Project Work from the XVII Edition of the Master in Applied Narrative Medicine by Francesca Panzera and Loredana Pasquot
Assisting in the death and dying of a person is a frequent event in which healthcare professionals are involved in care settings. Many contextual, personal, and professional factors can influence this delicate care situation, with effects on the person being cared for, their family members, and on the professional themselves. The event of death therefore carries an intrinsic dramatic quality that affects both dimensions of the care relationship — on one side the people being cared for and their loved ones, and on the other the professionals who bear the responsibility of accompanying them through the final passage, preventing feelings of abandonment and loneliness and ensuring a dignified death. From these considerations arise important questions about the lived experience of healthcare professionals, particularly regarding their capacities, intentions, and willingness to build a conscious relationship with the death of the people they care for.
The thirty-nine narratives collected on this topic, from healthcare professionals working in various care settings including Hospices, revealed the power of giving voice to experiences that normally remain held within personal intimacy, showing that behind silence there is a readiness to speak about events that have left deep emotional traces. Traces that do not belong only to the individual dimension, but that interweave with the emotional atmospheres of care settings, where the gestures of speaking, listening, and touching directed toward the person being cared for and their loved ones at end of life take shape.
“This person has something good. I do something good for this person. I am here with you, even in your dying.” The essentialness of this expression from the Natural Semantic Metalanguage renders in the most authentic way the meaning of the word “Care” in the professional’s relationship with the person at end of life. In the experiences recounted, the value of the other emerges, the value of performing a good act for them, and above all the act of being present in a space of presence, dignity, and humanity.
The tragic-dramatic register, inherent in the very nature of suffering and death at end of life, emerges predominantly in the professionals’ narratives. This emotional register is mediated by explicit personal language, but often also by implicit language and recurring metaphors. Metaphors served as an expressive tool for the professionals, allowing them to recount in a more poetic, evocative, and effective way what clinical language would have expressed with too much bluntness. Through metaphors, the meaning that resonated deeply within the professional as they recalled their chosen experience took shape, engaging them emotionally and rendering visible the impact of these experiences on their inner world.
Some metaphors represent images of the person at end of life, conveying their emotional intensity: “clinging to life” conveys the drama of watching someone who does not want to die; “fading like a candle” evokes instead the image of a body slowly consumed in suffering; “like a rough sea that finally calms” tells of the struggle of having to cross through pain before being able to find peace; “born only to die immediately” gives voice to the sense of injustice when life is extinguished before it can even unfold.
Other metaphors evoke instead the inner world of the professionals, revealing their feelings, their vulnerability, and their capacity to remain present even within emotionally complex experiences. The image of “a storm of feelings” condenses this complexity into a vortex in which different emotions intertwine and sometimes clash.
Within this vortex, sadness emerges as the prevailing emotion — a human response to suffering and death; alongside it, fear, also recurrent, is linked both to the awareness of the limits of human life and to the dread of not having done enough. Emotions of anger also appear, directed toward care perceived as lacking in compassion or as harmful; remorse, when one feels responsible for not having acted in the way deemed most right; and disapproval, which surfaces in the face of others’ behavior perceived as being in conflict with what was considered appropriate for the patient.
Within the same vortex there are emotions that instead perform a balancing function, helping professionals find a point of stability in the emotional complexity of end-of-life care. From this perspective, vigilance is perceived by professionals as amplifying the attention to be given to the person at end of life on account of their fragility; trust concerns oneself and the ability to do something for the person and their loved ones, even when it is no longer possible to change the outcome; finally, in acceptance there is recognition of the limits of medicine, of life, and of time, transforming helplessness into awareness of the value of presence — but also of its emotional weight. Awareness of that emotional weight manifests in “futile attempts not to become involved,” which leave “a boulder weighing on you,” despite the conviction of having already “developed a thick skin.”
Other metaphors concern the sensations of finding oneself immersed “in suspended time” or with “an emptiness inside.” These are the sensations that professionals describe having experienced while trying to recover in order to continue caring after the emotional impact of the event.
The images of the storm, the suspended, and the emptiness outline the dynamic of fatigue, describing the passage from emotional overload to depletion — two movements that express a profound engagement. It is an engagement that cannot be ignored, because if it is not recognized, shared, and processed — that is, brought to the professional’s conscious awareness — it risks transforming into forms of slow violence, due to the continuous exposure to death and dying.
In the narratives analyzed, emotional exhaustion appears possible through the progressive accumulation of sadness, fear, and anger. Alongside this, moral exhaustion appears as another possible form of slow violence, through the presence of emotions of disapproval toward care decisions perceived as inappropriate or toward structural limitations that obstruct good practice. To this is added remorse, fueled by self-criticism and the impossibility of acting according to what one believes is right.
In the face of these traces of possible slow violence — which may evolve into forms of protective emotional distancing or moral distress — the reflections of the professionals are reassuring, as they convey a conscious equilibrium. End-of-life care appears, in fact, as a care space that puts them to the test emotionally and morally, one for which shared reflection is necessary. Yet at the same time, they recognize the essential value of presence and accompaniment in death to ensure respect and dignity for the person when the outcome can no longer be changed. Within this framework, conscious emotional involvement emerges as an indicator of mature equilibrium in the end-of-life care relationship — an emotional balance that runs as a thread through the narratives of “Humans caring for Humans.” (fig 1).
