- Hello everyone. Thank you for joining us today for Access Living's Webinar on Disability in the Position to Assisted Suicide. My name is Ryan McGraw and I am the Healthcare and Home and Community Based Services Community Organizer at Access Living. My pronouns are he and him, and my visual description is that I am a white person. I have on a gray polo shirt and have dark brown hair. Access Living is a living that ignites living really power implied and provides critical services that break down systematic barriers to create a stronger, more inclusive society. This is the second webinar that that Access Living is hosting enhancing the quality of life near the end of that. The first webinar recording and the first recording of our first webinar is Palliative Care is Available at the Access Living website. Before we get started with today's discussion, I would like to go over some important accessibility guidelines for today's webinar. There will be two ASL interpreters for today's webinar available. If you need them, please pin them. If you need help doing that, please use the chat function at the bottom of your screen and someone will help you do that. If you need access to Spanish interpretation please call 267-930-4000. The participant access code is 742185485. The Spanish interpreters will be on the line. May I ask the Spanish interpreter to end the call in today's webinar to repeat that number for anyone who may need this. - [Interpreter] Thank you. - Thank you very much. You can access and captioning by clicking at the tap CC icon at the bottom of your screen if you need assistance during the webinar, please type in the access or all the needs you have within the chat and someone will be able to assist you. Okay, Access Living is often seen as an Organization that supports the choices of people with disability want and want to make about their own life. However, Access Living does not support the legalization of physician assisted suicide. There are a number of reasons for why physician assisted suicide may be used inappropriately when recommended for people with disabilities. We will hear about those reasons today. Physician assisted suicide is not legal in Illinois. However, there are a number of groups who wish to create a bill to legalize it. As you listen, keep in mind that not all people with disabilities share the same views and opinions on physician assisted suicide. Please know that we respect your opinion on this matter, whatever it may be. Today we are joined by three panelists, Diane Coleman, Anita Cameron, and Ian McIntosh from Not Dead yet, and the Patient's Rights Action Fund. Both of these Organizations are national groups that oppose the legalization of assisted suicide in euthanasia and deadly forms of discrimination against old, ill and disabled people. I will now ask the panelists to introduce themselves and then they will share a short PowerPoint presentation. After the PowerPoint point presentation, we will have a panel discussion led by Access Livings, healthcare and Home and Community Based Services policy analyst. Thank you and panelists will you please introduce yourself? - Why don't we? Yeah, Anita, why don't you start? - So, good afternoon everyone. My name is Anita Cameron. I'm Director of Minority Outreach. Of Not Dead Yet, a visual description. I am a black woman with long locks and wearing a kind of multicolored shirt and Diane ill pass it to you. - I'm Diane Coleman, I'm the president and CEO of Not Dead Yet, and I'm a white, gray-haired woman with glasses, a red sweater and a breathing mask and use a motorized wheelchair. Ian. - Thank you Diane. Thank you, Ryan. My name is Ian McIntosh. I'm the Deputy Coalitions Director for Disability Outreach for the Patient's Rights Action Fund. I'm a middle-aged man with short brown hair, gray plastic glasses, white button down shirt. And I think that's it for my introduction. - Perhaps we should just begin the PowerPoint. - [Ryan] Yes. Can you please begin the PowerPoint? Yes. - Okay. Slide one. So this is disability rights opposition to assisted suicide laws, today, Wednesday, April 5th, 2023. Anita Cameron was not there yet. Diane Coleman was not there yet. And Ian McIntosh with Patient's Rights Act action crime. Next slide please. So what are assisted suicide laws? Generally, they allow doctors to prescribe lethal drugs to patients diagnosed with the terminal illness, with the prognosis of six months or less to live if certain procedural steps are followed. Next slide please. It's a good place to start. So where assisted suicide is legal, some people's lives will be ended without their consent through mistakes or even abuse. No safeguards have ever been enacted or even proposed that can prevent this outcome, which can never be done. And this is from Marilyn Golden. She passed away last year, but she was with the disability rights education and Defense Fund so side force Terry's story. Terry says at the, can you go back please? Okay. No, please. Yeah, four. Thank you. So Terry says, at the age of 19, I had an automobile accident while I was laying in the hospital bed, the doctors would come in and ask my mom if she was ready to pull the plug on me. What kind of life will she have? She won't, she won't be able to dance, walk, work, have a social life or be independent. Next slide. This Terry's story continued and she says, then they work on me. Are you sure this is something you can live with? If I chose, no, they would keep me off the ventilator and I would die. I could get injected with morphine, so I couldn't feel it. And this is from how we die, Value Choices, conflict, and the web page for the http:/4/how-we-die.org/how wedie/story. Question mark. SID equal four. Next slide, please. This is Terry Lincoln's actual future. Terry leads a very active life. She became a disability rights activist. She gave birth to her daughter and she found it and remains present of a disability rights Organization in Ohio. And I can tell you Terry's a personal friend of mine. Her daughter just turned 12 years old. She's a girl scout and Terry actually is that she runs that I don't know what they call the troop. I think they call them. So Terry now runs her daughter's Girl Scout troop. So she is definitely active in her community. Next slide, please. How do racial disparities in healthcare relate