Amy Hasbrouck Submits Powerful Testimony To Canadian Senate Committee

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On November 23, 2020, Amy Hasbrouck, NDY Board Member and Director of Toujours Vivant-Not Dead Yet, submitted testimony to the Senate Legal and Constitutional Affairs Committee of the Canadian Parliament.

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Amy E. Hasbrouck

First, her description of TVNDY is a strong and moving introduction to the disability rights opposition to assisted suicide and euthanasia laws:

Thank you for the opportunity to address the committee. Toujours Vivant-Not Dead Yet (TVNDY) is a project of the Council of Canadians with Disabilities to inform, unify and give voice to the disability rights-based opposition to assisted suicide, euthanasia, and other ending-of-life practices that have a disproportionate impact on disabled people, women, elders, indigenous and racialized people, and persons subject to other forms of oppression. TVNDY was founded in 2013 as a progressive, non-religious organization of disabled people and our allies. We believe that there can be no free choice to die while old, ill and disabled people don’t have a free choice in where and how we live. We recognize that the movement toward assisted death is driven by the devaluation of disabled lives captured in the phrase “better dead than disabled” and manifest in society’s inequitable application of suicide prevention policies; where non-disabled people who want to die get suicide prevention services, while disabled people get suicide completion assistance.

The Canadian Parliament will soon be voting on a bill to expand the current euthanasia bill. This bill is in response to a court case (Truchon, et al.) in which two disabled people, one with cerebral palsy and one with MS, sued because doctors would not say their deaths were “reasonably foreseeable,” the vague standard under the current law. The testimony sums up the situation as follows:

In its 2015 decision in Carter v. Attorney General of Canada that struck down the prohibition on physician assisted dying, the Supreme court said that protecting “vulnerable” people (such as elders, women, LGBTQI and disabled folks, indigenous and racialized people) would require a “carefully designed system imposing stringent limits that are scrupulously monitored and enforced.” The language and implementation of Bill C-14, the medical assistance in dying or MAiD law have not met the Carter mandate.  Bill C-7 compounds this failure by rolling back protections beyond what is mandated by the Québec superior court in the Truchon c. procureur généraldecision, and before parliament has done the five-year review required in the MAiD statute. Far from being “an exceptional measure for exceptional cases” . . . , Canada’s program already has resulted in the deaths of nearly 20,000 disabled people, many of whom also have a terminal illness.

The TVNDY testimony highlighted the lack of independent living options impacting people with disabilities who request euthanasia, and pointed to concerns raised by the United Nations Special Rapporteur on the Rights of People with Disabilities:

In her 2019 End of mission statement, the United Nations Special Rapporteur on the Rights of People with Disabilities, Catalina Devandas Aguilar said she was “extremely concerned about the implementation of the legislation on medical assistance in dying” as well as the lack of options for independent living. In our series of webcasts “No Free Choice” TVNDY has documented numerous examples of persons who sought assisted death because they did not have the services and supports they needed to maintain a reasonable quality of life. . . . During the pandemic, disability rights activists have joined with racial and other social justice movements to declare that #NoBodyIsDisposable, yet 80% of deaths from COVID-19 have occurred in long-term care facilities.

Hasbrouck pointed out that the proposed amendments to the Canadian bill go beyond what would have been required by the recent Truchon decision, and make matters worse “before the five-year review mandated by Bill C-14 has been accomplished.”

Bill C-7 would reduce the number of witnesses required to sign the written request from two to one, and allow that person to be a care provider, thus setting the stage for an abusive attendant to coerce a person to ask for death, and then serve as the only witness to the request. Instead of clarifying what it means for someone’s natural death to be “reasonably foreseeable” — or scrapping the slippery and malleable concept altogether — Bill C-7 puts those folks on a fast-track to death.  The bill would eliminate the ten-day reflection period, as well as the requirement that the person be able to confirm their consent when the lethal injection is given; thereby creating a de facto advance directive. So even if a person must wait weeks to see if an antidepressant will relieve their emotional distress, or months to get access to palliative care, they can get the deadly dose right away.  That person with the abusive caregiver mentioned earlier; no one will even blink if they’re euthanized the same day they’re approved (as happened in Québec).

