Three days ago, Amber Smock, Vice President of Advocacy at Access Living, was quoted extensively in a Chicago Tribune article about Illinois’ assisted suicide bill. Today, the editorial board of the Tribune took a position opposed to the bill.
Yet some disability rights advocates warn that the measure could put vulnerable populations at risk, including seniors, disabled folks and people with mental health issues.
“An option that’s meaningful for a few will create a lot of problems for a lot more people,” Amber Smock, vice president of advocacy for Access Living, a Chicago-based disability service nonprofit said during an interview with the Tribune. “There are safeguards but they won’t protect everyone from unintended consequences from this particular bill.”
Folks with disabilities often face discrimination and bias in health care, and they are already at risk of criminal neglect or abuse, Smock said.
She worries that patients could be steered or coerced into ending their lives, particularly by insurance companies, who she fears might view physician-assisted suicide as a cheaper alternative to more expensive treatments or care.
“There is simply almost no way to ensure that a person with a disability who asks for (medical aid in dying) is not somehow being coerced by family, their doctor, or insurance companies,” she said in a written statement. “Furthermore, existing (medical aid in dying) programs tend to set a high level of burden of proof on the patient to show that they have been coerced. (Medical aid in dying) supporters claim that there is no evidence that people are ‘steered’ or coerced; that’s because it’s hard to meaningfully report it.”
A National Council on Disability 2019 report on the nation’s medically assisted suicide laws said that “insurers have denied expensive, life-sustaining medical treatment, but offered to subsidize lethal drugs, potentially leading patients to hasten their own deaths.”
The report also argues that misdiagnoses of terminal illness can scare patients into hastening death; while fear and depression often spur assisted suicide requests, “referral for psychological evaluation is extremely rare,” the National Council on Disability said at the time.
“As someone who has battled cancer and been given weeks to live and am still thriving years later, I know firsthand that well-intending doctors are often wrong,” Neil Romano, the National Council on Disability’s chairman at the time, said in a statement. “If assisted suicide is legal, lives will be lost due to mistakes, abuse, lack of information, or a lack of better options; no current or proposed safeguards can change that.”
Smock added that Illinois residents already have other end-of-life options such as advance directives, filling out “do not resuscitate” forms and refusing medical treatment.
“In the future, Access Living will continue to oppose (medical aid in dying) as we believe that the ableism we experience in life will translate in discrimination in death,” she said in the statement.
…There are, however, many people on the other side of this issue. They don’t generally oppose palliative or hospice care or the right of people to die at home. But they draw the line at a doctor — sworn to protect human life — intentionally being part of causing it to end and thus being asked to carry that ethical burden. The matter is of particular concern to those who advocate for the disabled and worry about possibly unconscious physician bias.
Our attention was drawn to aHarvard study that surveyed doctorsand found that 82.4% of those physicians believed that “people with significant disability have worse quality of life than non-disabled people.” The study also found that only 40.7% of physicians were “very confident” in their ability to provide equal quality care to patients with disabilities. In the minds of those who advocate for persons with disabilities, this kind of implicit bias could mean that doctors would be less rigorous in making sure that safeguards were followed and, yet more troubling, might even push disabled persons with serious illnesses in that direction.
On similar but related grounds, we were told of many worries that someone’s understandable desire not to be a burden on one’s family members might also lead them in the direction of physician assisted suicide.
So here’s an especially difficult ethical scenario to consider: Should a person seeking their own death so as not to be a burden be said to be making a personal choice protected by the law?
You might very reasonably answer in the affirmative, given the selflessness of some Illinoisans. But on the other hand, family situations vary greatly and the well-publicized availability of this option might lead people to end their lives for altruistic purposes when personal doubts remain. Especially with the potential encouragement of a medical professional.
