This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
MICHAEL BIEN: Good afternoon, everybody. My name is Michael Bien. I'm a partner at the law firm Rosen, Bien, Galvan & Grunfeld. I'm a white very elderly man with white hair and white beard and a red tie. Let me just give you an overview of what we're going to try to cover in this short period of time today. First, Michelle Uzeta, from DREDF is going talk about DREDF's work about physician assisted suicide over the years and taking policy positions on physician assisted suicide. This has been a longstanding effort led by Marilyn golden who we lost a few years ago. So we're going to begin with Michelle's talk about several cases that DREDF has been involved in in the last few years, and then we're going to turn to the California litigation, and we'll include a presentation from me and also from several of our clients and my co-counsel.
Most of the other speakers are going to be appear by Zoom. To my right is my client, whose position patients’ rights advocacy foundation and is also a client of ours in the lawsuit who has been a tremendous assistance in putting together this group and keeping this effort going. So we'll begin with Michelle Uzeta who's the deputy legal director of DREDF and she'll be appearing on Zoom and she also has a PowerPoint. Do you need me to share my screen. I can't see what slide you're on. So it might be hard to coordinate. I'll just go ahead.
MICHAEL BIEN: I guess try and share your screen, Michelle.
MICHELLE UZETA: Screen sharing is disabled. Go ahead. If you were on the first slide, I'll control of slides from there.
MICHELLE UZETA: I can see it now. So hi, everyone. Glad to join you today. My name is Michelle Uzeta. I'm the deputy director of disability rights education and defense fund or DREDF. I'm a biracial woman with dark hair pulled back in a ponytail I'm wearing glasses and a green blazer and I use she/her. Next slide.
I was asked to say a few words today about DREDF's opposition to assisted suicide and to highlight two very recent cases in which we served amicus. I wanted to encourage people, because we have a lot of people to get to today, to access the shared material and resources that we provided. The first is DREDF's policy page on assisted suicide, which is on the DREDF website. And then the next are the two amicus briefs and orders in the cases where we appeared as amicus and those are the cases that I will be talking about today. So I just wanted to talk briefly about DREDF's position on assisted suicide. DREDF as an organization has long taken a position against the legalization and expansion of assisted suicide laws. And the following are some of our talking points.
First that supporters often focus solely on issues of individual choice and self determination, but legalization of assisted suicide would operate to actually restrict choice and self determination. And what we mean by that is that the availability of assisted suicide really opens the door to external pressure from medical providers, as well as undue influence or coercion from family members and friends who may have an interest. It's particularly true when oversight is lacking and data is not collected on how these laws are being utilized.
Next, it's important to distinguish having respect for someone's personal wishes from the significant dangerous to society of legalizing assisted suicide as a matter of public policy.
Next. Assisted suicide would be a deadly mix with our broken, profit driven healthcare system. People with disabilities are already subjected to disparate treatment in healthcare, as a result of intentional devaluing and implicit bias. And there are plenty of studies to back that up.
So for those reasons we believe the legalization or expansion of assisted suicide has many harmful consequences, and where states have legalized the practice, nonetheless, strong protections must be adopted and maintained, and there must be robust data collection to deter and identify abuse. Next slide. The first case that I wanted to highlight is called Kligler versus Healy. It was a case before the Supreme judicial court of the commonwealth of Massachusetts. A patient with cancer and his doctor sought a judicial declaration that applying manslaughter laws to assisted suicide interfered with their equal protection and due process rights under the Massachusetts Constitution. The plaintiffs allege that the patient wanted to be assisted in dying, and that their doctor was willing to assist, but that the doctor feared prosecution under manslaughter laws.
And it's worth noting that Massachusetts' constitution, and state laws, did not say anything about assisted suicide at the time. It did not provide an express right to assisted suicide. Next slide, please. So DREDF represented a number of disability rights organizations, both national and in Massachusetts. Providing a brief in this case opposing the effort to find that there's was a constitutional right to assisted suicide in Massachusetts. And here these are some of the points that we've raised.
First is that assisted suicide is part of a long history of discrimination and bias against people with disabilities that includes things like eugenics and forced sterilization and these are happening recently with COVID 19 who decided who should have access to respirator. Next we pointed out that assisted suicide violates the spirit and letter of the Americans with Disabilities Act by treating people with disabilities differently and devaluing disabled lives. And what we meant there, and pointed out was that the state's response to nondisabled people who express suicidal ideation is to intervene with prevention measures and to provide services and support.
