PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.
Anisa Khalifa 0:00
As Americans, we're used to seeing death in the movies, in the news, but we aren't necessarily used to talking about it. But I come from a faith tradition that is very comfortable with the idea of dying. As a Muslim. For as long as I can remember, I've been familiar with the concept that my whole life will be spent preparing for that final journey, trying to live with integrity, kindness and faith in every moment. Because let's be honest, none of us have any guaranteed time on this Earth.
That knowledge about the inevitability of death allows me to live in the present and find joy in the small blessings, but it can be scary too, especially in the tougher moments of life, when suffering seems to stretch infinitely into an unknowable future. There is an option for death in the US that makes that future more knowable and gives people the ability to choose the when, where and how of their final moments. It's not an option that's desirable or even accessible to everyone, but it does make me wonder, how does the existence of a controlled certain way of dying shape the way we think and talk about death. This is embodied. I'm Anissa Khalifa, sitting in for Anita Rao. The movement to legalize assisted death, also referred to as medical aid in dying physician assisted death, or physician assisted suicide, has been around in the United States for more than 40 years. In 1997 Oregon became the first state to allow terminally ill adults to end their own lives with lethal medication prescribed by Doctor. An assisted death is now legal in nine other states, as well as in the District of Columbia. Proponents argue for the right to choose and the relief of suffering. Opponents cite the sanctity of life and a dangerous devaluation of life dependent on others. But for all the attention the assisted death movement receives, relatively few people each year actually follow through with it in 2022 out of over 44,000 deaths in Oregon, only 304 people died from ingesting prescribed lethal medication. This brings up questions for me about the implications of the legalization of assisted death for how we think about death in American culture. And one person who's looked into those implications extensively is Mara Buchbinder. Mara is a professor of social medicine and an adjunct professor of anthropology at the University of North Carolina at Chapel Hill. She is the author of scripting death stories of assisted dying in America. Mara, it's great to have you in the studio with me today.
Mara Buchbinder 2:56
Thank you so much. It's great to be here.
Anisa Khalifa 2:59
Of course. Welcome to embodied So you started studying assisted death in the mid 2010s so by now you've heard hundreds of stories about death and dying through your research. Where did your interest in this topic start?
Mara Buchbinder 3:11
It's interesting. I first got interested in the topic of assisted death after doing some research on abortion law in North Carolina, and I became really interested in understanding more about what happens at the intersections of medicine and law than someone actually a palliative care physician suggested to me, why don't you look at medical aid in dying? You know, this is another area in which you have a lot of friction between law and medicine, and that might be a really interesting avenue for you to explore.
Anisa Khalifa 3:45
So let's dive into your book, and your research in the US. Decision making about assisted death has been left up to the states, which means that how this process actually plays out varies across the country. When you embarked on this project in 2015 you chose to look at one state in particular, Vermont. Why did you choose this state to study how the legalization of assisted death actually plays out in the community?
Mara Buchbinder 4:08
I chose Vermont because it was the state that had most recently legalized, and I really wanted to understand what happens when these laws are new and they're being implemented on the ground, and everyone is sort of figuring out how things should work as they go. And it was interesting because I started making some calls in Vermont, and the first probably half a dozen people that I spoke to said, Why are you coming here? You should go to Oregon. They've been doing this a lot longer, you know. And I kept saying to them, that's actually precisely why I want to come here. I want to understand what happens in this context of uncertainty.
Anisa Khalifa 4:47
And Vermont was the first state to legalize assisted death through a legislative process, rather than through voter referenda or a judicial path. What did that law say?
Mara Buchbinder 4:57
So the law permits a physician to. To write a prescription for lethal medication to a terminally ill patient, provided that several preconditions are met, the patient has to be diagnosed as within six months of death, and that prognosis has to be confirmed by a second physician. They have to go through a waiting period, although the waiting period has been relaxed since the law was initially passed, and there are basically several measures in place to ensure that this is a voluntary act, and that patients won't be coerced into ending their own lives, and it has to remain voluntary for physicians as well.
Anisa Khalifa 5:36
And what did the law leave open for interpretation?
Mara Buchbinder 5:39
Everything about how it should be done. So I had this very naive notion that once this is a legal option, patients can make use of it, but the law didn't stipulate what kind of medication should be prescribed, so physicians didn't really know how to prescribe under this law what medication should be used. There was no guidance from the State Department of Health along those lines. They also didn't have any sort of implementation period where the state could write regulations and policies to ensure safety and compliance with the law. It was legal on the same day that the law was signed, and so physicians were not comfortable prescribing under the law for, I think, about a year after the law initially passed, because they didn't have any regulatory framework in place, and they also didn't know what medications they should be using. And it took a process of consulting with physicians in Oregon and Washington to sort of figure out what that should look like.
Anisa Khalifa 6:43
You conducted 144 interviews with Vermont patients, caregivers, health care providers, activists, legislators, other policy stakeholders. I'd like to start with learning more about what seekers expectations for assisted death were. One thing that you found was that people had an ideal for dying, an aspirational death, as you call it. What were some examples of aspirational deaths that people hoped for?
Mara Buchbinder 7:06
When I used the term aspirational death, I was really thinking about a lot of the esthetic values that people attach to dying. Dying can be really messy. The dying process involves bodily fluids, loss of control over those fluids. And I think that what people have in mind with assisted dying is that they can kind of control some of the mass. Another big part of it is being able to control the trajectory. So there's often this sense the dying can be prolonged, and that in that sort of prolonged period of dying, people lose control over many things. They lose control over taking care of themselves. They're not able to participate in their social lives in the same way. And so I think for many people, there's this idea that they want to cut off that last bit of the dying process, and they want to die while they're still themselves.
Anisa Khalifa 8:06
And what did those aspirational ideals for death say to you about what people considered, you know, a quote, unquote good death?
Mara Buchbinder 8:14
Yeah, you know, I think a good death is one that happens relatively quickly. The few assisted deaths that I heard about that sort of didn't go well. That didn't go according to plan. Often it was because the person took a lot longer to die than was expected, and that was unnerving for family members who were kind of waiting for them to die. So a good death is swift. It is neat. One debt that I heard about, the woman wanted to put on a diaper because she had heard that she would lose control over her bowels as she died, and so she didn't want to make a mess of the bed. And I think also probably the most important thing is that people wanted to be with their loved ones when they were dying, they were very deliberate about choosing who they wanted to be with them, sort of at the scene of death, often family members, but very often friends as well. You know, it was very rare in the in the deaths that I heard about, for for people to be alone at the time of death if they're using this type of death. And I think there's a practical reason to that. Part of it is because taking these medications sometimes they had to be mixed together. They had to be mixed with applesauce, so people sometimes needed help in order to get through that process. But also, I think it just speaks to the way that we as humans are really fundamentally social creatures. And people wanted to be with others right up until the very end, and by and large, they were able to do that if they were planning the time that they were going to die.
Anisa Khalifa 9:56
In your book, you've talked also about other ways that people have been doing. This for a very long time, you know, maybe stopping dialysis or ending, you know, food and drink. Why is it important for these people? Like, what is it that sets legalized assisted death apart? You know, why push for the legalization of this type of death at all? Sure.
Mara Buchbinder 10:17
Sure. Well, the examples that you mentioned, I mean stopping dialysis. If you are on dialysis and you stop doing it, eventually you will die, right? But if you don't have a condition that requires some kind of life sustaining treatment along those lines, it may not be as simple to just stop something, unless it's eating and drinking, of course. And so why assisted death might be more attractive than, say, other modes of suicide. I think what people were looking for is the medical legitimacy of choosing a kind of death that you could have the support of a physician for, and that would say we are acknowledging this as a medical option that sort of is on the menu with other kinds of treatments that might be available to you as someone that has this, this serious illness. And I think that helped to avoid the stigma of suicide that many people really wanted to avoid, and that's why they didn't want they also didn't they didn't want to put their families in a compromising position, and so they would not be able to involve their families in death in the same way if they were doing something that didn't Have this medical legitimacy bestowed upon it.
Anisa Khalifa 11:42
Learning about Mara's research into what people consider a good death was fascinating to hear about because it's shaped so much by cultural values of individualism and self reliance, two things that are often destabilized in the face of death. So that leads to the next big question in this conversation, how often do these idealized views of death come to fruition, and what's the process of navigating the law to get there? That's just after this break.
This is Embodied. I'm Anisa Khalifa. What do our desires about death say about our cultural values, not just in dying, but in how we live our lives. That's a question we're exploring today in our conversation about assisted death and the implications it's had on end of life experiences in America. Mara Buchbinder, the author of scripting death stories of assisted dying in America is here sharing her research with us. She studied what happened in Vermont in the years after assisted death became legalized. So we've touched on why people are seeking out assisted death. Now I want to talk a little bit about how this process actually plays out in Vermont, there's this legal process that describes what people are required to do when seeking assisted death, which explained to us, but not how. So the first step for many terminally ill folks was just starting the conversation and getting all the necessary information about the law and the process. But this gave rise to some early challenges, right? And figuring out who starts that conversation tell me more about how patients and physicians in Vermont experience this information gathering part of the process.
Mara Buchbinder 13:31
So one of the things that I became really interested in at the time that I was doing the research was this question about, well, there's a big question about access, and how do patients get access to these kinds of medications? And, you know, I think the assumption is that they do so by asking their physicians. But at the same time, if they don't know that this is a legal option in their state, then they don't know enough to ask. And there was actually a lawsuit that happened in 2016 at the time that I was doing this research that was challenging an aspect of the legislation that seemed to suggest that physicians had a duty to inform patients that this was an option in their state. And that is because the way that this law interacted with another law on the books in the state, that was a palliative care bill of rights that suggested that patients had to have access to information about all of their end of life options. And so that kind of produced this really interesting debate that played out in the courts, and ultimately that lawsuit was dismissed, but it also played out kind of in bioethical conversations that I've been contributing to, where a lot of bioethicists have said, you know, this is a conversation that really needs to start with the patient and a patient's request, and I have been pushing back against that. It for years, just by saying, you know, if patients can't ask for this unless they know about it, then we're saying that this option is only going to be available to people that already have more information about it, and that likely means patients that are more educated. And, you know, I think these are really complicated questions, because historically, people have worried about abuse and coercion, particularly of people from more socially disadvantaged backgrounds and lower socioeconomic status. And so you might think, well, it's a good thing if only sort of wealthier, more educated patients are getting access to this. But I think there's also kind of a justice question embedded in that, because perhaps this is an option that would be of interest to other folks as well that just don't know about it. And so some of the work that I did was to really like open this up a bit and say, Well, why do we take it for granted that this conversation needs to start with a patient's request and and, yes, we have to be very sensitive and very thoughtful about the way that a physician raises this with a patient. We wouldn't want a patient to think that their doctor thinks they would be better off dead. But I do think there's a role for kind of informing patients about legal options in their state, and when I asked physicians about their practices, I found out that that about half of them in a small group of physicians that I interviewed, or around about 20 physicians, about half of them were sometimes informing patients, even in the absence of a direct request.
Anisa Khalifa 16:43
So once you have the information about the law, you're ready to go further. The next step would be finding two physicians right, one to actually prescribe the lethal medication, and another to confirm your diagnosis, your time left to live and your decision making capacity. Yes. So you interviewed 29 doctors about assisted death, and they had various views and amounts of involvement in assisted death. What were the different viewpoints on how assisted death aligns with a physician's role, and how did that influence patients experiences?
Mara Buchbinder 17:16
Yeah, so one of the things that I realized is, of course, there's a spectrum of views on whether or not physicians are willing to participate in assisted dying, and some have objections for moral and religious reasons or other sorts of reasons, which is very understandable in a profession like medicine and for something that is so weighty as writing a prescription that you know is going to end a patient's life. But what was, I think, less intuitive to me, is that these physicians also had very different orientations to how they viewed this act, and there were some, particularly those who are coming from a palliative care background who saw this as not that different from what they do in medicine all the time. So in other words, as palliative care physicians, they're writing prescriptions for medications to ease suffering, to ease some of the symptoms that come along with end stage illness. And they felt like this actually is not that different than you know, writing an escalating prescription of morphine for a hospice patient who is eventually going to die, whether directly from the morphine or indirectly. There were other physicians who felt like writing this prescription was a radical breach from the physician's role as healer, and unlike anything else they ever did in medicine, and some of them were still willing to do it, even in spite of that, but not all of them were. And I just found that really interesting, that the meaning that they would make of this act could vary so much.
Anisa Khalifa 18:58
Yeah. So for those people who did get their prescription filled, who are now, you know, once you have that prescription, they're really depending on support from their social networks as well as the medical ones. So there was one story you shared in the book that really stuck out to me. It was about a man named Tom who chose to follow through with the assisted death process after being diagnosed with cancer and given six months to live. His best friend, Neil, was hugely instrumental in the process from picking up the lethal medication at a pharmacy to emptying the medication capsules into a drink for Tom and being there when he died. You talked to Neil, who told you that he remembered thinking that he had one foot in the other world with Tom because he was involved so closely in the process. What does this story reveal to you about the role friends, loved ones and caregivers play in the assisted death process?
Mara Buchbinder 19:54
Yeah, I, I just, I. So profoundly moved by the time that I spent with Neil and learning about his story, because it helped me to see that assisted dying is really a relational process, and even though many patients who seek this choice are trying to avoid depending on others in the final stages of their illness. What I realized was they're they're really not escaping dependency because they were deeply dependent for social and emotional and psychological support. They were trying to avoid a very limited kind of dependency, such as needing assistance around toileting and bodily care and things like that. But assisted dying is so relational, and it would be very, very difficult to carry this out without a really strong, supportive network. What I loved about the relationship between Neil and Tom is that it was two friends, and they were men, and it's not all that common for men to have that kind of friendship, especially later in life. They didn't have family close by. I mean, they were really each other's person. And Neil even spoke about how, you know, some folks in their town were wondering if they were in a romantic relationship together, but they weren't. They were just incredibly close friends, and I think that the assisted dying process actually strengthens those bonds and brings people closer together. There was another group of women that I interviewed who had all been present for one of their friends deaths and being present for the death actually tied this group together in a really unique way. They didn't all know each other before the death, but they felt bonded by being present.
Anisa Khalifa 21:53
Yeah, and that dependency that you've talked about really sticks out. And there's also the dependency on the doctors, the pharmacists, in the earlier part of the process, as we were just talking about, you've written that the assisted death process gives us a chance to push back on the cultural narratives viewing dependency and at the end of life in a negative way. Why is that something that the assisted death advocacy movement has been hesitant to talk about?
Mara Buchbinder 22:20
Well, I think a lot of the advocacy discourses that have sort of justified death with dignity and the right to die movement have focused on individualism, and they've used slogans such as my body and my choice, and they have really sort of emphasized the right to self determination at the end of life. And I think all of that is true, and yet it overlooks the ways in which people are so dependent on others to kind of make sense of the dying process, to make meaning of the of the last stages of their deaths, and I think the complexity there is far too much for sort of advocates to convey, and the slogans that they're using to to try to legalize this choice, I think it's easier to kind of fall back on popular tropes, long standing tropes of American individualism that have been socialized in our culture and our views, those for all kinds of reasons, right, right? And they act synergistically with other kinds of narratives in our society. And I think they sort of tap into a lot of what people think they're afraid of when they think about dying.
Anisa Khalifa 23:38
You mentioned this group of women who all met each other in this process? Is there anything else that stuck out to you about the folks who the dying people were dependent on? Like things they said about their experiences and involvement in this process, like, maybe a story that stays with you?
Mara Buchbinder 23:55
I mean, they did tend to be sort of very independent, very strong willed. I heard folks say that it just takes an incredible force of will to be able to to take a medication, to sort of, with your own hands, administer a medication that you know is going to kill you. If you don't want to die, that's the key part. They don't want to die. One of the stories that really stuck with me was of a woman who, again, had had some kind of cancer that she had lived with for a very long time, and she didn't know exactly when she was going to take the medication that she had on hand, but she got up one day and she called her sister up and she said, You know, today is the day, because yesterday was too soon and tomorrow's too late, and it's today. And she gathered her family. They were around her when she died, and she was very specific about what she wanted. She said, I don't want any. And laughing and talking. You know, after I take the medication, I don't want you having a party. This is not a party, and she did it exactly the way she planned it.
Anisa Khalifa 25:08
So, you know, you've heard a lot of stories of planned and orchestrated deaths, like the story you just told me, people planned a day of their deaths based on the weather. They planned who would be there. They planned different final tasks. Some of them, those plans went off without a hitch, like the one you just described, for other people, things did not go as expected. What was your takeaway from those stories?
Mara Buchbinder 25:36
My takeaway from those stories is that there's there's only so much we can control. There are limits, and death is still death, and we still don't know exactly what's going to happen. And that was especially true in the early days of this practice, when there was just not much experiential knowledge of how a patient might respond. The woman that I mentioned, who had a whole group of her girlfriends there at the time of her death, there was a hospice nurse present as well, and she described to me how scared she was because she didn't know what was going to happen. She didn't know how the patient was going to react to the medication, and that one went fine. But I think just this idea that, you know, we can control everything is an illusion. Yeah.
Anisa Khalifa 26:24
So now we come to the part of the conversation where I ask you, where do we go from here? You know, assisted death is accessible to relatively few people compared to other end of life care options, and some people feel that conversations about assisted death are taking away attention from making those other care options better. What do you think is a place of assisted death in conversations about death and dying, especially in terms of how to improve care for dying people in the US?
Mara Buchbinder 26:53
I think that assisted death opens the door to a different kind of conversation about what we want from the ends of our lives and what we want the dying process to look like. And I think that that's ultimately a good thing. I mean, I think that it has captured a disproportionate share of public attention. There are so many movies, TV shows, you know, cultural references, but I think what it does is it gets people talking about death, and it gets people imagining, well, what might my death look like, and what might I want it to look like if I have any control over that? And so I think that sort of opens the door to a different kind of conversation that we can have with each other and with our loved ones, that we can have with our doctors. I think it's probably not going to be the answer for most people. Many people will not die at the end of a prolonged illness where they would have the opportunity to contemplate this kind of action, and they may not live in a jurisdiction where it's legal, but I think it can get us thinking about what death might mean for us and what we might want to do at the time that we have left.
Anisa Khalifa 28:07
And has, I mean, clearly it's gotten you thinking so all these years of research writing this book, how has this influenced your own desires for death? Huh? If you don't mind sharing.
Mara Buchbinder 28:18
Yeah, it's a good question. I mean, I think that I went into this research with a lot of fear about death, and that was something that I had to conquer early on in working through this project. Around the time that I started the research, I had an aunt of mine who died of lung cancer after progressing fairly rapidly, and that was frightening to me. And, you know, she left behind young children. And I think this project, if it did anything, it got me to relinquish any attachments to a particular way of dying. So I won't say that, having done this work, I, you know, I personally would want to pursue assisted death, or would not want to. I think what it did was sort of open my mind more to the variety of possibilities, and it sort of loosened the grip of fear that I had about death, because I heard so many different stories about death, and many of them were were beautiful on their own ways, even though they were sad and devastating as well. And so I think it just it made it all seem kind of more natural and routine to me, and I felt like that was a gift, because it it made me more comfortable with the idea of death.
Anisa Khalifa 29:52
I love Mara's takeaways from her years of assisted death research, both about assisted death as a whole, but also for herself personally. And it's the time. Topic of assisted death's role in greater end of life care systems that we're going to take further into the rest of the conversation when we talk about how assisted death exists in an imperfect health care system, what concerns that brings up for some vulnerable populations and the existence of a solution that can bridge multiple viewpoints in the assisted death debate, we'll be right back.
This is Embodied. I am Anisa Khalifa. Today we're discussing assisted death in America and the implications of legalizing the ability to end one's own life through prescribed lethal medication.
It's clear that assisted death is a divisive and complex topic. Advocates want more access, opponents want less, and still, others argue that assisted death gets too much time in the limelight, taking attention away from improving other end of life care services that affect a far greater number of Americans. Embedded in that latter concern is the fact that assisted death exists in an imperfect Health and Long Term Care System, which brings up ethical and discrimination concerns for already vulnerable populations. We've talked about what happens when assisted death gets legalized, and how patients, physicians and caregivers navigate a law that describes what to do, but not how to do it. And now we're turning to a conversation about where assisted death lies in the greater end of life care landscape, the concerns it brings up from a disability rights perspective, and how improving end of life care overall could be beneficial for folks on all sides of the assisted death debate.