to assisted suicide? So blacks are at risk from assisted suicide laws because racial disparities in healthcare leads to limited health choices and poor health outcomes. It makes it more likely that doctors will write off patients as terminal. It makes it less likely that patients can afford lifesaving treatment, and it makes it less likely that patients will receive adequate pain treatment. - Sorry for my delay in clicking the right buttons. Thanks Anita. And thanks to Access Living for inviting us to talk with you about this topic. I'd like to say a little about the history of disability and assisted suicide. In the 1980s before disability advocates were talking about the issue, we learned about treatment withholding cases when people who needed life-sustaining treatment were either deciding to die rather than at least try living with disabilities or others were deciding for them. Then in the 1990s, Dr.Jeff Jack Kevorkian's body count was two-thirds disabled people who were not terminally ill, even though the media said they were. So adapted, not dead yet protested outside the cottage where Kevorkian was living in June, 1996. Then with the help of Mouth Magazine, we Organized a rally of 500 disability advocates when the US Supreme Court heard two assisted suicide cases. Next slide, please. Over the next few years, major US National Disability Groups took positions opposed to assisted suicide laws. They included ADAPT, American Association of People with Disabilities, Association of Programs for Rural Independent Living, Autistic Self-Advocacy Network, Disability Rights Education and Defense Fund, National Council on Disability, National Council on Independent Living, TASH, the Arc of the United States and United Spinal Association. Next slide, please. Most reasons given for assisted suicide are disability issues. The Oregon data from the first state to legalize shows that the top five reasons that people request assisted suicide are disability related concerns that have not been effectively addressed. The data suggests that virtually all who die by assisted suicide have disabilities. Many people, however, outlived their terminal diagnosis, but they're still disabled. Next slide please. Here's the Oregon data on patients top five reasons. From 1998 to 2022, in their official reports, 90% felt that their terminal condition represented a steady loss of autonomy. 90% were concerned about decreasing ability to participate in activities that made life enjoyable. 72% loss of dignity, 48% physical or emotional burden on family, friends or caregivers, and 44% loss of control and bodily functions such as incontinence and vomiting. Next slide please. The diagnoses of terminal illness are often wrong is one of our concerns. Oregon type bills define terminal as incurable and irreversible, even if that's based on the denial of treatment by insurers that make it terminal. Terminal predictions that someone will die within six months are also unreliable. 12 to 15% of people graduate from hospice, which requires the same six month terminal prediction. Next slide, please. We're concerned that doctors quality of life judgments will also be a factor. A recent study found that quote in a survey of 714 practicing US physicians nationwide. 82.4% reported that people with significant disability have worse quality of life than non-disabled people. These findings about physicians' perceptions in this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability. This is a study by Lisa I Lezzoni that I hope most of you have heard about from 2021. The citation is there. Next slide, please. We also can't ignore the realities of elder and disability abuse under assisted suicide laws an heir or abusive caregiver can encourage an elder to request lethal drugs, find the forms as a witness in some states, pick up the lethal drugs and even administer the drug with or without consent because there's no independent witness required at the death under these laws. So who would know? The New England Journal of Medicine says that one in 10 elders are abused in the US. Next slide, please. Assisted suicide creates a discriminatory double standard. If you're non-disabled and want to kill yourself, you can be offered suicide prevention services. If you have a disability and want to die, you could get assisted suicide assistance. Ian, you're next. - Great. And so it's a kind of ableism, not unlike racism and sexism where it's classifying entire groups of people is less than perpetuating harmful stereotypes and the lack of oversight, a secrecy rather than transparency. We've found that underlying data in Oregon is destroyed annually. That data itself, is self-reported by prescribing doctors. There's nothing to compel them for honest diarization of the data that's being provided or not provided. And there are too few questions that are asked with no verification or investigation as to why. As a result, death certificates report the cause of death as the underlying disease rather than the assisted suicide itself. Next slide, please. And so regarding the issue of choice, while some individuals may be safe for mistakes, coercion and abuse, a public policy of assisted suicide ignores the significant impact on society for a larger group of people who don't have access to high quality healthcare financial resources and a loving family. With assisted suicide laws as the points above illustrate choice for the few means harm for the many, and we'll be delving into mental capacity and autonomy and what real choice actually means. Next slide please. And so, number of states are engaged in suicide expansion bills as to who can provide assisted suicide, branded medical aid and dying by proponents terminology such as a medical health provider has been employed in various expansion bills, advanced practice, registered nurses, physician assistance, et cetera. So who can, and this relates to who can determine the decisional capacity, should read medical decisional capacity, a clinical soldier worker, advanced social worker, mental health counselor, psychiatric advanced registered nurse, practitioner. Included in the expansion bills are the reduction or the elimination of waiting periods, which obviously points to the diametrically opposed constant advertisement that assisted suicide laws are for just the terminally ill and