FAB Gab Episode 11: Maria Howard on Assisted Dying

11:34AM Aug 18, 2021

Speakers:

Kathryn MacKay

Maria Howard

Keywords:

suicide

narrative

rational

people

mental illness

story

conversation

paper

stories

dying

lindemann

bioethics

real

necessarily

realise

ways

hostage

scholar

articulate

literature

Hello, and welcome to FAB Gab. This is the podcast for the International Journal of Feminist Approaches to Bioethics brought to you by FAB Network. My name is Kathryn MacKay and today I'm joined by Maria Howard from Gonzaga University in Spokane, Washington to discuss her paper 'Countering the Rational Suicide Story', which appears in Volume 14 Number 1 of the IJFAB. So hi, Maria.

Hello, thanks for having me.

Oh, thank you so much for joining me, it's really great to have you here. And to talk about counter stories to the rational suicide story. So I wonder if you can start off our conversation by just giving us the elevator pitch of your paper?

Sure. The paper essentially argues that the philosophical bioethics literature on rational suicide has created a pretty convincing and popular narrative about the sort of person who's deserving or has earned, or has should have the right to access in assistance and dying. And I think this story was originally constructed as a laboratory exercise is the philosophers and bioethicists that were originally interested in articulating what rational suicide might look like, we're interested in getting rights for folks who they thought had been denied something denied access to something that they, they were, if not owed, at least, the conversation around whether or not they were owed, it should happen. But what happened was, I think this literature grew over 40 years. And there's a consistent narrative that gets woven that turns into what I think Hilda Lindemann calls a hostage narrative. So it goes from being a liberatory exercise to something that actually denies people that don't fit the narrative woven by bioethicists of what irrational suicide or looks like, those folks gets forced out of the conversation about assistance and dying. And I think that's problematic.

Yeah. So what is the rational suicide story?

Yeah, so that's actually the, it's interesting. Usually, when I write papers, a literature review isn't one of the more interesting parts of the paper. But I think in this one, it is, I think, the rational suicide, suicide, your story, and it differs a little bit from scholar scholar, obviously. But when you look at the literature over a couple of decades, what you've come to realise is that somebody who is able incredibly articulate, able to articulate why, you know, dying is both in their interest as well as a way for them to avoid harm, they have to be able to give reasons that doctors and psychiatrists and anybody else on the consulting team would be able to recognise themselves as reasonable. They are often though it doesn't necessarily, it's not necessarily in the requirements, but they're educated. There's a sort of story that must be told in certain boxes that must be checked. They also have to be free from any sort of not only mental illness, but any sort of coercion whatsoever, right? So they have to be seen as an individual capable of making choices independently of those around them. Right. So there's a real individualistic spread, that doesn't necessarily always mirror what people experience that end of life. And then there are a bunch of there a couple other smaller criteria, but those are the heart of this. And the this lack of coercion especially is something that I'm interested in the lack of mental illness being a criteria. And because I think that scholars like Jeanette, he would have have argued successfully, that that doesn't necessarily make sense if the rational suicide literature usually grounded in the desire for respect of autonomy, as well as the achieving of beneficence. Right? So it's not actually true. When we look at certain types of mental illness, that people totally lose their autonomy, then they become globally irrational, for instance, or unreasonable. So there's a sense in which this need to not be coerced or not to have internal sort of mechanisms at work that make you less free. It's been assumed that that means no mental illness, but without good reason, I think.

Yeah, what you described there as the story of the rational suicide person. Sounds very familiar. It sounds like what people are talking about when they're talking about things like it has a different acronym in every country. But medical assistance in dying, as it's called in Canada made voluntary assisted dying, as it's called in Australia, fad. This is the this seems to be that seems to fit what people are talking about when they're talking about those?

