Creating a Living Archive of Assisted Dying

Jordan McCullough and Marc Keller reflect on the ethical, legal, and linguistic dilemmas faced when constructing a “Living Archive of Assisted Dying.”

World map showing the legal status of euthanasia across the globe
A world map detailing legal status of assisted dying by country (Source: Wikipedia, 2024).

As questions of assisted dying are increasingly a topic of public debate across the globe, what is the role of cultural production in law-making processes? This is the question to which Assisted Lab, a multilingual research group based at the University of St Gallen, Switzerland, seeks to respond. Given the variety of countries in which assisted dying is now legal, or its legalisation is under discussion, this multilingualism is vital to addressing our core research questions. In the tradition of critical medical humanities, the Lab reflects on interactions between law, medicine, and artistic representations of assisted dying, across languages and cultures. A key element of the project has been creating our “Living Archive of Assisted Dying,” a website that gathers relevant post-2000 cultural products and presents them in encyclopaedic format. In each entry, we summarise the work and situate it in societal debates and legislative processes, thereby providing evidence of its socio-political impact. Needless to say, compiling such an archive brings with it a particular set of challenges. These challenges are the focus of this piece.

The challenges

As an academic research project, Assisted Lab neither advocates for nor against assisted dying (Assisted Lab 2024). Yet it quickly became apparent that an overwhelming number of works that deal with assisted dying argue in favour of the practice. Prior to the Archive’s launch, in March 2024, we questioned whether we ought to balance between cultural production in favour of and against assisted dying, to avoid giving the impression that we were a partisan project, in the context of an increasingly polarised debate. However, trying to achieve such an (artificial) balance seemed unethical to us. The decisive criterion for the selection of works should be, we decided, their significance in legal processes.

This criterion also fed into our decisions around what supplementary material to include in archival entries. With our focus on reciprocal interactions between law, medicine and the arts, this intersection had to take priority. We therefore endeavoured to achieve comprehensive coverage of the political and legal contexts in which each work had been cited – including its reception by various interest groups – while offering a representative selection of the reviews and other media attention it received.

For the Archive to truly serve as a resource for interdisciplinary medico-digital humanities – and to foster the “collegiality and community” to which the digital humanities aspires (Berry and Fagerjord 2017, 10) – the entries have to offer scholars and professionals from various interested disciplines an equal opportunity to enter into a dialogue with the cultural products, and understand their political and legal significance. This effort to accommodate differing disciplinary interests required a decidedly pragmatic approach, which necessitated moving beyond disciplinary specialisation in search of a common, interdisciplinary denominator.

Similarly, as literary medical humanities scholars venturing into the digital humanities for the first time, close collaboration with web designers and programmers was essential. However, different backgrounds gave rise to differing ideas of what ought to be the Archive’s primary concerns, and conflicting priorities were inevitable. The graphic designers wanted an aesthetically pleasing end-product, the programmers wanted a functional, easy to navigate website, and the research team had a heightened sense of ethico-legal responsibility, as a Switzerland-based, publicly funded project. Discussions around these conflicting priorities provided opportunities to reflect on the core values of our project and the nature of our work.

Legal constraints also affected the final outcome. Although we sought to represent the cultural products as accurately as possible (e.g. using an image of a book cover or film poster), this became almost impossible due to the range of legal jurisdictions within which a given cultural product circulates and difficulties acquiring image rights. We therefore had to find alternative solutions that allowed us to meet the requirements of Swiss law, without neglecting the Archive’s important visual dimension.

Given that our project is multilingual, another challenge has been how to engage with countries whose language(s) lie(s) beyond our own linguistic competencies (English, French, German, Italian, Portuguese, and Spanish). We have also had to consider how to make other languages visible in the predominantly Anglocentric field of medical humanities, while simultaneously ensuring comprehensibility for a monolingual, anglophone user. In this regard, we have, once again, resorted to pragmatism and adopted a lingua franca, despite the political difficulties thereof (see Adams and Fleck 2015).

Screenshot of the homepage of Assisted Lab's “Living Archive of Assisted Dying”
Homepage of Assisted Lab’s “Living Archive of Assisted Dying” (Source: Assisted Lab, 2024).

