A few words to introduce myself.
I am the Integrity Manager at the Institute of Biomedical Research in Portugal(I3S), which is one of the three institutes for research and innovation in health at the University of Porto.
I am a university professor in the areas of bioethics, ethics and integrity in research. I am also involved in research in narrative medicine. And I also teach narrative medicine.
As an expert in bioethics and narrative medicine, what do you think is/should be the role of narrative medicine in the contemporary end-of-life debate?
When we talk about the end of life, we are referring to all the decisions that healthcare professionals, patients and families have to make about stopping care and starting treatment.
This is a field that has been around for a long time, ever since bioethics was established as an official area of knowledge in the second half of the 20th century.
So, yes, I think that the biggest or greatest difficulty is in relation to end-of-life decisions.
The most complex issue is related to the lack of communication of the patient who is either physically incapacitated or is incapacitated because of his or her reduced knowledge about certain topics.
What is most difficult at the end of life is communication involving all patients, doctors, family members and relatives, and informal caregivers.
It is difficult for professionals to be aware of the cognitive strategies they use because there is this tension produced by the irrational desire to disassociate themselves from ethics and ethical responsibilities. By cognitive strategies I mean for example:
- I know that what I am doing is not the right thing to do, but everybody does it.
- I do it to satisfy the patient’s family, even if it is not what the patient wants.
So it can be more difficult for them to make ethical decisions that have been well thought out and are sound. This problem is compounded by the communication difficulties that the team encounters when approaching the patient and his or her family.
Narrative medicine, being an interdisciplinary field that promotes narrative skills, can be useful and important; on the one hand, to promote self-reflection on the part of each member of the health care team and, on the other hand, to promote reflection on how communication is being constructed and this can be achieved not only by health professionals but also by the patient’s relatives. Furthermore, narrative medicine can also be a field that promotes reflection after the care process is over.
Do you think that there are limits on this issue that even narrative medicine cannot overcome?
I have organized short training courses on narrative medicine and it is interesting to note that general practitioners, family doctors and palliative care professionals are very aware of how important the parallel folder is. GPs, family doctors have already tried to use narrative with patients, asking them to write down the care they have been given about what they eat (what they eat), how they see their doctor and so on, but the parallel folder has been used by GPs to go back and reflect on a particular patient who is more difficult than the majority.
When they write the parallel folder, it is very interesting because it shows the different way in which they can build a different relationship with the patient and find other resources to deal with the ‘difficult’ patient, helping them to be more aware of their needs, obstacles, the meanings they give to the different elements of their life.
For family doctors, the parallel file should be part of the daily routine of their practice, on the one hand to provide them with a more inside view of how they relate to patients and their families, and on the other hand as a tool to help patients, who have more difficulties in their journey, to help them see more clearly why they want to die at home or in hospital and what prevents them from opening up to their relatives.
The role that the family doctor has for these particular patients is also very interesting for palliative care professionals, because palliative care is very narrative, to take care of the person it is necessary to get to know them, to listen to their narrative and their own narrative, but the problem is that nowadays, with all the scientific and technological advances, even in palliative care, health professionals can run the risk of being too procedural; so much so that they miss the essence of palliative care, so they start to focus on the task they have to perform and the task the patient expects them to perform, forgetting that it is not about performing, it is just about being, and I think narrative medicine is very useful for that as well.
In your opinion, are bioethics and narrative medicine interdependent?
I think that not everything in our lives is open to narrative and suffering cannot be only narrative. Suffering is physical, and the physical is existential, emotional, psychological, social (it is all of these dimensions) and we cannot forget that suffering cannot be interpreted by narrative alone, we need to read the physical signs of the body, we need language (perhaps non-verbal) and we need to interpret the forces that are sometimes more powerful than the whole narrative.
This is why I believe that narrative medicine cannot provide all the answers about the end of life, but it can be a very important framework to help health professionals and caregivers to reflect and find meaning and to be clearer about what they really want and what limits they each have.
Caregivers also have their ideological and ontological limits and therefore narrative medicine can help them to be aware of this, but not everything about the end of life can be integrated and conveyed in the narrative framework.
We have to pay attention and be able to read the non-verbal signs, we have to be able to read the body and the signs of the body, in particular, when the patient is unable to communicate, of course I believe that the more narrative there is for the end of life, the easier it will be to read the non-narrative signs of illness and discomfort.
The story cannot be told but it is experience, it is lived and it is real.
Close reading, reflective writing and the parallel file are the cornerstones of the method he wants to pursue with narrative medicine. How do they apply in practice?
I believe that narrative medicine cannot be practiced, cannot be researched and cannot be used in the training of health professionals without having an ethical training, in this case bioethics, because we are talking about ethics applied to life sciences and in particular to bioethical sciences and health professionals.