While the response to people with disabilities who expressed suicidal ideation is to offer aid in dying, basically agreeing with them that their life is not worth living. Next, we focused on the fact that requests for assisted suicide are intrinsically intertwined with social stigma, isolation, and a lack of services and are best addressed to supportive care and treatment. Here we point to data from the state of Oregon where assisted suicide has been legalized for decades. Oregon does collect a fair amount of data. But what was telling there is that the top five reasons for people choosing to die is not related to pain and suffering, but it's the narrative that you hear especially in the media, that people should have the choice to die because they're in unbearable pain.
So the things that people really talked about as the reasons why they chose medical aid and dying was not wanting to rely on others for assistance. The loss of independence. Not being able to do the things that they used to do. And these are things that could be addressed in most cases by proper supports. Community based services, community based care and treatment. So that's where we would like to see states like Massachusetts put their efforts.
And lastly we highlighted the fact that purported safeguards for assisted suicide are really inadequate and can be rolled back at any time. And here in the brief we use California as an example California passed their end of life options act, a couple of years back and they reduced the mandatory waiting period from 15 days to 48 hours, and they eliminated a requirement that a person make a final attestation or final declaration that this was their choice before lethal drugs were given to them to self administer. And very frightening, currently right now, there's efforts to try to remove the requirements that people have a terminal diagnosis to be able to access aid in dying. So they're really trying to make it easy for people to end their own lives.
So the outcome in Kligler was positive. The court offered that the Massachusetts declaration of rights does not reach so far as to protect physician assisted suicide, and they also found that the law of manslaughter may prohibit physician assisted suicide and does so without offending constitutional protections. Despite that kind of setback, proponents from continued legislative efforts. Last time I checked, around middle of February or so, their end of life options act had been moved favorably out of the joint committee of public health and hearings were going to be scheduled for later this year.
The second case I wanted to highlight was one in California called Shavelson vs California Department of Health Care Services. This was filed in the U.S. district court for the northern district of California. It alleged that The End Of Life Option Act violates Title II of the Americans with Disabilities Act. Under California's act one must both be mentally competent and physically able to self administer aid and dying medication. Does the California act discriminate against people with disabilities who are physically unable to administer, to self administer aid in dying medication. Essentially sought to eliminate the self administration requirement as a reasonable accommodation theory. So in the case the plaintiffs felt strongly that they had a likelihood of success on the merits of their claim, so they filed a motion for preliminary injunction to get preliminary relief.
That was denied by the court. And the court, in its opinion or its order denying that motion, said, and I quote, the plaintiffs are seeking a modification that would compromise the essential nature of California's program. After that, kind of seeing an opportunity, the state then filed a motion to dismiss the case. In response, the plaintiffs abandoned their argument that the self administration requirement violates the ADA period as a whole. It narrowed the modification that they were seeking, instead they were requesting that physicians being able to step in and help if a patient begins ingesting medications on their own but is unable to complete the process. Like they don't have enough strength to complete the process.
So again, DREDF stepped in to write a brief representing a number of disability rights organizations in supporting the motion to dismiss. And some of the things we pointed out in there were the same as in Kligler.
One, that assisted suicide laws are part of United States tragic history of state sanctioned discrimination and bias against people with disabilities and chronic illnesses in healthcare settings. Second, that assisted suicide laws violate antidiscrimination laws by treating disabled people differently and convey the message that disabled lives are less worthy. Third, under assisted suicide laws, the presence or absence of disability alone determines whether an individual is carved out from the protections of late preventative measures or aid in implementing the measures. And finally we said again that where states have authorized the practice, like in California, it's critical that statutory safeguards remain.
This is my last slide.
The outcome in Shavelson again was positive from our perspective. The case was dismissed by the district court. In addition to commenting that it appeared the plaintiffs were proposing a completely new lawsuit by narrowing their modification request, the court determined that the plaintiffs lacked standing. The court held that the assumptions to support standing seemed fanciful, and that was the court's word, in that the plaintiffs would have had to creditably claim or allege that first terminal plaintiffs out there who will start administering the aid in dying medication and then be unable to complete the task. Second, that those patients would have physicians willing to step in and help but for the fear of prosecution. And third, if a doctor did step in and help, that they would likely face criminal liability as a result.
