// This is a machine generated transcript. Please report any transcription errors to will-help@illinois.edu.

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Brian Mackey: From Illinois Public Media, this is The 21st Show. I'm Brian Mackey. A new Illinois law would let doctors prescribe life-ending medication to some terminally ill patients. It's set to take effect in September, and it's the first such law in the Midwest. But now disability advocates, an Illinois physician, and two disabled Illinoisans are suing in federal court to stop it, saying it discriminates against people with disabilities. This hour we'll hear from people with different perspectives on this law and this lawsuit.

First up, Ebony Payne. She's a disability advocate with ADAPT Chicago and one of the plaintiffs in the case. Ebony, welcome to The 21st Show. Thank you for taking the time.

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Ebony Payne: Thank you. Great to be here.

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Brian Mackey: And with us also is Matt Vallière, executive director of the Institute for Patients' Rights. Matt, thank you for being here as well.

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Matt Valier: [Brian], thanks so much for having us on.

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Brian Mackey: And I should say, in order to make schedules meet, we tape this conversation ahead of time, so we're not taking live calls today. But you can always let us know what you thought after the fact. Our email address is talk@[21stshow.org]. All right, Ebony Payne, I want to start with you. You fought this bill before it passed. Now you're a plaintiff suing to stop it. What made you take that step?

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Ebony Payne: This bill puts more and more people with disabilities at a disadvantage and in danger. And it seems like lawmakers didn't take that into mind when they started with this law.

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Brian Mackey: What worries you about how this would work for people with disabilities?

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Ebony Payne: It will put more people with disabilities at a disadvantage. As I said, and put them in danger. There's always a workaround, a way to get around certain laws or things of that sort. And I would worry that people who don't think things through completely will be put in danger. That's one of the biggest things.

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Brian Mackey: Yeah, Ebony, can I ask how did you become an advocate in this space?

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Ebony Payne: I became an advocate around the time of COVID. When they weren't handing out PPE — that's when it all started for me.

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Brian Mackey: And can you maybe talk about — I mean, I've seen you share a story, if you're comfortable speaking about it, about your own sort of medical journey with regard to this and an experience you had during your own illness.

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Ebony Payne: I was injured — a victim of violent crimes — many, many years ago. And that is what led me to living in nursing facilities and thus becoming an advocate myself. I've been working with the ombudsman. I had to learn how to advocate for myself first — working with the ombudsman, things of that sort — in order to get basic treatment for myself to live comfortably in nursing facilities.

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Brian Mackey: Well, thank you for sharing that with us. I appreciate it. Matt Vallière, let me come to you. From a legal standpoint, what is at the heart of your case?

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Matt Vallière: So look, Brian, these laws are inherently discriminatory. When you have a system that's broken, where inequities in healthcare abound, insurers care more about their bottom line than they do about people — now you thrust on that whole broken system assisted suicide laws, which create a two-tiered system of medicine where some people get suicide prevention when they express a desire to kill themselves in a medical setting, and then other people get suicide help. And who are those people? They're all people with life-threatening disabilities.

So if you take a look at the qualifier for lethal drugs under the Illinois assisted suicide law, it's a 6-month-or-less prognosis. All of those prognoses have an underlying condition, all of which are disabilities. So under the ADA, cancer itself is a disability. Heart disease itself is a disability. But there are also other disabilities that many people would not even imagine could be considered terminal. But the definition of terminal under the assisted suicide law in Illinois is so fast and loose that in other states that have legalized with similar definitions, there are people with diabetes who apply for and get assisted suicide under similar statutes. There are people with anorexia who get assisted suicide under a similar statute. These are not life-threatening disabilities with the proper care, treatment and support, but yet people are receiving lethal drugs under the law.

Because with the assisted suicide law, you have a system where it doesn't matter whether the person has access to the appropriate care, long-term services and supports, home- and community-based care that they need and deserve — or that they might, in a dark moment or in desperation of a system stacked against them, opt for assisted suicide because they don't have access to care, or they choose to exercise their right as a patient to forego care in order to qualify for lethal drugs because they're so demoralized by that system.

When you talk about autonomy, which the other side likes to promote a lot, you have to have a range of options and be empowered to make them. If there's a group of people who neither have the range of options nor are they empowered to make them, this looks a whole lot less like autonomy and a lot more like eugenics when death is the result of the devalued group. We see that as an inherently discriminatory public policy — a violation of the Americans with Disabilities Act, Section 504, and the Constitution.

