Not Dead Yet UK Earns Media Coverage In “Big Issue”
Our good friends at Not Dead Yet UK got some significant coverage including photos in the Big Issue publication last month. Big Issue Group describes itself as media and other “initiatives under a shared mission to create innovative solutions through enterprise, to unlock social and economic opportunity for the millions of people in the UK living in poverty.”
The article is entitled “Assisted dying: The right to die shouldn’t only be for the rich. But could legalising it harm the poor?” It fairly extensively covers both sides of the issue. Below are the NDY UK excerpts from the text:
Dennis Queen, a member of Not Dead Yet UK, says: “We want people to help us campaign for equal rights to live in the first place, not to be subjected to brutal systems that make us suicidal. I lost a friend 18 months ago to suicide mostly because of problems with the benefits service.
“It’s not that I don’t think people will opt for this. I’m worried that people will be lining up in their droves because of neglect. There is no way we can avoid that through a safeguard. So while that is the case, it’s not safe to talk about assisted suicide.”
It is an argument echoed by politicians on both sides of the spectrum. Jeremy Corbyn has advocated against it, arguing that he is “concerned that it would be open to abuse and put the most vulnerable people at risk”.
Sir Stephen Timms, Labour MP and chair of the work and pensions committee, wrote in Labour List last month: “People with disabilities, the poor and those who fear being a burden are all at risk when assisted suicide is permitted, while investing in high-quality palliative care, which is harder to access for the impoverished, can easily be marginalised when assisted suicide is allowed.”
Queen is a wheelchair user and lives with severe chronic pain which can only be relieved by morphine, and she suffers from incontinence. “My treatment plan now is to up the morphine until I die,” she says.
There have been times where she has felt suicidal and she still struggles with her mental health, but she has three children and a support system and she is grateful to be alive.
“I’m doing a lot better now,” she says. “I had the right help and my life is getting back on track. I’m starting to feel better every day. I know acutely what difference the right support makes.”
Queen has lost trust in the systems meant to protect disabled people, and she does not believe the government is capable of legalising assisted dying while still protecting the vulnerable.
Phil Friend, a disability rights campaigner and co-convenor of Not Dead Yet UK, admits there are times he has felt like a “burden” to his wife. He has had a successful career and a happy life, and he knows that his wife would hate to hear him speak like that, but it is his truth.
Friend says: “If you change this law, you make disabled people vulnerable. And that’s not right. We shouldn’t weaken laws that are there to protect people.”
Friend admits that in cases such as Norman’s [a man with cancer described in the article], it is hard to argue that he should not have had access to assisted dying, but he believes there must be a proper safety net in place to protect vulnerable people before assisted dying is an option.
Those fighting for assisted dying to be legalised believe it is possible to build a system with proper safeguards in place, arguing that people would never be approved purely due to social issues.
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People on both sides of the debate agree that vulnerable people must be protected. Some believe assisted dying is the kindest option while others believe that legalising it would put the vulnerable at risk. Some argue that it would let the government off the hook, while others say it would be a wake-up call.
Friend says: “If you could convince me that the safeguards were in place – that the right palliative care and social care had been done and there was no way of relieving somebody’s pain and suffering, having done all of that, then there might be a case of saying okay.
“But we haven’t even got close to providing any of that. Our national health service, as you well know, is falling to bits. Social care is pretty non existent. The benefits system is a mess. So people are making decisions based on having nothing.
“They believe it’s better to die. And yet we know that if you give people the right accommodation, the right social care support, the right palliative medicine, they do not talk about ending their lives. They talk about living their lives.”
Is Canadian Style Assisted Suicide and Euthanasia Coming to California?
A California State Senator, Catherine Blakespear, introduced a bill (SB 1196) earlier this month that resembles Canada’s law and, here in the U.S., reflects the broad agenda openly espoused by the Hemlock Society and Final Exit Network. The agenda of these organizations has long included eligibility for people with non-terminal conditions and disabilities.
When Not Dead Yet activists joined me in attending Jack “Dr. Death” Kevorkian’s trial in the late 1990s, Hemlock’s executive director Faye Girsh was there supporting him. Two thirds of his body count consisted of people with non-terminal disabilities. Girsh also advocated eligibility for people with cognitive disabilities and dementia, with or without consent. Leaders also advocated active euthanasia and “mercy killing.”
In time, these organizations evolved, split, regrouped and from them emerged Compassion and Choices, eclipsing the remains of the other organizations. Compassion and Choices was smarter and took a step-by-step approach to changing public policy. As their first executive director, Barbara Coombs Lee (who did not publicly support Kevorkian) has said, eligibility expansions are “an issue for another day.” Their focus has been on passing Oregon-style assisted suicide bills in more states which, as written, require nothing to address the reasons people request assisted suicide and preclude gathering data on how many people are coloring how far outside the lines. Nothing to see here. Please pass more bills.