And the court did not feel like the plaintiffs had credibly pled that that was the case. The court also felt that the relief the plaintiffs were seeking would fundamentally alter California's act, stating that it traverses the sharp boundary between allowing an individual to end their own life and euthanasia which is the big concern in the disability rights community. And this would the transform the benefit and compromise its essential nature. The court also thought that the relief sought in the case would open a window during which there would be no way of knowing whether the patient had changed their minds about ending their life, and that would significantly undermine the protections that were purposefully included in the act to prevent abuse and coercion.
The plaintiffs did appeal the dismissal of their case in December of 2022. But then voluntarily dismissed it themselves in May 2023, I believe because the individual plaintiffs at that point had passed away. So with that I will pass it over to our next panelist. Thank you.
MICHAEL BIEN: Thank you, Michelle. We filed the challenge to California's physician-assisted suicide law in Los Angeles federal court in April of 2023. Our plaintiffs are two individuals, and the organization's spinal association, Not Dead Yet, communities living actively independent and free and the institution for the patience rights. The defendants are the state of California and agency responsible for public health, suicide prevention, medical board, and the DA of Los Angeles County responsible for the enforcement of laws protecting people with disabilities.
Our theory is that physician assisted suicide is a form of euthanasia. It is both the revival of eugenic ideologies and a violation of federal disability rights laws and federal constitutional provisions which protect persons with disabilities from discrimination, exclusion, and life threatening governmental laws and policies. Under federal law, a public entity may not withhold services or make services available on unequal terms on the basis of disability. The state and local government defendant agencies and officials named in this lawsuit operate systems of public health, social services, medical profession regulation and law enforcement to provide protective services for people who express suicidality, and to prevent medical professionals, caregivers and family members from taking advantage of or encouraging a person's impulse for self harm or suicide.
Through the state's physician assisted suicide law, however, plaintiffs and their members are denied this entire protective network of laws and services, and are steered to suicide based solely on a doctor's good faith diagnosis of terminal disability. The determine nation of who has a, quote, terminal illness and who has six months or less to live, is a lose, unrelated and unreviewable sign off by a physician, who is not required to have a prior relationship with the patient, be a specialist in treating the issue, or even meet the patient in person. No mental health evaluation is required, and of course no screening for suicidality is undertaken, because by definition, the patient is suicidal. That is, the passion has expressed to the physician that he or she wants to die.
Lonnie Van Hook, a plaintiff in a lawsuit, was hospitalized for suicidality before California's law went into effect. Although he's a C 5 quadriplegic and has been told repeatedly over decades that he is terminal, he has a fierce will to live, and because of the supportive care and services he received, he chose to live. California's law puts people like Lonnie at grave risk because when he is again suicidal and expresses his thoughts to a physician, he is likely to receive a prescription to kill himself, rather than mental healthcare and support to address his depression.
The six months to live determination is based on the patient's decision to treat or not treat the underlying illness. For example, a patient with diabetes who refuses to take insulin can be approved for physician assisted suicide. Lonnie would be approved if he stated his refusal to accept services necessary for eating, drinking and toileting. Physicians having also approved assisted suicide for women with anorexia who have not responded to treatment programs. The decision to grant what the state calls a benefit of a lethal prescription for the purpose of suicide to a small segment of society is informed by underlying bias, prejudice and discrimination against people with disabilities who are understood to be suffering and living a life that the able body perceived to be virtually worthless. The law conveys the message: You are better off dead.
As California's official healthcare policy, the law steers vulnerable people to their deaths instead of providing care and supportive services. Earlier today I was in a session with the DoJ about the application of Olmstead outside of the residential context. Our challenge to a state program of physician assisted suicide, an option provided only to people with disabilities is yet another example, this is the extreme case of institutionalization is death.
Defendant California agencies and officials are generous in providing the freedom to choose death by suicide but restrict the palliative, hospice. The supply of alternatives of physician-assisted suicide is woefully inadequate to meet the demands of California's aging and chronically ill population instead of insuring viable mental health options that pro poet patient well being and true autonomy, law prevents a false choice of living without necessary healthcare or dying by suicide with, quote, help of a physician. California recently amended its physician assisted suicide law to remove important safeguards. Advocates of the original law stated these safe guards were critical and necessary to assure that patients were only prescribed this lethal cocktail with appropriate evidence that they were acting voluntarily or without coercion from family members or healthcare providers and they were making a fully informed choice, including an understanding of other options, such as palliative care and hospice.
