Disability and Progress-February 15, 2024-Aid-In-Dying Legislation in Minnesota

[00:00:00] Speaker A: KPI. [00:01:00] Speaker B: Welcome to disability and progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the producer of this show. Charlene Doll is my research woman and PR person. Hello, Charlene. [00:01:14] Speaker C: Hello, everybody. [00:01:14] Speaker A: You have a good day out there. [00:01:18] Speaker B: And Erin is my podcaster. Thank you, Erin. This week I just want to warn people that this is a particularly intense conversation that we're going to have and a well needed one. We are going to be talking to some people from compassion and choices about the end of life option that is happening in the legislation in Minnesota. And so I welcome people to be a part of this. And I just want people to know that my intention on bringing this topic to the airwaves is to air both sides and to let people know what is exactly going on with the topic. So without any further ado, this week we have two people. Well, I think three are in our thing, but Dr. Rebecca Thoman. Rebecca leads the campaign to pass the Minnesota end of life option act on behalf of the compassion and choices, the country's largest nonprofit dedicated to improving care and expanding options at the end of the life. She trained in family medicine and community health at the University of Minnesota and has worked in public health policy for more than two decades. We also have Matthew Sanford, and Matthew is the author of Awakening a Memoir of Trauma and Transcendence. The 2006 memoir recounts Matthew's journey to healing the Mind and Body connection following a car accident that left him paralyzed at the age of 13. Mr. Sanford founded Mindbody Solutions, mindbodysolutions.org, a nonprofit organization dedicated to transforming trauma, loss and disability into the hope and potential by awakening the connection between mind and body. So thank you very much, Rebecca and Matthew, for being on. Hello. [00:03:46] Speaker A: Hi. Thanks for having us. [00:03:48] Speaker B: Yes, thank you very much. This is a great topic and I really appreciate you guys coming on to discuss this. Before we really get deep into it, I'm wondering if you would just give a brief discussion quickly on who is compassion and choices for the organization and what do they do for people who don't remember or aren't familiar with them? [00:04:18] Speaker C: Before that happens, I'd like to pop in. I'm just a supporter of compassion and choices. [00:04:23] Speaker B: Okay? [00:04:23] Speaker C: I'm just a guy that lives that also has lived with a disability for 45 years. [00:04:29] Speaker B: Okay? [00:04:29] Speaker C: So I'm like weighing in on it from the perspective of this issue. I did write a piece for the Star Tribune about it, but I want to say that it's not like I'm on the payroll of combat choices got you hanging out. Representing a perspective on disability as a personal citizen about what I think about end of life choices. [00:04:57] Speaker B: Excellent. Thank you. [00:05:00] Speaker A: Thanks for clarifying that. Yeah, compassionate choices is, like you said already, it's a national nonprofit. Our mission is to improve care and expand options and to empower people for their ender life journey. And we have a vision of a society that affirms life and accepts the inevitability of death, embraces expanded options for compassionate dying. So we're really looking to transform the way our country and our people think about dying. We work in a number of areas. We have lots of resources for things like advanced care planning. We have a whole section on our website dedicated to planning ahead for a dementia diagnosis. We have a legal team that helps people who are in legal battles for their right for their end of life decision making. And then we have our advocacy team, which is what I'm a part of, working to bring an Oregon style death with dignity law to other states. It's currently available in ten states and DC, and we are working to make that happen in more states so that it's accessible to more Americans. [00:06:10] Speaker B: Great. Thank you. I want to ask that medical aid in dying is not yet authorized in Minnesota, as you pointed out, but the legislation is gaining momentum, obviously, in 2024 and for the past nearly decades, since the bill was first introduced, the bill passed the House health finance and policy committee. Can you explain a little bit about what that exactly means? [00:06:43] Speaker A: Yeah. Well, let me start by just explaining medical aid and dying, because I think there's a lot of misinformation out there, and people have kind of preconceived concepts. So the end of Life Options act is the name of the bill, and it would authorize medical aid in dying, which is a very specific clinical practice. It allows a person who meets some very specific criteria. So they'd have to be an adult with a terminal illness and a prognosis of six months or less to live. They have to have full decision making capacity. So this would not be for someone, for example, with dementia. And then they have to have the ability to self ingest the medication. The