Transcript

Clara Beccaro (CB) [00:00]: From the Society for Cultural Anthropology, this is AnthroPod. I am Clara Beccaro, and I’m a PhD candidate at the New School for Social Research.

Today we will be thinking about assisted dying and its associated practices. From biomedicine to religion, from Canada to Switzerland, we’re exploring how different cultures and individuals approach the end of life. In this episode, we are honored to be joined by four anthropologists who bring a diverse range of perspectives on this multifaceted topic. Through their insights, we aim to explore the ethical dimensions of assisted suicide, the question of biopolitics, and the interplay between localized ethics, biomedicine, religion, and secularism. It’s a nuanced, sometimes difficult conversation, but one that gets to the heart of one question: What kind of debates about ethics at the end of life do assisted suicide and voluntary death open up?

[01:00] [All the Colors in the World by Podington Bear]

Miranda Tuckett (MT) [01:19]: You phrase this initial question through the term “end of life,” which is a kind of taken-for-granted, if slightly euphemistic, term for an unspecified period of time before death. And I say it’s slightly euphemistic because, of course, it doesn’t talk about dying or death in any way. And the importance of language in this space has been discussed by other people who work on this topic, but I still don’t think that this term “end of life” has been opened up quite as much as the sort of legal aspect, and this idea that there’s a time period, and that this time period is unspecified, is very important in my fieldwork.

CB [02:00]: You just heard from Miranda Tuckett, a teaching fellow in the Department of Anthropology at the University of Edinburgh, whose fieldwork involved accompanying individuals traveling from the UK to Switzerland to seek an assisted death. To open our discussion, let’s listen to Dr. Tuckett talk about what “end of life” actually means, and the ambivalent moral values people ascribe to it in their own lives.

MT [02:24]: So I work primarily through a group of organizers and activists in the UK called My Death, My Decision. What this period of “end of life” is was very important for My Death, My Decision. And I worked with some people who were very actively planning the end of their lives and died over the course of my fieldwork, others that I accompanied, and then there were others who were really just thinking about this, almost in the abstract, as wanting to keep open an option in the future as a sort of insurance policy. So you know, again, we might come back to this phrase, “end of life,” and think, when does this end of life begin? Does it begin when you’re 50, and you have an idea about your death? Does it begin when you’re 70, and you start to begin to fill out the forms to go to Switzerland? Or does it begin when you lie on the bed and have a cannula inserted into your arm? You know, really, what is this period “end of life”?

And like I said, some of these questions, they really came up for the people that I was working with, because they had to decide when they were going to go. And it weighed very, very heavily on the majority of people that I was working with. It so happened that over the course of my fieldwork, the three women that I was most closely working with all changed the date of their deaths after having received their official letter from one of three centers in Switzerland, they decided to postpone the date. So once you go through all the paperwork and you get approved for an assisted death in Switzerland, you then get sent this letter which explicitly says the date of your accompanied suicide. And this really is a moment I witnessed a lot of indecision. And in fact, thinking through that feeling has become a central part of my work.

[4:14] And I think it’s important to say that people who want an assisted death do not necessarily celebrate death in the sense of thinking about dying as a hundred percent positive.  A central part of my fieldwork is about the ambivalence felt by all parties in this setting. So what assisted dying allows us to think about is constructing an ethics of action around something which is desired and wanted, but is not totally positive. So you might be, as was the case for the people I work with, on the one hand, really wanting to help your mother who you can see is suffering, and you want her to have the death that she wants, and you want to support her in that, while at the same time feel resentful that she’s asking you to do things that you don’t really want to do, like helping her die. Or, you just might be conflicted about the idea of doing something that’s going to put you in huge legal risks—up to fourteen years of prison for assisting a suicide in the UK. But the idea that I want to really highlight is that you have multiple feelings about dying. Dying, at least for the people that I worked with, wasn’t a cut-and-dried decision or choice. To choose to die, and then to develop an ethics of care around not just choosing to die, but asking for an assisted death, so we’re beginning to get to an ethics outside of good feelings or even benevolence and altruism. We are allowing perhaps, you know, ugly feelings into ethics and I think this is imperative if we’re going to understand both how we act and how we want others to act in the future. Here, now, I’m talking beyond assisted dying, beyond dying, beyond even healthcare. But how are we going to come up with imperfect solutions that do the least harm to the most amount of people?