Les Invasions barbares (The Barbarian Invasions)

To render these reflections more concrete, we turn to an exemplar archival entry on the francophone Canadian film Les Invasions barbares (2003). This film follows the last days of former academic and playboy Rémy, who suffers from terminal cancer and struggles with inadequate palliative care. Rémy eventually receives an (illegal) assisted death via heroin overdose, procured from a heroin-addicted friend of the family. Albeit somewhat idealised, the film emphasises the value of a “good death.” For Rémy, a good death is one where his pain is irradicated and he is surrounded by those he loves. The film asks whether this foundational palliative care concept (the “good death”) might equally be applied to assisted dying.

Although the film is in French, and the author of this entry (JMcC) is a French studies scholar, what an understanding of the language alone does not provide is insight into the socio-historico-political context within which a cultural product is produced. As such, the author needed to draw on the cultural expertise of team members based in Canada to fully understand the context of assisted dying in this film, including the specificities of the Canadian healthcare system and the status of palliative care therein. In the case of Les Invasions, cultural insights were readily available; however, in some cases – such as the Netherlands – we have had to look beyond the team and make new connections with both academics and experts by experience.

Likewise, presenting this information in an accessible format has been an important consideration. Relevant digital humanities tools include internal links that enable navigation between related entries (e.g. works by the same author(s) or connected through intertextual references). Furthermore, alongside categorising the entries according to media and art form, we have also tagged their central themes. This offers users, who want to move beyond a single work and engage with specific aspects of assisted dying, a quick overview of relevant cultural products across languages, countries, and media. For Les Invasions, these links allow readers to engage with questions of “Death Outside the Law,” “Inadequate Care,” and the “Idealization of Assisted Death,” while also making country-specific connections with other Canadian and Québecois works.

A question also arose about whether an author or director’s later advocacy for or against assisted dying could be read into their earlier work, and if it was legitimate to do so. From the outset, Denys Arcand, director of Les Invasions, was a staunch advocate of Canada’s assisted dying regime, introduced in 2016 (Crevier 2015). Although the film offers a critique of Canada’s – specifically Quebec’s – palliative care provision in the early 2000s, and suggests that Rémy’s death outside of hospital, in the company of friends, is an ideal one, is it going too far to see advocacy for assisted dying in the film? Conversely, could we read the film as suggesting that, if palliative care provision were better, there would be no need for assisted dying, something at odds with Arcand’s later statements?

In this ambiguity, we saw an opportunity to represent the complexity of the socio-ethico-cultural issues at stake in assisted dying. We therefore sought to retain the film’s essential ambivalence by including sources that read it from both perspectives. Keeping such ambivalence alive is core to our archival practice. As the name “Living Archive” suggests, this project is constantly evolving, as are the social and legal contexts we are studying, and to present a singular reading of this film – or any cultural product – is not our intention. What we can say from studying the parliamentary citations of Les Invasions, however, is that, regardless of one’s chosen reading of it, or of Arcand’s intentions, it had a definite influence on public discourse and political debates surrounding the introduction of assisted dying in Canada (see McCullough 2024).

Finally, with regards to visual representation, it was impossible to use stills from the film, DVD covers, or promotional posters. We therefore had to reflect on the film’s core themes and search for them in Creative Commons image databases, or use them as prompts for an AI-generated image. In this case, a stock image showing a drip stand and infusion were chosen as representative of the absence of adequate pain relief and of the method by which the protagonist would eventually be assisted in his death. In this sense, we were able to arrive at a solution that captured something of the film’s content, while also allowing us to remain on the safe side of copyright law. Of course, this also created its own difficulties, as distilling a film into a single, thematic image cannot help but erode some of its nuance.

Screenshot showing part of the archival entry on Les Invasions barbares.
Assisted Lab’s archival entry on Les Invasions barbares (Source: Assisted Lab, 2024).

What have we learnt?