Yes, yes. And I think that's one of the things that I point to in the paper, though I don't necessarily argue for just because I, you know, I'm a philosopher, and I don't necessarily have the training to do this. And I think the academic literature has actually had a real impact on culture. And it would take a scholar of a different stripes show exactly how that happened. But I know in America, at least, you know, we have Brittany Maynard, who is the story per Exelon, to the rational suicide her. She was an intelligent, articulated, educated woman who needed to move from California to Oregon in order to receive assistance and dying for glioblastoma. And the way in which she, she was a really brave and wonderful woman, so please don't take me as disparaging her. But she turned her last couple of months into a politically active point in her life. You know, she recorded testimony for the California Congress to hear before they indeed pass their own death with dignity act. And she was incredibly influential. But I think we see people like her, as the faces of the right to die movement in the states are bad or any, any of the movements, I think, in the west for the ability to receive medical aid and dying. So it's, it's clear that there was the story told, and there are indeed people that are mapping on to that story. But I don't think that's always necessarily an indication that the story is working entirely.

Yeah, so what motivated you to write this you kind of saw that something was missing? It sounds like

yeah, so I think it was there are two two motivations. First, just personal I and I think I'm not alone in this I have a close relative who and this this language has fallen out of use in the Suicidology community, but I think it's actually a really good term, who slipped out of suicidal career right, a suicide career. So repeated suicide attempts in ways that were pretty clearly not just para suicidal, but real attempts on on her life. And the mental illness she struggled with, that she wrestled with really was intractable years and years and years and years of suffering. So when I read the rational suicide literature, you know, all those years ago when I was in grad school, my thought was, this is missing something pretty important. And then both Brittany Maynard sort of emerged on the scene and Peggy battens husband, Brooke Hopkins, ended up anybody who's read my papers read the story, but being involved in a bike rack that left him paralysed from the neck down in a way that she baton herself said, you know, if she had been there, when the accident happened, she would have actually refused like sustaining treatment for him, because they had had many conversations about how he wouldn't want to live in that condition. But she wasn't there. And he did receive life sustaining treatment and lived for a few years. But her chronicling of her caregiving for him and the way it impacted her thinking about her own professional work. You know, she didn't change any of her really fundamental theses. But I think the nuance of her reflection on her scholarly work in light of the lived experience really inspired me to think more and more about what it means to advocate for those that are seeking assistance in dying. Not all of them are going to be as articulate and educated and charismatic and powerful as somebody like Brock Hopkins, or Brittany Maynard.

Right. Yeah. So one of the things that I that you said in the paper that struck me as, right, sort of as soon as I read it, and kind of one of those moments were like, Oh, my god, yes. Is that people who have conditions where they are maybe like, very depressed, as you were saying with your family member and are attempting suicide, maybe repeatedly, definitely in suffering. Their voices haven't been included in the research in the discussions around whatever acronym you used for medically assisted death. So it seemed like that's, that's been so important, and it seems like like, obviously they should be included as soon as you were In your paper?

Yeah, no. And it's really interesting. I think one of the parallel tracks of research I'm interested in is the in the United States. It actually is not just the United States, Canada, as well as Australia, a lot of Western countries call sort of the study the academic study of suicide Suicidology. Right and this is not necessarily only act academic right, but the American Association of Suicidology, for instance, is made up of, you know, practitioners, counsellors, academics, etc. But a lot of the either the American Association of Suicidology, one of the catchphrases is zero suicide, right? Like that's their goal, Zero Suicide, Zero Suicide, Zero Suicide. And one of the things that this research has led me to is sort of an appreciation for the fact that that's likely not a reasonable goal. And since that's their goal, and that's the aim of all of the research and the activism that they do. The stories that they tell that suicide ologists tell that folks who are preventionists of suicide tale are often the recovery stories that don't necessarily align with mental health users who have struggled with suicide. And can be incredibly silencing, the more I read mental health users scholarship, as well as personal accounts of their own sort of mental health struggles, the more I realise how alienating and how disconnecting the disconnected they feel, are some can feel when they read about suicidal survivor stories, it always has to any story told by the the folks advocating for suicide prevention has to have this, this endpoint, this this culmination of and then I realised I was so lucky, I survived. And not everybody feels that way. JOHN Murray, French thinker, philosopher, in his own suicide, you know, said one of the worst things ever done to him, and he was a Holocaust survivor, right, Bergen Belsen sells in Auschwitz. And one of the worst things that ever done done to him was his after his 1974 suicide attempt. He woke up in the hospital, and the doctors were just like, acting as if they were his Saviour. And he completed suicide in 1978. After writing this, this series of radio lectures that I think that published us on suicide, but I think could only have only the air in South Germany, right. But where I think he's pretty, he's particularly it's pretty clearly that. For some people, this isn't a matter of salvation, being saved from one suicide is it's actually a great insult to the church, our economy.