CB [06:17]: Dr. Tuckett highlighted the ambivalence and complex emotions surrounding assisted dying, showing us that it’s not a straightforward choice but one fraught with conflicting feelings and ethical dilemmas. Before we delve deeper into her insights, I want to shift our focus to Dwai Banerjee. Dr. Banerjee is an associate professor in the Program in Science, Technology and Society at MIT.  His work on “provincializing bioethics” brings a critical perspective to the ethics of assisted suicide in medical settings, particularly in intensive care units (ICUs). He challenges the often universalizing tendencies of bioethics by emphasizing localized and culturally specific understandings. One of Dr. Banerjee’s concerns is to take apart notions and degrees of agency when it comes to end-of-life interventions—like the difference between active and passive interventions. To me, his approach reminds us that the connections we draw as anthropologists are always partial and that we must constantly be aware of our “situated knowledges,” a concept famously articulated by Donna Haraway.

[07:28] [Water Surface by Eric Van der Westen]

Dwaipayan Banerjee (DB) [07:34]: My interest specifically is in India, which I think reflects some of the aftermaths of colonial law and the ways in which colonial institutions tried to manage populations, in my case, British colonial institutions. And therefore, it’s important for me to remind myself that the terrain of end-of-life legal ethics—bioethics—that we encounter in the present, are very determinantly shaped by past considerations. In particular, this has manifested in India as an overprotection from the part of legal institutions, which is both a colonial inheritance, but it’s also a sort of post-colonial correction, with very well meaning legal experts, judges, supreme court justices erring on the side of protecting life, far more than seems reasonable in a case-to-case basis. So, the ethical debates, when we think about end-of-life care across the world, almost always seem to boil down to normative concerns within law and within bioethics, about how to best protect the vulnerable body at the end of life.

Within the United States, there’s a lot more concern or awareness of things like living wills, and documents that basically stand as a proxy for the individual who might not be able to make decisions on their own behalf at a critically ill moment. These kinds of advanced directives are often missing in most other places of the world, including India. But, I think that raises a bigger question, about who is empowered to make those kinds of decisions. When we think about the extent to which patients or people have autonomy to carry out these kinds of requests, I think, in general, the terrain of end of life ethics is now placed in such a way that there is very little space for this kind of autonomy, particularly because for all kinds of reasons, across contexts, a lot of legal frameworks, a lot of bioethical frameworks still err on the side of keeping people alive.

[9:57] So, the question for me, then, is to—or, I think one thing we have to be careful about is the terminology we use, and the distinction that we need to make between “helping die” and “letting die.” I think those are two very different things and they get conflated in some of these debates. “Helping die” brings up the kind of specters of questions of assisted suicide and euthanasia. But more often than not, what often patients, doctors, are often trying for or asking for, is the ability to let die, to let the body’s process take its own course. And that becomes very difficult given the kinds of bioethical protections we have in place. It’s important to make a sort of distinction, here, between an active request and a passive request.

An active request would be along the lines of asking for procedures and processes through which one can end one’s own life. A passive request would be to say that the body is already falling apart, let it fall apart. It’s the second that I think we need to focus our attention on because that in itself is very hard to get permission for. And so passive requests, basically, are a position that says that medical interventions are already the status quo, the status quo has shifted from bodies deteriorating and dying on their own terms to medical intervention, keeping bodies alive, far past then they almost should, or could be kept alive. And so passive requests basically say that, let’s push back against over-intervention and over-medicalization of deaths. And let’s bring back the kinds of natural processes through which bodies are already experiencing their last moments. And, I think shifting the terrain into passive requests would really lessen the kind of intensity of the ethical debate, which, when framed in terms of active desires to die, creates all kinds of moral panics, political concerns.

CB [11:50]: One thing that I want to be clear about then is that both the active and passive interventions that Dr. Banerjee is discussing would not fall under any current aid-in-dying laws. The intricacies about what kinds of dying are allowed and not allowed are part of what makes this such a pressing topic. Next we’ll hear from Sophia Jaworski, a scholar of disability who focuses on the uneven dimensions of chronic environmentally linked illness in Canada and who was drawn into the conversation about assisted dying after a high-profile case in the media, following the legalization of Medical Assistance in Dying—also known as MAID in Canada. Dr. Jaworski warns us about the potential dangers of legalizing aid in dying, especially for low-income, disabled, and marginalized communities, emphasizing the importance for societies to be able to offer their vulnerable members a dignified life. Her perspective is a crucial counterpoint in this debate. Dr Jaworski is a faculty in anthropology at Capilano University.

[13:00] [Water Surface by Eric Van der Westen]

Sophia Jaworski (SJ) [13:06]: My fieldwork didn’t focus specifically on MAID, but it worked alongside a number of people in the chemically sensitive community as well as people experiencing chronic environmentally linked illness. And, my focus in fieldwork was amongst folks who are part of this community, who are also low-income renters. How I come to this topic is I guess there have been a few high-profile cases which have gotten a lot of media attention. One of whom was a woman who went by the name Sophia, who ended up going through with MAID in the Toronto area in 2022 and who specifically stated that the reason for going through with MAID was because she was unable to find accessible housing for chemical sensitivities.

