Speaker 0 00:00:02 Dot dot
Speaker 2 00:00:56 And welcome and thank you for joining Disability and Progress, where we bring you insights into ideas about, and discussions on disability topics. My name is Sam. I'm the host of this show. Thank you so much to Erin Westendorp for podcasting us and Charlene Doll is my research team. Hello, Charlene. Good evening everyone. Thanks for joining us. And this week we have a special guest. Um, he is Dr. Seth Morgan. And Dr. Seth Morgan is a board certified clinical neurologist and fellow of the American Academy of Neurology. He was diagnosed with multiple sclerosis in 19 or 2004 and has become an activist in his community and around access things like, um, employment and healthcare issues. Earlier this year, Dr. Morgan joined a nonprofit called Compassion and Choices for a webinar on disability and medical aid, and in Dying. Medical Aid and Dying is not authorized in Minnesota, but legislation has been introduced and will be, again, this is a controversial topic, but after listening to the webinar, we felt it was important to share it with our listeners. So you may have heard Dr. Morgan, uh, here before as a part of that airing. After airing the webinar, we asked Dr. Morgan to come on and share more about this topic with our listeners. Before we get started, I will mention that Dr. Morgan is not local to Minnesota, so we'll not have specific information about legislation here in our state, but our listeners can visit, uh, compassion and choices.org for the most UpToDate information about this issue in Minnesota. And hello, Dr. Morgan.
Speaker 3 00:03:01 Good evening. How are you, Sam?
Speaker 2 00:03:03 Very well, thank you. And thank you so much for joining us.
Speaker 3 00:03:08 Uh, my pleasure. To thank you for inviting me.
Speaker 2 00:03:11 Yeah. Um, so I, I just have to ask real quick, um, since this we can go to Compassion and Choices, um, dot org for the information in Minnesota, I presume that has information for every state.
Speaker 3 00:03:27 Yes, it, it does. Um, and in fact, I looked up the Minnesota information before I came on. Uh, and quite frankly, it is, uh, uh, very, very similar to what has already been, uh, enacted in other states, including Oregon. So I feel very comfortable the proposed legislation.
Speaker 2 00:03:48 So, so we, we have the legislation here.
Speaker 3 00:03:53 Uh, well, it, it's, it's being considered this year. There's
Speaker 2 00:03:57 A, I see
Speaker 3 00:03:58 A bill this year, I believe, last I, I saw at the website. Uh, that was, uh, I guess, uh, SF 1 3 52 and HF 1 3 58. Uh, I, I did not look up the specific, uh, uh, bill itself, cuz they tend to be long and, and
Speaker 2 00:04:20 Yes, I understand.
Speaker 3 00:04:21 Leave in
Speaker 2 00:04:22 There. I may ask you for that again at the end of the show, so people can go look that up if they wish to. So, I digress a little bit, but thank you so much for coming on. I wonder if you can start out by telling us a little bit about you and your story.
Speaker 3 00:04:37 Yeah, I'm, I'm happy to. Um, I first had, uh, experience with, uh, the issue of end of life care, uh, in my own family. Um, unfortunately, my parents, uh, had, did not have good end of life experiences. And knowing their personalities, I knew that if they could be able to look down upon what they were going through, they would've said to me, this is not what I want. Um, at that point, of course, uh, there was no legislation anywhere available. So, um, I, I, I really could not do much about it. I went into, um, medicine. I got my medical degree and went on to study neurology as my specialty. And I had been in practice, I was in practice, I should say, for about, uh, you know, 23 years or so, right before my diagnosis of ms. And at, at that juncture, I decided that I could not keep up on my literature well enough to be doing a good job for my patients.
Speaker 3 00:05:46 Ah, and I decided to step away from practice, but decided that I still had something to offer. Uh, I became involved because of my own, uh, deficits, but also those of other members of the, uh, multiple sclerosis community that I interacted with. Uh, I joined our local, um, commission on people with disabilities and, uh, have been chair of that for six years up until very recently when I stepped down, uh, after my 12 year, uh, tenure on that commission. Um, the, uh, issue of, uh, death with dignity for, for various reasons was very compelling to me. Uh, not least of which that I also went through my own experience with a very aggressive tumor, uh, that luckily is in remission at this point. But, um, you know, I I also was sort of, uh, interested in seeing what, what options were available should the need need arise. Mm. Uh, so I, I had multiple reasons to be interested in the issue.