process also includes seeing two separate physicians or a nurse practitioner for a complete assessment and evaluation. There's an optional mental health assessment if that's deemed to be necessary, and then going through a series of explanations about being sure the patient is fully informed of all of their options, submitting documentation, et cetera. So the whole system is very laid out, and it's modeled after what has been a really successful law in Oregon that Oregon has had for 25 years. And so that's what we're looking to bring to Minnesota. [00:08:07] Speaker B: Yeah, I think we'll get more into that later in the questions. Where is it now in the legislation? [00:08:16] Speaker A: Well, so it was heard in January during the interim, and I believe that the House committee chair chose that because she wanted to give it a good long time for a hearing. And this is a short session. [00:08:32] Speaker B: Right. [00:08:32] Speaker A: And so it was brought up in the House, and I think it went five and a half hours, and there were 80 some people who testified. And then the bill was passed out of the committee. And then we'll go to a couple more committees for more assessment and input before it finally goes to the House floor. The Senate bill has not yet been heard, but we're hoping that that will get a hearing in the Senate health committee before long. [00:08:57] Speaker B: Matthew, I'm wondering if you would be willing to tell about your story, because you are a supporter of this bill. So can you tell us a little bit about your story? [00:09:08] Speaker C: Yeah. Was intimated. I was in a car accident when I was 13. Devastating injuries. Since then, I'm 58 now. I've had a lot of health problems. And to be honest, without medical intervention in general, I'd be dead many times. I mean, I wouldn't be here without western medicine. More specifically, I have been practicing yoga since I was 25. So I was injured. I was 13. And I founded a nonprofit, mind Body Solutions, that you already mentioned, that helps people transform trauma, loss, and disabilities. So for the last. Since 2002, I've been working with, trying to help people live well in the only body they have where living well. So, for example, we support the experience of disability, but from body to mind. So what ends up happening, in my opinion, with people with disability, especially with neurological deficit and more physical disabilities, is our culture actually tries to tell them they're supposed to overcome their body. They're supposed to succeed despite their disability and fit in. And one of the consequences of that cultural vision for healing is that they end up not liking their body very much. They don't realize that it's the only thing that will never leave them. And rather than treating their body as an object, their body is not just an asset, but it's the best home their mind will ever have. And that's even true no matter what your body is or is not doing. Two thirds of mine paralyzed from the chest down, two thirds of my body does not respond to my will. Right. But over the years of practicing yoga, I've learned that the parts of my body that don't work the way that I can control, end up being some of my best teachers. So I've been working with all levels of many levels of people living with different conditions and disabilities. And one of the things that I want to say off the bat, it's not just that I am a strong supportant of the compassionate choices, this very narrow legislation that offers choices for a very specific set of people. But I definitely am here wanting to speak, to say the thing about disability is that there are a lot of different things, a lot of different issues. It's very hard for you to generalize, or anyone to generalize all the different levels and kinds of disability. And there are definitely aspects of people or segments, people are disability who really need our societal protection. And at the same time, my position in particular with this is that I'm always wary of someone that's trying to tell me for my own good, they're trying to eliminate choices and they're taking a broad brush about disability. Right. And so part of why I am a supporter of this is I want to have the same type of choices over my life force as any human being would. And I believe that there are some people that need our protection and are not capable of making decisions. But I'm very much about trying to empower the experience of disability from body to mind. And so that's what I've been working with for years and years. And I've been trained healthcare professionals too about this. So that's a little background about how I come to this issue. [00:13:02] Speaker B: Yeah, I think you could use more healthcare professionals in your training. There's so many that seem to not get it. [00:13:12] Speaker C: Yeah. But I'd also say I've never encountered. They want to get it. [00:13:19] Speaker B: They do. [00:13:20] Speaker C: Yes. It's not just about, I think that the commitment to the well being of other people, I've met very few, if any, healthcare professionals that I did not believe had that in their heart. Right. And part of what I