For that reason, and others, we believe that Illinois should not pass this legislation and join the 11 jurisdictions (California, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont and Washington) that have passed similar laws. We say this believing passionately in the value of palliative and hospice care and fully supporting family members and medical professionals who want to take an individual patient’s wishes into account and not artificially sustain life beyond what is clearly the point of no return. We know that many inspiring people in this field quietly find ways to ease us gently from this world when our time is up.
But with all due respect, and with the acknowledgement that this issue is one on which legislators should be allowed to debate and vote their own consciences without judgment, we think this matter best kept as it is now in our state.
AS NEW HAMPSHIRE considers legalizing assisted suicide, also referred to as medical aid in dying (MAID), I would like to draw attention to the potential impacts this bill could have on disabled and other marginalized residents.
I was 19 years old the second time I attempted to die by suicide. I had just been diagnosed with a chronic but not life-threatening illness, I had rapidly lost about 70% of my hearing in the middle of completing a music degree, and I was struggling with untreated anorexia that was taking a serious toll on my health.
At my intake appointment with a new therapist a few days after my attempt, I explained my situation and the hopelessness I was feeling. She nodded along, then looked me in the eyes and said something I will never forget:
“I would probably kill myself if I were you.”
She wasn’t the first person to say this to me as I started becoming more noticeably disabled, but she was probably the last person I expected to do so. Now that I work in disability policy, nothing surprises me. I hear stories from other disabled people about doctors pressuring them to sign DNRs because they are assumed to have a low quality of life due to their disability. I get messages on social media from people asking me how to advocate for appropriate pain management when their doctors don’t believe the amount of pain they’re in. I pore over story after story of people like Michael Hickson and Tinslee Lewis having treatment withdrawn, withheld, or threatened because of the pervasive view that it’s better to be dead than disabled.
This is why I am critical of policies that are biased toward ending the lives of people with significant disabilities rather than toward preserving them — policies like legally-assisted suicide.
Assisted suicide and the discussion around terminal illness in general has historically been framed as an issue for older adults. Young people aren’t “supposed to” have to think about death, yet adulthood for twenty-somethings like me continues to be shaped by a deadly pandemic, mass shootings, and systemic violence. We’ve heard story after story of perfectly healthy young people who got infected with COVID and are now permanently and significantly disabled.
One of my neighbors, a man in his early 30s, was a victim in a shooting that claimed the life of his 8-year-old son. He sustained permanent physical disabilities from the gunshot wound. Now more than ever, young people need to be invested in equitable treatment for disabled people, not only because we are human beings who deserve care, but also because the odds of younger people becoming disabled or caring for a disabled person are continually rising.
While proponents claim that assisted suicide is only for “terminally ill people who are about to die anyway,” they ignore the fact that many disabilities can become terminal if left untreated. In our for-profit healthcare system, denying or merely delaying care can make an otherwise manageable disability terminal. Medical racism and transphobia increase barriers to care, resulting in BIPOC and trans people reporting postponing or avoiding medical care due to discrimination.
Up to a quarter of people with chronic illnesses have chosen not to fulfill a prescription to manage their condition because of cost. The more vulnerable a person is, the more likely they are to be “steered” toward assisted suicide. It doesn’t take direct coercion to make this happen; a system where death seems like the best or only option for the most marginalized patients is not a system that needs a legal avenue for doctors to help us die.
As my colleague and prominent disability justice activist Anita Cameron has written, disabled people need “supports to live, not tools to die.” A policy of assisted suicide is not an avenue for bodily autonomy or choice; it is yet another tool that can be used to deny care to those who need it most.
Newmarket’s Jules Good is a disability policy professional and activist.
The Autistic Self Advocacy Network will lead disability organizations and advocates across the country in the thirteenth annual Disability Day of Mourning this Friday. Below is ASAN’s message about the vigils being held in memory of disabled lives lost and how you can participate.
ASAN’s Message:
In the past five years, over 570 people with disabilities have been murdered by their parents, relatives or caregivers.