Speaker 2 00:06:52 So talk to me about what is medical aid in dying and why should our listeners care about it?
Speaker 3 00:06:59 Yeah. Um, medical Aiden dying is very specifically, uh, um, the way the legislations have been passed in this country, uh, have been very specific that it is limited, uh, in, in availability to individuals who, uh, have a life expectancy of less than six months. Um, and for whom, um, the issue of deciding how, uh, to die, uh, is important. Obviously, this is not something that is, um, something that everyone will want to, uh, take advantage of. Uh, and certainly, uh, many people, uh, even though they investigate it and, and go to the point of, uh, in, in states where it's allowed, uh, getting the medication, uh, fully, a third of those individuals never use the medication is really a, a safeguard for the situation that if, uh, suffering becomes too severe, uh, they have the comfort of knowing that they have control over how and when they exit. People who access this, um, are not wanting to die. They are dying. That is the difference. And the difference is that if you are dying, uh, not all of us wanna be in a hospital where we have no control over our own end of life. Whereas, uh, we wanna be in a, uh, environment where we feel in control and we have a right to make a decision. Uh, that of course, gets lost once you get in the hospital, and certainly if you're being sedated.
Speaker 2 00:08:48 So where is this currently authorized?
Speaker 3 00:08:51 It's actually authorized in 11 jurisdictions in this country. Um, uh, the
Speaker 2 00:08:57 By jurisdictions do you mean states?
Speaker 3 00:09:00 Uh, 10 states and one jurisdiction, which is the District of Columbia.
Speaker 2 00:09:04 Ah, okay. Um,
Speaker 3 00:09:06 The original, um, state that, uh, passed this law was Oregon, and that was in 1997. Right? I'm, uh, I'm sorry. Um, actually it was 1990, I think it was 97. Anyway, the other states are, uh, Washington, Montana, Vermont, California, Colorado, uh, Hawaii, uh, New Jersey, Maine, and New Mexico. Wow.
Speaker 2 00:09:36 And I guess I'm curious to know why advocates think this should be available.
Speaker 3 00:09:45 Well, I think speaking personally as an advocate mm-hmm. <affirmative>, the reason I think it should be available is because we, it's a matter of autonomy. It is a matter of, uh, the whole movement of things being patient centered. Um, we are so used to having things done to us and certainly within, uh, the community of individuals living with disabilities, uh, that should resonate because that's been, unfortunately something we've had to deal with for too many years. Right. Um, and, and it's really an issue of no one is saying, you have to use this. Uh, however, if the need, uh, became compelling at a stage where you had, uh, no expectation for survival plan past six months, uh, it would be a comfort for many, and not for everyone, but a comfort for many to know that the option was available to them.
Speaker 2 00:10:47 I wonder, I'm, I'm pretty sure you're familiar with Ted Talks. I mean, they're so common now. I I just wanna ask about something, or at least your thoughts on something that, um, you know, they say very few people really set up, at least not as much as people think they should set up, kind of their end of of time, if something were to happen that was catastrophic, and let alone the ones that do, it's not uncommon for people to change their mind. And so they may have things all planned out, or they may get told something and then go back and forth. I wonder what your thoughts are on this. Is this something that you feel that people do, do a lot, that have done something like this or are considering something like this?
Speaker 3 00:11:40 Well, what I want to emphasize is that nothing is done to you as the, uh, individual, uh, in the sense that it is not someone administering medication to you. Uh, it is something that first you have to be, uh, cognitively clear and able to make decisions and consider different options available. Um, and if it is appropriate based on all the, uh, all of the, um, protections that are in place to make sure that people aren't using it inappropriately or, uh, fall between the cracks as it were, uh, then it ultimately is going to be the choice of the individual. It has to be self-administered. It has to be something that is discussed and, um, reviewed in detail with at least two, uh, practitioners, two, two physicians. Um, and again, there's no, if you get the medication, there's nothing that forces you to take it. Uh, it is something that is available should the need arise, and many people live on after they get the medication and never use it just by virtue of the fact that they feel, uh, a certain degree of control in their end of life, uh, so that they can decide to, to fight on it.