think is so crucial about the experience of disability, and I'm very leery of people painting us with a wide brush, is that the onus is on people disability to help people understand better. So I find myself training healthcare professionals, not just professionally, but even in my own personal health journeys. I'm also trying to help them understand the experience of disability. I want them to get it better. Right. And that's on us to tell their stories. One of the lines that there's this old Zimbabwe parable that until the lion tells the story, the hunter will always be the hero. Right. And I really like that. I have some other thoughts about disability, but I want people with disability to get better at talking about our uniqueness and our difference. We're not just one big civil rights movement, and we need to get better at educating healthcare professionals about what we need them to know. And so I'm very much trying to help people with disability as they connect to their body, actually find their own voice in ways that can help the healthcare profession better appreciate the experience of disability. [00:14:58] Speaker B: Thank you for that. Rebecca. I'm not sure if you have a disability or not, but it feels like you come at it a little bit as a non disabled person. And so for me, I'm just curious because I feel like I can see both sides of the fence. And I'm wondering, why should listeners care? If you were to tell listeners, why should they care about this issue? [00:15:24] Speaker A: Well, I think this is important to everybody because everybody dies. [00:15:29] Speaker B: Yes. [00:15:29] Speaker A: And we're all going to be at the end of life at some point in time. And so thinking about having the options to make the choices for ourselves is really what this is all about. So for me, that's just a standard. Everybody has a stake in this. [00:15:46] Speaker B: Right. [00:15:46] Speaker A: I think what's particularly important for folks living with disabilities is that there is a suggestion among opponents to the legislation that this will somehow be weaponized against people with disabilities, even though there's no evidence of that. And I think that's why it's so important. We've done surveys, and surveys show us that like every other community we survey, a majority of people, people living with disabilities support having this option, maybe 65% to 70%. So I think that folks in the disability community are like folks in every other community. There are small numbers, small groups, outspoken groups who are opposed, but really most of them are supportive. And so I just think, I want to be sure that all of those voices are coming out, because what we seem to hear the most of is concern about misuse of the law. That I think really is based on misinformation about how the law actually works and can be frightening to people, especially folks who have had a history with the medical community of being mistreated. And so there's already sort of, it's easy to go to fear and mistrust. And for me, I don't think that that's beneficial. [00:17:08] Speaker B: Right. [00:17:09] Speaker C: I also just want to pop in there quick, is that I also think it's very relevant with her perspective. Quote, I think everyone's actually disabled. Whether know you will be more at the end of life. But I also think that Dr. Thoman's perspective as a healthcare professional, as a doctor is really relevant here because some of the fear is about people that oppose this is something like horrible is going to happen in the doctor patient dynamic. And I think it's really relevant from a healthcare professional's point of view to have on this issue, too, because I'm going in as a person living with a disability. And by the way, living with a disability is hard, let's just be honest. [00:18:04] Speaker B: Yes, absolutely. [00:18:06] Speaker C: It's a struggle. And it is the case that there's inequality in people's access to medical care that they can afford. All that is true. Right. But there also is something that I always want to protect, is that is the sacredness of the dynamic between a doctor and a patient, because they're both, in almost any case I've ever seen, they're caring about the same thing. Right? They're in there, they're advocates for each other. If I see my healthcare professional as healthcare, my team as adversaries, as something I'm guarding against, I'm not going to get the best care, right. And so I really want people living with disabilities and I have complex medical conditions myself. Right. Is that I want to be able to try to make that dynamic as powerful and helpful as possible and having healthy. If you don't like a doctor, go to another doctor. There's a whole bunch of advocacy here that people with disability need to try to do, because just like anything else, if you don't like certain relationship, work to find another. And I know that's harder to do, but it's just one of these things where I hate to say it, Dr. Thomas, I think of my doctors and my medical team as instruments that help my well being. Right. And they're potentially my advocates, but there are things that I don't want to look to them for