Even if you could say, "Wow, assisted suicide for all, not just for people with life-threatening disabilities," these laws do not have the appropriate level of scrutiny over the process. Once those drugs leave the pharmacy, there's no oversight, and so there's no third-party witness to make sure that the person has taken the drugs voluntarily. If something goes wrong, a medical professional is not required to be there on scene. We have no idea whether or not the prognosis was accurate, and in fact, most of the time — the majority of the time — doctors are more often wrong than they are right about a 6-month-or-less prognosis, putting into question the whole premise of this litmus test to receive lethal drugs.

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Brian Mackey: Let me interrupt — so I hear you talk about when the prescription leaves the pharmacy. I think the advocates will say that before that, there are two oral requests, five days apart, the 6-month prognosis as you just mentioned, sound mind, two witnesses there. Talk more about where you see the gaps in that phase of this law, if you see them.

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Matt Vallière: So if the patient, in the doctor's estimation, has less than the required waiting period, it's just one doctor, one day — you get the drugs, firstly. Secondly, when you have these two witnesses, it's not to say that at that moment that person may be requesting the lethal drugs, but later on — you know, people go through periods of darkness, depression when they face their mortality — when they're in a situation where there's a life-threatening disability that may or may not, with appropriate cares and supports, be, quote unquote, terminal.

For example, there are people who have needs like Ebony's needs, where she needs home care, she needs various supports — some people with spinal cord injury. I don't actually know the ins and outs of her particular situation with regard to these specifics, but some people need breathing support, nutritional support, urinary tract support. If for whatever reason that person no longer has access to those cares and supports, they qualify for lethal drugs under this law. And so what it is is that they are terminal under the law. They're pre-qualified to no longer have the same suicide prevention care and services as everyone else.

When you treat a protected class in a different and lesser way than you treat everybody else with regard to a government program like suicide prevention care, you're discriminating. There's disparate impact here. People with disabilities will see a difference in how the law impacts them. If a medical professional were to prescribe a well and able person lethal drugs, they lose their license, they go to jail, your family's gonna sue them. But if that person happens to have a life-threatening disability — with regard to the medical professional's best-guess scenario — all those usual protections go out the window.

Once the drugs leave the pharmacy, you also have a scenario where there is no oversight, there's nothing. So the person walks out of CVS or rolls out of CVS, and then all of a sudden they could live for decades afterwards and still have lethal drugs. They might end up taking the lethal drugs at a time when they no longer have the full capacity of their decision-making. These are real question marks when there are tired caregivers, greedy heirs, financially motivated players. When the system is always looking for ways to save money and to save scarce medical resources, people have and will continue to be pressured to opt out and to end their lives prematurely under these assisted suicide laws.

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Brian Mackey: Ebony Payne, I'd like to come back to you. You've heard Matt talking about this idea of pressure. And again, to the extent you're comfortable talking about it, have you felt those pressures of, you know, the cost of healthcare, the work that goes into it, that sort of thing?

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Ebony Payne: No. Well, I'm aware of the extreme cost of healthcare. But the influence of doctors who are just so lackadaisical about life, period — for instance, in my personal happenings, I had an experience at a hospital where I did have to get intubated more than one time. And the doctor told my family, "Well, we can give her something to help her relax, and you can just let her go." And that was before — years before — this assisted suicide law ever came down the pipeline. So if this happened years before this assisted suicide bill, just imagine how many people were just OK with that happening. How many other people fell suspect to this? And now that this bill comes into play and it's legal — now what?

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Matt Vallière: Yes, you end up with subjective value judgments on the lives of people with disabilities — medical professionals in the state saying some people's lives are worth saving and others aren't, that suicide prevention should be meted out to some people and not to others. That's discrimination.

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Brian Mackey: Ebony, I wonder if you ever have the chance to talk with people who are newer to the sort of diagnosis and medical situation you've been living with for years now. And they say, "I don't know if I have the strength to carry on." I wonder what you would tell someone in that situation.

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Ebony Payne: I've come across people who have questioned whether or not I should be fighting against the suicide bill, and they ask, "Well, what if this is what they want to do?" And my question to them is, "So you have the right to decide whether or not I have the right to live?" Because it's — it's what it is. And I'm more susceptible to that than anyone. I'm a quadriplegic. All I have is my mouth. That's it. So I'm definitely the more susceptible to that.

