“We think we are eternal – that is our misfortune. In school, they don’t teach us how to die…”
Franco Battiato
Genova Today, May 23, 2021
I want to use this quote from the unforgettable maestro Franco Battiato to introduce this contribution.
I have been involved in Palliative Care at home since 2016. Mine was not a gut choice, but a reasoned decision, matured after twenty-two years of honourable service in public and private hospitals, always in an intensive care setting.
Although the path I took was the same as many other colleagues, the transition is not as natural as it may seem. While there is the undoubted advantage of bringing with you a wealth of clinical, nursing and pharmacological knowledge, if you want to enter fully into what palliative care is, you need (and this is the most arduous challenge, but also the most stimulating) to make a full and complete change of mentality. We must definitively bury many of our convictions, such as the fact that it is no longer we who decide, but the patient and his or her family (in reality, this should be the golden rule of every health professional in every field, but we often forget this), or that our goal is not to search for a diagnosis and a cure, we are not interested in the cause-effect relationship, we no longer have to search for the rational in what we do, because there is nothing rational in certain cases and in certain situations. And again, we no longer have to worry about giving ‘good news’ or worse, petty hopes, because it is not hope that palliative care patients need, and I would venture to say that hope, in general, is a concept to be handled with extreme care. Let us try another word, awareness.
In short, the ball passes out of our hands, so to speak, and we find ourselves deprived of all our arsenal, made up of authority, knowledge, technical language and more or less advanced instrumentation that we have accumulated, convincing ourselves that our purpose was to save lives. In palliative care there are no lives to save… or are there?
We have gone from taking in desperate people inside our fortress full of instruments and technology, with no one left but us as the last bastion to hold on to in order to hold on to life, to going to the homes of men and women whose lives are slipping away like water through their fingers, to convince them to seek treatment… To seek treatment for a disease for which there is no possibility of recovery.
I apologise if my description may sound over-emphasised, theatrical or sectarian. None of this. Don’t hold it against those (of whom I was a member until ten years ago, with full pride!) who perform their duty with professionalism, commitment, ethics and deontology, in intensive care units and emergency departments. They are and remain fundamental. Although some foolish people think it is fashionable today to attack doctors and nurses, I want to believe that the ‘healthy’ part of the citizenry still has in its eyes what was done at the time of the pandemic. In the response to the spread of COVID – 19, the essence of us health professionals was seen.
I said, that I used somewhat colourful tones, because I think the narrative should be a bit like philosophy, i.e. with a certain degree of provocation. Keeping this tenor, I go on to say that the most consistent discovery in the transition from intensive care to palliative care has been that, with patients now, I have to talk to them! And not only with them, also with family members. We are no longer in a ‘protected’ environment where we can exercise dominance, or entrench ourselves behind technicalities or the excuse that we are too busy at the moment. We are in people’s homes, where no matter how authoritative and competent we may be, we are still ‘guests’. Sportingly speaking, we are always playing away.
Let us try to talk, then. What to talk about remains a sore point, because in the best of cases we are faced with those who know that they have little time left to live and are therefore deeply angry; otherwise, we happen to hear from those we are about to assist, who have not understood why we are there, and ask us when they will be able to resume chemotherapy because at the hospital, on discharge, they have not told them anything precise.
A number of clarifications need to be made at this point.
First: communication is not everyone’s art. It is not at all taken for granted (even though it should be) that a health professional, net of his or her specific skills, is able to communicate effectively, and it matters little if someone claims that communication is time for treatment.
Secondo: parafrasando nuovamente Battiato, esiste un fattore socio–culturale che ha radici antiche e molteplici, fortemente radicato nella nostra civiltà – a mio modesto parere particolarmente in quella occidentale – che si traduce in un curioso paradosso per il quale, a fronte di una risposta razionale e affermativa sul fatto che si è perfettamente coscienti della nostra mortalità, fanno seguito atteggiamenti, comportamenti e gesti totalmente antitetici.
Terzo: al fattore socio-culturale di cui sopra va aggiunta un’altra dimensione, ossia la trasversalità. Questo aspetto caratterizza la società nella sua interezza, e non risparmia nessuno, inclusi gli operatori sanitari. In sintesi, i curanti hanno le stesse fragilità dei curati. E su questo affascinante aspetto tornerò per chiosare.