The amended California law changed the waiting period from 15 days to 48 hours. And removed the requirement of a written attestation by the patient confirming voluntariness and informed consent. The state recently issued its report concerning 2022 the first year under the amended law. The results are disturbing. And demonstrate the increased danger that we all face.
The number of lethal prescriptions by California doctors increased by almost 50% in one year. The number of suicides by patients ingesting these lethal prescriptions increased by 63% in one year. 79% of the California patients who received prescriptions to commit suicide in 2022 took advantage of the new amendment and waited less than 15 days to make the second request to a doctor. It takes 10 days to buy a gun in California. That's the waiting period, and 48 hours to obtain a prescription to commit suicide.
Most doctors in California are opposed to physician assisted suicide and refuse to participate. Less than one half of 1% of California's physicians prescribed the lethal medications to patient in 2022. California steers vulnerable patients to physician assisted suicide by making it the quick, easy, and cheap alternative. MediCal covers assisted suicide and Kaiser makes it easily available. On the other hand, waits and multiple barriers face patients in need of mental health services, home health care aides or durable equipment and modifications to allow them to live with dignity and independence. We are proud along with our co counsel Haben Girma to represent these groups. Next up, is Jim Weisman, general counsel and former president of United Spinal. Jim?
JAMES WEISMAN: I'm James Weisman. I'm a white 73 year old male with a little white goatee. I wanted to just start by telling you who we are and why we're involved. We are 61,000 people all over the United States with spinal cord injuries and most of whom use wheelchairs. Many of whom are quadriplegic. Most of the quadriplegics are trauma related. Since I've been doing this work, which is 47 years as a lawyer, I have been aware of suicides related to disability, and I have been personally involved in preventing suicides related to disability. And just a few months ago, our resource center stopped a woman from moving to Vermont because she couldn't get home care and in Vermont she could get physician assisted suicide help, unquote, help.
This is a plague for our population. I want to tell you about a couple of cases, actually just one, and if we have time, more. There's a guy named Tim Bauer, low 30s, hunting from a tree stand in Indiana in 2013.
He fell out and broke his neck. He was married in August, this happened in November. His wife was pregnant. He was in a medically induced coma, and his wife was told he would be a quadriplegic. Does he want to live. And she said I don't know, can we ask him. And they woke him up and asked him. And he was had a tracheotomy, couldn't speak, he was on a breathing machine and he was told he may always remain on a breathing machine, which is a very small percentage of quadriplegics. You'll never hold your daughter, you'll never walk her down the aisle, those kinds of things. Do you want to live. And he chose suicide. And dozens of relatives gathered in the waiting room and sang hymns and prayed and he died five hours later.
If you would have waited six weeks or six months and asked that guy, you would have definitely gotten a different answer. Certainly a considered answer. Not one made in a panic. No doctors were ever charged and of course the family thought they had given their husband and sibling a choice. That was a meaningful choice. We find that there are with our population, which is spinal cord injury and disease, we find there's really about three reasons that people consider suicide. One is despair over new injury. It's a complete change of life.
Your picture of the future is different, and bleak. It usually happens to younger people who are active, spinal cord injury, on married, and the future they envision for themselves and their family is not one using a wheelchair. And they despair. All they have to do is refuse treatment and they're terminal. Life expectancy of a quadriplegic is similar to that of others if they don't refuse treatment. Sorry about that.
Number 2 is the struggle to live in the community. Like the woman from Vermont. It's easy to despair when you have to call a fire department, like a lady I know in Manhattan when her home care worker doesn't show up, so that she can go to the bathroom. She dialed 911. It cost New York City a fortune to do that, to provide that service and the EMTs don't like doing it. But the lady had no choice. Multiply her by thousands of people who are having this problem. Many despair.
And then even worse, even worse, is normal I don't want to call it normal, but normal desperation because of life circumstances coupled with quadriplegic. Like your wife leaves you, and you present to a physician as a quadriplegic, he's not he knows you're terminal because you're refusing treatment. The reason you're killing yourself is your wife left you. So these things are scary for our population.
However, I will tell you that when we discussed joining this lawsuit with our board of directors, we had a couple of dissenters. And it's interesting why they dissented. They said you're just taking away another right of ours. Even in all the context I just gave you, even after all the discussions like that. You're just taking a right from us. So obviously some people feel differently about this, but the overwhelming majority of our board members and membership have always opposed physician assisted suicide, because living in the community is so difficult, that they don't want to present it as an option. Think of how it would change the relationship between doctors and people with spinal cord injuries if physician assisted suicide was a treatment option. It's absolutely scary.