In an academy that increasingly encourages individual researchers to work in an interdisciplinary way, this project has necessitated a conceptualisation of an interdisciplinary team, in which each member contributes their own specialist knowledge to the benefit of the wider, collaborative effort, but moves beyond multidisciplinarity through an enmeshing of disciplinary knowledge (Miller 2020, n.p.). As Joe Moran (2010, 170) reminds us, “no one can know everything” about the theories, methods, and materials of other disciplines, therefore bringing together colleagues with a variety of linguistic and cultural expertise – and integrating these expertise – has been vital to establishing a successful “Living Archive.” In this sense, the project’s methodology echoes its underpinning aims, namely a desire to trace reciprocal interactions between law, medicine, and the arts, across languages. That is to say, we understand each linguistic and cultural context discussed in the Archive as an integral, constituent part thereof, yet it is in the comparative approach facilitated by the Archive that its true richness and value comes to the fore – so, too, in our interdisciplinary work model, wherein each member of the team both enriches and is enriched by the others.

When seeking a common denominator between disciplines, we have found that there will always be trade-offs. Despite links to further reading, and the intra-archival hyperlinks previously discussed, a cultural scholar will inevitably find the coverage of the aesthetic qualities of the works too light, while a legal scholar will likely find the explanations of the works’ legal significance superficial. And yet, by meeting somewhere in the middle of the various viewpoints, the entries that appear in the Archive manage to speak to different disciplines, including medicine, in a way that, although perhaps slightly frustrating for the specialist, serves as a jumping-off point for further discussion.

Incorporating a critical review stage into the entries’ publication process, conducted by a team member distinct from the author, has demonstrated its value not only in practical terms but also at personal and ethical levels, calling us to engage in a self-reflexive process around our pre-existing biases and to reflect on personal and professional assumptions. In so doing, the Archive has become more than just a research project, it has caused us to confront the extent to which we have internalised wider public discourse on the topic of assisted dying and to ask searching questions of our scholarly practice within the field of critical medical humanities.

If preparing the archival entries has provoked such deep self-questioning in us, as academics familiar with the subject matter and used to working on cultural production surrounding it, we can only hope that the Archive will raise similar, if not more wide-reaching, questions in those who access and engage with its contents. Fundamentally, the Archive does not endeavour to resolve any of the questions that surround the practices of assisted dying in contemporary societies; rather, it seeks to pose and perpetuate the moral, ethical, legal, political, linguistic, and cultural questions to which we must continually be in search of answers if we hope to remain true to the radical and creative values of our field.

About the authors

Jordan McCullough is a Postdoctoral Research Fellow at the University of St Gallen, Switzerland, where he works as part of the European Research Council-funded Assisted Lab. More broadly, Jordan is interested in multilingual medical humanities and, in his role as an Associate Editor at The Polyphony, he leads the theme on this topic. He holds a PhD in contemporary French literature from Queen’s University Belfast and is currently a Visiting Research Fellow in the School of Modern Languages, Newcastle University.

Marc Keller holds a PhD in German literature from the University of Bern, Switzerland. In his doctoral thesis, he examined how contemporary German- and French-speaking literature and film address the question of existential suffering as a motif for assisted dying. He is currently a Postdoctoral Research Fellow at the University of St Gallen, Switzerland, working as part of the ERC-funded Assisted Lab.

References

Adams, Patrick, and Fiona Fleck. 2015. “Bridging the Language Divide in Health.” Bulletin of the World Health Organization 93 (6): 365–66. https://doi.org/10.2471/BLT.15.020615.

Assisted Lab. 2024. “About.” Assisted Lab: A Living Archive of Assisted Dying. https://assistedlab.ch/about.

Berry, David M., and Anders Fagerjord. 2017. Digital Humanities: Knowledge and Critique in a Digital Age. Cambridge: Polity.

Crevier, Alain. 2015. “Le plaidoyer de Denys Arcand pour l’aide médicale à mourir.” Radio Canada Info, December 11, 2015. https://ici.radio-canada.ca/nouvelle/754524/aide-medicale-mourir-euthanasie-denys-arcand-invasions-barbabres.

McCullough, Jordan. 2024. “Les Invasions barbares.” Assisted Lab: A Living Archive of Assisted Dying, March 18, 2024. https://assistedlab.ch/visual/les-invasions-barbares.

Miller, Raymond C. 2020. “Interdisciplinarity: Its Meaning and Consequences.” Oxford Research Encyclopedia of International Studies, August 27, 2020. https://oxfordre.com/internationalstudies/view/10.1093/acrefore/9780190846626.001.0001/acrefore-9780190846626-e-92.

Moran, Joe. 2010. Interdisciplinarity. 2nd ed. New York: Routledge.

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