27 Apr 2022

AT (AND WITH) THE END OF LIFE.

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Elisa Magrinello, 33 years old, psychologist and psychotherapist, also works in the field of psycho-oncology and palliative care (supporting a person in their end of life, where ‘non-curable’ should not be seen as the same as ‘non-treatable’), taking care of the dignity of the patient and, as far as possible, of fulfilling their wishes. All this can take place in a facility or at the patient’s home. Touching, being present and listening are the fundamental components of this dimension where the word professionalism is intertwined with humanity. Elisa carries out her activity at private facilities in the province of Brescia and in Brianza.

There is no form of snobbery’ (A. Arbasino – Fratelli d’Italia)

What happened within you to bring you to do this kind of work so close to death, a dimension notoriously somewhat marginalized by our Western culture? What inspired you?

I got in contact with this world while volunteering in 1181 and during my internship in hospital psycho-oncology, where I often found myself facing sudden deaths in the ward without too many words and explanations and with scarce resources available – typical, in fact, of a culture that tends to put this aspect aside. All this stirred in me the desire to deepen that ‘elsewhere’ beyond pharmacological medicine, since I understood that medicines were not enough to manage the pain and silences in the ward. Physical pain can pass, inner pain cannot. These connections may be brief in time terms, but, given the circumstances, there is a sudden intimacy with disturbing aspects, and you realize that you need strong, adequate tools. So, I desired – and also realised – I could go beyond those largely passive moments (which are usually summarised in the classic saying, ‘there is nothing more to do’) where actually there is still a great opportunity – to be together in the here and now, in the essence of what happens (in this regard I recommend: The Present Moment in Psychotherapy and Everyday Life by Daniel Stern, WW Norton & Co). This is the fundamental thing that many times it is difficult to understand – the real challenge is to get to death alive.

How has your ‘being present’ to people living their end of life changed over time? What is your relationship with fear in these circumstances? Do you feel like you can keep the rightdistance? Do you feel that you are receiving something that enriches you? How can you balance the fatigue and enthusiasm that this work entails?

I feel like I am constantly tested, but the relationship with patients remains the same as on the first day. The risk of getting used to such harsh circumstances must be avoided, because this could result in taking the situation for granted – your experience may lead you to apply frameworks of action, losing sight of the specific reality of the situation and, ultimately, of the person. I think the dimension of fear is fundamental, but it is a fear that is linked to empathy – since you tune in with the other – and not to identification; you have to be able to maintain boundaries in the relationship and be sufficiently clear about where you are and where the person you are trying to help is. In these cases, you do not have objects to exchange such as drugs that, in their concreteness, symbolize and define a good part of the relationship; here, I would say, things get a little more complicated. My greatest fear is to make a mistake, also because the relationship may end abruptly and suddenly, with no coming back of the patient, and so I know that I can find myself alone with my mistake that will weigh my state of mind down. In these cases, I may feel as if someone or something has moved me to another room to take care of something else. I realize that I am constantly questioning myself, even after the death of the patient, trying to understand if I have done well, if I have made mistakes, if it was necessary to change something. This allows me not to take anything for granted, but to look for an ever new, more accurate approach. The psychotherapeutic relationship between therapist and patient may be unpredictable, given the complexity of the context and the innumerable elements at stake; but in these cases, you know right away that, in a relatively short period of time, death will come. And this is a characteristic that largely contributes to define the dimension of this work. Family members who come back for a greeting or to talk keep these little great stories alive. I may meet people who are angry and do not trust my work, while others rely on me. The effort is much, but you feel that what you have given comes back to you in a new form. You have to be very careful in reading such new forms when they arrive later (you stop, breathe, write what you have said during the meeting). There are times when dialogue flows easily, but, for example, when a drug is taking effect and the patient is sleepy, it is practically impossible to have a dialogue, and then it might be the right time to talk with family members.

I assume that like many of our colleagues, you have been trained and have drawn on different theoretical models over time. What are the main lessons you think you are carrying with you in palliative care?