The last point I want to make with you is that we all know about people who suffer, my own parents suffered terribly before they died. The way you know that physician assisted suicide makes people more comfortable killing themselves is that people don't kill people who wouldn't kill themselves without a physician's approval would do it with physician approval. And family members who would never, ever assist, who would never pull the breathing tube, even though that's what the person desired, would let a doctor do it. The result is exactly the same. By the way, one is murder, and one is, at least in some jurisdictions okay under the law. But the result is exactly the same, the death is exactly the same, removing the breathing tube is exactly the same. But people are comfortable with a doctor involved.
I think that in and of itself changes the nature of a doctor patient relationship. I hope that people in California understand what we're doing. I hope that people with disabilities understand what we're doing. We're really trying to highlight the difficulty of living in the community with disabilities. We're not trying to take away the rights of people in death row in agony, which is as you heard a tiny percentage of who we're talking about when it comes to using the statute. So thank you very much, and go ahead, Mike.
MICHAEL BIEN: Thank you, Jim. Next up is Anita Cameron from Not Dead Yet. Anita?
ANITA CAMERON: Thank you. I am a Black woman with long locks wearing black headphones. I have caramel colored skin, pronouns are she/they, have on a multi colored tan based sweater. And for some time. Again I'm Anita Cameron and I'm the director of minority outreach and we are an organizational plaintiff in a lawsuit against California. Not Dead Yet, we are a national organization opposed to medical discrimination healthcare rationing and assisted suicide. It was founded in 1996 by a disabled activist and attorney to give voice to that opposition.
Not Dead Yet always asserted the assisted suicide laws with the ADA. Assisted suicide laws are supposedly were those considered terminally ill, with six months or less to live. And by definition, these folks are disabled and are protected under the Americans with Disabilities Act. So in 2012, Diane, she wrote a blog post where she pointed out that assisted suicide laws violate the ADA. And she said assisted suicide laws violate an act but not in a way that proponents probably think. Some have argued that the ADA requires active euthanasia for qualified people to make it difficult for lethal drugs a sort of reasonable accommodation theory in contrast from our beginning in 1996, we see a more fundamental form of disability discrimination in suicide laws. They set up a 2 tiered system where people express feelings and the difference is disability.
Writing the blog Diane consulted ADA attorney Steven Gold who explained how assisted suicide laws violate Title II of the Americans with Disabilities Act, and Diane had wrote that he said providing assisted suicide for people with disabilities and suicide preventive services based on a doctor's prediction of terminal status or other justification violates the ADA because of presence of disability determines whether state or local governments enforce laws requiring health professionals who pose a danger to themselves. Whether state and local governments respond with suicidal intent and people with the application of lethal measures and whether through investigate forced abuse and homicide statutes the cases reported as assisted suicides.
So the California and black act violates the ADA also violates the Rehabilitation Act and equal protection of the 14th amendment of the U.S. constitution. I believe that as assisted suicide becomes normalized, racial disparities in healthcare will mean that Black patients in particular will be more likely to be written off as terminal. And steered towards ending our lives. There's already been an uptick of people utilizing assisted suicides. Disabled people are experience health disparity because doctors devalue our lives. In the risk of being written off as terminal in a state where assisted suicide is legal rises exponentially. That's why Not Dead Yet discriminatory and dangerous and must be shut down. Thank you.
MICHAEL BIEN: Next up. Before Ingrid starts, I would like to say that without these organizations and specifically the individuals Ingrid and Lonery stepping forward and telling their own personal stories and exposing their own medical conditions and even their suicidality to public scrutiny, we couldn't do this work. And they're really the reasons that we're able to move forward with these challenges. So Ingrid, thank you for being here today.
INGRID TISCHER: Thank you for much for hosting this. And I want to thank the entire conference for including this workshop. Because it is a difficult topic. And I appreciate anyone who is making the effort to engage on it. My name is Ingrid, and I am a 57 year old white woman who has gray hair that's pulled back. I'm wearing a bright purple dress and I'm sitting in my home office in Berkeley against a background of a ton of clutter on the walls. What I bring forward today, after all of this very informed policy analysis, is the emotion that I experienced with regard to policy. What happened to me, back in January 2021, when COVID was still very much a fear, I was hospitalized with pneumonia.