And so I’m extremely interested in thinking about this topic, as she’s definitely not an exceptional case, this is something that within both the chemically sensitive and environmental illness community more broadly, is extremely relevant and is on a lot of people’s minds. Specifically, some of the people that I did fieldwork with in an environmental health clinic have been supporting a lot of the patient populations, as well as communities of people living with disabilities that are the ones articulating the difficulties in finding both accessible housing and access to medical care. And so I’m coming to the topic more through experience with their advocacy in that regard, but also in relation to the kind of advocacy that a lot of disability rights communities and organizations are doing. Because there’s been a few other cases in Toronto, specifically, of people living with chemical sensitivities. That kind of sent a lot of ripples out in the community, and I think really resonated with a lot of people regardless of that they’re explicitly thinking of accessing MAID. I think my interest in having this conversation is a way to have a conversation not just about the ethics of MAID but also the ethics of the relationship between disability and poverty in Canada, as a form of legislated poverty or oppression. And specifically, how this is really related to the very low level of income through disability assistance that you can get in Canada.

[15:31] So, a lot of what I am writing about, you know, in my dissertation, and hopefully publishing more about in the future, is thinking about the way in which disability justice movements are approaching the questions of ethics. And this is definitely in relation to the livability of life, and how MAID is equally a question of not just accessible death, but accessible life. Part of what I’m thinking through are things like, how MAID might reinforce a deficit based model of disability, versus, you know, a social one, which insists that disability is something that is interdependent and relational.

And so you know, I think that MAID is, in some ways, characterized by a hyper individualization of care, and advocates of it endorse it because it’s seen as promoting this type of accessibility to a dignified death. But you question if it’s a dignified death, if someone is unable to live a dignified life. And, the issue with how MAID is structured in Canada gets really complicated really quickly, because it actually contradicts itself. So, people are being told that they’re eligible for MAID, and yet, the criteria is actually worded as they need to be able to make a voluntary request that is not the result of outside pressure or influence.

CB [16:54]: So on the one hand, Dr. Banerjee introduced the idea of over-intervention of medical practices, while on the other, Dr. Jawarski described the risks implicit in the potential coercion of “letting” marginalized populations opt for an assisted death. What is quickly becoming clear, here, is that we can’t talk about an ethical or dignified death without considering life itself. Dr. Banerjee reminds us of the risks of the overvaluation of life itself, in Giorgio Agamben’s term. However, Dr. Jaworski’s attention to quality of life and the role of the state in providing the necessary infrastructures for the “good life” cannot be overlooked. Now, for a third perspective, we turn to Miki Chase.

Dr. Chase is an Assistant Professor and the Śrī Anantnāth Chair in Jain Studies at the University of Wisconsin–Madison’s department of Asian Languages and Culture. She offers a religious lens to this episode, through Jainism—a religion known for its principle of nonviolence and a unique approach to life and death—and sallekhanā, a Jainist practice of voluntarily fasting to death by gradually reducing the intake of food and liquids. Whether sallekhanā is considered a suicide is contentious, with Jain scholars arguing that it is not, because it does not involve an act of passion. In 2015, the practice was banned in India, but the Supreme Court later lifted the ban on sallekhanā in 2016.

[Water Surface by Eric Van der Westen] [18:18]

Miki Chase (MC) [18:25]: In the first place, as trite as it might be to point out, debates around the legalization of voluntary death tend to be sort of bound to the terms of what has been or can be legally recognized. Which means that ethical questions like the ones most compelling in a practice like sallekhanā end up being obscured or conflated with these other, more readily available categories like suicide—“available” in terms of having legal precedent and public familiarity, which we might assume to be more knowable and ethically determined than, in fact, they really are. The significant term in Indian legal discourse here, for example, was self-killing. And the Supreme Court’s eventual overturning of the ban on sallekhanā was due to their recognition that the fast did not fall within the ambit of self-killing, which was the same reasoning that allowed for passive euthanasia to be legalized or decriminalized under certain conditions. And, Jains ethically reject suicide altogether on the basis that those who kill themselves are committing violence against themselves and others. So it’s well and widely understood among Jains that suicidal death is incommensurable with ethical conduct. So the concept of self, and the term of self, and the concept and term of killing, become really important parameters for understanding the kind of action that’s being discussed here. And the tendency toward comparison and analogy as a type of ethical debate around voluntary death extends beyond, I think, strictly legal terms. Legalization proliferates that kind of reasoning beyond the law. So, in particular, I would say that the idea and question of individual agency is often foregrounded in these conversations about legalizing voluntary death. It’s confined not just to legal proceedings, but in bioethics, in media about the subject, and so on. And it’s worth noting that suicide is universally correlated to agency, that there can’t be suicide without agency. But then it’s also necessary to uncover the tension or undecidability of agency in specific ethnographic settings. And that’s the challenge of anthropologically looking at voluntary death.