are meant to be rare. Next slide please. And advertise safeguards never work. Healthcare costs cutting pressures. Assisted suicide is often offered as the cheapest treatment. No independent witnesses are required at the bedside. If the person has struggled, who would know? Clinical estimates for survival amount to guesswork with diagnoses of six months, often being wrong and people out living. In fact, they're diagnosing possession. Next slide, please. Depression, family social issues, home community-based service issues need not be addressed. The minimal reporting by a prescribing doctor with no verification, no investigation, and no meaningful oversight required as always breached. Next slide please. No sanctions for failing to ensure eligibility or to conform laws provisions. There's no means of enforcement. Expansion of eligibility and loosening restrictions are already being promoted. And next slide please. There's a quote that speaks to this. So Bait and Switch: The Road Ahead. In 2015, Barbara Coombs Lee, the former president of Compassion and Choices, said, "We applaud and think the Supreme Court of Canada for placing the patient at the center of fundamental end of life decisions. The eloquence of this ruling will inspire everyone who believes in individual free of life's end. We in the US agree that denying people the ability to determine their own medical treatments and the degree of suffering, the endure curtails, liberty, we are heartened as availability of aid and dying in Canada will have an impact here." It's the type of impact the states doesn't want. And again, speaking to this constant campaign that assisted suicide laws are always going to be rare terminal never expanding. James Sorell, the executive director for Death with Dignity. Massachusetts recently said, "Once you get something passed, you can always work on amendments later." And back to Neelam. - Hello everybody. My name is Neelam and as Ryan had mentioned earlier, I am a healthcare policy analyst at Access Living and I will be facilitating the discussion panel discussion portion of the webinar. My pronouns are she and hers and my visual description is I'm in a wheelchair, I am Southeast Asian, I'm wearing black pants, and I got short sleeved pink top with polka dots. So there. Now let's get started. We have a lot of great questions lined up today for the panel. For this webinar we wanted to allow our panelists time to prepare so we are not conducting an open question period at the end. Participants were asked to submit questions in advance when they registered. The questions we received will be asked after the main panel discussions. So let's get started. It's often said that assisted suicide legislation is for people who are terminally ill. Is this realistic? What are the problems with this type of framing? - I'm going to tackle that one. - [Neelam] Okay. - Back when disability advocates first got involved in this issue, the Hemlock Society leaders, they were the big group at the time, wanted assisted suicide to be legal without requiring a terminal illness. And they wanted family to be able to choose in some cases assisted suicide for, I'm quoting here from one of the leaders, a demented parrot, a suffering severely disabled spouse or a child. So not dead yet, protested at the Hemlock Society headquarters in Denver. Hemlock also supported Jack working's legal defense. Again, the majority of his body count was people with non terminal disabilities. But changed their name a couple times. They formed a new corporation with new leadership that started out with Barbara Cosley, who was already been mentioned by Ian. And she was one of the authors of the Oregon law. And they began to change their messaging to focus first on terminal illness. It's not clear what truly terminally ill means. Terminal illnesses that will kill us can last a long time, even years. I'd say that a couple of us on this panel had that and doctors play a major role in evaluating that. Studies show however, that doctors can overestimate or underestimate how long we have to live. I think that's a common experience in the disability world that we're told we're going to die sooner than we do. We also know that there are other factors that can impact doctor's views. They often go by statistics. They may go based on their own experiences with other patients, even though those may not be representative more broadly. They have perceptions about people's support systems life situation, quality of life, whether they feel that you comply with their advice, influence how doctors interact with us and what they think about us, and therefore what they think about our future is going to look like. But assisted suicide laws in the US are currently based on the doctor's predictions that the patient will die within six months. So research shows they're not really very accurate that far before death. But that does correspond to hospice eligibility. If you have a terminal prognosis within six months, you're eligible for hospice under Medicare, for example. So that's really why they settled on the six months as the basis of assisted suicide laws, even though doctors aren't really that good at predicting, which is kind of shown also by the fact that lots of people graduate from hospice and have to be renewed for that. Some of the proponents of assisted suicide laws have, expressed that they want more. There was a proposal in one of the Western states to go with one year that haven't happened yet, but some want and expect the terminal requirement to be dropped over time as it was in Canada, which you'll hear more about. - Okay. - So I think that kind of covers what I wanted to say, but about that question. But let me know if there are other thoughts. - And Ian here, just to supplement one of Diane's points with respect to assessing there's the historical median average of the physician patient relationship according to Oregon Stats from, I think it's 1998 to 2021 shows a decrease from 12 weeks in the physician patient duration to five weeks, interestingly, to five weeks in 2021. So familiarity with the patient has decreased, obviously COVID exposed all sorts of levers of ableism. But it's worth perhaps mentioning as well that in Canada only 14% of physicians knew their patients that there's a great need for investment of time and