It's such an interesting problem. And I, I looked this up in preparation for chatting with you, that of the places who have legal assisted death. Denmark, the Netherlands and Quebec are the three jurisdictions that allow it based on intractable mental illness. And that seems very controversial, even in those places. I know, it's very controversial in the Netherlands, especially.

Yeah, no, and I think for good reason, right. One of the things I'm actually not sure how I feel about allowing for assisted suicide for intractable mental illness, I think it's a conversation, we need to have lead away a whole lot, we're getting some data, but out of the Netherlands and on sort of the use of it for things beyond, you know, physical sort of ailments and terminal ailments. So I, I will admit, I think that there's a lot of conversation still to be had. But it's a conversation we need to have, especially if we're going to be intellectually honest about our reasons for allowing assisted dying to begin with is being terminal. Really. Is that, does that offer a moral difference? And it may right, and some scholars argue that it does. But if we're really thinking about both autonomy and beneficence, avoiding of suffering, then I think it's a conversation that needs to happen and it needs to happen with people who are the ones suffering, that are being denied access to this. And again, I'm I honestly don't know, what the result of continued conversations on that will be. There are plenty of people and I think, gosh, they're right about this. The the, it's a dangerous thing to talk about, who should be allowed to die, you know, we need to be careful with with regard to disabled folks and We all folks, we need to be careful in text vulnerable populations. But I don't think that means that we should exclude them from conversation.

No, right. So actually, I think I think we've talked a lot about different parts of the paper. But I wonder if you wanted to, maybe take us through the part about story that you include in the paper, because I think that that's an important bit of what you're doing in the paper is talking about the role that story plays?

Yeah, and this is straight out of Hilda lindemans. work. So this idea that narratives are identity constituting, right, so the stories I tell myself, the stories that are told about me the stories that are told about the social groups to which I belong, the social identities I hold, actually constitute who I am, that we literally can't function as human beings without narratives. That meaning making happens through sort of the weaving of narratives, both individual and collective. So for Lindemann, she thinks that, you know, there are several types of narratives that are important, especially when we're looking at one's ability to function in the world and to, you know, create oneself. So one of the primary types of narratives she talks about is master narrative. These are the sorts of narratives that shape cultural consciousness. So the example I use there a couple of the examples I use in the paper, you know, when I forget my computer at home, which happens, often my husband will bring it to me in my office and laugh about me being an absent minded professor, right. And he's right about that, right. And there's nothing wrong with that master narrative. For me, there's, when he tells me that it I know it's with the utmost respect for me. And I know that I hold a relative relatively amazing position of power by being a professor at a university on the tenure track. So some master narratives are just like that, right? They're pretty benign. Some master narratives, though, end up being,