Speaker 3 00:13:05 It, in fact, uh, a third of the, of the prescriptions that are filled never get used. Uh, that's the experience in Oregon. Huh.
Speaker 2 00:13:12 Wow. So did your perspective around end of life options change at all after your diagnosis, or was it different before?
Speaker 3 00:13:23 Um, I, as I said earlier on, when I was in my training, I had the experience with my family, right. And I had the benefit of having a very progressive thinking, uh, training program. So I was actually thinking about these things in advance. Um, I had the, the, the feeling that everyone should have more control over their decision making at the end of life. When I, when I became, um, when I came down with the multiple sclerosis mm-hmm. <affirmative>, and then, uh, the subsequent, uh, issues that I had, um, I, it just reinforced for me the importance of self-determination. And it also emphasized to me the very bad job that, uh, medical treatment in this country does in terms of allowing individuals to have autonomy and control in their end of life, uh, uh, uh, years. So I, I would say that it changed my, uh, thinking in the sense that I became much more, uh, uh, aggressively pro, uh, disability mm-hmm. <affirmative> in that same realm, much more aggressively pro, uh, self-determination of, uh, how we are treated and, and, and the right to make our own choices.
Speaker 2 00:14:51 I can't believe that you haven't gotten any pushback from others in the disability community, though, about, um, this advocacy. So have you, and what has it been?
Speaker 3 00:15:02 Yeah, I, I've get, you know, this is a very personal decision. Um, certainly there has been pushback. I've, I've been involved in mm-hmm. <affirmative> point, counterpoint, uh, discussions with, uh, people who, uh, have not, uh, felt this to be an appropriate option. Uh, what I would say is, just because it's an option doesn't mean that you're being forced to use it. It is exactly that. It is, uh, a, uh, it is a treatment, uh, that you have the right to choose or to not choose. Uh, it is simply opening up your options. And, and I think that the misunderstanding is that some people believe, oh, well, this is something that if I requested, I have to, I have to follow through on it. Well, that's not it at all. And, and it's not something that is done to you. It is something that you decide if and when, uh, you feel it's is right for you. Uh, and only in the very specific situation in which you are in a terminal state, you are dying at that juncture. You, it is not something that you want to die is, is basically controlling how your end of life occurs.
Speaker 2 00:16:18 Why do you think it's important for people with disabilities to be a part of this conversation?
Speaker 3 00:16:25 Well, I, I think that way too much. Uh, people with disabilities are patronized. They are, uh, we are, I should say we are, uh, not, uh, um, viewed as, uh, having valid, uh, decision making capacity. Uh, medicine is a very, um, terrible, uh, a very terrible paradigm for, for care. Either you are well, uh, in which case you don't have a disease or you are not well, and they define well as being, quote unquote normal, um, <laugh> so people with disabilities become, uh, that fringe group that, that medicine doesn't know how to deal with. Uh, and, and, uh, I understand that medicine has done terrible things to people with disabilities, and I recognize that, uh, there is a lot of, um, uh, suspicion about anything that comes from traditional medical care, and I wholeheartedly agree with that. That has to be the approach that all people with disabilities take.
Speaker 3 00:17:37 That said, uh, at this juncture, there are no protections, uh, available through traditional medicine for people at the end of life. They just aren't there. What has happened traditionally is that if you have an illness that is felt to be, uh, so severe that you're in excruciating pain, they put you in the hospital, they give you increasing amounts of medication that sedates and controls pain. Yeah. And ultimately, if they can't control it, uh, oftentimes, although it is never reported this way, but it is what happens, uh, they approach the family and say, we're having trouble controlling the pain. Uh, they are in the process of dying. Uh, what would you like us to do? And the pain medication and the sedation gets upped up, up until
Speaker 2 00:18:31 Right. Overdose,
Speaker 3 00:18:31 Either, either comes under control or it becomes a reality that that is the modus of exit and Right. And, you know, I think what I would say is I don't wanna have my life decided that way. If I'm going to have a terminal illness, I want to be able to be around my family and decide with my family when that is appropriate, and if it's appropriate for me. And that's a very personal decision. The pushback has come back, has come from groups that, um, represent people with disabilities. And I think they do it, uh, very honestly. They, they don't think that this is, uh, um, uh, a problem, but there's a degree of condescension in that, because they're basically saying, we have to decide for everyone else with disabilities. They shouldn't be allowed to choose for themselves. Mm-hmm. <affirmative>. And frankly, uh, if you, yeah, there was a study done in, uh, on the East Coast, uh, in three states, uh, that, uh, showed that people with, uh, self-identified disabilities supported medical aid and dying as an option in the appropriate setting. Uh, and this, this was people with disabilities specifically that they, they studied. So 60 to 75% of people, uh, who were, uh, asked, uh, supported the, uh, medical aid and dying for people with disabilities.