consistency of care in the physician patient model. - I'll add something to that too. You made an important point about the duration in the US initially when doctors haven't been all that warm to the idea of participating in this. And so people ended up calling compassionate choices, their arguments I mean are articles about that. But they, one was done by disability rights education Defense fund that this doctor shopping idea. So people would call up compassionate choices and get referrals to doctors that were wared to doing this. - Oh wow. Okay. Thank you so much for that. Moving on to the next question. In Chicago, it is well documented that we have a racial death gap. White people who live in the Gold Coast live about 10 years longer than black people on Chicago's West side, for example. How might this situation affect how people think about assisted suicide? - This is Anita, I'll take that full disclosure. I am from Chicago. I was born on the south side and I lived on the west side in the area called Austin. And I think that for those of us who know these things and who have that healthy suspicion of the medical profession, it's just they're not going, they're obviously going to be suspicious of assisted suicide, especially if they're poor. - Okay. - From, yeah. So they're going to have that suspicion of assisted suicide. I was thinking because comedian Dick Gregory, he was a civil rights fighter and comedian just passed away a couple of years ago. He had a thought, and it makes a lot of sense on this he said that if you weren't concerned about us having a good life, why now are you concerned with us having a good death? Because we know the racial disparities, the studies the experiments and things that went on it, they didn't care about us having a good life, then now all of a sudden you want us to have a good death. So yeah, yeah, yeah. It's going to lead to people having definitely in those neighborhoods definitely on the south side, on the far south side on the west side? Yeah. That, especially those folks living in those neighborhoods, they going to know, because we don't have that much at all in those neighborhoods as far as good healthcare, good mental healthcare, And also I can only imagine that if assisted suicide even, tried to come to Illinois particularly to Chicago, people going to be real suspicious in those neighborhoods. Yes. People will be very very suspicious. Thanks. - Yes. Yeah. And this is why I wanted to say this earlier to Diane who mentioned hospice care and palliative care and, we did a webinar on this, our first webinar that we did last time was on this topic. And I'm glad, Diane, that you mentioned that because there's so many people who do not know anything about alternative options of hospice and palliative care. - And more likely if you are somebody of color, you're going to be less likely to know that. - [Neelam] Yeah. - 'Cause your doctor isn't necessarily going to tell you. There may be certain assumptions that they may make about, us culturally or whatever that says, I'm not going to bother. And why bother? So. Yeah. - Yeah, I don't understand why doctors don't talk to patients about this option. But moving on, I'd like to follow up on this a little more. Assisted suicide proponents tend to be white and middle or upper class, but some people of color also support it. Why is race and class status an important factor in considering who is for or against assisted suicide? - I'll take that one too. So you're right. in that assisted suicide proponents tend to be white, wealthier well off when people of color, and this isn't always true, but when people of color become proponents of assisted suicide, they tend to be professional class folks. They tend to be wealthier, well off, professional class. They tend to get to the point where it's like, okay, I have assimilated enough in the dominant culture that, okay, I'm making more money. I got this, I expect my doctors to treat me well. I expect that now I, the old racial or ethnic or poverty stereotypes don't apply to me anymore. And so they tend to think more like the dominant culture. And they tend to if they've moved up upwardly mobile and whatnot you tend to want to fit in and share the beliefs, and you tend to think that you have more control. And let's get real compassionate choices has been making enrolls into the Latinx community and the black community in particular. And then you get these professional organizations among like for instance, there's a black nurses association, I can't remember the name of it right now, who have become proponents of assisted suicide. - Okay. - And compassionate choices. I think what they tend to do is they tend to put it to you as if assisted suicide is a right that you're supposed to have, that they're not giving you the right to, or they're not telling you information about this quote unquote, right. If you are a doctor and you deal with your patients the way you taught in medical school. I mean you still have, there's a 2000, was it 2016 study where a third of white doctors, medical students and medical professionals still thought that blacks had thicker skins like animals and therefore are higher tolerance of pain. And that reflects in the way that the studies show that blacks don't, in particular don't get access to good pain treatment. But so when these doctors are deciding, your wealth, I mean, rich people, rich black women still die in childbirth. We still have situations where people with dark skin, whether you black or whatever, people with dark skin have a harder time getting their veins for blood and whatnot, or have a hard time seeing the vein because medicine was made for the dominant culture for white folks. And it shows, but unfortunately when you have, and I don't know why, but you have a largely white organization coming up into communities of color trying to bamboozled you into but we're not communities of color. We're not monoliths, we're not monolithic, disabled people aren't wealthier, people aren't or whatever. And so you're going to always have some of those folks of color who espouse who take on, who become proponents of that. But largely, I have to say, compassionate choices because they got the money they've got the money, the funds, the resources to do it. And they do it. And so unfortunately that's how that and I