In this context, I have built a multifaceted knowledge thanks to the life experiences of patients and colleagues. Through a psychotherapeutic psycho-body biosystemic approach (to deepen this topic, I recommend the following books: La terapia biosistemica of J. Liss and M. Stupiggia1 e Biosistemica: la scienza che unisce by P. De Sario and R. Fiumara2, both published by Franco Angeli) I was able to place the suffering of the body in a systemic perspective – mind, body and emotions are interconnected with one another in the individual and subsequently also between individuals. I work by focusing on the type of breathing the patient has; on body contact by touching their hands as a way of support and transmitting heat and concentration on the body instead of on thoughts; finally, I use with family members exercises to promote their self-expression, raise awareness and discharge anger. Understanding bodily empathy (those who follow a psycho-body approach are generally trained and accustomed to carefully observing the patient’s body: breathing, posture, energy distribution, with the possibility, sometimes, of feeling in their own body what happens in the other’s) allows me to be closer to the pain of the others and helps me to seek new ways for harmony. Through the post-graduate course in palliative care and psycho-oncology I have also learned integrated theoretical approaches such as Gestalt psychotherapy, where what is in the foreground and in the background move together and allow you to better understand some hidden situations that the disease tends to shape (even in the family relationship). For example, I may face a situation where everyone is strongly focused on pain, completely forgetting that, however, even in these cases you can do so much to improve the quality of life. Here, through the interview, I try to trigger this shift in perspective. Even the model of R. Torta that integrates the bio-psycho-social aspects (to deepen it, I suggest: Psiconcologia il modello biopsicosociale of R. Torta and A. Mussa, published by Centro Scientifico Editore) is useful to consider also the social dimension of the person, who appears detached and distant in the hospital room, but is absolutely present in his or her internal world. Keeping such dimension alive can be a source of relief.

Could you tell us about your emotional experiences linked to this reality, images that develop in your mind, atmospheres (the so-called psychic fields) that are created and that in your opinion are peculiar to the situation of the end of life? Dreams?

The doctor may risk of confusing identification(1) with empathy, which instead, as I mentioned before, must be kept separate. This is not easy because you can be very involved also from a visual, olfactory, and tactile point of view. There is a risk, like in a traditional therapeutic relationship after all, of introjecting too many parts of the other without being able to get out of it, or projecting them later in your own private environment. In some cases, I can be seen as the savior, the one who has the power to solve the problem, or as an enemy, because doctors and relatives confide to me and not to the patient. Certainly, there are times when people transfer the feelings they struggle to manage, anger for example. After the relationship has taken hold, dreams can emerge, and from the type of dream I can get an idea of the level of internal concern, while I usually don’t make dreams regarding this period of my life.

Since you work in this field, would you be able to say something, even broadly, about issues such as euthanasia and assisted suicide?

There is an intense debate right now about the rights to freedom. In order to have an idea on your own, I think it is necessary to pay attention to each event, to be in the relative life situation, full of nuances that make the difference. Too often people talk about it without knowing anything, basing on hasty judgments, uprooted from reality. I would like to draw attention to how much an aggressive medical treatment can affect the last days of your life. What I want to say is that when you face a complex situation you risk, as happens with medicine in general, to fall into a form of reductionism – that I would define as technological – that can have somewhat negative effects. A culture that struggles to cope with death inevitably shifts its gaze elsewhere, eventually turning (also) to machines. Trust in machines certainly should not be denied but, on the other side, should not be so blind. It almost seems that sometimes progress in the medicine technological efficiency takes the doctor away from the patient rather than closer to them. Instead, I would like to see more of the human side of science, linked to natural rhythms and certainties. But this, and psychology teaches you it, also means mourning, separations and failures, serious work on yourself, a sometimes very long search for the right words. And this can be the cause of frustrations and rages that can overflow. In this way you run the risk of turning to an aggressive medical treatment without it being really necessary and, indeed, without eventually feeding your deepest needs. ‘Welcome my son, welcome to the machine. What did you dream? It’s alright we told you what to dream.’ (Welcome to the machine – Pink Floyd.)

Here the term identification refers to its clinical meaning: that process by which an individual constitutes their own personality by assimilating one or more traits of another individual and modeling themselves on it.

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