Speaker 2 00:19:59 It is interesting in the, the discussion that I've heard, and I have sometimes wanted to ask those people, well, wouldn't you want the choice to decide for yourself? Um, so I, I guess I'm, I'm not always sure of why, except I do understand, which I'll get to something in a, in a little bit. But, so about this, um, particular thing, what are the protections in the, in the place of the law like this, and how do we know that nobody is being coerced into this? Yeah.
Speaker 3 00:20:39 I, I think that's, that's, that's a, a very important, uh, question. First off, um, I just want to give you a track record, uh, from Oregon mm-hmm. <affirmative>, and Oregon has had the law on its books, uh, for, uh, at least 25 years at this point. Okay. Uh, and Oregon has a group called Disability Rights Oregon, that has been mandated to make sure that, uh, coercion, uh, does not occur with the use of this, uh, end of Life Options Act. And in the 25 years that they have been, uh, uh, in existence, they have reported absolutely no, uh, in no known, uh, cases of coercion. And in fact, if anything, the issue that they have, uh, run across is people who are cognitively, uh, intact and able to make their own decisions, uh, and weigh their options, uh, who wish to use the, the, uh, medical aid and dying option. But because they cannot physically, uh, administer the medication of themselves, they are unable to access, uh, use of the law. And, and that is a problem that, uh, we are seeing, uh, and the whole issue of how self-administered is defined may need further consideration because of that.
Speaker 2 00:22:06 So I think the term that I hear from people is euthanasia. And they'll say, well, what's the difference between, you know, between this helping someone to die, Aiden dying and euthanasia?
Speaker 3 00:22:19 Yeah. Euthanasia, um, is, is actually what happens with the example that I gave you earlier about what happens in hospitals when, uh, pain is, uh, excessive and controlled becomes more difficult, and the sedation has increased and increased euthanasia is the active, um, uh, the active administration of a medication from a medical professional or other, uh, care provider to, uh, an individual. Um, the difference here is that, uh, this, by, by the law, uh, the medical aid and dying has to be self-administered. In other words, no one can force, uh, the individual to take, uh, the medication if they don't want it. Uh, there are safeguards. You have to have at least two separate physicians, uh, or medical care providers who, uh, counsel the individual. And, and the counseling occurs across different days. It can't be the same practice. It has to be different groups. Um, and, uh, the other thing is that it, um, uh, the, the meetings with the doctors, uh, has to be with, especially with the prescribing physician, has to be one on one between the individual requesting medical aid and dying. Uh, and the physician families and other, uh, parties that might try and, and influence the decision, uh, are not allowed in those meetings.
Speaker 2 00:23:57 Oh, really? Fascinating. This is, yeah. Huh. So, I wanna talk a little bit about, you know, so I, I, I understand this. I feel like I understand where you are and where you're going here with this. And I will tell you that this, this particular show has been around for a long time, and I was not the originator of it and the originator of it. I do remember her having a show somewhat pertaining to this, and it was during the unfortunate time of the korian time where people were just irate. And I understood her feelings, too. I think a lot of the feelings were, this feels like a slippery slope. You know, you hear stories from other countries that, um, they feel like maybe those one-on-one things or doctors will be pushing this on people with disabilities. And, you know, how will they stop this once you get something like this started where they, it feels like there's really slippery lines there. Can you speak to this?
