables that come into play in the decision-making process are socio-economic conditions, ethnicity, and residence (in an urban or rural environment). However, we should not underestimate the impact both on the family involved in the patient’s care and on the “home” in which these treatments have been provided: tensions are likely to arise that radically alter the physical and socio-emotional meaning of the home for the family members during the bereavement period.

Pierluigi Quadri
rMH 38, 2017, 65-68

Is there still a "natural" death?

While it is relatively easy to define “natural” death as the event that puts an end to a genetically determined life cycle and expresses the extreme arrival point of a physiological ageing, it should also be noted that today its frequency has become totally negligible, because people do die in old age, and even well on in years, but not of old age, since the advanced age increases the general morbidity and involves a lowering of the mortality threshold, making the individual more vulnerable even to diseases of relatively limited seriousness. Furthermore, in the essay some reflections are developed on the historical comparison of the concept of “natural” death with respect to society, medicine, and the individual. Especially during the twentieth century, we witnessed a removal of death and its rituals from the public scene and the progressive confinement of illness and death within hospitals. Several studies show that a high percentage of healthcare costs are invested in treatments for the last year of life. This medical activism does not even spare very fragile subjects. It is legitimate to wonder to what extent this can be satisfying in terms of improvement of the quality of life and palliation of suffering.

Fabio Pusterla
rMH 38, 2017, 69-74

Poetry and bereavement, poetry in the face of death

The text proposes a quick review, retracing the ancient relationship between the poetic word and the experience of death and bereavement, reasoning on the fact that the experience of death is only possible from outside: we witness death, but we do not experience it on ourselves, as we can do instead with pain, illness, and discomfort. In addition, if obviously the dead cannot speak, while the living ones are instead those who witness dismayed their passing away, it will mean that, in a sense, the experience of death does not so much concern those who die, but those who see others die and suffer for this. Poetry, therefore, represents the point of view of the living ones, their nostalgia and grief for their loss, and above all their conscience, lucid and lost at the same time, of death and of its inevitability. The author’s reasoning then focuses on a memorable verse by Hölderlin (Was bleibet aber, stiften die Dichtern), and then takes into account some contemporary authors (Giorgio Orelli, Philippe Jaccottet, Cristina Alziati, Bernard Chambaz, and Piergiorgio Morgantini), proposing and commenting on each of them some poetic examples and distinguishing between some types of pain and bereavement. Finally, some special considerations are dedicated to the less bearable deaths and losses, those related to children and suicides.

Graziano Martignoni
rMH 38, 2017, 75-85

The dying death

Today, death is increasingly reduced to mere biology, to sociology of life cycles, without any longer that “symbolic reserve” that placed it in a horizon of meaning and assigned it the function of a symbolic operator, capable of guiding and steering life. Today, it is death itself that is dying: in its being concealed, in its being a solitary and privatised reality, so de-socialised, desacralised, de-ritualised; in its being without stories, in the loss of its openness to the beyond, and ultimately reduced by telos a mere finis. Death obliges us to constantly question the meaning of life, for it is to life that death belongs. Death is our last and first exile. Starting from this being pilgrims in life, man takes care of himself and the others, becoming a guest and a hospitable host at the same time. Keeping somebody company along his way to death, the fact of stopping – often helplessly – on a threshold of mystery, is indeed one of the most radical forms of hospitality. Without that first and last exile, which is imposed by the journey of life as such, there might be no true hospitality or true care. Death is the unthinkable, which it is instead necessary to think about. But how to think about death? How to find the necessary wisdom that guarantees a healing word about dying? Care does not belong to a technique, but basically to the virtues of wisdom. The technical gesture of healing or palliation is not enough: what a dying man is looking for is, in fact, a word of truth. Death does not close; on the contrary, it opens to infinity, and it is precisely this infinite that should be dealt with by the end-of-life care, not only through gestures and words, but also through the depth of welcoming silence.