We host a project work by Elena Vavassori, anesthetist who participated to the 4th Edition of the Master in Applied Narrative Medicine by ISTUD Foundation. We consider this project work as really important: it showed the problem of non-correspondence, in pain therapy context, between pain Rating Scale – required by the current Italian law (38/2010) – and patients’ experiences. Thanks to noticing this incongruity, physicians who participated to the project work reported they have better managed and taken care of their patients.
From how many points of view can we look to chronic pain, that pain that isn’t a symptom anymore, but becomes a disease itself? How many definitions can we give to this pain? The answer to these questions is the weave that subtends this Narrative Medicine project work that took place in the Clinic for Pain Therapy at Poliambulanza Foundation (Brescia, Italy). Patients have been the protagonist of the project: through their diaries, they narrated the experience of chronic pain and their journey in care context.
Medical science give pain this meaning: an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage .
On the contrary, this is the language that patient chooses to shape and give voice to his/her suffering:
For me, this is not life; I take drugs all day long; Unlivable day; I can’t do anything; I feel strained; I spend so much money, but I don’t feel cared; As a monster ate me from the inside; When you start suffering in the morning, in the evening you would kill someone; I’m ashamed to engage with other people.
I feel alone, misunderstood, guilty for my daughters, my husband, unfitting in all the roles, I feel observed by my husband since the morning, he seems to think “Let’s see today what happens”, I see “subtitles” in my daughters’ eyes, “It could be Alzheimer, or maybe she’s depressed, anyway she’s not working”. I can’t do programs anymore, or projects, because I don’t know if I can, if pain will allow me.
I feel as inside a thorny hedge, I’m a baby, naked, in foetal position, crying, rather faintly claiming, without moving, careful to not moving, to not deeply breath because the thorns will pierce me. But breathing is inevitable, thorns enter the flesh and pain is really strong, it draws back for a moment… And then again. In this way I feel pain.
Pain, more than operation, more than chemotherapy, this “intrusive” eating you, or grasping your hip, without interruption, day and night. It makes you do absurd things, such as getting rid of the trash at 4 am, cleaning home at 3 am without making noise, in order to not wake up your loved ones… In order to forget it, to fight it, but it doesn’t bring peace. And then loneliness, because pain gives it too, because you fear to tell you are suffering, even if you can’t hide it.
These narratives are quite different from those told by healthcare professionals in the usual clinical chart, focused on the biomedical aspect of pain. Also physicians actively took part to this project, writing their reactions and emotions evoked in the encounter with persons affected by chronic pain. Their writing is based on the relational aspect between carer and cared, and through this the doctor interacts in narrative:
She tells me she’s taking too much drugs… I start getting upset, and I tell her that if she’s worried about the number, maybe her pain is not so strong as she says… We know if they are too much or not. To calm her, I tell her I eliminate the drug that has caused her pain, and that I will give her another one. And then “panic”. She starts stammering that no, she wants the other drug, even it hurt her. I don’t understand. I really start getting upset, because I see she’s totally absorbed by her anxiety and not listening to me. I raised my voice, telling her that if she doesn’t want to follow my therapies, she can do what she wants, the pain is hers, not mine. Maybe I made a mistake… But the result was that I wanted. She stopped talking this way.
A fundamental moment in this project work were team meetings of physicians working in the clinic for pain therapy. The third protagonist of the project was the collective reading of patients’ diaries and of physicians’ narratives:
After collective reading of diaries, doctors agreed on patient’s need to be listened, and on giving him/her clearer information through better communication.
The patient underwent several visits, but no one listened to him.
The patient may need to listen that we didn’t understand anything, admitting that medical knowledge cannot be made only by reports and diagnosis.
In this way, it has been possible to look at chronic pain not only from a biomedical perspective (disease), but also from patient’s perspective (illness and sickness). Illness narratives revealed an unexpected knowledge, with which medical knowledge have had to dialogue, to better understand patients. The team employed diaries as tools for collective reflection, in order to identify the better therapeutic and relational solution for each patient. Not only: the collective reading of narratives allowed them to have an emotional dialogue otherwise impossible. Narrative helped the team to integrate disease and sickness with illness: it’s the passage from taking care of the disease to the taking care of the person. And finally, the experience of Narrative Medicine approach has been synthetized by one of the physicians involved:
Beautiful… An useful tool. It gives a vision of the patient that maybe is more true than their own words. Because what is written without a doctor looking at you, inspecting and judging you, maybe is more real. I was surprised by the level of suffering and depression of a woman, deeper than what I thought. Patients’ diaries almost always share the sense of abandonment of these people. They feel alone, passing from a doctor to another, without a reference point, and often without a precise diagnosis […]. I think it is a good way to focus those patients with which talk more, during the visit… Those patient that maybe need more feel cared than be cared.