On Friday, March 1st, the disability community will gather across the nation to remember these disabled victims of filicide – disabled people murdered by their family members or caregivers.
In the year since our last vigil, our community has lost over 50 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. We read the victims’ names, see their photographs, and gather what information we can about their lives. The criminal justice system has continued to give lighter sentences to parents and caregivers who murder disabled children. And we have seen the news media continue to portray these murders in a sympathetic light. We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities.
Since 2012, ASAN and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. To learn more or sign up to lead a vigil, view the Anti-Filicide toolkit.
We will be hosting our Virtual Vigil on Friday, March 1st – and we hope to see you there if you cannot find or attend a vigil in your area.
COVID-19
Some Day of Mourning vigils are virtual, while others are in-person. We recommend that each person consider the potential risks, and make sure to wear a mask and social distance if you attend an in-person vigil. If you are concerned about attending a vigil in-person, please consider attending ours or another virtual vigil in your area.
All vigils [listed HERE] are virtual unless otherwise noted.
As we celebrate the contributions of the Black community to American history it’s important to know and understand racial disparities in healthcare, its history, the impact it has on the Black community and why Black people, particularly disabled people, must fight against assisted suicide.
There is a long and shocking history of medical abuse and experiments on the Black community, fueled by racism and stereotypes, that has led to, and continues to spur, disparities in healthcare.
From the earliest days of this nation, Blacks have received abysmal treatment at the hands of doctors. Black enslaved people were property and seen as little more than animals. Enslaved people came to know that when they were purchased by doctors, their lives would be especially hard because they would be experimented on without anesthesia. In everyday life, enslaved people who became ill got the most cursory of medical treatment; most slaveowners called in the veterinarian for them, while whites got to see a regular doctor.
An illustration of the the worthlessness of the Black body and how expendable we were can be found in the practice of J. Marion Sims, called the “father of modern gynecology”. He used enslaved Black women to test his techniques and to perform surgeries on them without anesthesia. When white staff could no longer bear the screams of agony of Dr. Sims’s patients as he did surgery on them, other Black enslaved women were forced to restrain the patients during these barbaric acts.
After slavery, the treatment of Black patients did not improve much. Hospitals and medical schools saw us as medical or research material, rather than patients and based their diagnoses, prognoses and treatments on vicious racial stereotypes about us and our community. Many types of junk science such as phrenology, which made racial assumptions based on the size of, and bumps on the skull, were in vogue, and it greatly influenced the thoughts and attitudes of the white medical establishment towards us.
Black doctors in the late 19th and early 20th centuries often could not practice medicine in the United States, and those who were allowed to, could not have white patients. They spoke out against the cruel and disrespectful treatment of Blacks in hospitals and research centers but were largely ignored. Unlike whites, who could sue for mistreatment, Blacks had no legal recourse. Our community came to fear hospitals and deeply mistrust doctors, particularly white or non-Blacks because we knew that at their hands, we would die or at the very least, suffer abuse.
Today’s racial disparities in healthcare are a direct result of this history. Blacks are more likely to die from a heart attack or cardiac disease, yet we receive inferior care compared to whites.
The stereotype that Blacks are closer to animals, and therefore feel less pain than whites, has led to Black patients receiving abysmal treatment for pain. Our pain isn’t taken seriously. We are accused of being hysterical, emotional, or outright drug seeking. In a recent study of 1 million children with appendicitis in emergency rooms around the nation, Black children were one-fifth as likely to receive opioid painkillers for their severe pain as white children. In a 2016 study, 1/3 of 222 white medical students and residents surveyed held the false belief that Blacks had thicker skins and a higher tolerance for pain. They were less likely to perceive the intensity of black patients’ pain and recommend appropriate treatment.
We die from diabetes at twice the rate of whites. We are the sickest patients waiting for organ transplants, yet often die waiting. Blacks are diagnosed with cancer at much later stages and our prognosis is worse. Due to the stereotype of Black patients’ noncompliance with doctors instructions and orders, we are not afforded the state of the art medical care that white patients routinely get, especially when they have the money.