Even when I was more recently in the hospital, I asked for them to help me die because my mind was not in the correct place. And it happened twice. Lucky for me, I had a medical power of attorney. But they were all for it — I believe that's my personal opinion — I believe they were all for it. Had my family member not been in the room, we would be — well, we wouldn't be having a conversation.

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Brian Mackey: Ebony Payne, you said you have your mouth — you also have your voice, and I want to thank you for sharing your voice with us today here on The 21st Show.

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Ebony Payne: Of course.

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Brian Mackey: And we've also been speaking with Matt Vallière, who's executive director of the Institute for Patients' Rights. Thank you as well for joining us today.

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Matt Vallière: Brian, thanks so much for having us on and highlighting the dangers and the discrimination inherently involved in the assisted suicide law in Illinois. We appreciate you bringing this to the fore.

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Brian Mackey: All right, we are going to take a short break. When we come back, we will continue this conversation with two advocates for this law: state Sen. Linda Holmes, who sponsored it, and Khadine Bennett with the ACLU of Illinois. We tape this conversation ahead of time in order to meet schedules today, so no calls. But again, you can let us know what you thought. Our voicemail line is 217-300-2121. That's 217-300-2121. This is The 21st Show.

It's The 21st Show. I'm Brian Mackey. We've been talking for the first part of our program today about a federal lawsuit that aims to stop an Illinois law that allows what advocates call medical aid in dying for some terminally ill patients. Opponents of it call it assisted suicide. This law is set to take effect Sept. 12. For the next part of the program, two voices in support of this law.

State Sen. Linda Holmes is a Democrat from Oswego who sponsored this law in the Illinois General Assembly. Senator, welcome back to the show.

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Sen. Linda Holmes: Thank you very much for having me back on.

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Brian Mackey: And Khadine Bennett is director of advocacy and intergovernmental affairs at the ACLU of Illinois. Khadine, welcome back to you as well.

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Khadine Bennett: Thank you so much.

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Brian Mackey: Senator Holmes, as I mentioned, you sponsored this law in the General Assembly. Can you remind us what prompted you to do that in the first place?

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Sen. Linda Holmes: I sponsored this because unfortunately, when I was 15 years old, my father died of lung cancer. Of course, my mother saw him go through this. So we were sort of raised at that point that she always said if something ever happened to her, she wouldn't want us to take extraordinary measures and leave her suffering. Obviously, lung cancer is a dreadful way to die.

My mother then in 2016 was diagnosed with pancreatic cancer. At that point, she had made sure I had her medical power of attorney so that I could make sure they took no efforts to prolong her suffering. She was given a diagnosis of 3 to 6 months to live. Obviously, this was not an option at that point, but when she contracted a horrible infection and they came to her four children and asked what we wanted to do, we said just keep her as comfortable as possible. Mom then died less than a week later. So it just showed me that a patient with that quality of life deserves to have this as an option. They certainly do not have to choose it, and Khadine and I will explain to you that obviously no one forces anybody to do this. And in fact, people who fill the prescription — 37% of them don't even take it at the end — but they have that option if their suffering becomes intolerable.

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Brian Mackey: What did you hear from people with disabilities while this was still being debated in the legislature?

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Sen. Linda Holmes: I did hear some of those arguments — that their lives were not valued, that they were not treated by their physicians as though it mattered, that they were considered expendable, that they would be encouraged to die because medical care was so expensive. I will tell you, as somebody who has had MS for 37 years, I have never been treated that way by one of my doctors. I have received marvelous care and marvelous encouragement through the years to do as much as I was capable of doing. And I would please urge anybody that has a doctor that makes you feel that devalued to please change doctors.

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Brian Mackey: And one of the things the lawsuit says is that the safeguards in this law are, quote, toothless. I wonder how you thought about putting in safeguards as this law was being drafted.

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Sen. Linda Holmes: I will not talk about the pending litigation, but what I will tell you is when this was drafted, the safeguards — the guardrails to make sure that nobody could be taken advantage of — was the top priority. We wanted to make sure those safeguards were all in place. We called them guardrails. And certainly you went through some of them, where a person has to verbally request, they have to request in writing, [and] no physician has to examine them. If either physician feels that the person is not mentally capable of making an informed decision, they will not allow them to proceed with this option. So all of those guardrails were put in place, and no doctors are coerced into having to provide this if it goes against their beliefs. There are so many guardrails in place to make sure patients are protected.

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Brian Mackey: Khadine Bennett with the American Civil Liberties Union of Illinois, talk about why you're involved with this. Why is this, in the ACLU's view, a civil liberties issue?