Speaker 3 00:25:12 Yeah, I, you know, I, I've heard the slippery slope, uh, argument, uh mm-hmm. <affirmative> quite a bit. Uh, and, and I understand the concern. I think it's a real concern. Um, what I can say is that in 25 years, that hasn't been shown to be the case either in Oregon or the subsequent states where it's been approved. There are a lot of safeguards. This is not something that just one rogue physician can, uh, can do. It has to be approved, uh, and, and, uh, agreed to by, uh, two separate practitioners who agree that the request is reasonable and appropriate. In fact, there are some cases that have been highlighted, uh, by the opposition about, uh, situations where people, uh, have requested the medication. Uh, however, uh, looking up those cases and, and getting more information about them, in fact, the soft, the safeguards worked. Uh, in fact, uh, the first physician said, no, let me send you to another physician for a second opinion.
Speaker 3 00:26:19 The second physician said, no, uh, that individual had cancer and, and said, let me put you on appropriate chemotherapy. And the cancer went into remission, and that person never was, uh, even offered the medication even though they requested it. So, you know, I, there are safeguards out there, um, that I think do work. Uh, and, and I think the track record, uh, has shown that, uh, you know, the argument about, well, what's happening in other countries has been around, uh, for as long as the issue of medical aid and dying has been around. Right. Uh, and, and just looking at the European countries, uh, and more recently, Canada, uh, the answer is, we are not Canada, and we're not those countries. Uh, our law, uh, is different. So to look at other countries and say, well, they're doing it this way. Yeah, they're doing it that way. Uh, but that's not what is being proposed or being, um, enacted in this country.
Speaker 2 00:27:22 And do you feel like, like you would know if, if something had slipped through? I mean, because one, I, I guess I feel like one false thing that was report, or one thing that was reported, and, and, you know, then everyone would be up in arms.
Speaker 3 00:27:39 Oh, yeah. No, I, I, I would not support this if I had any concerns. Uh, you know, I was not on this bandwagon, uh, early on in the process because I wanted to get a feel for, uh, how the safeguards worked. Uh, did I feel they really had it right. Um, and I can say now that we have a track record in, uh, 10 states and one jurisdiction, um, that has, has a, a, a long, uh, track record of experience. It, it, it is working the way it should, you know, nothing is perfect in life, of course, uh, there's always gonna be, um, abuses of anything that you wanna consider. That's why we have laws, and that's why we have protections. Uh, all I can say is that the protections that are in place for the medical aid and dying that is currently available in the states where it is available, uh, have been working and, and are working, and we're just not seeing the abuse that everyone has been concerned about. And I was concerned about before I actually, uh, studied it in detail.
Speaker 2 00:28:51 I, I have a question that's just kind of popped into my brain. I, and I don't know if you know this or not, but I always think about, you know, people in their life insurance policies where they get kind of sticky with things that aren't on the up and upper, or if there's anything that might look like suicide or anything like that. Mm-hmm. <affirmative>, uh, is, is the, are these lines clearly enough drawn so that there's no question here, and people won't have trouble with that?
Speaker 3 00:29:21 Yes. Uh, and there is, uh, there, there's wording in these legislations and, and, uh, I've certainly seen, uh, most of them we've been dealing with it in, in my, uh, home state as well, um, specifically stating that, um, the, uh, the, the cause of death at the end of life, it, it isn't that, uh, you are, you are dying from what's your underlying condition. Mm. Uh, you are not dying from, from anything else. And the fact that, that you take this medication does not change the fact that the, the ultimate underlying condition is the, the, uh, illness, uh, the, the cancer or the als or whatever, uh, intractable condition that can't be, uh, cured and, and has a life expectancy of less than six months. So it, um, uh, it has not been an issue legally or with insurance for anything else.
Speaker 2 00:30:21 So you talk about a life expectancy of less than six month months. Um, how quickly does something like this take to be, to put in place?
Speaker 3 00:30:32 Well, actually, that's been, that's a great question, because that's been one of the, um, perhaps one of the, one of the, uh, shortcomings, uh, is that because there are so many safeguards in place, um, there are those people who never, even though they would like to qualify for it, uh, their disease, uh, takes their lives before they get a chance to control their under life. So, yeah. Uh, certainly, um, it, it is an issue. Um, and, and in fact, for, for that reason, sometimes, uh, the laws try to shorten some of the waiting periods, but they don't eliminate them as a rule. It's, it's an issue of just making sure that you're not being asked to wait two weeks between, uh, uh, evaluations, but maybe cutting it down to, to, to, uh, a week instead, that sort of thing.