Much of what was learned about medicine in America was learned on the backs of Black enslaved people and poor Blacks. One example is the infamous Tuskegee Experiment, where poor blacks, mostly men, were not treated for syphilis, while doctors allowed the disease to take it’s course so that they could learn what the end results were. HeLa cells, the first line of immortal human cells, were taken from the body of Henrietta Lacks, a Black woman who died of cervical cancer in 1951, without the knowledge or consent of her or her family. Those cells are still being used in medical research today.
The Black community has been and is being ravaged by COVID. We are three times more likely to die from COVID and four times more likely to be hospitalized for it.
COVID has laid bare racial disparities and disability discrimination in healthcare that leads to medical rationing and futility decisions.
Michael Hickson’s case is a clear case of discrimination against disabled people.
Michael Hickson was a 46 year old Black man from Texas, the father of 5 children. Mr. Hickson was a quadriplegic, the result of a brain injury caused by a heart attack.
He was placed in a nursing home, where he contracted COVID. He was sent to St. David Hospital, in Austin, Texas. However, due to his disability, the doctor decided not to treat him, stating that he had no quality of life, but family videos show him laughing and singing with his wife and children.
He was placed in hospice and allowed to die.
So, what does this have to do with assisted suicide?
Everything! If you are not getting effective pain treatment for a terminal illness and you live in a state where assisted suicide is legal, you’ll be more likely to seek that recourse. If you are poor and live in such a state, your doctor can convince you to choose assisted suicide so that you won’t be a financial burden on your family.
Wait, what exactly is assisted suicide?
Assisted suicide is when someone, usually terminally ill, with six months or less, to live, makes a request for a lethal dose of medication prescribed by a physician or medical provider. After the waiting period, if there is one, the provider issues the prescription, the person or someone designated by them picks it up, and the medication is ingested by the person to whom it is prescribed. There is no doctor or witness present to report if the medication was taken by the person, themselves, as is the law, or administered by someone else, which is illegal. Currently, assisted suicide is legal in ten US states and the District of Columbia. As of this year, 20 states have either introduced assisted suicide legislation or are expanding bills that have already passed.
We Blacks are overwhelmingly against assisted suicide, but there’s an organization called Compassion and Choices that’s going into Black communities trying to convince us that assisted suicide is a good thing and that it’s a right. That’s how they bamboozle us by couching it in those terms, because we know what it feels like not to have basic human and civil rights.
Compassion and Choices is an organization formed and led by middle and upper middle class whites. This demographic of white people overwhelmingly support assisted suicide. Compassion and Choices hires middle class Black staff to come into our communities to spread the lie about assisted suicide because they know that we’re more likely to listen if information comes from someone who looks like us. As a result, some middle class and wealthy Blacks are falling for this farce. As assisted suicide becomes normalized, racial disparities in healthcare will mean that Black patients will be more likely to be written off as terminal and steered towards ending our lives. Being disabled compounds this. Disabled people also experience health disparities because doctors quite literally devalue our lives, don’t want us as patients and don’t believe that we are treated unfairly. Add being Black to that, and the risks of being written off as terminal in a state where assisted suicide is legal, rises exponentially.
In the face of rampant healthcare inequities, it’s no surprise that assisted suicide is rarely used by the Black community. We fight to live. We fight to get access to treatment. We fight for medical care that most white folks take for granted.
Black people, wake up and remember our history! Realize and understand what white supremacy is and how it works! Listen to our elders. Listen to Black disabled folks whose lives are devalued every day. Listen to poor Black folks on the street who can tell of the injustices they suffer in emergency rooms across the nation because they’re poor and homeless. Compassion and Choices does not have the best interests of the Black community in mind. They do not care about us; they are merely promoting an agenda. They know full well about the racial disparities in healthcare, but are hoping that either we don’t know or that we have forgotten. They want us to believe that since we Blacks are less likely to receive adequate end of life care that assisted suicide is the answer. It is not! It is not our culture. It is not our life. It puts us, particularly if we have disabilities, are sick or are elders, or poor at grave risk. It is discrimination of the highest order and we must fight back and fight hard against this malevolent form of white supremacy.
