The caregiver’s challenge

All sorrows are bearable if they are part of a story or if a story is told about them.

Karen Blixen


What motivation is there to tell a story in mourning, instead of shutting oneself up in the pain of loss, in the silence of family confidentiality? What “urgency” leads to sharing an intimate and profound fact, such as the death of a mother, with workers, people outside the family system? These questions surprise me, pushing me to learn more as I read and reread the short story of M., who has just disappeared, written by her daughter for us, a palliative care team at home, fascinated.

The project – realized in the context of the Master in Applied Narrative Medicine of ISTUD that I attended – was born so naturally, because a form of spontaneous narrative medicine is already in place by caregivers identified in the situations taken into account, it is only a matter of giving shape to these narratives, classify them, analyze and interpret them with method.

My objectives were, on the one hand, to try to make evident how complex, delicate and demanding was the role of caregiver, especially if dedicated to a family member in his last time of life, and on the other to create the opportunity, through the writings, to immediately experience the power and validity of narrative medicine in daily operations, for the benefit of both professionals and caregivers.

THE FORM-CONTENT. How to build a story that gives the person the opportunity to give a SENSE? How can writing be made an instrument of awareness to those who narrate their painful experience? The narrative pattern of “The cycle of the enterprise” or “Journey of the Hero” helps me; by offering a semi-structured trace within which to retrace the experience one can recognize the initial moment (the call), the time of assistance with obstacles and help, and the conclusion; like a novel, a myth or a fairy tale, one draws the coherent plot of what happened, allowing it to be overcome.

The collected narrations have been 12 in all, all classifiable as illness, because they put the experience of cure of the disease at the center, the emotions are told, the experience is identified, you identify their weaknesses, but also those of strength, in fact, the reading reveals a certain awareness of caregivers in recognizing obstacles and resources encountered (both personal and contextual).

It can be assumed that taking on the role of caregiver is in itself an emotional choice, whether it is linked to a moral obligation or to a loving drive.

In all the narratives there are metaphors that indicate the capacity of abstraction and symbolism of the care givers even in the moment of mourning:

A tile hit us

A few weeks of life to spend together

You have entered our tiptoe life

…from up there, her grandmother changed the cards a bit on the table and sent me her good hand.

Another aspect of the writings that can be analyzed is the emotional climate that is well represented graphically placing the emotions narrated on the petals of the “Plutchik flower”. The narratives highlight how the three prevailing emotions are fear, love and trust.

Fear is connected to the fear of facing a complex assistance, in the face of which one feels mostly incapable, unsuitable, fragile, afraid of witnessing the suffering of one’s loved one, of emotionally and physically collapsing in the face of the gravity of the disease and its ultimate manifestations. Love is the driving force that pushes the caregiver to take on this role, to respond to the call, even if in some stories he accompanies a “sense of duty”. Trust emerges as a feeling related to the palliative care team resource, an expert, reassuring and available presence, defined as a point of reference and a space for listening and understanding.

An interesting fact emerges in the narrations: the word RABBIA (anger) is totally absent. From a careful numerical analysis of the recurring words it is possible to order the most frequent nouns:


Results for my healthcare company

The importance of the caregiver figure is certainly recognized by the care team, but through the narratives it is evident that it is a real and important strength in the implementation of the individual care plan; an adequate caregiver is a guarantee of higher quality of care, because the patient will have the right answers to emerging needs; from the narratives collected, it is clear that the caregivers have been adapted (in proportion to the individual abilities / resources).

1st evidence: in the palliative care service of the Asl of Novara the centrality of the caregiver is promoted who, supported, supported and trained, is able to cope with the complexity of care at the end of life, to the advantage of the individual caregiver and the care team.

In all the narrations of caregivers directly involved in the technical acts and assistance/therapeutic actions, a positive judgement was made with regard to the palliative care team.

2nd evidence: empathy, professionalism, trust are the words used in the narratives to describe the home care received. In the palliative care service of the Asl of Novara, the operator lives a condition of well-being and work satisfaction through the care relationship with the assisted families. All this contributes to the provision of high standards of care.

3rd evidence: the palliative care service of the Asl of Novara demonstrates appropriateness in the care provided, actively contributing to the containment of company health spending.

Results for me

In carrying out the project, I immediately encountered great willingness on the part of the families, despite the most recent grief, effortlessly collecting twelve stories of illness, written with generosity and sincere openness. It is more difficult to find a working time in which to share with the group the restitution of the narrations even if, when we met around a table to listen to the stories, the invitation to express thoughts, suggestions and intuitions, avoiding interpretative attempts and judgmental attitudes among ourselves and towards caregivers, allowed the group a moment of great sharing and mutual listening. The harmonious dialogue of my working group has been possible thanks to narrative medicine, which promotes authentic relationships not only with patients but also among us operators, promoting a more collaborative working climate.

I must also acknowledge my colleagues willingness to make a practical contribution to the project, because some of the stories were written after they were proposed to the families in charge.

A few months after the completion of the master in Applied Fiction Medicine from which this work was born, in my group we are thinking about projects that include this discipline, and there is a keen interest in deepening it even by the voluntary association that supports Palliative Care in the Novara territory, valuable ally that supported my participation and that of Antonella, colleague-precious complex, at the recent SIMeN National Congress.

Narrative Medicine is currently a lively and recognized presence in the service of Palliative Care of the company to which I belong, proof of which is having brought it in the classroom, as a teacher, in the ECM course cod.3 “Palliative Care: treating those who can not heal”, which I hope will broaden interest in the General Management and the Sector Training and Human Resources.

Narrative Medicine and Sustainability

Narrative medicine is a very valuable supplementary tool for acting in a sustainable way, because we have shown that it puts the relationship at the centre.  Through it, it is possible to better identify the needs of the person who actively participates in the care process bringing his own multidimensionality: individual characteristics, environment, economic conditions, beliefs, etc. … the most “responsible” aspect, related to ensuring the present also in the future, is up to us operators, responding to the needs better defined with criteria of appropriateness and proportionality of care.

But narrative medicine is sustainable itself. This discipline, precisely because it is related both in form and content, is integrative by its very nature and does not use exhaustible resources, except those of the human dimension.

Being in relationship, getting a listening time, building an alliance, understanding and respecting the person in front of us does not cost anything and does not end in time; on the contrary, it feeds on practicing it.

More ecological and economical than this?!


Author: Caterina De Giorgi, ex participant of the Master in Applied Narrative Medicine.

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