Speaker 2 00:31:28 And you said you need two different family members?
Speaker 3 00:31:32 Uh, no, no, I'm sorry. Two different physicians. Okay. Or medical, medical, uh, uh, practitioners, uh, most states specify physicians. Some will allow at least one of those people to be a nurse practitioner. But, uh, most of the ones that I have seen, including Oregon, at least initially, were physicians.
Speaker 2 00:31:55 And what about family members? Is there any requirement of them being involved? And what happens when they say, absolutely not, you can't do this <laugh>? Yeah.
Speaker 3 00:32:06 Well, you know, that's a great question, and, and I think it's a very valid one. Uh, I think it's a matter of, um, the individual needs to be open and talking with their, uh, loved ones. Um, when, uh, when it is done the way, uh, I've seen it done most effectively, the family have been behind the individual in their choice, uh, and have been involved at every step so that it hasn't been an issue. Uh, but again, this is something that is, um, a personal decision. It is not something that can be overridden by anyone else if they fulfill the criteria, uh, for, uh, for, for self-administration of the end of life, uh, medication.
Speaker 2 00:32:53 And I believe is there, there's counseling for the families in this place, Absolut,
Speaker 3 00:32:58 Most everyone who goes through this, it's interesting because, um, in fact, the, uh, this medical aid and dying has actually increased the, um, uh, utilization of, uh, hospice care in states such as Oregon, uh mm-hmm. <affirmative>, and, and hospice care is one of the most wonderful things that gives you support, uh, when your, uh, end of life, uh, is, is imminent. Um, it is just another tool in the armamentarium of, uh, the, uh, caregivers. So it is, um, it is not separate from, uh, uh, hospice care or, uh, palliative care or any of the other specialties in medicine. It is another tool in that, uh, toolbox of, uh, uh, treatment options.
Speaker 2 00:33:52 So, I wanna touch on the pandemic. I can't imagine how this went during that time, and how did this work change, um, when such limitations were set on family and, and people being just with the patient?
Speaker 3 00:34:14 Well, I, I can, I can't speak to the, uh, end of life, uh, um, medication issue. Again, we are talking about something that isn't in the hospital, so it would be the same, uh, out of, uh, hospital experience. Uh, however, I can tell you it was very depressing being in a hospital, um, with cancer, with inability to have any family members around. Um, so I, I, the pandemic created an incredible, uh, problem for everyone going through every medical illness, uh, during those years. It, it was, uh, not something that I hope we ever see again.
Speaker 2 00:34:56 Did you see an increase because you know, that, you know, these people that got cancer or anything else that may have been fairly serious once you got covid that just seemed to tenfold it?
Speaker 3 00:35:13 Uh, absolutely. Uh, and, and, you know, it is, uh, the Covid pandemic, uh, has been a major issue mm-hmm. <affirmative>, um, in terms of healthcare. Um, however, uh, you know, it really, covid is not a reason for being, uh, able to, to use end of life care. So it, there are different issues within medicine, but they certainly, it certainly has complicated everyone's, uh, medical care, uh, for many years.
Speaker 2 00:35:46 That's true. But it often brings on other things. Right. I mean, I've, I've, I know I have had a friend who developed a heart issue, he had had cancer previously, and it was just like covid made that much worse and to the point where he just couldn't keep fighting it
Speaker 3 00:36:08 Now. No, I, I, absolutely, that is correct, and, and I, uh, I absolutely agree with you, uh, that it is complicated everything, uh, for all of us. Um, and it, it, it's been a, a terrible, uh, pro and continues to be a, a terrible problem, particularly for, uh, at this juncture. Elderly individuals in this country seem to be more, uh, prone to the major complications, uh, even at this stage of, uh, the disease when things generally maybe are, are slowing down or, or calming down a bit. Uh, we're not out of the woods yet. Absolutely won't. So, uh, yeah, it, it has been a major complication.