In such situations, that traditional resources and skills are not enough seems at least self-evident. More is needed.
I have referred to challenges and in particular to the most difficult ones, i.e. those situations that force us to draw on all our resources: those that we have well established but also those that we did not consider as such up to that point, ending with those that we did not think we had.
Starting with the first, one above all for me, was dusting off the concept of the team. Rather than dusting off, it would be better to say rediscovering, or if you prefer, being in a team as you really need to be, without hierarchies, without emphasising everyone’s skills, scrupulously adhering to their roles and at the same time sharing them – together with their own skills and experience – with the other members, fully embodying the meaning of an ancient Indian proverb (Navaho, Apache… I don’t remember exactly) which states: “each one gives what he can and takes what he needs”.
As for the latter, I refer to the good fortune of having a fellow pedagogue, who passed on to me concepts like the here and now, like being in situations, the more difficult they are, the more you have to know how to be in them. Last but not least, the widening and making space to welcome all things within us, even the ugliest and let them settle, instead of closing ourselves off and stubbornly rejecting them. Because if it is true that a whale is too big to fit in a bathtub, if you put it in the sea it remains big, but it is much less cumbersome.
And to finish with unknown resources, in this case my greatest passion came to the rescue: literature. I have always loved reading, and over time I also started to love writing, to the point where it became a profession, which I carry out in parallel with nursing, without giving way to dualisms or contrasts. Both are equally mine, and neither of them I give up. It goes without saying that study and reading are indispensable for training and keeping up to date; the surprise was realising how much one can draw from fiction and novels, on a par with scientific texts and non-fiction. I am referring to thoughts, quotations, visions of great authors from the past, but also contemporary ones. I have found a hotbed of ‘new tools’ for talking to patients and families.
Examples abound. One undeniable instance is the contribution of Frankenstein by Mary Shelley and The Picture of Dorian Gray by Oscar Wilde in helping us understand what Battiato later summed up: that we were never taught how to die, and that is our misfortune. Consider how far ahead of their time Edgar Allan Poe was with The Tell-Tale Heart and The Cask of Amontillado, or Stevenson with The Strange Case of Dr. Jekyll and Mr. Hyde, in anticipating psychoanalysis and the treatment of mental illness. And why not draw a parallel between the concept of medical over-treatment and Shakespeare’s Much Ado About Nothing? And let us not forget the strength conveyed by Eduardo De Filippo in Napoli Milionaria, when he writes “ha da passà ‘a nuttata” (“the night must pass”)—a phrase that resonates with us professionals facing particularly demanding care situations, and even more so with the patients, for whom that night may pass without suffering… or perhaps be their last.
Using quotes, passages, and metaphors from literary works helps me simplify complex ideas, ease emotionally charged situations, and clarify the choices we make. This isn’t about language exercises or flaunting erudition. Literature and storytelling are powerful tools—an inexhaustible reservoir of words, ideas, sensations, emotions—and like art in general, they belong to everyone and can be used by everyone, not necessarily to cure diseases, but certainly to care for people.
I am not in a position to quantify the weight and importance of literature in the care of palliative care patients, nor am I able to say with certainty whether it represents a valid expedient in the field of narrative medicine, because I am facing this reality for the first time with this contribution of mine. What I can say, without a doubt, is that it serves me, to improve myself in my work.
Of course, talking about literature and fiction for a writer can also mean ‘discovering the side’.
Talking about oneself and one’s passions clashes with the maxim (or cliché?) that says: private and work should not be mixed, problems at home stay at home and vice versa those at work… But is this really true? Can one really believe in separating the two? It may seem simplistic what I am about to say, but we are not compartmentalised, we are a mixture, and being empathetic does not mean not understanding the feelings and suffering of those we are caring for, nor does it mean not showing ourselves for what we are: human beings, people, possessing specific skills and competences, but still people, just like those in front of us.
People, helping people.
Alessandro Bonet, nurse case manager, Home Palliative Care Unit – Life Cure