think that that's why it's important to know, the statistics show if you look at the numbers, the usage among people of color, of assisted suicide is very, very low. But what I have been saying is that as we normalize this, as this spreads across the country and it spreads to states with really diverse populations, that's where you are going to see the disability discrimination in healthcare rear its ugly head. That's where the racial disparities in healthcare are going to rear their ugly heads. It's going to, because you're going to see more of a corrosion you'll see more of that. The doctors are determining that I'm terminal, and, oh, well what can I do? And I think that as long as we continue to have a not good access to home and community based services, to healthcare in general we're going to have that situation happen to where and I see it's going to largely be people in the professional class that feel like they have some control over things and they're going to want it. And some of those are going to be folks of color. But I do think that it's very, very important that you see, if you look at the studies and statistics right now, you're going to see who uses assisted suicide. But I think if you look at those statistics down the road, you're going to see who's being more affected by assisted suicide. So I'll leave it at that. Yeah. - Okay. Thank you so much. Does anybody else want to add anything before we're moving on to the next question? Okay, then, so the next question is, Canada is expanding access to assisted suicide. What has that looked like and what could future consequences be? - Thank you for the question. Well, the statutory map in Canada has expanded in at hyper speed, much to the shock I think, of the general Canadian population at first, similar to what CNC activists have noted is, an offering of rights for autonomy, self-determination within healthcare at the end of one's life, and only in instances where it's terminal with a reasonable foreseeable prognostication of death, six months less to live the same plan was offered in Canada. But interestingly though, as one doctor amongst 40 who took umbridge with the process in Canada, sent a scathing letter to the Canadian government on the special joint committee on medical assistance in dying, saying that it misconstrued, misrepresented, minimized, and completely ignored key evidence necessary to protect Canadians. The alarm bells have been going off for seven years now, and really for longer, for those closest to the development. And here I should probably give a shout out to Amy Hasbrook, the Ed not yet dead Canada on who's indispensable information I've certainly come to rely on where the doctor in question noted that there's been an artificial presentation of autonomy and that with respect to death, with dignity as though any death with is ever really dignified and suffering is absent from this life. I mean, my goodness, he's quoted as saying as we're expanding it, assisted suicide euthanasia. And we should probably get into the distinction there, because most of the deaths that are happening in Canada, are rightly defined as euthanasia rather than assisted suicide. And that's important. Pardon mean. - I'm sorry, I didn't mean to interrupt, but what is the difference? Can you elaborate on that a little more. Between. Yeah. Euthanasia and assisted suicide. - Yeah, so suicide, it's the patient that self administers euthanasia, someone else, usually the medical practitioner administers and the stats are bearing out that it's the latter definition. So even for the sake of conversation, which I think any person who wants to be informed about choice wants to have transparent and verifiable information that's consistent with the initial representation. Our proponents maintain one thing, and as we elude to in, the slides, eventually those quote unquote safeguards, or as they were referred to in Canada protections, they go up and smoke. And so to continue the quote, he synthesizes it. Well, as we're expanding it made further it go, it goes way, way beyond that. It actually shifts from people seeking death with dignity to people seeking death to avoid having had a light that society hasn't let them live with dignity. And I think to supplement Anita's good points, it's this idea that, at least in Canada, so having gone from what was initially advertised as something rare for only the terminal, as a matter of autonomy, and again, people who have the ability to make choices within a range of good choices versus people who are compelled to make a choice within a range of bad choices, it's this idea that unmet needs should not be a cause of death, which they are in Canada. And so social, financial, psychological, spiritual suffering is leading patients to choose request physician-assisted death. And I think it's an interesting description of that request is provided by the US National Cancer Institute, which describes such requests as a sign that unmet needs have built to an intolerable level. So when Diane has so eloquently put that what we need, what the disability community needs, and there are studies that show for NAMI conducted one, I think it was in 2022 this past October, that people are more apt to vote for legislators who fight for mental disability issues and more robust health services, in Canada you could call it a systemic collapse or a systemic shift in which the opposite is happening where, and I'm sure that perhaps the audience is under the apprehension, certainly helped by mainstream media, the American media that, and Canadian media for the last seven years that Canada has been this safe haven of a golden perfected universal healthcare. And it's not from A to Z it's not, it's in fact it's the opposite. And again, speaking to the patient physician relationship, were 14% of physicians knew their made requesting patients. And obviously, the math is that 86%. And so the statutory map is heading in that way with bill expansion, at least the effort to do so. And I think there's good evidence to be, again, supplementing Anita's good points. There's good reason to be cautious and to be confident in the idea that you can have this informed opinion that pushes back with evidence that says the options that are being offered by our proponents are empty. They are diametrically opposed to disability