And I have muscular dystrophy and it's led to quadriplegia and I use a wheelchair and even more importantly I use a BiPAP machine every night and if I don't have access to the machine, I would quickly be considered terminal. And that's what I sort of brought into the hospital that I knew of. What I didn't know is that I was also experiencing a psychiatric episode that was not diagnosed. And as it turned out, severe depression and anxiety. A lot of it related, frankly, to the pandemic. Because it brought out a very big contrast between me being able to feel like I could navigate the world safely, versus not being able to. And the reality was that if I caught COVID at any point at that time anyway, it would have been fatal to me. So that was always foremost in my mind.
And as an individual plaintiff, I feel like it's my responsibility to talk about the real world context that a policy like assisted suicide plays out in. And for me fear is an issue. The opposition I think likes to paint it as an issue of rational discussion, which it certainly can be, as the attorneys pointed out today. But my belief is that this is almost solely a policy based on intense fear of the healthcare system, which is in many ways very, very justified.
What happened to me was that even though I was anti assisted suicide activist, I was working at DREDF at the time, I have a ton of disability privilege related to my race, and my class and every other thing. And yet when I was in Kaiser for just a few days, my doctor, who I didn't know very well, really challenged my quality of life. And at the time, they were presenting me with a terrifying choice. And it was potentially go to a skilled nursing facility called sniff or go home and not be able to use any of the normal things like a toilet or possibly not be able to breathe.
The reason I was so scared of going to SNIF is that was the place at the time where people like me with respiratory conditions, those were my options. And that's why in a panic attack, I began to plan how to access assisted suicide. I didn't really think it was going to be that scary or that bad, because at least I would have my husband with me, and I could control it. And that's the essence of what it is. A person who feels like they're in a situation of risk a lack of choice, will easily seize on the one thing that they feel they can control.
Now, that for me makes sense, but it doesn't make sense that those are the only options that I have in our healthcare system. The reality is I'm just terrified of being sent into a terrifying place. And none of this is really based on the fact that no physician had offered me assisted suicide. The fact that it was simply out there as an option and as a legitimized healthcare solution, that in itself isn't a very strong influence. All of us in the community, and what it does is it takes all of the burden off the healthcare system to provide adequate housing and definitely in home supports and all the other things that was detailed in such wonderful language.
When I talked about this with a neurologist, he just brushed it off. And he said you know, look, there's really nothing we can do for you. And I was terrified because no doctor had ever been quite so brutal with me. So the bottom line to anybody who is listening, I'm not here to take away one of your civil rights. What I'm here to do is improve patient care so that you have real choices, should you get to the part of your life when you are considering whether you want to continue or not.
For me this is very much a public health issue. It involves you being aware of what you already have, and I think makes the choice of assisted suicide irrelevant. You should have an advanced directive, you should know that you can refuse medical care, and most importantly, you should know that you have the option [ indiscernible ] none of that was mentioned to me in the hospital and I'm not even sure every doctor knows this. So I want you to be aware of it. Basically we all deserve better healthcare than we're getting. It's natural to feel afraid, but it's not natural to choose to take your own life because the options that you do have are simply substandard. And that's why I'm a plaintiff in the case. Thanks for listening.
MICHAEL BIEN: Thanks, Ingrid. And now we would like to turn to Haben Girma, who is co counsel in the case.
HABEN GIRMA: Hello, everyone. I want to start by thanking Ingrid for sharing that and for being a patient, sorry. For being a plaintiff in this really important case. I will start with a visual description. I am Zooming in from California. My dog is a German shepherd behind me. The World Health Organization has said that the level of isolation and loneliness around the world has risen to the level that it's now a global health crisis. So many people are struggling. And when you are disabled, and coming in for healthcare and saying you feel suicidal, there is significant risk that you're not going to get mental health treatment. About 80% of people in the medical field suffer from ableism. There have been studies that show this. A lot of doctors have biases around disability and quality of life.
I want to share a story from 2013 in the Netherlands. There were twins Mark and Eddie who grew up Deaf and started losing their vision. They had additional health issues too. But the story around them focused on their becoming Deafblind. They thought euthanasia, their doctor said no. They sought another doctor, and this one said yes. And they passed away.
After that, after their brother shared what happened, so many media stories around the world empathized and said yeah, it would be really sad to be DeafBlind. I can't imagine living like that. Many of you have, I'm sure, heard lots of people, lots of nondisabled people, and sometimes disabled people too, saying it would be better to be dead than disabled. That is part of the ableism that the medical field is suffering from.