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Khadine Bennett: Yeah, I mean, for the ACLU, the issue of being able to have control over what happens to your body — whether or not you are able to access medical care, whether you're able to refuse medical care — that's a core liberty value. And for medical aid in dying, making sure that this became law was really important because over the course of the years of working on this issue, I've talked to a number of people who are terminal, people living with a disability, [and] the loved ones who've seen their family members pass away in really horrifying ways. And because they lived in Illinois and not a state where medical aid in dying was available, their loved one had to needlessly suffer.

And for many people that we've talked to — like Senator Holmes — the ability to have an option, and the option that they would like, was really important to them. One of the core things of this law is not to highlight one form of care versus the other, but to make sure that people have all of the end-of-life options available to them, including palliative care and hospice care. And we know from what we've seen in other states that many people who use or seek out medical aid in dying are also enrolled in some kind of palliative care and hospice care as well.

So we just really want to make sure that people who are directly impacted by this issue are folks who are able to let us know what it is they need. And also, because we care about the rights of people living with disabilities, listening to the concerns and the pushback was really important for us. We partner with many disability rights organizations in our work. And this was a place where, understanding that there is a fundamental disagreement about this option, we wanted to have as many protections — procedural, regulatory — in place so that folks are able to truly have control. They're the ones making the decision. They can decide when or if they want to use this. At any time they could say that they don't want to use medical aid in dying. It's not a requirement that once you start the process, you have to continue it.

And I would want to say — you asked earlier about the voices of what we heard from people living with disabilities — I'd want to highlight one of the people who testified in committee, Beth, who became disabled due to a traumatic injury at 17. She talked about supporting medical aid in dying in this law because she wants to have the right to have some level of control, not just in how she chooses to live, but in how she approaches her death if it's from a terminal illness.

And what's very clear is that there are lots of, quote, guardrails in place. It's a really important issue when it comes to self-determination — determining for herself, as a person living with a disability, if she were to ever be terminal, that she has all of the tools available.

And I'll just say one more thing — the idea of calling it assisted suicide. When I was reading the complaint, one, I didn't know what law they were talking about, because to say there are no guardrails is very curious to me, that it was framed that way. But constantly talking about suicide — and I think about Deb, who this bill is named after, who has said over and over again that she wants to live. She's tried every single clinical trial possible. She is not somebody who is contemplating suicide. She knows she's going to die. And her form of cancer is a pretty aggressive form of cancer. I would just say the use of the word suicide and comparing it to suicide just really devalues the experience of people who are terminal, dealing with and supportive of this law.

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Brian Mackey: Senator Holmes, I remember the physician Quentin Young in Chicago — he was an advocate for a long time. I once heard him say that any system of healthcare that's motivated by profit is fundamentally immoral. And if you have that perspective, and you know how difficult and challenging healthcare can be for so many people in America — even with the Affordable Care Act, even with programs like Medicaid and Medicare — the costs can be really burdensome. And the experience can be terrible, even for people with insurance. If you have a healthcare system that people see as fundamentally immoral in some ways because of the profit motive, how do you square that with this idea that maybe people will feel pressure — not that a physician is saying, "Well, why don't you just take the easy way out," but they just know what a burden financially this could be for them to seek some sort of treatment for their illness or disability. How do you respond to that?

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Sen. Linda Holmes: I respond by saying I think people — and we've even found out people who are terminal — for the most part, want to live. So regardless of the flaws of our medical care, and it is flawed and it is ridiculously expensive, and drugs are out of reach for so many people — and insurance is something that, if we think it's bad now, I think once things that have happened on the federal level happen, it's going to be even more out of reach for a lot of people. And that is a crisis that we need to address.

I don't know that it's that relevant, though, when it comes to medical aid in dying. And I guess the fact that somebody has a disability has nothing to do with medical aid in dying, because medical aid in dying is only if you have a terminal illness with a prognosis of 6 months or less to live. So the fact that you have MS or some other disability is really totally irrelevant.

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Khadine Bennett: If I could jump in — I would say, you know, I agree that the healthcare system is broken. We see that all the time. As a Black woman who navigates the healthcare system with great insurance, it can be overwhelming. And there are many times where there is not that long-term interaction with a medical provider. There are lots of things that are wrong with it.