rights, and they don't serve the long range needs for any person's end of life healthcare when the solutions are already available. And that's kind of what assisted suicide euthanasia provides. It's this idea that there's a problem that needs to be solved that can only be solved with death as though it's an equivocal curative option. And if I can continue, it's, go ahead. Go ahead, Neelam. - No, I'm sorry. Please continue. - I wanted to add that and it might be good at some point here to play our John Kelly Thaddeus Pope clip, in which John Kelly in conversation with Thaddeus Pope, who works for CNC in some certain capacities, one of which is on as an advisor on the dementia advisory board. I think that's important as we're about to watch this clip, to note that as Diane mentioned, anyone who dies from or is killed in through assisted suicide, has a disability, all suicide assisted suicide deaths are with, on people with disabilities. Now, here's an interesting connection that I'll make before we watch this video. Again, it's this idea that assist suicide laws are only for rare terminal cases never to be expanded. That's the assurance, that's the promise. That's the campaign constantly toted it out. Well, it's interesting that concurrently, just as a report came out of Canada, in which mature minors and advanced directives are on the table in the coming legislative years, I believe it's 2024, the compassion and choice is campaigned the American Alzheimer's Association. So the contradiction as a parent, why would you campaign the American Alzheimer's Association and have a dementia advisory board if your tent isn't to explicitly expand what you say, you're not going to expand and with that. And so I think that type of informed apprehension will serve all the populations being targeted by compassion and choices under this false definition of autonomy. So if we could, perhaps we should play that. I think very interesting clip. - Yes. Yeah, please go ahead. - [Amber] This is Amber Smock. Give me one second. - It depends. It's a framing question, right? It's the state of Massachusetts lording. Is it getting in the way or is it facilitating? All he wants is for the state of Massachusetts to get out of the way, right? He's not asking for affirmative support or anything like that. He just says, just decriminalize it. Because as of now, you, the state government, Massachusetts has inserted itself between him, this questioner and his physician. And all he wants is for the state to get out of the way. - I would say that you've turned that on its head. The state gets involved by approving of the person's reasons for wanting to die and giving the doctor immunity by prescribing this. Now, if someone wanted to die because they felt that extraterrestrial beings who are assaulting them and trying to kill them, well, they probably wouldn't be seen as rational. But as long as the formulation that it's rational for a person to feel lack of dignity over in incontinent, then we are instituting massive prejudice against people who live with those conditions. That seems self-evident to me. And I don't understand how people can say, oh, it has nothing to do with disabled people when it's all about disability. All the reasons are about disability. - Thaddeus. - Well I guess that's, I mean, that's worth conceding. I think they are all, I mean diagram where had the two Venn diagrams, right? Everybody who's terminally ill probably is definitionally disabled, right? So if you have metastatic terminal cancer, you are disabled. So everybody who is using medical aid and dying is disabled. And probably you could go to the next step and say, the reason they want medical aid and dying is because of their disability, it's because of the cancer or the side effects or the conditions from the cancer. So that's a true statement. But I guess the key thing is that's their judgment, right? Some people are, would say, I don't define this condition intolerable, people won't. - And so I think that as we're projecting out to an as needs must opposition to assisted suicide laws and speaking to legislators, sending information, sending emails, conducting webinars like this. We're setting forth this idea that was, has been first instantiated, by Diane Coleman, Marilyn Golden, people like Anita Cameron, where people are vulnerable. And what they might, their motivation for some, as Anita mentioned, that the wealthy, the white, the worried their motivation doesn't come from an as needs must basis. It comes from a peculiar want. And that peculiar want is imposed onto the rest of society. And in Canada at least we know that it, that may didn't come from a legal mandate, it didn't come from public opinion. And it doesn't come from evidence further to that. I think it's interesting that the American Alzheimer's Association terminated their relationship with compassion and choices and cited reasons. For example, that as a patient advocacy group, an evidence-based organization, the Alzheimer's Association stands behind people living with Alzheimer's and notes that research supports a palliative care approach as the highest quality of end of life care for individual with advanced dementia. I mean, we can get into a question of autonomy later, but it's interesting that in Canada where advanced requests are being considered, well, what happens with the person with advanced dementia later down the road? They can't undo that choice. Where's the autonomy? - Exactly. And it's really terrifying to think about how, a doctor can give you morphine to your pa, if you have a disability and the doctor can, give these lethal drugs to whoever it is that's taking care of you. And I think as you mentioned in the PowerPoint, witnesses are not required. There's no way to know that you, okay, this was the choice of the disabled person at home. And yeah. So it's terrifying. And I especially think about people who are nonverbal, who have more severe disabilities, developmental, intellectual disabilities. It's very concerning. - It is. And I think at some point, I mean, certainly I'll, defer to Diane here that there's an elasticity in terminology that's being continuously repeated. And it's interesting whether terminal becomes incurable or obviously term definitions of term limits. And then, on Canada's own website there's a provision for