Speaker 2 00:36:51 What do you see for the future of medical aid in dying?
Speaker 3 00:36:57 Um, I am hopeful that it'll become more mainstream as an option. I, I don't want it to be, um, first off, I don't think it'll ever take over, uh, as the way that people, um, have their end of life experiences. It's so specific, uh, as it is, uh, uh, as it is defined. You have to have a terminal illness with a specific, uh, life expectancy and, and that just is not a gigantic pool of individuals. Uh, so I, I don't think that it's gonna be massive in, uh, increase, uh, even if it's approved, uh, through all the states. Uh, I think it's gonna be an option that is gonna be, again, in that group of, uh, options from, uh, hospice care and palliative care. Uh, but it is never going to be, I think, uh, the main, uh, mode of, uh, end of life.
Speaker 2 00:37:57 And just so people understand the, that this particular thing is, you know, when you're in terminal a terminal illness mm-hmm. <affirmative>, my understanding is that it is something you need to do. As you said, you, your loved one cannot do it for you. The doctors cannot. This is something you have to be able to administer, minister.
Speaker 3 00:38:21 Yes, that is, that is absolutely correct. It, it is, again, I, I refer to it as being a, um, uh, an option that is self-determined. And, and I understand that for many people, for whatever reason, be it religious or just, uh, uh, their own personal beliefs, uh, it's not gonna be an option that they're going to want or, uh, will, uh, consider. Uh, however, I would say that all I'm saying is I think it should be there, uh, for people to at least, uh, have the opportunity if they are so inclined to consider it. And I don't know if I would use it. Uh, it's something that is a very personal decision, and you have to really be up on, uh, it as a, uh, real issue. Uh, we can talk about it in theoretical terms all we want. Ultimately, the person, uh, uh, with the, with the condition is gonna have to make their own decision when they, they, uh, reach that point if they want to. Again, they don't have to.
Speaker 2 00:39:29 And I presume that most people don't know if they would do it or not until the exact time comes.
Speaker 3 00:39:37 Exactly. And, and that's why the, the statistic that a third of the individuals who, uh, received the medication never used it, even though they had the, uh, opportunity and the right to, and they had actually gone through the steps of getting the medication, the fact that a third of those never used it simply points to the fact, I, I view it as it gives them the, uh, comfort to know that they can fight longer. Uh, and, uh, just because they have that as an option, should the discomfort become too severe for them,
Speaker 2 00:40:12 Or did they get, you know, did they slip off the slope where they got too bad before they realized it and weren't able to do it?
Speaker 3 00:40:22 Uh, that, that could be, that could be, I, I think more, um, when you get the medication, you, uh, you are, uh, cognitively intact and aware of what you're getting and deciding what you want. Most people, uh, or not most people, uh, many people will put it away for, for future consideration. Uh, I, I don't think they just forget about it. I think it's really, uh, we're talking about for a short timeframes here, I think they know they have it there. It's a matter of deciding, do I need it now or is it something that I should consider, uh, as I go forward, if I, if it becomes unbearable
Speaker 2 00:41:02 For them, I didn't mean, um, they necessarily forgot. I meant maybe they got, they got worse before they thought they were going to. And so what happens if that happens and they're not able to administer it, administer it, they just fall back into the medical, um, way of things.
Speaker 3 00:41:21 Yeah, that's, that's absolutely correct. You know, it's, again, uh, for some people that's what they want. They want, uh, the, the medical system to, uh, to make the decisions and, and not make the decisions, but rather, uh, give them the treatment that a traditional medicine is able to give them. Uh, again, this is just a matter of, is that what you want? Uh, or do you want, uh, a different approach with more control, uh, in individually? And I don't think there's a right answer or a wrong answer. I have, you know, I respect whatever choice is made. Um, it's just, uh, you ultimately go with what feels right to you at the time. And, and until we get to that point, uh, I'm not sure any of us will really be able to predict what we would do, um, in our own, uh, situations.
Speaker 2 00:42:16 Dr. Morgan, I really appreciate your time tonight, and thank you for being on the show. Uh, I was wondering, you mentioned some legislation that was being looked at, I think currently or coming up. Could you tell us again about what people should look for? Is it if they would be interested in looking that up?