That said, I think it's possible to work on the broken healthcare system and offer people medical aid in dying — something that is available in other states. It's been around for quite a long time. I think over 28 years at this point in the first state where it was passed into law. And none of the concerns that I read in the complaint have really been — I've seen any of those concrete examples. So the concern — I get why people have this fear. But the language is crafted intentionally to be very restrictive in terms of who's able to have access to it and the process that you have to go through, and to limit coercion.

Right now, even without medical aid in dying, people are making decisions about healthcare, whether or not they continue with treatment or not. And those things will happen, have happened before medical aid in dying. It may happen after medical aid in dying. But those questions are not new questions that come up because of this law possibly going into effect in September.

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Brian Mackey: Well, what would you say then — and Khadine, I'll stay with you — to someone who has a disability who fears this law could be turned against them?

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Khadine Bennett: Yeah, there is specific language that talks about if you're coercing somebody to have access to or to force them into medical aid in dying, you can face civil and criminal penalties. Those things are real. We've limited the language so that, for example, if I needed to have a guardian or somebody consent to my care, that person isn't able to make me get medical aid in dying. I — the person who's terminal — I have the control to make the decision, have the conversations with the doctor. It's ongoing conversations. It's not a one-and-done. And so we've crafted language which would allow for the person to be in charge of their decision-making and limit the coercion — the coercion that could come into play by, as I think the previous guest talked about, family members or somebody who's looking for an insurance payout. I think we've struck the right balance.

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Brian Mackey: Senator Holmes, for someone who's listening to this and maybe they're facing a terminal illness or caring for someone who is, what do you want them to understand about this law?

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Sen. Linda Holmes: I want them to understand that it is simply another option. There are all forms of care. Ninety-five percent of the people who choose this option are already in hospice, so most people are already receiving palliative care.

I think where the difference comes in when people talk about this — if I am diagnosed with terminal cancer and I opt to not have treatment, am I also going to be accused of, quote, committing suicide because I'm not choosing to have a treatment that could alter the course of the disease? Whether it would — it's unlikely it wouldn't cure it, but would it change it? Would it prolong my life? Possibly it would. So this is just another choice.

When you have a terminal illness, the doctor's going to tell you you can have comfort care, palliative care, hospice care, pain-control medications — all of these things. Why can you not also have an option to end your life without that suffering? And by the way, most people who opt to do this — let's talk about Deb, who Deb's Law, which this is named after — she could have chosen, say this was in place, and she chose this option. Would she have taken the medication? Not yet, because she's still fighting, because she's going to do everything she can to prolong her life as long as possible. Most people do not do this till they are at the very, very end of their lives, because these are not people who want to die. These are people that are going to die.

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Brian Mackey: Senator Holmes, we're coming to the end of our time together. I do want to acknowledge — as we're taping this on Monday afternoon — there was a news story today that you have decided you are not going to run for re-election, you're going to take your name off the ballot. Can you talk about, just briefly, what went into that decision?

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Sen. Linda Holmes: The only thing that went into that decision, quite frankly, was I have had MS for 37 years. I have been one of the very, very fortunate people to have been able to do this kind of a job. I mean, I was still up running and walking and doing everything I could do and exercising. Unfortunately, the last week before session ended, I ended up in the emergency room with severe numbness in my legs, and literally the doctor at that point said I have to quit thinking I can push through everything, that it's time for me to really take a little more care of myself — eat right, sleep right, and not push myself to the nth degree. And I just thought about it, and I thought, well, if I'm running for election again, I know I can't do it in a half measure and take care of myself, and I know I'll keep pushing. So now may be the time, while there's still time to withdraw from the ballot — to put another name on the ballot instead of just appointing somebody to the position — that I step back.

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Brian Mackey: Well, I'm not sure if congratulations is quite the right term for this particular retirement announcement, but I wish you the best of luck, and thank you for being with us today here on The 21st Show. State Sen. Linda Holmes is a Democrat from Oswego. We've also been speaking with Khadine Bennett from the ACLU of Illinois. Thank you both again.

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Sen. Linda Holmes: Thank you very much. Thank you, Brian.

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Brian Mackey: All right, that is it for that topic — medical aid in dying. Again, to meet schedules, we tape this conversation ahead of time, so we could not take your calls today. But you can always let us know what you thought. Our voicemail line is 217-300-2121. That's 217-300-2121.

Coming up after the break, we're going to be talking about fluoride in our drinking water — not the debate over whether it's a good idea, but the idea of if we do remove it, as some states have done and others are being encouraged to do, what does that mean for our dental health? That's coming up after a break. This is The 21st Show. Please stay with us.