people who don't, there's a provision for application for people who are non terminal. So they're already forecasting it. The same with mature minors, typically in the playbook, there's sort of a slow leak of where the statutory map is heading. But unlike Canada, I think, the American outlook is hopeful in that it's illegal it's not legal in 40 states. So the majority of the country is certainly in the right direction. Doesn't mean that we shouldn't make efforts, obviously we're going to make all the efforts in here to push back, but there's a lot of hope. It was defeated in Virginia in January. So we're definitely in the right direction. I mean the National Council on Disability has been strongly vocal since 1997. So that's a federally appointed, presidential appointed federal organization who advises the President on Disability rights matters. And that's over, was it five administrations, both parties. It's an objective bipartisan organization that has routinely and resoundingly said that assisted suicide laws are absolutely deadly and dangerous to the disability community. - Yeah, they're very dangerous because. Yeah. And I think we need to kind of pay attention to the fact that it could become the norm. It could be normalized, it could become mainstream and I think that is something we really need to focus on. Yeah. Oh, but thank you for that. So my next question is, Illinois policy advocates are dealing with significant under investment in home and community-based services. To what extent does lack of access to HCBS drive demand for assisted suicide options? - I'm going to take that one. - Okay. - So obviously the fight for how would community services as a big fight in the disability rights movement across all types of disability in all age groups? I'm part of the adapt history, and that has focused since 1990 on policies that force people into nursing homes rather than providing in-home supports and urging society to recognize that this is a civil rights violation with the Olmstead US Supreme Court decision validated that. But yet, even though states are basically under some level of orders to move forward and fix the system that got built wrong, the change has been really slow. People are still denied the option to get long-term services and supports at home under federally funded programs. And private insurance is even worse. They do nothing. So basically that's a huge concern. And how does it relate to assisted suicide. It shows, when you look at the three of the reasons that are in the top five reasons that people request assisted suicide, one is that people experience it as a loss of autonomy. They feel like a burden on other people, and they feel a loss of dignity. These things are about the experience of being dependent on other people for personal care, even just driving to doctor appointments, whatever, they're going to depend on other people. And all of that could be addressed by home and community based services that are consumer controlled and really by educating society about how important that is to a person's independence and autonomy. But it's still a long struggle to get that point across and you hear people, you've heard people say over time, some would rather die than go to a nursing facility. I mean, it's not a nursing home, it's not a home, but people don't want to go there. And I as a person who has been involved in both adapt and not dead yet, I'm like, we are we are fighting for that, the right to get in-home services and expand them. And there's been a lot of expansion in these 30 years, but it's a really long slog to get that funding happening as you all are experiencing too, as most, or really all states aren't in on a trajectory in the right direction, but awfully slowly sometimes. But we need to not let them off the hook and die over. We need to keep fighting and including to help each other stay in the community. So that's what we're you all are doing, especially I know that many other, many others. - Yeah. And as we know that so many people with disabilities are vulnerable, they might struggle with depression, anxiety, and they feel like a burden, as you said, they feel guilty. And people like that can be easily manipulated, pressured into choosing assisted suicide too. So again, that's not a choice, a real choice. That's all I wanted to mention. But now moving on to our final question, the opioid crisis is making medical providers more reluctant to provide etiquette, palliative care. Could this make people more inclined to ask for assisted suicide? - This is Anita. I'll take that. In the work, yes. Because people who are in the first place, we already have the pain issue around the studies around in particular blacks, but other folks of color as well, not getting adequate pain treatment. And with this opioid crisis we in a way started to criminalize pain. We treat people who depend on opioids and opioids. We treat them like criminals. I've had people tell me of pill counts being told, being, done right there in the open in front of everyone, people losing their doctors for one incident. And it often falls upon those of us of color and those of us who are poor. And I saw somewhere a study where if people who are dependent on opioids lose access to them, then they tend to get more suicidal. So you're in a state now where assisted suicide is legal pain they say is one of the regions. And if you're in a state that has that and you're terminal you've lost access to your, so you see now where it is, it's just steering you right towards death and it's cheaper to it's cheaper to kill you than, or you look down upon people who are dependent on opioids and opioids? And unfortunately those who have injustices done upon us are those of us with disabilities and those of us of color. And I don't even have to go through the studies again of what they said about black folks. So this is where, as assisted suicide gets normalized, this is where you're going to be seeing blacks and folks of color - Yeah. - Requesting assisted suicide. Because now you've lost you've lost access to the opioids and opioids that are for a lot of people, keeping you alive. I'm one of those people who live with level 10 pain every waking minute of my life. But unfortunately for me, I'm allergic to opioids and opioids, and doctors refuse to think out of the