And the story of Eddie and Mark is from 2013. And it's from the Netherlands. In 2024, if a DeafBlind person came to a doctor in California and expressed suicidality, I am deeply, deeply concerned, that they would not be directed to therapy or even if they would have ASL interpretation or any kind of communication access for their meetings. There are so many stories of DeafBlind people, Deaf people and other disabled people struggling to get access to healthcare, getting a mental healthcare provider who knows ASL is really hard. We don't have enough of them. And those who are there have long waiting lists. So it's layers and layers of issues that lead people to feel isolated and trapped. And as Ingrid has shared, there are already people in the medical field have told our lives don't matter and we're not getting the healthcare we deserve. So this is a global human rights issue, and it's really important that more disability rights attorneys help to advocate.
Back to you, Mike.
MICHAEL BIEN: Thank you very much, Haben. I also wanted to point out that in the materials that was provided if you look at the online agenda there's a copy of the complaint. And I would like to open up for questions and comments. We know this is a very difficult topic that people feel a wide range of views about. And you are people that we respect and we would love to hear from you and talk with you about these issues.
So anyone who wants to question or comment? I don't know if we have a microphone? I didn't really spend time on introductions, but in the materials there's a nice description of all the people who spoke.
Attendee: Good afternoon. My name is Tara, I am a shorter than average white woman with long brown hair and I'm wearing a black blouse and black suit. My question for the panel, anyone who is here in person or on Zoom, and I'm a little scared to know the answer, what's the impact of these assisted suicide statutes on people who are living under guardianships or conservatorships
MICHAEL BIEN: This is Michael Bien. The statutes do not permit a guardian or conservator to consent. Although I will tell you that there is absolutely no regulation of this law. There's no agency responsible for enforcing the law. There's no one looking at it. There's no data. The data collection is very, very limited, and we're going to have to test this. But the law includes a statement that no records concerning physician assisted suicide are available in any litigation by anybody. We will test that.
But again, we're not trying to embarrass any family or individual or look at that, but there has to be someone looking at what is actually happening. These laws are an exclusion from liability for doctors. From criminal liability and for civil liability for tort negligence, and from medical board review. So there's no agency that has the power or funding to look at what is actually happening. And so you know, it's really an issue. But by the express terms of the law, and I have no reasons to think it's not being followed, guardians cannot consent.
Attendee: This is Matt. I'm the executive director of the Institute for Patients’ Rights which is one of the organizational plaintiffs in the lawsuit. I'm in my early 40s man of color, black wavy hair, black beard and olive complexion with a blue suit, white shirt and a red and blue tie. Although the law explicitly states that the person themselves must make the request, and that somebody, if the doctor is concerned that the person does not have the capacity to make medical decisions, they can refer them for a mental health evaluation explicitly for and only for consideration of the ability to make those decisions. So capacity.
It has been not yet tested or instances of which it surfaced in many states, including my own in Massachusetts, where people who does not have the capacity have the exact same right to all quote unquote medical care as anyone with capacity. And so if Massachusetts were to ever legalize, it would be pretty clear in the case law that somebody who is your healthcare proxy, or otherwise able to make decisions for you, could make that decision. It would test that part of the assisted suicide law.
Attendee: Hi, my name is Hailey. I'm a short white woman with brown hair. I'm wearing a black blazer and a green shirt. Earlier in the presentation you mentioned that there are efforts to remove the terminal diagnosis requirement. And I was wondering if you could provide just more information and specific examples of where that's happening.
MICHAEL BIEN: Well, just a day or two ago in California, a bill was introduced to eliminate the requirement of the patient being terminal. By the way, Canada has already eliminated that requirement. So the requirement is instead that you have suffering. So you know, I think the standard that's being proposed in California, and again this is just a bill. It hasn't been enacted and I don't know if it has any chance of getting through. But the standard would be the doctor would have to find a grievous and irremediable medical condition that meets any of the following:
Places that individual in a state of irreversible decline and capability, causes the individual to endure physical or psychological suffering, and after taking into account all of the individual's medical circumstances, it's reasonably foreseeable the condition will be become the individual's natural cause of death. And as people in this room now, there are a lot of conditions that meet those standards, but may result in death 20, 30, 40 years down the road. So it's quite a big opening, if that happens. And again, that has not happened yet in an American jurisdiction. But it's possible.