[20:33] So for example, in the case of lay sallekhanā fasts, the vow to fast until death is triangulated between the fasting person, or subject who enacts the vow; their family who allows it, which is typically represented by an elder son, and always a male relative; and the monk who bestows the vow itself. So it’s not an act of clear individual agency or autonomy, even when the fasting subject is fully capable of articulating their intention to take the vow. Even a vow can be an ambiguous marker of voluntariness. So, one point that comes forward, I think, in these debates is a fixation on individual agency and its presumed attachment to a coherent or consistent self, or subject. And, along with that comes a whole sphere of discourse that correlates to liberal humanist notions of the state and the neoliberal subject, where the state conceives of life as biological and takes responsibility for the protection and the survival of the biological life of its citizens. That construes any voluntary relationship to death, as an affront to the state. And so that excludes forms of ethical life in which moral decision-making or the texture of ethical experience might embrace death. And what ends up being left out, or underdiscussed, are ethical questions that might posit voluntary death as something other than inherently destructive or undesirable, or imagine alternative politics of life.

So I think that a detailed vision of sallekhanā is a particularly Jain imagination of a relationship to death, but it’s one among many that could admit the possibility that dying might in some forms at some times be thought of as a privilege. And while I do think these ethical questions are discussed, they could certainly be more heavily emphasized. And that’s not to say that agency or the individual subject or life itself aren’t fruitful terms of debate, but rather just to suggest that they should be taken as starting points rather than reductive totalities in thinking about voluntariness and death. Life can be seen as temporally bounded in different ways. And agency can be collective. Multiple subjectivities can actually be necessary to make a death ethically intelligible, which is the case with many sallekhanās.

CB [22:52]: Now before the episode comes to an end we will return to Dr. Tuckett, who is going to pick up on some of the themes brought out by Dr. Chase, including the question of legality, agency, and individualism. Assisted dying in Switzerland has been described by anthropologist Anthony Stavrianakis as existing in a “parazone.” Neither legal or illegal, the practice of assisted or accompanied suicide is decriminalized in Switzerland, operating both inside and outside of the law. What kind of ethics emerge here for the anthropologist to observe?

[Water Surface by Eric Van der Westen] [23:26]

MT [23:41]: I think that one of the things that can be opened up when we think about ethics, through assisted dying, is this idea of assistance. So, ironically, this is often overlooked as a lot of conversations on the topic end up being about control, or individualism.

And, this came up in fieldwork in lots of different ways. What is the assist other than just the narcotics—I mean, I say “just the narcotics” not to diminish the importance of the narcotics, but to try and think about what else exists outside of it.

So, in fieldwork, for example, I worked with one woman who was made tetraplegic after a fall, who I call Pauline. She had very, very limited use of one arm, which she could raise at the shoulder, up and down. She couldn’t use her fingers, so she couldn’t write. And, she was able to apply for her assisted death in Switzerland completely independently through the use of voice dictation. So, she spoke into her phone, and her phone then typed out her forms. However, she needed to have an official accompanier to go on the flight with her, because classically, airlines don’t want to take responsibility for disabled passengers. I traveled with Pauline and one other woman who was helping her out in sort of certain ways. And before Pauline died, she had to sign a final consent form. It fell to someone other than Pauline to walk over to the sofa in the corner of the room, pull out a soft brace, which would then velcro the pen into Pauline’s hand, therefore affording her the possibility of her signature on a piece of paper. Through that consent form, Pauline assumed all responsibility for her death.  It was her death, and her decision, to echo the name of the organization I was working with, My Death My Decision. But to what extent does the velcroing of the brace, the brace itself in fact, and the need for another person to velcro the brace diffract Pauline’s responsibility? And, that I think, is the interesting ethical nexus to be at. Because it really allows us to think, not just about the dying person, but also about the accompanier, the other people in the room, and their role in the event.

CB [26:19]: As we wrap up today’s episode, we’re left with more questions than answers. But that’s the beauty of it, isn’t it? We hope you enjoyed today’s episode, which was produced by myself, Clara Beccaro. To learn more about the scholars whose voices you’ve just heard, Dr. Dwai Banerjee, Dr. Miki Chase, Dr. Sophia Jaworski, and Dr. Miranda Tuckett, please visit our website at culanth.org. That’s c-u-l-a-n-t-h-dot-org. You’ll also find there’s a transcript of this episode.

Special thanks to Céline Eschenbrenner and Sharon Jacobs for reviewing this episode. And thank you for listening to AnthroPod, the podcast of the Society of Cultural Anthropology.

See you next time.

[26:14] [All the Colors in the World by Podington Bear]