The testimony concludes:

Instead of rushing to pass over-reaching legislation to meet a court-imposed deadline in the midst of a pandemic, parliament should concentrate on performing a rigorous and balanced examination of the euthanasia program as a whole.  Parliament must determine whether the MAiD law . . .monitoring system is robust enough to detect problems, prevent the deaths of ineligible persons and impose consequences for those deaths. The five-year review could also answer the question whether it’s possible to enforce the MAiD law, let alone if it’s being enforced. Anything less would be a betrayal of the democratic process and the public trust.

To read the full testimony, please go to the TVNDY website here.

NDY Joined In PIPC Comment, and Filed Its Own, Regarding PCORI Principles

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At first, responding to the draft principles of the Patient-Centered Outcomes Research Institute (PCORI) seemed more complex than NDY could fit into our tight schedules. But the principles were in response to new language added to PCORI’s authorizing law:

. . . In addition to the relative health outcomes and clinical effectiveness, clinical and patient-centered outcomes shall include the potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively. . . .

“Potential burdens and economic impacts” on “different stakeholders”? That language raised concerns.

Fortunately, the Partnership to Improve Patient Care (PIPC) took on the task of developing a comprehensive public comment on the draft PCORI principles. NDY signed onto that, along with many other groups.

In addition, NDY submitted a short comment of our own, as follows:

Not Dead Yet is a national disability rights group whose focus includes protecting the right to receive desired life-sustaining care. Not Dead Yet has signed on to the comment submitted by the Partnership to Improve Patient Care, but we would like to submit a short additional comment.

A significant concern is the impetus behind the 2019 amendment to the PCORI reauthorization, which included the following ominous language:

“Research shall be designed, as appropriate, to take into account and capture the full range of clinical and patient-centered outcomes relevant to, and that meet the needs of, patients, clinicians, purchasers, and policy-makers in making informed health decisions. In addition to the relative health outcomes and clinical effectiveness, clinical and patient-centered outcomes shall include the potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively.”

The PCORI Principles further clarify that “PCORI is charged with considering the full range of outcomes that meet the needs of ‘clinicians, purchasers, and policy- makers in making informed health decisions,’ in addition to those that meet the needs of patients.”

While it is comforting that PCORI reaffirms “the limitation that PCORI ‘not develop or employ a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended,’” the 2019 amendment muddies the waters at best.

The principles are very well word-smithed, but the health insurers and other stakeholders whose highest priority is increasing their economic bottom line are very good at word-smithing as well. The amendment is a loophole, a potentially dangerous loophole, slipped into the PCORI authorizing legislation.

PCORI will have to be vigilant to prevent various stakeholders from using PCORI to their economic benefit at the expense of patients. Given the longstanding cost-cutting pressures in the healthcare system, now increased by the COVID crisis, this will be no small task. We hope that you will seek the assistance of a broad array of disability organizations in your efforts.

John Kelly – Assisted Suicide: It’s All about Disability

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Proponents of assisted suicide laws have insisted for years that assisted suicide has nothing to do with disability, when a glance at the reported “end of life concerns” in Oregon showed those concerns to be all about people’s psychological distress over the disabling aspects of their serious disease.

As one example, lead Massachusetts proponent of the assisted suicide ballot question in 2012, Dr. Marcia Angell, told radio station WBUR that “This has nothing to do with disabled people, nothing whatsoever… It’s fine for them to take whatever position they want to. But they have no special standing.”

On September 30, Director of Second Thoughts MA John B. Kelly engaged in a two-hour debate [full debate not yet captioned] on assisted suicide with Thaddeus Pope, the Director of the Health Law Institute at the Mitchell Hamline School of Law. During a segment discussing a question from a Massachusetts disabled man who would want to use assisted suicide because of feelings around incontinence, Pope and Kelly had the following exchange.

Referring to the Oregon reports, Kelly said that assisted suicide laws are “all about disability. All the reasons are about disability.” Pope replied, “Well, I mean, they are. I mean, that’s worth conceding, I think.… So everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability.”