frankly, really abusive and can be really problematic. So one of the master narratives that has functioned in American society for quite a long time, and is, I think, beginning to be confronted in real ways. But really, gosh, was was operative for a long time was the myth of the the, you know, aggressive black male, right? The the narrative being told during the 70s in the 80s, and the 90s, when laws were being passed to criminalise all sorts of things, right during the crack epidemic, where the idea was, we need to lock people up, usually men of colour, in order to protect other people because of their aggressive nature. That's a master narrative that did a lot of damage right and has lessened generational trauma. Given mass incarceration in the United States. semester there, it is like that, though they may be rejected by people who hold that particular identity can still do a lot of damage. They can not even if they are rejected, there might be some inkling leftover of sort of the gets internalised because it's hard to fight against the stories we hear all the time, not to mention the ways in which it allows others to discriminate. Hilde Lindemann suggests that there is moral repair to be done by the use of counter stories. So counter stories are the stories told by those who find themselves in oppressed positions, or those who are allies of those who are oppressed have to in order to reclaim the the agency of those about whom the damaging master narratives are told. So, you know, when we see the collective of mental health users coming together to tell stories of madness that aren't only about institutionalisation, for instance, but about sort of the ways in which certain forms of mental illness can actually give you insight into particular types of being or particular ways of living, or particular ways in which those who don't have to struggle with mental illness may they may not be able to see things from a particular perspective. That's the sort of counter story, especially when it gets taken up by broader culture that can create some real change. The third type of narrative I talked about in the paper, Lindemann calls the hostage narrative. And these are narratives that start out as counter stories, right. They start out as an attempt to liberate or attempt to gain agency for a group of people who've been not denied access to something or who've been spoken of in ways that are inappropriate or unfair or oppressive. But what happens is this hostage narrative that started as counter story ends up being used to exclude, right? So the example I use in my paper is a Francis Willard, a prominent suffragist who used prohibition prohibition as a way to sort of argue for the women's right to vote women's right to vote, because the idea was that women could collectively come together to avoid and help prevent the dark masses of men who were drunken and slovenly and beating and harming women. So it was this racialized, gendered sort of story that essentially said, This oppressed group needs some sort of right, some sort of social capital, in order to push off these, you know, drunken dark men. And that's, that's sort of a really, really, really important version or example of a hostage narrative. And I think that's what's happening with the rational suicide story.

Yeah, I think that was so interesting. So as you said, at the beginning of our conversation, the intention at the beginning of this literature around rational suicide was to gain agency for people who were terminal who wanted to be able to end their lives in a way that was dignified or kind of respected the person that they had been through their life and avoided some of the really horrible things at the end. But then it ended up being a hostage story, because it kind of took hostage if we can say that. People who suffer from mental illness, is that, right?

Yes, I think that's that's what happened. And perhaps not even the hostage narrative is so interesting, or the the language of hostage is so interesting, but it is excluded from them from the table. Right? We are we are rational, we do not have mental illness, we just have looked at our circumstances and abstracted ourselves from them and said, You know, this just isn't worth living. And most people would agree with me, right? When we talk about reasonableness, one of the one of the criteria for rational suicide that appears in pretty much all of the literature is that it's a reasonable request, right? And reasonable is often not defined, or if it is defined, saying most people would agree that the circumstances warrant this right and problematic all on its own. But this, were reasonable, were rational, and those with mental illness are not mean. Okay, well, let's they're not, why should we talk to them at all about what their needs are and where they stand in this?

Right? And like you said at the beginning, it's that view that they're coerced, therefore, they're not making it they might not even be making a decision in the way that some people conceptualise the making of a decision.

Precisely, right. Yes. And this is why I can't recommend Jeanette do its work on schizophrenia and rational suicide more. More fervently, I think she does an excellent job showing that. You know, we tend to conceptualise or some folks tend to conceptualise those with mental illnesses globally irrational and to pick schizophrenia because I think in part people think well, of course, schizophrenics are rational. And what he shows is no, there are periods of lucidity. Right? And they can schizophrenic can reason about their lives in ways that are commensurate with non schizophrenics during those periods of lucidity. And because of that, we need to have a real conversation about bringing people to the table, bringing people that had been written off as globally irrational. In the conversation,

yeah. Well, it's been so interesting to talk about this paper with you, Maria, I wonder, is there a kind of final takeaway message that you hope people will glean from reading your paper or even just our conversation together?

So I think this is feel so cliche, but pay attention to the stories that aren't being told, I end my paper with sort of a call to an ethnographic turn and, you know, others before me have articulated that need and bioethics better than I'll ever be able to, but if bioethics does have a spotty track record, I say this in my say this in my paper, so we need to be careful about who is doing the talking, who they're talking about and whether or not those people are actually in the room. And that's just good practice generally, but for bioethics specifically

Yes. Well, thank you so much for talking to me today, Maria. It's been such an interesting conversation.

Yeah, it really was fun. Thank you so much for having me.

No problem. And thank you for listening to this episode of FAB Gab. You can find Maria's paper linked in this episode's notes along with a transcript of our conversation. FAB Gab is hosted by me, Kathryn MacKay, and produced by Madeline Goldberger. You can find our other podcasts on Spotify, Radio Public, Anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye