Violence is not listening to the other: ill-treatment and narrative medicine in RSA – by Emilia Guglielmucci

would you introduce yourself and your work?

My name is Emilia G. and I have been working as a Social Worker at the Redaelli Geriatric Institute in Milan for about 20 years. I am currently Care Manager of the RSA Aperta service, which has about 130 users, and I am part of the team of the Hospice and Vegetative States units for the global care of patients and their families. I also collaborate on training proposals for the care team of both nuclei and for the family members of the SV nucleus, also taking advantage of narrative medicine. I am a contact person for some RSA inpatient wards taking care of patients and their families, where present, and some intermediate care wards collaborating on discharge projects at the end of the rehabilitation pathways.

The attention to people and relationships inherent in the work of a social worker has led me to want to deepen and address issues such as abuse and mistreatment of the elderly in the social-health field by collaborating with other colleagues on research, awareness, information and training projects on the subject within our institute.

What do you mean by violence in health care?

The data that emerged from a survey carried out through semi-structured interviews on the subject of mistreatment, in 2017 and 2018, although not detecting physical abuse or egregious mistreatment, highlighted in some guests a greater need for attention, listening, and respect for the person in the simple activities of daily life, a need often filtered through the desire to justify the operator forced into a hurry by an excessive workload. Thinking of my own experience dealing with these issues, of all the guests and users I have met in these years, of their stories and the new relationships they have had to establish upon entering the Institute, I think that violence is not listening to the other, not ‘asking permission’, not respecting the other’s time and space, imposing decisions without the possibility of choice, not respecting the other as a person with their own history and individuality who necessarily relies on them because they are in a state of need and dependence, who needs to trust the operator. Violence is betraying that trust through acts of neglect, isolation, physical restraint, psychological harassment and indifference, pharmacological abuse or negligence. Often it is the organisation that imposes times and procedures that risk turning activities into mere performances by making care activities mechanical and repetitive. The very course of a guest’s stay in an RSA can be considered an ‘abuse’ when it is not shared with the in-patient, who is, in spite of himself, faced with community conditions that he had not chosen.

How can violence be detected where it does not manifest itself in single striking episodes?

Recognising violence in social and health care settings is also difficult because the victims hardly find the courage to denounce, for fear of retaliation, for resignation of having to accept such behaviour because they are hospitalised. I still remember the comment of a guest during an interview ‘you have to adapt… you have to get used to it’. Many guests do not have the ability to respond, to tell. The only way to detect signs of abuse or violence is to observe people with an attentive and interested gaze. Observe from the outside, whether they are wearing appropriate, clean clothing, whether their person is clean, whether they have strange bruises or marks on their skin. If their alertness and ability to communicate has changed. But one must also observe what one cannot see, for victims may change their attitudes, there may be fears, a tendency to isolate themselves, sudden crying, lack of appetite, mood swings, up to more serious signs that lead to the loss of the will to try to change things by resigning oneself to suffering events. One has to stop and talk to them, try to understand the causes of such changes. But to do so, one must first be aware that such acts of violence can happen, that it is not impossible for it to happen or for it to have happened.

John Constable, Temporale sulla spiaggia, 1824-1828, Royal Academy of Arts, London

Would you like to tell us about the work and results of the narrative research carried out at the Redaelli Institute in Milan?

Since I obtained my Master’s degree in 2019, I have proposed several narrative medicine projects within the Institute. The first was born with the Master’s degree itself and concerned family members and operators of the vegetative states unit. The aim, through the proposed compilation of semi-structured diaries, was to offer the operators, a space of thought to explore their emotional world in relation to the work in the nucleus and to have the possibility of getting to know better the experience and emotions of the family members; to the family members, to offer a space of thought where they could explore and put in order the events that had led them to the nucleus. The processing and return of this data became the subject of further projects for which I asked for the collaboration of other professional figures so that the emotions detected could find the right reception and possibility of processing: for the operators, they became the starting point for discussion and reflection during a group counselling session with an expert psychotherapist; for the family members, they became topics for discussion and confrontation in the group under the supervision of a psychologist expert in art therapy, who enabled us to translate the emotions expressed into images. Unfortunately, this last course was abruptly interrupted because of the pandemic. But the pandemic prompted me to look for project proposals that could undermine the social isolation to which the guests were forced. Thus the ‘Stories in quarantine’ project was born, semi-structured interviews proposed in telephone conversations by the animators to some guests who agreed to tell their stories. The aim was to offer a telephone appointment in which they could recount their experience during the pandemic. Many emotions emerged, first and foremost fear and isolation, the feeling of being in a cage, loneliness, but also gratitude to the operators for the great work they had done. We offered the guests the opportunity to give back to each other in small groups, as soon as it was possible, during which they had the chance to compare and re-tell their experience where precisely the lack of confrontation and mutual support had emerged as a critical issue during the telephone interviews.

The project called post-it notes addressed to the operators of the vegetative states unit, again through a diary with writing prompts, brought out how during the pandemic, despite the constant fear and difficulties, the team discovered itself to be strong and cohesive, putting in the background problems and ineffective relational dynamics, which they considered important before the pandemic.

Once you have built up a picture of violence and abuse in RSA, how can you act to defuse and prevent it?

We have thought about this question for a long time during our research, in our daily practice and with my colleagues we definitely agree on what emerges from the literature, namely that in order to be able to stop and prevent a phenomenon one must first know it, recognise it and not deny it. To accept the possibility that such a phenomenon can happen and that we can all ‘abuse’ another person/body, even if we are not aware that we are doing so. It is necessary to inform, to raise awareness, to disseminate the data collected and to have the courage to give the events the right name, to take charge of them and to activate a correct course of action. It is also necessary to consciously observe one’s own and others’ behaviour, especially during care activities, valuing good practices and trying to correct bad ones. This presupposes that the operators are accompanied and listened to, made aware of the characteristics of the individual guest, that the care plan becomes a shared life project and discussed in the team and that the organisation takes this into account.

Nel mondo delle Nel mondo delle environmental humanities esiste il concetto di slow violence, formulato da Rob Nixon nel 2011, e che l’autore così definisce nel suo libro: “a violence that occurs gradually and out of sight, a violence of delayed destruction that is dispersed across time and space, an attritional violence that is typically not viewed as violence at all”. Crede che esistano fenomeni simili nel mondo della salute e della sanità? Che similitudini e differenze trova?

This definition well encapsulates the image of silent, repeated abuse, which delves into the daily routine of small gestures such as the delay in certain hygiene operations, indifference in the face of a request, the haughtiness of someone who makes the other person weigh the weight of being in a position of dependence. The word ‘weariness’, I believe, encapsulates very well the emotional and psychological state of those who daily feel uncomfortable and are unable to say so, of those who suffer but think they have no choice, of those who silently accept in order not to feed their fear. Listening, interest, an attentive gaze, global take-over, team sharing… these, in my opinion, are the key words for prevention.

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