He concludes that “I guess the key thing is that’s their judgment, right? Some people would say, ‘I find this condition intolerable.’ Other people won’t.”

Kudos to Thaddeus Pope for his honesty!

Now if other proponents can be equally as honest, we can have out in the open the outrage of declaring some people are “better dead than disabled.”

Second Thoughts MA and the national disability rights group Not Dead Yet argue that disabled people deserve equal protection under the law regarding suicide prevention services.

The transcript of the exchange is as follows.

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John Kelly

Thaddeus Pope: It’s a framing question. Is the State of Massachusetts thwarting, is it getting in the way or is it facilitating? All he wants is for the State of Massachusetts to get out of the way. He’s not asking for affirmative support or anything like that. He just says, just decriminalize it. Because as of now, the state government of Massachusetts has inserted itself between him, this questioner, and his physician. And all he wants is for the state to get out of the way.

John Kelly: I would say that, you’ve turned that on its head. The state gets involved by approving of the person’s reasons for wanting to die, and giving the doctor immunity by prescribing this. Now, if someone wanted to die because they felt that extraterrestrial beings were assaulting them and trying to kill them, well, they probably wouldn’t be seen as rational. But as long as the formulation that it’s rational for a person to feel lack of dignity over incontinence, then we are instituting massive prejudice against people who live with those conditions. That seems self-evident to me and I don’t understand how people can say, “oh, it has nothing to do with disabled people.” When it’s all about disability. All the reasons are about disability.

Moderator Lisa Schiltz: Thaddeus.

Thaddeus Pope: Well, I mean, they are. I mean, that’s worth conceding, I think. I mean his diagram, the two Venn diagrams, everybody who’s terminally ill probably is definitionally disabled. So if you have metastatic terminal cancer, you’re disabled. So everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability. It’s because of the cancer or the side effects or the conditions from the cancer. So that’s a true statement, but I guess the key thing is that’s their judgment, right? Some people would say, “I find this condition intolerable.” Other people won’t.

Anita Cameron Testified At “People’s Hearing” for In-Home Services

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Anita Cameron, Not Dead Yet Director of Minority Outreach, testified at ADAPT’s “People’s Hearing” on October 2, 2020, to press for full federal funding for home and community based long term services and supports. Anita makes a passionate appeal for the preservation of the Affordable Care Act, which has provisions for people like her with pre-existing conditions. She calls out nursing homes as Covid-19 death traps, and how Black quadriplegic Michael Hickson was killed in a Texas hospital because of a quality-of-life judgment. Anita says that Covid -19 has ravaged the Black, indigenous, and people of color communities. She mentions AOC [Alexandra Ocasio-Cortez] and calls on people of color communities to contact their legislators and to keep fighting on behalf of people like herself whose health issues prevent them from being out there. She ends with ADAPT’s longtime call to arms, “Free our People!”

Below is a video of her moving testimony, followed by a transcript.

Hi, everyone. I didn’t hear my introduction. People were worried because my phone died in the middle of all of this. I’m really happy that we are having these people’s hearings, because look, I wanna say, we cannot afford to lose the Affordable Care Act.

I have been going through all kinds of hospitalizations, doctor’s visits. Even today, I spent pretty much the entire afternoon at the doctors, for severe health issues that I’m going through. I have all kinds of preexisting conditions. If it were not for the Affordable Care Act, I wouldn’t have my insurance. I wouldn’t be able to see the doctors that I’m seeing now and we need this. And we need. Look, it’s bad enough. If we get rid of the Affordable Care Act, yeah, I’m gonna talk about stuff that people don’t wanna hear or whatnot.

But first, briefly, I’m Anita. I’m from Rochester, ROC ADAPT, and in my day job, I am Director of Minority Outreach for Not Dead Yet. We know what COVID has done to communities of color. It’s ravaged the black community. It has ravaged the indigenous community. It has ravaged communities of color, and racial disparities in healthcare also mean that, if you are someone of color and you don’t have the resources or anything, you’re going to wind up in a nursing home – that’s all there is to it.