The broadening of eligibility under the Canada’s euthanasia law to include people who are deemed to suffer from “untreatable mental illnesses” has been delayed once again. The expansion had been scheduled to take effect in March. According to theNew York Times, the postponement occurred because a parliamentary committee concluded that there are not enough doctors, particularly psychiatrists, in the country to assess patients with mental illnesses who want to end their lives and to help them do so. The Canadian Health Minister Mark Holland stated that “the system is not ready, and we need more time.” He did not give any new effective date for the expansion, although a committee member expressed the hope that the delay would be indefinite.
Shortly before the delay was announced but when there were already signs that the Canadian Government was having “second thoughts”, the Editorial Board of the Washington Post wrote a sharply worded piece opposing voluntary euthanasia for psychiatric survivors in Canada and elsewhere. The importance of a major newspaper taking such a stand cannot be overestimated.
It is true that the editorial seems to assume that euthanasia and assisted suicide are more acceptable for those with life-threatening physical conditions than for psychiatric survivors. It does not attack the type of assisted suicide laws enacted in several states in this country. Yet, every argument that the editorial makes against legalizing euthanasia for psychiatric survivors also mitigates against permitting assisted suicide for any group. Indeed, down to its use of the phrase “second thoughts,” the editorial reverberates with arguments that disability rights advocates have made in opposing assisted suicide in general. (Note: The piece does use some terminology regarding psychiatric survivors that activists would avoid.)
The editorial states, “Many in the grips of psychiatric distress view, temporarily, suicide as their only way out, only to later be grateful they did not kill themselves in the depths of their suffering.” This is equally true of people initially demoralized by physical disabilities and illnesses struggling to get the support they need. The heart of the lawsuit brought by two disabled Californians (joined by several advocacy groups) challenging the constitutionality of the state’s assisted suicide law is the fear that if they become suicidal, they will not be given the suicide prevention services available to the general California public but instead be approved for a lethal drug prescription.
Disability rights activists have long pointed out that assisted suicide is less about patient choice and personal autonomy and more about what health care providers should or should not be able to do. Health care providers are the designated gatekeepers in the statutory scheme. They can make eligibility determinations based on incomplete knowledge of the patient, errors in prognosis or implicit bias. Along these lines, the editorial stated, “There might, indeed, be mentally ill patients suffering from symptoms so debilitating and intractable that their options are uniformly dismal. But designing a system to distinguish them reliably from others in mental distress, who would benefit from treatment, is at least extremely hard, if not impossible. Certainly, Canada’s system is not up to the task.” Health Minister Holland said virtually the same thing when he announced the postponement of the expansion.
The Canadian system is not up to the task. The American system is not up to the task. No health care system is up to the task because what a euthanasia or assisted suicide law expects health providers to do is to determine, based on health status, that a person’s continued existence is so irredeemable and lacking in value that they are eligible for state sanctioned death. No one has the capacity to do that. In Canada, finding eligibility seems to be the default position – only 3.5 percent of written requests for euthanasia were denied in 2022.
Lastly, the Post takes on the issue of “safeguards.” Noting that Quebec’s top end-of-life care regulator has decried rampant noncompliance with the rules in that province, the editorial states that although proponents may have “high confidence in the procedures they’ve developed to control psychiatric euthanasia. They need to remember that no procedural protections are perfect…Good intentions tend to have unintended consequences. In the United States, Americans need to keep a close eye on their neighbor’s experience and learn from it.”
We could not have said it better ourselves. Thank you, Washington Post! However, given all that you have said, you should join us in opposing assisted suicide in any iteration.