Furthermore, I think that it cannot exist without ethical training and ethical awareness, although ethical awareness is more important than ethical training, because narrative medicine deals with many ethical issues.
Firstly, communication is an ethical act, therefore communication in itself is an ethical act.
Secondly, in order to practice narrative medicine, one has to be aware that while using the narratives of patients and the narratives of health professionals and caregivers for one’s own interest, one can either improve or proceed with one’s own research and this is an ethical issue.
One has to be sure that this narrative can be used in this context and that people have given consent to the publication of the narratives, even if they are identified as anonymous.
At the same time, with regard to the practice of narrative medicine, we may run the risk of doing exactly what fits with what we are, what we do not want to do and what is usually forbidden by evidence-based medicine.
Evidence-based medicine (EBM) assumes that everything can be reduced to quantitative data, to what you see in the pictures of medical examinations and clinical studies, and that in a certain sense you have to find the answer to the problem by following this part and only asking the closed question and not the open one, without giving people time to say what they really want and what matters to them.
This is what we don’t want to happen and this is why we think narrative medicine is useful.
However, we may run into certain risks when an ethical problem arises:
- The first mistake might be to assume that everyone is diachronic, that everyone is comfortable telling their stories and that everyone is able to tell the narrative.
- The second mistake is that as we develop a lot of narrative skills, we might assume that everyone is empathic, that they are able to feel cognitive empathy and that they are all able to understand very well the narrative that the patient is telling us or the narrative that the health workers or caregivers are telling us.
The problem is narrative humility, so we should be aware that we might not be able to feel empathy for everybody and we might be so far away from the cultural context of this person that we will never be able to build real empathy with this person and this is very important because it is an ethical risk that narrative medicine poses.
On the other hand, talking about bioethics, I believe that bioethical reflection requires not only to know, but also to ask an ethical question:
if I have to act when I am faced with an ethical problem, what are the alternatives to this action, what are the values at stake, how can I be sure that the decision I am making is sound and protects all the values I consider most important?
There is a narrative question that bioethics always faces and the question is not just how should I act when faced with this problem, the question is
what happened before and how did we get to this point, to this stage, how come we are now faced with this ethical problem
and that requires a narrative to be fulfilled.
Narrative medicine is really important for bioethics because it reminds bioethics that without narrative skills, bioethics falls into a fragment of short ethics that consists of thinking about ethical issues in public health, in the clinical context, in bioethical research and in all research involving life in all its forms.
Would you like to add something?
I would like to add something about the end of life.
When we talk about the end of life, we can talk about a long process of illness and disease, an experience of illness that we know we have known as a key word, and that’s why we talk about the end of life, or we can talk about an accident that suddenly confronts us with ethical questions about what to do in this case, and I think this brings us to a completely different dimension of the end of life.
An open area for narrative, because as we proceed on this end-of-life journey we can offer narrative opportunities to all the people involved.
When we talk about sudden end-of-life contexts, on the other hand, we don’t have this opportunity, but we do have the opportunity to provide people who are faced with this sudden need to make an ethical decision with narrative tools.
I think this is really important because in the case of a young person or an adult who suddenly goes into a coma or who is in a vegetative state, doctors have to decide whether to stop artificial life support, whether to turn off the machine that allows this person to stay alive, whether to ask relatives whether this person’s organ can be used for research, for a transplant and so on.
When we find ourselves in these situations and even if we don’t have the opportunity to listen to the person, we have the opportunity to listen to all the members of the health care team who may have different difficulties in dealing with the context and with the ethical issues themselves, and we can also use these narrative tools to set up better communication in dealing with relatives.
For example, the other day there was a palliative care team that was dealing with a problem of a woman who had had a thrombosis and before she was autonomous, but then she had a stroke and after the stroke she became completely dependent and they wanted to feed her artificially with a tube and she took the tube out three times, she could not communicate verbally and had a lot of difficulty communicating with non-verbal signs, but she did and this woman’s relative wanted the team to insist on artificial feeding even though she did not want to feed herself.
The team, the team members had different positions on what they should do. And they were suffering because one of the things that happens at the end of life is that you have a lot of moral residue, you make decisions that are against your values and you have these toxic residues that will contribute to risks or worthy mistakes. And so one of the risks that this team was learning was that they would probably meet to try to satisfy the relative without thinking about what was important to this woman, because the woman was silent and the relative, on the other hand was noisy and they wanted support for this narrative, how would they interact with the relative?
Eventually they managed to communicate to the relative the need not to introduce artificial feeding again and to let the patient eat what she wanted, but then they had another problem: how to prepare this doctor for a pathological bereavement because she had already had a pathological bereavement due to the foreseeable death of her mother and how they were supporting the relative for the bereavement of her mother who was going to die soon. This was an end-of-life situation and the narrative input was very important for the healthcare team itself, to communicate with the family and to understand the patient’s non-verbal signals.