box? And so that's where, with the opioid crisis going on with people losing access to medications and medicines and treatments and whatnot to me, unfortunately, it plays right into assisted suicides, hands jaws, if you will, which is why we need more and better access to palliative care, to and people think palliative care is for dying people. It is not. - Right. - That's just for dying people. And so we need more and better access to that. We need more and better access to home and community-based services and supports. We need real live choice, and not the choice between winding up in a nursing home and choosing the sister suicide. You get told that you're terminal. Okay. My mom was living in Washington state in 2009, got told that she was terminal. I got called up, get to Washington, you want to see your mother live? You better get here in two days. So I got to Tacoma in two days, and they ended up putting my mom in hospice. But she was the first person I've ever met who had survived six months at hospice. Her doctor told her and kept telling her that her body was beginning the process of dying. Her doctor had her so convinced of that. And Washington State had just passed there and enacted their assisted suicide law. And he did everything but outright say it to us. But he made my mom so convinced that she left. hospice and decided to go home to Colorado to die. And so I was here in New York, but we made the arrangements. We got her in an apartment, got her nursing services, attended services, and she kind of waited to die, but six weeks later, she was in Washington DC with me getting arrested with a dad. And so at that point, she figured that, "Hey, I'm not dying." And she lived almost 12 years. She passed away in 2020, 2021, February 1st. But she lived almost 12 years and this doctor had her thinking that well, as this gets normalized that and I think of assisted suicide as violence because it stems from people who are, unfortunately, we are vulnerable to that because of forms of violence done to us. And that's including the lack of access to healthcare housing, brutality, police brutality, racism, all of that systemic stuff. It is. And I'm going to stop, because to me it's a white supremacy and action kind of thing. But I'm going to stop right there. - Thank you so much for that. Now we have some questions by our audience members that were submitted in advance for our panelists. We had the following questions submitted from the public in the contact from the public, excuse me. So here's one of the questions. In the context of assisted suicide, why are physical and mental health regarded so differently in US and Canadian society? - I think in terms of the consideration we would have to delve in probably with another whole webinar. I'm not so certain that the medical establishment has a different diagnostic apprehension. I think I had mentioned the physician who headman the letter of protests to the Canadian Maid Association there, that there's the attitude has been one, it seems imposed ideology. - [Neelam] Sure. - Coming from a source that's not evidence based, that's not a public opinion and not from a legal mandate. So it's critical as to where that apprehension is actually coming from. And then I think you see that same apprehension coming from in the states, the National Council on Disability, who's disavowed assisted suicide from the beginning. The Alzheimer's Association recently in 2000 just this year, terminated their relationship and stated plainly that they defer to a research evidence supporting Palliative care. So, I don't know if the question addresses sort of the ideological concerns behind the mechanism of ramming the legislation through, which I think is the common denominator in Canada, it's taken six years to effectively get to a point where advanced directives and mature minors are up for recommendation. And in the states it's a slower creep. - Right. I'm so sorry. In the interest of time, I would like to get to a second question, which is very important. What would you say to a terminal cancer patient in terrible pain who desperately wants access to medical assistance in dying? - I could take that. Anita spoke about the opioid crisis. So there is an issue that people are not always having doctors who are more interested in taking care of their patient than being sure they're not going to have any authorities looking over their shoulder about their prescribing. But you all did an excellent webinar on palliative care. I attended that and it was great. And I think that's really the most essential issue. There's really, for someone who's within six months of dying, in terms of their prognosis, there's no excuse for them being in terrible pain. There's no reason to be concerned about drug addiction for that person, which is sometimes the reason given, and the person in that situation really should consider changing doctors if possible. - Okay. - But also with a six month prognosis, hospice can really help their experienced in guiding people through the options that are available through palliative care. They're complex. They're not all of them were discussed in the webinar based on my experience with that. So I would just encourage people to explore that further. - Thank you so much. So yes, I thank you so much for answering all the questions. I cannot stress enough how important it is to have an evidence-based discussion on this issue and educate the public about this topic. People may not think about it, people may not think about hospice care when assisted suicide is being discussed. That's what I was trying to say. So that is very important. What bothers me is assisted suicide is marketed as a choice for people with disabilities if they want death with dignity. However, it is not that simple. There are so many nuances, such as the fact that people with disabilities may be manipulated or pressured into choosing a path of assisted suicide, as I had mentioned previously. And that is not a choice at all. The public needs to know there are other alternatives such as hospice and palliative care. Our last webinar was about this topic, and I hope that it was helpful and informative for those who attended the webinar. And I hope this webinar was also helpful to our audience members. So again, thank you so much. Thanks to all of you for being here.