answers for. So again, I want the lion to tell the story more about what the people with disability being able to speak their mind about their experience in a way that allows them to get the best out of the medical system. Right? So I'm very much about also simultaneously trying to empower and make sure that there's advocacy for the person with disability in their dynamic with healthcare professionals. [00:20:29] Speaker B: Yeah. And I do suspect that as Dr. Thoman talked about, that there's fear. I know very few people, and I know they're out there. There's some people who at the end of their life, they're just calm and they know it's coming and on and on. But I also know people who've been scared, and it can be a scary thing. I'm sure. I hope not to experience that for a long, but I can imagine. And then the ones that have history, they have had history, as Dr. Thoman pointed out, about being maybe not heard or treated unfairly or badly when it comes to making medical decisions. So I want to touch a little more on this. I'm wondering if, Dr. Thoman, you can tell me, you did mention how many states currently are authorized to do this. [00:21:28] Speaker A: Yeah, there are ten states. So Oregon was the first one in 1997. And so they have the longest track record and then nine more states plus DC since then. And I think if you accumulate all those years and add them all up, it's close to 100 years. But Oregon has the longest with 25 years of experience. And one thing that I think is important about that is that people in Minnesota, we don't have the same experience. We're speculating on what could happen with the law and actually raising a lot of the same concerns and questions that were raised in the 1990s in Oregon. The difference is we have years, decades of experience. And what we've seen from the data that's been collected is that the people who use medical aid and dying tend to be white, well educated, insured. And so the problem really is more one of access. So no government programs will pay for this. Medicare doesn't, Medicaid does not, the VA does not. So often it's people who either have private insurance or the ability to pay out of pocket and the ability to navigate a complicated route to this option. So while we're speculating on all the terrible things, we know how this works. And actually our goal is to make it more accessible to people who may not have a lot of income. And so we actually have worked in four states that have allowed the state portion of their Medicaid program to cover the cost of the medication for people. And that's a step in the right direction. But if you look across the countries and look at the data in every state, 90 plus percent, it's done by white people with money, education and the ability to access the law. [00:23:33] Speaker C: When you pull that doesn't seem fair to me. I mean, that'd be something I wish that if someone qualified in this very narrow criteria, they weren't not able to pursue the option. Like I just had someone, a good friend of mine have die of brain cancer, just brutal and just a very hard end of the life. And he chose not. He chose to go to the very end right. And that's because of his personal beliefs. And that's part of it. It is for me, is that at least I want there to be a choice for people to do it how they want to do it. And if someone wants to do it, I certainly don't like the fact that it wouldn't be paid for and they couldn't do it if they met the very narrow criteria of the last six months of life and looking at an incredibly painful end of their life. I'm very supportive of giving the choice and then don't want someone to be denied access to that choice if they qualify and they want that kind of. [00:24:38] Speaker B: And actually, when you put it in the way that you talked about with how people have to pay out of pocket and who usually does this, it does leave, I think, a very narrow population that can even do this, which I don't find. [00:24:59] Speaker C: And again, Dr. Thoman, isn't it in the number of people that actually pursue this option? We're talking about a very small segment of population, right? [00:25:08] Speaker A: Yeah, it's a very small number of people who actually go through the process. However, what we have learned in these other states also is that there's sort of a palliative benefit to it. Just having the option available and legal gives people a sense of comfort and relief. Just knowing they can look to that, put it in their back pocket if they need it. And I think there's some indication that that makes people more able to tolerate a suffering at the end of life and to have a better quality of life. So we do have a sense that it can be beneficial just by virtue of its availability. [00:25:47] Speaker C: Because, quite frankly, I don't know what I would choose if I were to be with a terminal disease, chronic with six months to live that I know is going to be terrible. I'm not sure what I would choose. [00:25:56] Speaker B: I suspect that none of us do until we're in it. [00:26:00] Speaker C: What was that? [00:26:01] Speaker B: I suspect that none of us know what we're going to really do until we're in it. [00:26:05] Speaker C: Right. [00:26:06] Speaker B: Until it's there, and then you can say whatever you want, but once that time is there and you know that it's really going to happen to you, then it's real. I guess we see what you're really made of, so to speak. Like, did you change your mind? Do you really know you don't want to do that? Do you know how you want to do this? But it doesn't surprise me that this is taking so long because we have a government that argues over women's birth control, for goodness sakes. So this is to me, just as heated of a topic. I'm curious to know if you have a sense of how close we are to maybe accepting something like this or what it feels like is happening in a legislature in regards to this. Are they open minded to this? [00:27:07] Speaker A: Well, I would say that we have a very good chance of passing the bill this year because in part of what you just mentioned, which is our legislature has been very keenly aware that Minnesotans care about bodily autonomy. And last session they passed reproductive rights protection and gender affirming care protection. And this is sort of another part of that bodily autonomy option. And so the momentum is certainly there, and we know that the majority of Minnesotans support this. So I think those two things combined, in addition to getting some real momentum now with the bill hearings, I think gives us our best chance we've had yet. [00:27:57] Speaker C: Part of the thing that, and this comes, I'm speaking this as a private citizen that lives with a disability. I get uncomfortable. I don't know. I'm sure you share some of this with me is that to see with a broad stroke, often people disability are toted off into a public issue when someone's trying to create an emotional effect. [00:28:24] Speaker B: Yes. [00:28:27] Speaker C: I'm here to fundamentally object to that use of disability that way. I believe in the choices, but for sure I believe in what compassion and choices is doing as long as it's implemented wisely and with some procedures that make it, which is built into the law. But I'm uncomfortable often being used for, I think, the experience of the disability. We start to get platforms and public issues when someone is trying to pursue their own agenda about something, and that's part of what I object to, the fact that it might be an option in no way, in my opinion, devalues a person with disabilities whether their quality of life is worth living. I've seen things about how if you pass a bill like this, that a young disabled boy, you're telling him that his life isn't worth living. No, they have nothing to do with each other. Right. Everybody's life has value to it. Whether or not it's an option for a small segment of population does not cast doubt on whether my life as a spinal cord injured person has value. Someone else might have a choice about how they want to choose their last six months has nothing to do with the value of my life. And I don't like what I think is the exploitation of the life of lives of people with disability to be pursued, be used as a piece to get an emotional reaction against a piece of legislation that doesn't directly have to do with disability. [00:30:31] Speaker B: Go ahead. [00:30:32] Speaker C: I just feel that there's an exploitation of disability going on here that I personally find offensive because for a lot of reasons. But as you can tell, I could go on all day here. [00:30:53] Speaker B: I'm going to kind of. I think the bill is HF 1930. Is this correct? [00:31:02] Speaker A: Correct. [00:31:03] Speaker B: So people should be able to look this up and read it? [00:31:06] Speaker A: Yes, if I can. I just wanted to kind of piggyback on something that Matthew was just talking about. So from my perspective, I've been in the conversation over this bill for many years, and what I have learned is that sometimes the way people talk about their suffering at the end of life focuses on abilities like, I can't get out of bed, I can't toilet myself anymore, I can't do this or that. And that can be felt as an insult for people who may have the inability to do those things through their whole lives. I think what's missing is that really, we're talking about people at the end of life. Most of these folks have cancer. They have bowel obstructions, unremitting vomiting. They have fistulas with draining fecal matter. They have fluid building up in their abdomen. They're suffering from seizures, unremitting pain. Bone pain is so difficult to control. Brain cancer creates headaches. So the symptoms are much greater than the abilities. And I think that people can hear any talk about abilities and kind of feel like that's very insulting. So I think there's a personal response that some have to as they listen to some of these stories. But what I know is that these are folks with cancer, or they may have a degenerative, neurodegenerative disease like ALS, where they've lived with this disability. However, they're now getting to the point where they are no longer going to be able to swallow or breathe or breathe. [00:32:57] Speaker C: They're drowning in their own fluid, in their lungs. I mean, I've watched. It's tough. [00:33:04] Speaker A: So I think it's just really important to set the stage that these are folks with multiple symptoms. Often they have cancer, or their trajectory of their disease is toward death. They're not going to live, they're not going to bounce back. And so that's so different from folks who live with a static disability like Matthew has for how many years? Four years? And so I just think those two things get conflated. And I understand there's an emotional response to hearing some of these concerns. And so I think it's really important that we clarify that. And these are folks who, by and large, are also in hospice care. So they're getting multiple healthcare professionals trying to address their problems, trying to support them. And that's the context in which people are looking for this medical aid and dying. It's a gentle death, a way out, rather than going through those final stages or for some, the alternative is to be put into unconsciousness, a coma until they die. They'd rather be proactive about it, do something that can end their life while they still have their ability to think, while they can still say goodbye to their loved ones and avoid some of those final weeks or months of suffering. And so that's the profile of who uses this. [00:34:36] Speaker B: So it's interesting because I told somebody the topic of my program tonight, and they said, oh, yes, euthanasia, which is something I think that probably makes you guys cringe, talk a little bit about why there's a difference and what that is. [00:34:56] Speaker A: Well, I say it simply, euthanasia is what we do to our pets, right? We inject them with a medication. So euthanasia is when a professional, a doctor or some other health professional administers a medication to a person, usually through an injection, that is not only not part of this law, it's expressly prohibited. So really, this law is intentionally making it person patient directed. And in every state where these bills have passed, euthanasia remains illegal. So that's just one really very simple distinction. [00:35:37] Speaker B: With all the other states that are currently doing this. Are the laws similar to right down to this is how it's done so that there's not any different loophole from one state to the other. [00:35:52] Speaker A: The fundamental criteria are the same in all of the states, that being an adult, a six month terminal prognosis with a terminal disease, mental capacity, the ability to make decisions, the ability to self ingest, having to be seen by two providers. And then other than that, some of the details vary. For example, in some states there's a waiting period. In some states, nurse practitioners can provide the care. In some states they can't. So there are some differences, but the basic criteria of the five requirements, plus the two clinical professionals involved are the same and have been in place and the same across all the states and across all the years. [00:36:40] Speaker B: I'm presuming an adult to you is somebody of 18 years of age and older. [00:36:45] Speaker A: Yes, 18 or older. [00:36:47] Speaker B: That's how it's defined where a teenager would not apply, be applicable for this, even if they had six months and terminal illness, nor would a young child. [00:36:59] Speaker A: Correct. [00:37:05] Speaker B: I think the community has this very divided stance. You've got the people that are like you, Matthew, that are very pro and want their choices. They want to be able to make the choice, regardless if they make it or not, of the end of life care. They want that ability to do so. And then you have the side that says, this is a slippery slope, don't do it. How do you bring the sides together? [00:37:43] Speaker C: I actually believe that if, well, intending people sit down, we can figure that out. I think this bill tries to do a very, and I am not an expert in this bill. I mean, if you want to know what's in the bill, that's for Dr. Thoman. But I actually believe that when you understand the actual facts of what the bill is trying to do and not trying to do, when you actually make sure that systems are in place that ensure that it isn't too exploited by people, of course there are going to be people that are going to be arguing for it and suing for the access to this ability. I don't know if that's even true. I think the bill is written, so that's not even possible. I think what's happening here is there's an emotional response to think that the idea that there's a slippery slope, that all of a sudden somehow, if I'm just having a bad couple of months, I could somehow use the bill to get access to medical aid. That's just not when, and I want Dr. Thornman to comment on this. When the facts of what the bill is trying to do are actually not misrepresented, I think most everyone's going to agree it's okay. But what's happening here is not a coherent discussion about what the bill actually is, and it's made emotional very quickly. [00:39:31] Speaker A: I would add that the bill authors have been listening to feedback over the years and have made some changes in the bill to be very explicit about who this is and is not intended for. So they've added language, for example, that says if you're under a conservatorship or a guardianship, you do not qualify. The request has to only come from the person who's going to ingest the medication. There's no substituted judgment, no advanced directive, no proxies, no guardians. We've also called out that disability and advanced age are not by themselves a qualification. So we've tried to make it really explicit in response to some of the concerns, because I don't see that as changing the bill. I just see that as adding reassurance that that's our intention. I do think, though, that Matthew's right, that it's easy to get misinformation out there and things start, and then they start snowballing. And what is this really? There's no slippery slope in that. The bills really have not changed at all over the years in terms of who qualifies and the fact that this has to be patient directed. I think some of the comparisons to other countries is where that also causes confusion because the laws in other countries are very different. In some of them, you don't have to have a terminal disease. I don't think in any of them it doesn't necessarily have an age difference. You don't have to have a six month prognosis. So other countries have very different models for this, and they didn't start like the our model and slide to that. In many cases, they started that way because that's a different culture, it's a different health care system, and it's a different value system. So I think what we have is a uniquely american version of that. And comparing it to other countries, I think, can scare people. The only way we would get to that is if our state government allowed that, because this is a state by state by state law and it's controlled by our state legislature. So I think the slippery slope idea can be coming from a misunderstanding about just how the laws have played out and by inappropriate comparisons to other countries. [00:42:05] Speaker B: My understanding through all this is that you have to be able to ingest the medication yourself, right? Correct. [00:42:16] Speaker A: That's right. [00:42:17] Speaker B: So if you have a plan that you're going to do that and then hesitate and don't do it and wait, but then things go a little further and you decide, oh, I want to do this, but you're not able to ingest by yourself. Nobody can do that for you. Correct. [00:42:40] Speaker A: And I would just clarify that ingest really means through the GI tract. So most of the time that's swallowing. And for people with ALS, for example, that's a very high using population, and they don't have to be able to open the medication, stir it up in the. They have to be able to suck from a straw and swallow. Alternatively, there are people who may have a feeding tube if they can use the plunger or erectile catheter if they can start the plunger. That's the way that they can do it. So it's the definitive act of taking the medication into the body. They don't have to do the entire setup of the medication and the supplies but, yeah, it's the definitive act of taking it in through the GI tract. [00:43:30] Speaker B: No injections, and there has to be somebody there. That is what that's monitoring, that knows that this is what that person wants and somebody's not there coercing them. I think that's a fear. [00:43:50] Speaker A: Yeah, I think that's a fear based on, again, kind of not understanding how the process works, because people who request this have been dealing with a life limiting disease for a long time. They've been talking about their options. Their family's been engaged with this. It's not a one and done kind of decision. It's an ongoing conversation. It's an ongoing set of decisions. And at any time, people can change their minds. And in fact, if you look at the data from the states, about one out of three people who go through the process, qualify and get a prescription, never fill it and take the medication. So for whatever reason, we don't know. It could be that they lost their capacity. It could be that they got relief just knowing they had the prescription and decided they didn't need to take it, but for whatever reason, they changed their minds. So there's no requirement that people go through with it. And I think the whole concept of coercion is also vetted throughout the entire process of evaluating the patient because especially when they're in a hospice setting, there's lots of family engagement, lots of talking about options, lots of creating goals of care. And it's not the kind of thing where you just decide and then you're done. So there's no requirement for some particular person to be present that I think would be too invasive. But as you see how this plays out in the medical community, and we've seen how this has been working around the country, that seems to be definitely, physicians would recommend that there's somebody be there who can kind of play that medical role, help with the medication, et cetera. So the family can be the family, but that's not a requirement and hasn't appeared to need to be. What else would you tell someone who is opposed to medical aid being available? I would say that I respect people who don't believe that this is appropriate. And it's very clear in the bill that no one has to participate. No organization, no institution, no healthcare practice, no doctor, no pharmacist. Nobody is required to participate. And I think that right now, if someone were to want to take medication at the end of life to stop the pain and end the suffering, that's a crime. So we're telling people now they do not have that option. To provide that option in this really controlled setting just gives one more option to people who may or may not want to use it. So if people don't want it, they think it's wrong, they don't need to do it. But it's to the point where we're not telling other people what's right for them. So I respect people who feel like they could never do this, although I think you never know till you get in that situation what you'd want. [00:47:08] Speaker B: Yeah, I truly believe that. [00:47:10] Speaker A: But it's an option as long as we have these safety parameters around that let people and their physicians and their spiritual leaders make those decisions, not the. [00:47:25] Speaker C: And I really would also piggyback on that, saying that, like I said what Dr. Tolman said, it's like, I respect your belief that you wouldn't want that for you or your family or your loved one. I'm just not comfortable making my belief system mandatory for anybody else. Right. So the idea that what happens with the disability community is that issue gets toted out saying that we need to protect these people from ending their life prematurely. It's like, that's not what the bill does. Right. It's not defined that way. I want to give people the choice and the option to do what they feel is best for them and not have someone else take that decision away from them. To try to say that, for example, if someone really is vulnerable and we have vulnerable adult laws for a reason and is being pushed into something which would never happen under this bill. Right. Protecting that person from making that choice and stepping in is very different than denying that choice to all people with disabilities. There's a big difference here, and I don't want my personal belief system. I don't think anyone's personal belief system should be making decisions for other people. [00:49:09] Speaker B: Right. [00:49:10] Speaker C: When it comes to this very narrow set of situations. And that's why I get involved in the issue. If you have your own belief about that life is absolutely sacred, you should never have it. Any kind of the end of your own suffering, that's great for you. Do that. [00:49:30] Speaker A: Right. [00:49:30] Speaker C: But don't make that. Limit everyone else's choices based on your personal belief. [00:49:38] Speaker B: How can listeners. [00:49:40] Speaker A: Sorry. I would add that by denying this option to people. It's the wild west. People are desperate and will turn to desperate means on their own, and we don't want that. We don't need to do that. We've got the ability to do it safely in our medical system with care to be sure that it's done appropriately and that people have a peaceful death. Denying this makes people sometimes turn to desperate measures, and we don't need to do that. So to me, creating this boundary and guidelines is a good thing that we've created something safe here. Without it, we don't have any guidelines. How can our listeners get more information about the current legislation or possibly get involved? Well, I would welcome them to come to our website, compassionandchoices.org. And then you'll see a map of the United States and you find Minnesota. And click on that and you'll come to the page that tells you all about Minnesota. If you want to take a look at the bill, I would recommend going just to the legislative website, ledge Mn Gov, and just type in HF 1930, and you can get all the information about the bill, including the most recent version of it, and you can read it for yourself. [00:51:11] Speaker B: Dr. Rebecca Thorman and Matthew, thank you so much for being on. I really appreciate this. And thank you for sharing all the information that you have in regards to what's going on with it. [00:51:26] Speaker A: Thank you both so much for being willing to talk about it. [00:51:30] Speaker B: Yes, an important topic. [00:51:32] Speaker C: I appreciate it. [00:51:34] Speaker B: Thank you very much. Thank you for listening. This is disability and progress, and we really appreciate any comments that you might have on tonight's show. You can email me at where charlene? Where charlene? Where can they email at? [00:51:54] Speaker A: [email protected]. [00:51:58] Speaker B: Thank you. Yes. Hey, you're supposed to know that I. [00:52:04] Speaker A: Was tying my shoe. [00:52:06] Speaker B: Oh, got you. Well, I'd like to thank people for listening. I know this can be a very intense topic, but I always say nothing about us without us. And also, if you are concerned with what anything you're hearing, get involved. Without getting involved, you can't make decisions. You can't have yourself be heard. So it's very important. And again, [email protected] KPI.