Here to dive into all of that with me is Harold Braswell. He's an associate professor in healthcare ethics at St Louis University. Harold, welcome to embodied.
Harold Braswell 32:00
Thank you so much for having me.
Anisa Khalifa 32:01
So you've been researching bioethics and death and dying for over a decade, and you started thinking about assisted death at a time when you were also becoming more aware of disability discrimination. Can you talk about why Disability Rights Advocates are often a key contingent raising concerns about assisted death?
Harold Braswell 32:19
Yeah. So that was the thing that was most surprising to me, because I'm a secular, progressive guy from New York, and most Disability Rights Advocates are secular, extremely progressive as well. And the reason why they opposed it, which was very compelling to me, was that they see assisted dying as a form of violent discrimination. They think that, in general, when a person has suicidal ideation, we treat it. But for one group of people, people with incurable illnesses, it seems like this whole situation is reversed. Suddenly, suicidal ideation becomes potentially rational, potentially maybe even a good idea. So for disability rights advocates, this would be a very clear cut example of discrimination that if we talked about this with any other group, any other minority group, it would be obvious that this was discrimination to deny a whole group of people equal access to suicide prevention. Part of the question is, well, if it's so obvious, why does it seem that we think about it so rarely? And another part of it is that, well, why do these people with incurable illnesses and disabilities want to end their lives prematurely? And what disability rights advocates argue is that, you know, we live in a society that is very discriminatory towards disabled people, and actually practices forms of discrimination that have been shown in peer reviewed studies to induce suicidal ideation. So it's a society that drives incurably ill and people with disabilities to want to end their lives prematurely, and then, rather than trying to stop them, it encourages it. So that, I think, is the Disability Rights critique of assisted dying, or assisted suicide, as they would be more inclined to call it. And for me, it was really, it was very powerful and very, very challenging for me to take in.
Anisa Khalifa 34:19
So I'm curious how the disability rights community talks about who assisted death is accessible for and what concerns that brings up. So could you talk about legalized assisted death for people with terminal illness, and the overlap that has with people who have disabilities? So many states have a requirement that people must have only six months left to live to qualify for assisted death. And proponents in the disability community say there hasn't been any conflation in the any conflation in these two when we look at states like Oregon, where it's been around since 1997 What do you say about that?
Harold Braswell 34:48
I mean, I think that there has not been significant conflation in Oregon or in the United States in the sense that you have to have a diagnosis of terminal illness and. And that's been relatively contained. Now, part of what has relatively contained it is that it's been pretty slow to spread beyond Oregon, because we fight this out on a state by state level in the United States. So advocates for assisted dying have had to be very cautious and careful with the language that they use and to show that they're not extending it into disabled people. Part of my concern is that if we don't keep treating this issue with the same amount of caution and hesitation, the slope is quite slippery. But I would also say that if you actually look in Oregon, and you actually look at the reasons why terminally ill people seek out assisted death, it usually has to deal with their attitudes about disability, with disabling conditions they have and that they don't want to enter, they don't they don't want to end their lives because they have X number of months less to live. They view aspects of being disabled as undignified, and for me, that does raise very serious questions of disability discrimination, it's not clear why. To me, it's degrading to need to depend on someone else for assistance.
Anisa Khalifa 36:07
Yeah, daily life, yeah. On that note, so one thing I learned from the research of Professor Mar buchainder, who we talked to earlier, is that our desires for death also reflect our desires for life. For Disability Rights Advocates, what does assisted death say about the kind of life we value, as you just mentioned?
Harold Braswell 36:27
Yeah, I mean a life with as little disability and disabled people as possible, where we could believe that we don't need and want to depend on other people, and a life that can be, for me, very harshly judgmental about things that we shouldn't be judgmental about, needing to use a walker, having some issues with incontinence, I don't really think we should be so harsh in this way. That's not the kind of society I want to live in. That's not the kind of person I want to be. And so for that reason, the disability rights critique really does resonate with me.
