From suffering to transcendence
Narratives in palliative care
Maria Auxiliadora Craice De Benedetto MD
Ariane Gianfelice de Castro MD
Elsi de Carvalho MD
Rokia Sanogo MD
Pablo González Blasco MD PhD
Working as family physicians in an academic palliative care ambulatory clinic in Brazil has taught us many lessons. We have learned, for example, that even if a story’s only possible ending is death, it can be written in many ways. The various people involved in a story—patients, patients’ families, family doctors, and family medicine residents beginning their traineeship—experience it according to their own perspectives and interpretations. Any situation can have unexpected meanings for each of us. The most important lesson we have learned is that, even if the end of the palliative care story is inevitable, its course can be changed. The direction of the changes often depends on the nature of the patient-doctor and the family-doctor relationships.
The first encounters with terminal disease are usually frightening for our junior doctors. The following comments illustrate their feelings and concerns at the start of the traineeship:
“I think I will be useless here, since there is nothing to do.”
“During training we are taught to deal with success and to apply scientific evidence and technological advances to solve medical problems. Such subjects as pain, suffering, and death are almost ignored, as if they don’t represent important elements of daily medical practice.”
“At medical school, I had few contacts with death, and when it occurred it was in artificial circumstances, where doctors I considered more capable commanded the scene. But everything was done with that same detachment they had always tried to transmit to us as being the only attitude suitable in such situations. Personal feelings were not allowed, and I felt that something was missing.”
“I panic just thinking that I will have to see terminal patients. I won’t know how to behave.”
“I don’t know what to do if the patient asks me ‘Am I going to die?’ or ‘Doctor, when am I going to pass away?’”
Cultural context
The first consultation with a patient can be discouraging for residents and students, as patients often seem unaware of their actual medical state. This occurs for several reasons. Patients might not have been well informed about their condition. They might be in denial. Sometimes patients pretend not to know about the extent of their disease to protect their relatives, because they believe that their relatives mustn’t, in any way, realize that they are suffering. At other times, patients and family members seem to have made a pact that dying and death are forbidden subjects.
Such behaviour might seem inexplicable to people living in countries other than Brazil; it results from the characteristics of our culture, very different from those of cultures in which the whole truth must be told, regardless of the situation. In our country, it is often necessary to use metaphor or to tell the truth slowly, over time.
Given this context, residents often initially have difficulty broaching complex issues with their patients. This difficulty can be challenging to overcome without good preparation and encouragement to spend time on reflection. During orientation, residents read literary works and scientific papers that introduce various themes (eg, pain, suffering, dying, and death) and various points of view. They are also introduced to the principles of narrative medicine, a method we have found to be of great value in palliative care.