How can these people, these politicians, how can they sleep at night? I don’t know. So many millions and millions and millions of people in this country will literally die if the Affordable Care Act was done away with. The Affordable Care Act, we know as ADAPT members, but a lot of people don’t realize that in the Affordable Care Act, there are the provisions for long-term services and supports that keep us people with disabilities in our own homes and not in some nursing institution, death camp. And because of COVID we know these nursing facilities are COVID traps!

So many people in these places are coming up with COVID and dying. That’s what happened to Michael Hickson. Michael Hickson was sent – he’s from Texas – he was sent to a nursing home where he caught COVID. And then the doctors refused to treat him because they said, he had no quality of life because of his disabilities. So, whoever, you listen, members of Congress, members of the Senate, fight for this. Fight for us.

I’m so happy that Congresswoman, that AOC went and stopped and spoke to the ADAPT folks out there in the rain doing that work. Thank you. Thank y’all. For out there doing that work, I can’t be out there with y’all now with my health and all that. Keep on, keep on fighting, keep on out here doing this work for those of us that can’t. Yeah.

Free our people!

Thank you.

NDY, National ADAPT, ADAPT of Texas and ASAN Join Amicus Brief In Tinslee Lewis Case

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On October 8, 2020, Not Dead Yet, National ADAPT, ADAPT of Texas and the Autistic Self Advocacy Network joined in a friend-of-the-court (“amicus”) brief filed by Texas attorney Michelle Hayes to support Tinslee Lewis and her mother’s case to maintain life support. The “strange bedfellows” amici groups include disability rights, religious and pro-life organizations.

Tinslee Lewis is a 20-month-old girl on life support at Cook Children’s Medical Center (“Cook”) in Fort Worth, Texas. Due to a heart defect, she is on a ventilator. Tinslee has been reported to be conscious and interactive when she is not under sedation. NDY wrote about Tinslee’s case, including video from a local television interview with her mother, here. Since 2019, Cook hospital has worked to withdraw Tinslee’s life support.

The lower court in the case issued a temporary injunction against Cook requiring life support to continue pending the results of a trial on the facts and relevant legal issues. The Court of Appeals for the Second District of Texas held the Texas futility law unconstitutional. Now Cook has petitioned the Supreme Court of Texas for review, seeking to overturn the Court of Appeals ruling and the injunction without a trial on the merits.

The “Amicus brief for Tinslee”, and previous court documents, are posted on the Medical Futility Blog here.

The opening argument in the Amicus Brief raises disability discrimination issues:

In a recent study, the National Council on Disability found that healthcare providers often misperceive disabled individuals to have a low quality of life, and this can result in discriminatory determinations that life-sustaining medical care is futile and should be withdrawn.1 The Council concluded that protections are needed to ensure (1) the patient’s wishes are followed; (2) life-sustaining medical care is not removed pending transfer; and (3) that in the absence of patient competency and an advanced directive, a neutral, unbiased, and independent decision maker is in place with a right to judicial appeal.2 . . .

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1 See National Council on Disability, Medical Futility and Disability Bias (Nov. 20, 2019), at *10. https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf (last accessed Oct. 7, 2020).
2 See id. at *42.

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The brief also explains how the Texas futility law violates constitutional due process rights.

When the decision to remove a person’s life-sustaining medical treatment is made, appropriate due process protections would include:

    • adequate notice of the hearing;
    • a high burden of proof, such as clear and convincing evidence, placed on the
      party advocating withdrawal of life-sustaining treatment;
    • the right to legal counsel;
    • the right to call and cross-examine witnesses;
    • a neutral decision maker;
    • a record of the proceedings;
    • and a right to appeal.

The Texas futile care law also appears to have been relevant in the death of Michael Hickson, a 46-year-old Black husband and father with a brain injury who was denied treatment for COVID-19. His doctor told his wife in a recorded conversation that his quality of life was too low.

Disability advocates must continue fighting these futility laws that grant legal immunity to medical providers that unilaterally withdraw life support from people with disabilities against our will or the healthcare decisions of our chosen surrogates.