Anisa Khalifa 37:00
And on that point in your research, you've talked about the role that feeling like a burden plays and the pressures that are put on dying people. You know, we've already talked about Oregon, but Oregon actually collects annual data about assisted death, and of the 367 people who died from taking medication in Oregon, in 2023 43% of them said that feeling like a burden on family, friends and caregivers was an end of life concern. What do proponents and opponents say about the fact that feeling like a burden is something relatively common among terminally ill, dying patients?
Harold Braswell 37:35
The proponents angle is one I could well understand. You know, I have children, I'm married, I have friends. I'm very afraid of being a burden on the people around me, you know, I think the opponent's side. I think it, it'd be better for everyone if we were a little bit more comfortable burdening each other and not not singling out people who maybe can't hide the burden that they bring to other people as well, but that, you know, like George Costanza says, we live in a society people, and being in a society means that, you know, we carry each other's burdens. And that's, that's the world I want to live in. And it's quite a sickening statistic, the one you just read, actually, for me to hear. And I've, I've read it and written about it, as you noted, it says something really, really sad about what people are going through in that moment of meditating on whether they want to end their lives prematurely, I wouldn't want to celebrate it.
Anisa Khalifa 38:31
Yeah, and as you you know, as we think about end of life care, what are some of the big gaps that you've seen in end of life care that we might be missing when we focus on assisted death?
Harold Braswell 38:43
Yeah, well, I mean, we miss, in a lot of cases, the whole context of end of life care, you know. So I wrote a book called The crisis of youth hospice care. And one thing I point out there is, there's been 40 years of articles in my field about assisted death, and not one of them mentions Medicare. Well, Anissa, Medicare funds all of end of life care in America effectively. So what does that say about this discussion? How how much of this discussion is reality, and how much of it is our fantasy of what it's like to be, quote, unquote, dying. Our end of life care system is really troubled. Well, we have hospice funded by Medicare, it far too often arrives at people too late. They get hospice with just a few weeks left in their lives, which is not enough time to do real hospice work with family members and with dying people, and hospice does not call include what's called Long Term Care. So that's care with activities of daily living, feeding, clothing, getting out of bed, etc, care for disabilities. But dying people are very disabled. They need help with that, and when they don't have that, help, included in hospice, it falls disproportionately on their family members, who are not usually trained medical professionals. They're not. Are equipped to deal with the sickest people in society, which are terminally ill people. And it it does burden them, actually, and it creates, in dying people the sense that they're excessive burdens on them. So you know, when I was saying earlier with the disability rights argument, that you know, we live in a society that has predictable means of driving very sick and disabled people to want to devalue and in their own lives. Our hospice system, unfortunately, is a it should be part of the solution, but it's, it's a great example of that.
Anisa Khalifa 40:32
And when we talk about improving end of life care, are there any examples of a change that you've seen that reflects what you'd like to see more of?
Harold Braswell 40:40
Yes, so, you know, on a state level, so a long term care is funded by Medicaid in general. So So home care services could, in theory, be funded by Medicaid, but Medicaid usually makes that money go to nursing homes. And so, you know, we're having increasingly dying people once they can't stay at home anymore with their family members because it's too hard to care for them. They get forced into a nursing home because Medicaid will only fund a nursing home. But your state, North Carolina, actually has a program that could allow Medicaid dollars to go more easily to personal care assistance, as is Washington State. Individual states do this, but that's a great example of a program make it easier for people to receive comprehensive care at home is something that in each of our states, we can be fighting for, and this is a red or a blue thing. So there is stuff that could happen, and there's stuff happening right now, and that does give me hope.
Anisa Khalifa 41:34
So in your research, you make the point that it's advantageous for the disability rights community to propose improvements in end of life care that serves the needs of everyone, regardless of where they stand personally on assisted death. Can you talk more about that?