So it surprised me a little to see a California Senator introduce a bill (SB 1196) in a state where assisted suicide is already legal, a bill that would blow eligibility wide open by replacing the term “terminal disease” with:
“grievous and irremediable medical condition,” defined as a medical condition that (1) is a serious and incurable illness or disease, (2) has placed the individual in a state of irreversible decline in capability, (3) is causing the individual to endure physical or psychological suffering due to the illness, disease, or state of decline that is intolerable to the individual and cannot be relieved in a manner the individual deems acceptable, and (4) after taking into account all of the individual’s medical circumstances, it is reasonably foreseeable that the condition will become the individual’s natural cause of death. (Bill Summary)
So much for us here at NDY, and millions of disabled people. No more suicide prevention for us. It’s been, well, a generation since assisted suicide proponents in the U.S. have made it so very obvious that disabled people are targeted by these laws. They’ve been trying to claim it’s not about us. They say disability alone is not enough to be eligible. Never mind that everyone who gets lethal drugs is disabled. Never mind that disability related concerns are people’s reasons for requesting assisted suicide. Nothing to see here. It looks like Blakespear didn’t get the memo.
As with the Kevorkian situation, Compassion and Choices has already announced opposition to Blakespear’s bill, noting that the current California assisted suicide law comes up for renewal in 2031.
So far, Blakespear is the only sponsor. It had best stay that way.
[Supplement: A Deseret News article provided a copy of a bill summary which appears to be from Blakespear’s office.]
Stop Assisted Suicide Illinois Is a “Sassy!” Coalition Doing Great Advocacy
It’s more than a name – Stop Assisted Suicide Illinois! Here are two recent SASI efforts with disability leaders in the forefront opposing the state’s assisted suicide bill.
First, a press conference lead off by Access Living’s Amber Smock:
And a powerful op-ed in the Chicago Sun Times by the former executive director of a center for independent living in the greater Chicago area, Pam Heavens:
Illinois should not legalize ‘physician-assisted suicide.’ There’s too much potential for abuse.
On July 26,1990 President George H.W. Bush signed the Americans with Disabilities Act, or ADA. This historic legislation prohibits discrimination against those with disabilities, but we nevertheless must remain vigilant to ensure that our right to live is not compromised.
Right now, those of us with disabilities are facing a significant battle: the defeat of a growing movement that wants to make physician-assisted suicide legal in Illinois. This fight is one with the goal to, literally, save our lives.
Proponents of physician-assisted suicide call it ‘medical aid in dying’ and say that the practice is humane and compassionate, and relieves the person from pain. They say doctor-assisted suicide is what the disabled person (anyone with a six months’ prognosis, and thus eligible for physician-assisted suicide, are disabled by definition of the ADA) wants; that the doctor is simply fulfilling a last wish for the patient. Another argument from proponents is that doctor-assisted suicide will be strictly regulated. They say assisted suicide providers empower people who are of sound mind, but who have a terminal illness, with options for controlling their death.
But opponents argue that doctor-assisted suicide is full of avenues for abuse, coercion and harm. The overwhelming majority of people who have been helped to die by doctors had various disabilities; for instance, most of those using physician-assisted suicide have cancer, which is listed as a disability by the ADA.
As a 67-year-old woman with a significant disability, I have been a vocal opponent of doctor-assisted suicide for decades. I cannot help but question whether the people who have been helped to end their lives, in the states where the practice is now legal, had adequate access to the numerous services available to them to make life easier. Services such as peer support, personal assistant services, home modification programs, living skills enhancement, or hospice and palliative care.
Did their health insurance meet their needs? Was health insurance even available to them? Did relatives, friends, and doctors give subtle or overt cues that ending their lives would be much better?
The National Council on Disability, an independent federal agency, in 2019 released the findings of a study that found the ‘’safeguards” in place in suicide assistance laws are ‘’ineffective’’ and also ‘’fail to protect patients.’’
Health care is already inequitable
Diane Coleman, founder of Not Dead Yet, a national grassroots group that opposes legalization of assisted suicide, has pointed out that “assisted suicide drugs are cheaper than meeting the actual health care needs of people with a terminal or serious, advanced condition.” That’s because medical treatment, hospitalizations, nursing homes and home care would quickly exceed the cost of drugs provided to those who request them, as well as the cost of doctor visits required under assisted suicide laws.
A good example of this comes from Dr. T. Brian Callister, who wrote in 2021 about why he opposes assisted suicide. He had two patients, one from California and one from Oregon, who needed lifesaving treatments but were denied them by their insurers. However, unprompted, both were offered physician-assisted suicide. Yet with treatment, neither patient was terminal.
[To read the whole op-ed, please go HERE.]
Access Living’s Amber Smock Quoted Extensively In Chicago Tribune
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.
The March 5th article, “Should Illinois become a ‘right-to-die’ state? Lawmakers consider end-of-life option for terminally ill adults,” covered both sides. Here is the segment giving Access Living’s perspective as a disability rights organization:
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.
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The editorial board’s opinion piece was also balanced: ‘Right to die’ debate comes to Illinois. Both sides have merit, but we would vote no. In fact, both pieces gave more lines to proponents’ arguments. Nevertheless, they clearly found the concerns from the disability and patient perspective more compelling:
…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 a Harvard study that surveyed doctors and 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.