Speaker 3 00:42:37 Well, what I would say is, uh, if you, uh, want to know what is happening in your state, uh, some states have, as I said, approved it. Uh, some other many states are considering it. Um, you can go to, uh, uh, compassionate Choices, and you, they have a list of, uh, all the states, and they can give you a, uh, a report of what the current status is, which states are considering legislation, which ones have approved legislation, which ones are not considering it at this time. Um, that there's a, there's a map. It's, it's pretty neat. You can just click on the state you wanna, uh, look at and they'll give you the current status.
Speaker 2 00:43:22 Um, I just wanna toss it over briefly to my research team, Charlene, and see if she might have any questions for you.
Speaker 4 00:43:32 Sure.
Speaker 5 00:43:33 Um, at the end, when the person has made their decision, is there an investigation to make sure that that's what actually happened?
Speaker 3 00:43:44 Um, I'm not sure I understand the, the question. Um, can you expand on it at all? I mean, you have the medication, uh, and it is to be self-administered. Uh, the real issue is if you didn't take it, then, you know, states have, uh, mechanisms for reclaiming the medication. So it's not just floating around, but, but, uh, what, what exactly did you, did you have in mind in terms of the question? I'm sorry, I didn't understand.
Speaker 5 00:44:17 What, what if a family member decided for the person and they gave it to him? I mean, can that happen?
Speaker 3 00:44:29 Uh,
Speaker 3 00:44:31 Y you never say never. I guess what I would say is, uh, the law is very specific that it has to be self-administered and it is issued to the individual. Um, and, uh, a family member doesn't have any right to take it away from the individual or to force the individual to take it. It is, and, and, and when you get it, it is something that you are cognitively aware of and able to make your, your personal choice. But, you know, that's why we have laws. Nothing is perfect in this world, uh, and you have to have protections. Um, and as I said, currently there are no protections, uh, in states that don't have the medical aid and dying. Uh, it's pretty much left up to what the doctors want to do and the family wants to do when you're in the hospital. So, uh, I, I think this is a, a better option in my opinion.
Speaker 5 00:45:24 I worked a lot in, uh, the VA in North Chicago and in hospice care, and, uh, it was a big problem. And, uh, I'm glad to see that there's movement in a way that can make a person at the end feel like they had control.
Speaker 2 00:45:44 Dr. Morgan, is there anything more you'd like to leave us with before we go?
Speaker 3 00:45:49 Um, again, I just want to emphasize that when, when groups, uh, come out in favor or against, um, I, I find it, uh, to my personal, uh, view offensive because I don't think it's a group decision. It is an individual decision. Yeah. For each person. Uh, and to say that as a group we support it, or as a group, we, we don't support it. Uh, I think misses the point that autonomy and self decision is the important point here. Yes. And, uh, you know, there's no right or wrong answer to it. It should not be mandated by the state. It should not be mandated by groups. It should be an individual, uh, decision making process. Uh, and whichever way it goes, that's the right way for that person.
Speaker 2 00:46:42 Dr. Morgan, thank you. I wish the best of of luck in your endeavors, and thank you very much for giving us your time.
Speaker 3 00:46:50 Yeah, thank you very much for inviting me.
Speaker 2 00:46:54 Good night.
Speaker 3 00:46:55 Good night.
Speaker 2 00:46:58 You've been listening to Disability and Progress. We were speaking with Dr. Seth Morgan, Dr. Morgan as a board certified clinical, uh, neurologist who is a fellow of the American, uh, acade academic of, um, neurology. Um, he came on to talk about the medical aid and dying, and I really appreciate that. I also want to, um, let you know that if you'd like to, um, be on our email list, you can email me at disability and progress sam jasmine.com. Also, if you'd like your name mentioned, we will be happy to, you could be part of the Disability and Progress Listener Club. Just email us your name and where you're from, and we will mention it on the air. And if you would like to comment on this topic, we would love to hear your comments. You can of course email us at Disability and
[email protected], and I'll happily respond the best I can or send your comments on to Dr. Morgan. My name is Sam. I've been the host of the show, and Westendorp is our podcast person. And Charlene Doll is my research team. Thank you Charlene. And thank you everyone who makes this show work. Good night.