Harold Braswell 41:47
Yeah, so I want to say first of all that there's a debate in the disability rights community on this issue. I think in general, Disability Rights Movement has been far more critical of assisted suicide. It's considered a core aspect of the civil rights movement. It's not a marginal thing within disability rights, but autonomy, the ability to make choices about your life, is also a core Disability Rights value. And so there are disability rights advocates who support assisted suicide, and I think make, you know, worthwhile arguments from time to time. And even more broadly, you know, we live in a country where I don't think this issue is going to get resolved, pro or con anytime soon. Actually, it's a state by state thing, and different states have different political dynamics, in a way, I think it's a good thing, because I don't think it's the most important issue. I'd feel much better about assisted dying or assisted suicide if we lived in a country that had a great end of life care system and a great long term care system that didn't drive people to want to prematurely take their lives. And so I don't really think there's a space in American politics to disagree with what I'm suggesting here. And I do actually think we can work together, and I think we need to work together. And he said because we may not realize it, but we're in a fight right now. Private equity firms are buying up increasingly large stakes in both hospice care and nursing home care in places like St Louis, where I live, and they're taking the what I would call the worst practices in these industries from the perspective of caring about people though the best practices, if you're interested in extracting money from them, they're understaffing these homes. They're figuring out way to make money off sick, poor people who are dependent on Medicaid, and they're leaving people in quite terrible positions, and they have a lot of money and a lot of education behind what they're doing. So if we're going to fight this, we're going to need to work together, and I think we need to kind of understand the scale of what we're talking about, and I think we can.
Anisa Khalifa 43:41
And as you're sort of zooming out and looking more at the medical system, and you know, the whole sort of infrastructure of medical care, something that came up in our earlier conversation with Professor Mara bookbinder was challenging the idea that assisted death is a totally independent experience, because through that process, you're still dependent on physicians, pharmacists, friends, families, caregivers for everything from bureaucratic to emotional support. How do you think a disability rights perspective can also help us to rethink dependence in death and dying, and sort of also to go back to what you're saying the beginning about being dependent on others.
Harold Braswell 44:21
You are dependent on other people. You know my concern is that this dependence on others, it's kind of instrumental dependence, because it's motivated, in part, by oftentimes, a really deep fear of depending on other people. So I agree with your other guests that there is a kind of dependence involved in assisted death, but I also hear in it a lot of ambivalence, to put it mildly, and maybe even more fear than there needs to be, in my opinion, and more fear than I'd like to see in a society I want to live in.
Anisa Khalifa 44:57
I'd like to close by bringing us back to this idea that. Even though we talk about assisted death a lot, it's inaccessible to the majority of Americans, but it does reflect a growing cultural consciousness about death and a desire to discuss it. Where would you like to see conversations about death and our desires for death to go in the future?
Harold Braswell 45:16
What a great, challenging question. I know it's a lot, no, but I love it. I love it actually, because I'm also a therapist. Actually, I work as a therapist, and so I am a huge believer in talking about death and also talking about dying. So I maybe this is a good way. I'd like it actually, if we talked a little bit about death, it seems to me that in America, we're quite obsessed with death. Actually, you know, you watch any great American movie, and lots of people get made dead in the course of that movie. It's not a thing that we're skiing about, maybe even romanticize it, but dying when you're alive, but you realize that you're gonna die is it's a really powerful moment in a person's life. Potentially, we have the potential to make it a generative moment. That was the dream of hospice, and it's still a dream I believe in that dying can be the final stage of life, a stage for growth, a stage where we could give our loved ones, who unfortunately won't have our physical presence anymore, but we could give them a bridge so that they could grow from from their experience of caring for us and our experience of dying. I'd love to have a broader public conversation, not so much about death, but about dying. What we're not doing well with it, what's keeping us from making it that generative period that it could be? And as I think I've given some examples of that that I think that they're quite serious obstacles, but ones that we could work on, if we talk about it, and what our hopes would be for that period. That's a conversation I you know, whether working as a therapist or working publicly as an academic, I'd really love to be a part of and learn from and contribute to.
Anisa Khalifa 46:58
Embodied is a production of North Carolina Public Radio-WUNC, a listener-supported station. If you want to lend your support to this podcast, consider a contribution at wunc.org now. This episode was produced by Kaia Findlay and edited by Amanda Magnus. Nina Scott is our intern and Jenni Lawson is our technical director. Anita Rao is our regular host, and Quilla wrote our theme music. If you have thoughts or feelings after listening to this episode, we would love to hear them. You can leave us a voice note in our virtual mailbox SpeakPipe, or send us an email. We're at embodied@wunc.org. Until next time, I'm Anisa Khalifa.