Attendee: I would just add that's the letter of the law. So the actual practice, as it's seen in vignettes that come through the news media, or otherwise surface, you have lots of people with perfectly treatable illnesses and disabilities that access lethal drugs because and this is in great part the impetus of this lawsuit, is that their lives are not seen as worth living, in some way or another. That you're not worth the healthcare dollars, or that person's attention in some way shape, or form.
So there in the data you can look to see in certain states that they collect the underlying conditions. There are things like, you know, somebody with diabetes gets off their insulin. Just a few weeks ago, there was somebody who had dementia indicators. So very early stage. And they decided that they were going to stop eating and drinking and in that state the waiting period was 48 hours. The fast was 48 hours, they get the lethal drugs, they go back to eating because now they can access those drugs in great part, that's all driven by a fear and loathing of the disabilities that they are thinking that they're going to experience.
So this is not about terminal illness. There are lots of ways in which people have used the letter of the law to have a workaround and get access to this. And there are plenty of doctors with no scruples. And there's debates among doctors who participate in assisted suicide, should I go according to the letter of the law, this person fits in the box, or is this quote unquote just suicide. And now it's just about a subjective view of the value of somebody's life by that doctor. And as we heard from some of our presenters, 80% of doctors have, in the studies, are shown to have ableist tendencies.
Attendee: I'm an old white guy wearing a suit and a tie and a white shirt. I'm trying to be put into a box, you know. The people I've discussed suicide with, at least some of them, have expressed the view that if they get any sicker, it will be expensive, and the family will be destitute. So they contemplate eliminating the expense by eliminating their lives. The suffering that you talk about with these statutes, you could say that the contemplation that I described would be mental suffering. Does it have to be physical or can it be any kind? Is it as subjective as "I don't feel that it's worth it"?
MICHAEL BIEN: Well, first of all, there are current statutes if they're being followed, there still has to be a finding of a terminal illness and less than six months to live.
As we know, that's mushy. That's the hospice standard, for example, which is why a lot of states adopted that standard. It's something doctors do all the time. Of course 20% to 25% people outlive the six months in hospice and get renewed and also people are kicked out of hospice because they're getting better. It's not a standard so it's for very different purpose to actually say I'm going to give you a toxic prescription that would ordinarily be attempted murder or certainly a doctor would get in trouble for providing that big an opioid dose to a patient who is expressing suicidal tendencies.
I do think that in Oregon, where they tracked, they asked for in one of the forms that are collected by doctors, they ask reasons people want to access physician assisted suicide and the reasons you gave are the major reasons people gave. Which is they don't want to be a burden on their families, the financial issues, loss of autonomy and independence. And I think the fifth or sixth reason was fear of pain associated with their terminal illness. So it's kind of mushy.
In Canada, people are accessing physician assisted suicide because their disability benefits are less than what they need to eat, and they've said that publicly, it's been on the media and the doctors say well, I don't have any control over their disability benefits. This is what they're saying they want to do. The person says I want to live if I had enough money to live. And they're accessing this medication. So I think one of the things here is it puts doctors in a position that they're not trained to be in. This is not medical treatment. This is a we want doctors to be providing care for people, and proven medical treatment.
Suicide, unfortunately, is doing great in our society. It's dramatically up, it's dramatically up in people with disabilities, it's dramatically up in the aged. They don't need doctors' help to do it. But when someone actually goes to a doctor and says they're suicidal, that's a chance to help somebody. People who really I do a lot in suicide prevention in my work in prisons and jails. You can't stop all suicides. But when someone mentions that they're suicidal to another person, especially to a healthcare provider, that's the opportunity to do what doctors are trained to do, and to find out why are you in despair. What can I do to help you?
By the way, there's no mental health evaluation required in California, and most states don't require a mental health evaluation. So this is we're taking and this is our ADA theory. We're taking people outside of the normal suicide prevention mechanisms that everyone else has if they express suicidality and we're putting them in a place where they're very likely to access the lethal means of killing themselves which is the first thing you do is when someone is suicidal, you is move lethal means. We just paid in California to put fences up on the Golden Gate Bridge because so many people jump off of it. That was all free will. Why are we putting up a fence? Why are we interfering with the right to jump? We don't believe in free will all the time. And when someone is suicidal, we should talk to them about it.
Anyway, that's our case, and thank you very much. I know we're over time and I appreciate your time. If you have additional questions, our contact information is available. And have a good day. Thank you.