Dr Elsner has just finished editing the book, (Cambridge University Press, publication December 2023). Dr. Elsner, on a recent visit to ż´Ć¬ĘÓƵ sponsored by the Swiss National Science Foundation, was interviewed by Devon Phillips.
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Devon Phillips (DP): Tell me about your current work that has brought you to Montreal.
Anna Elsner (AE): I have been working on a book for the past few years on the cultural history of palliative care looking at texts, photography and film since the 70s. I am interested in France in particular. How has palliative care changed the French healthcare system? How, in turn, has French culture been shaped by the philosophy and practice of palliative care?
My idea is that there is a reciprocal interaction between changes in healthcare systems and how cultural productions reflect on them. I am particularly interested in what kind of criticisms of palliative care are visible in some of these accounts, and what we can learn from them with regard to improving palliative care. Current discussions about assisted dying in France, Canada and Québec in particular play an important role in shaping French ideas of what a potential legalization may mean for the French healthcare system and palliative care specifically.
DP: Can you elaborate on the interdisciplinary nature of your work?
AE: My background is in philosophy and literature. But I have worked in medical humanities institutions for the past 13 years. I have also taught bioethics in medical schools, always from an interdisciplinary humanities perspective. My PhD from Cambridge was on Proust, Freud and Derrida on mourning and while I was working on grief, I became more interested in medical ideas about mourning. At the time, the DSM-5 had just come out, containing the idea that if mourning lasts longer than 6 months, it becomes a pathological condition that potentially calls for medication. But death, dying and mourning are normal parts of life. It’s that clash that fascinated me at the time - the idea that we want to cure at all costs, with the result of making death and mourning invisible.
DP: What are some of the some of the most important drivers of your research?
AE: That leads me to why I am in Montreal! I am interested in the Canadian connection. Palliative care came to France via Canada and via the work of Balfour Mount in Montreal. Unlike “hospice”, the term “palliative care” which Balfour Mount coined made sense in the French language and French healthcare context. I am interested in this history, and for example also the role that someone like Thérèse Vanier – a Canadian physician working with Cicely Saunders at St Christopher’s – played in it. Vanier set up what she called, “Les journées francophones” at St Christopher’s, whereby she actively promoted the integration and adaption of Cicely Saunders’s ideas into a different national and cultural system.
I am quite fascinated by how palliative care and the religious ideas driving it has been absorbed into systems governed by “laïcité” (French concept of a neutral approach to religion), which is another important parallel between France and Québec. My book project, with the working title “The New Death: Palliative Care and the Cultures of Dying in France”, hopes to shed some light on these processes of adaptation.
I also started a new, collaborative project looking at assisted dying in different countries. Our team is examining stories of assisted dying (in texts, films, blogs etc.) and we are asking, for example, what does the advent of assisted dying mean for healthcare systems where palliative care is underdeveloped and not accessible to a large number of citizens? There are parallels here too between France and Canada, and Dr Vanessa Rampton, a senior researcher in the team based at ż´Ć¬ĘÓƵ, will also focus on some of these questions.
DP: What are the some of the results of your research? Are people in the healthcare system paying attention?
AE: Within the medical humanities, that is always a huge question and one that I am constantly confronted with, even at an institutional level, as I am part of a medical school but also a humanities department.
A specific example may shed light on this. I believe in the importance of integrating humanities courses on death and dying in medical curricula. Medical schools are usually more responsive to this when I justify the urgency of this by alluding to which states that if we want to improve medicine’s relationship with dying, we need to better understand what particular social, cultural, linguistic needs and challenges shape different places.
I think a critical humanities approach, whether it’s history, literature or media studies, really provides the tools to do that.
DP: From what you observed and what you are reading and thinking about so far, what is the impact on medical aid in dying on how we think about the end of life and palliative care?
AE: In order to answer that question, my team is building a digital cultural archive on assisted dying, where we feed in stories on assisted dying in different media and cross-reference them with the legal contexts, such as parliamentary debates, where they are cited. These stories are often cited as a kind of evidence, and are mediated by specific aesthetic forms. We want to understand better this process and what is at stake when activist cultural productions make their way into law-making.
We are interested in the shades of gray, the ambiguous nature of these stories, as there rarely are black or white positions. As researchers, we are not taking any position, but of course the stories that we read and hear about are very often hard stories in one way or another.
Switzerland has a long history of having assisted suicide organizations and one such ambiguous story provided the personal starting point of this project. 15 years ago, my mother who is a pastoral assistant, accompanied a woman with multiple sclerosis in her 40s. She had young children. Her husband asked her to opt for assisted suicide as a Christmas present to the family, as he felt unable to shoulder the care for her and their children. In the end this woman received assisted suicide. My mother found it very hard to deal with this situation. This story made me realize that there is a lot of room for abuse – and that the emotional ripple effects of providing assisted deaths often reach beyond the family. As a researcher, I am also particularly interested in questions around gender and women choosing assisted death in order not be a burden.
At the same time, I recently talked to Shonali Bose, an Indian filmmaker who is working on a documentary of assisted dying in Switzerland. In the film, she accompanied a close friend with terminal cancer and filmed the process of him opting for assisted suicide. For him, this was really how he wanted to die.
The more I work on this topic, the more I understand that it is such a case-by-case situation. It’s a fundamental shift in how we think about life and death and I hope this project will shed light on some of the complicated issues in how our opinions and laws about this issue are shaped.
DP: How will the public have access to this information coming out of your research?
AE: There are five of us working on a website with an open-access digital online resource that is going live this December. We will ask the public to feed in sources and alert us about stories of assisted dying. There are some further dissemination plans, such as podcasts, and as a team, we are also writing publicfacing opinion pieces because it is clear that this information is very timely.
DP: Last thoughts?
AE: Personal stories and their aesthetic mediations, such as for example accounts of how parents cannot find care for their disabled and dying children, are such untapped resources for knowing what is really going on in a healthcare system. They serve as autobiographies as well as social critiques. We have to stay attuned to the particular and to listen to the stories that people are telling. That is why literature, the arts, culture, are so important - they allow us to sharpen our ears for stories that often fall between the lines of the law.
Website with an open-access digital online resource (A Digital Cultural Archive on Assisted Dying): assistedlab.ch