NDY, DREDF, Disability & Patient Rights Groups Oppose Lawsuit To Expand Assisted Suicide Law

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For Immediate Release:
September 2, 2021

Disability, Patients’ Rights Groups Issue Joint Statement Opposing the Expansion of Assisted Suicide in Observance of Suicide Prevention Month

Berkeley, California – In observance of Suicide Prevention Month this September, disability and patients’ rights leaders from California and across the United States joined together in solidarity to voice clear, unequivocable opposition to a lawsuit which seeks to relax already weak safeguards which protect against bias and abuse in physician-assisted suicide.

Signatory organizations also advocated for the expansion of underfunded palliative and long-term options so that critically ill individuals could receive the comprehensive physical, emotional, social, religious and spiritual care needed to live among their families, loved ones and non-disabled peers, rather than prioritizing expedited demise of already at-risk individuals.

The joint declaration came just days after legal action was claiming laws requiring self-administration of lethal drugs discriminates against people with disabilities in California, where assisted suicide has been legal since June 2016.  Estimates suggest approximately 400 people die each year in the state by taking lethal physician-prescribed drugs, but no reliable accounting system is publicly available at present.

Statements against the pro-euthanasia lawsuit are universally opposed to this change in the existing statute, in part, because the expansion of physician-assisted suicide affirms an ableist bias and is inherently skewed against disabled and other already at-risk communities and, as such, should be soundly rejected.

Statements from participating organizations:

“Advocating for assisted suicide under the guise of equal access flies in the face of decades long attempts by disability communities to live, learn and earn alongside our non-disabled peers. Prioritizing “aid in dying” rather than providing disabled people with the means we need to live is backwards at best, and at worst, stands diametrically opposed to our most cherished values, goals, and policy objectives,” stressed Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund (DREDF). “Chronic healthcare disparities and inequity continue to be the norm rather than the exception among many ethnic, underserved, and poor communities who lack basic access to timely rehabilitative, therapeutic, urgent, palliative, hospice and other under supported health care options. This lawsuit, if successful, would not only set a dangerous precedent — it also puts the lives of already endangered disabled people at even greater risk.”

“This court case will only exacerbate the fact that people with life-threatening disabilities are further driven to despair as a result of fear of being forced into a nursing home or institution, fear of being a physical or financial burden on their families, lack of information about independent living options, and weariness from facing systemic barriers to getting their basic needs met,” reminded Reyma McCoy McDeid, MA (she/her), Executive Director of the National Council on Independent Living (NCIL). “In spite of almost two decades of experience with supposed ‘safeguards’ in the Netherlands, significant numbers of non-terminal people with disabilities have, nevertheless, either been coaxed into euthanasia or outright involuntarily euthanized.”

Upon learning of the litigation, Vincenzo Piscopo, President and CEO of United Spinal Association—a national organization of 58,000 members with spinal cord injuries and disorders (SCI/D) that has consistently opposed assisted suicide—felt that the commonly adopted concept of the ‘quality of life’ of people with disabilities by both the public and the medical establishment is discriminatory. “They often underrate the ability of severely disabled persons to live successful and fulfilling lives in our communities. Many individuals with spinal cord injuries feel depressed and/or suicidal after injury. Adequate healthcare, rehabilitation and integration into our communities improves outlook and quality of life.” Mr. Piscopo continued, “Quality of life cannot be judged, by third parties, on the basis of what one individual with disabilities thinks or says at a particular time. Treating depression and pain would be the medical community’s response to people without disabilities, and it is the appropriate response for our community.”

Diane Coleman, President and CEO of Not Dead Yet cautioned, “This terrible life-threatening lawsuit turns laws against disability discrimination upside down. As the data shows, people request assisted suicide because their disability related needs, such as qualified home care services, are not being met. Instead of meeting those needs, disabled people, whether ‘terminal’ or otherwise, are being offered a streamlined path to death. That’s ableism and agism, discrimination at its deadliest. It isn’t compassion, it’s contempt.”

“Any program, policy or approach that makes it easier to die rather than providing the supports, services or tools to live independently runs contrary to core tenets of disability civil rights,” warned Maria Town, President and CEO of the American Association of People with Disabilities. “AAPD supports and advocates for laws and policies that protect the rights and dignity of disabled people rather than reinforcing existing prejudices and mistaken negative assumptions about our lives, both individually and collectively as a community, constituency and culture. Advancing access to death rather than prioritizing the means to live would be a huge step backwards and must be categorically rejected.”

From Amber Smock the Director of Advocacy at Chicago’s Access Living: “This lawsuit only reinforces the harmful and false bias that it’s better to be dead than disabled, along with the idea that others can or should take action on behalf of disabled people. It completely fails to recognize the real risk people with physical disabilities too often face — the misuse of assisted suicide. Disabled people already find it challenging to get equal access to mental health supports. We need to be investing in disability competent counseling and supports, not bringing lawsuits that do nothing to address the issues disabled people face.”

Matt Vallière, Executive Director of Patients’ Rights Action Fund concluded, “After years of saying euthanasia takes the power away from patients, assisted suicide proponents are now advocating legalization of euthanasia by allowing medical professionals, family members and abusive caregivers to administer lethal drugs to kill people with disabilities.  The move in this case strips away the ‘safeguards’ they themselves put in place to ensure the protection of vulnerable people.  The current standard of ‘self-administration’ is a flimsy ‘safeguard’ to begin with because there are no third-party witnesses required to ensure it happens.  This lawsuit really begs some questions: are assisted suicide laws themselves inherently discriminatory by setting up a system in which most people get suicide prevention, but some people get suicide assistance?  Can you exclude some people from assisted suicide and have meaningful safeguards?  Will it happen without patient consent as it does in the Netherlands?  No one will ever know, because it all happens behind closed doors.”

Spokespersons from participating organizations are available for interviews both on the record and on background.  To arrange for an interview or for more information, please contact:

Lawrence Carter-Long
Communications Director, Disability Rights Education & Defense Fund
Email: LCarterLong@dredf.org
Matt Vallière
Executive Director, Patients Rights Action Fund
Email: matt@patientsrightsaction.org

Not Dead Yet Joins National Call To Repair Or Replace Recalled Breathing Devices

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Not Dead Yet, the ResistanceNot Dead Yet Joins National Call To Repair Or Replace Recalled Breathing Devices

[Rochester, NY, August 26, 2021] Today, Not Dead Yet joined in a letter from individuals who depend on recalled ventilators and other breathing devices manufactured by Philips Respironics, along with over two dozen disability organizations, demanding that Philips repair or replace the devices. The recall was announced in June, stating that the devices were found to release potentially harmful particles and gasses, but offering little information and no timeline for corrective action.

Not Dead Yet (NDY) is a national disability rights group that opposes public policies of assisted suicide and euthanasia, as well as the involuntary denial of life-sustaining medical treatment. NDY’s founder and CEO, Diane Coleman, is among the affected individuals. “When I see that many people only found out about the recall by word of mouth or social media, I feel lucky that my local respiratory provider called me. I love my life and have always been pro-active in protecting my health, but they still have no idea when my ventilator will be replaced. The more I learn, the more I’m scared about being harmed by every breath I’m taking,” said Coleman, quoted in a press release issued through the New York Law School and its Civil Rights and Disability Justice Clinic, which is working on behalf of the group.

The full text of the group’s press release follows.

Philips Device Users, Civil Rights and Disability Advocates Call For Immediate Repair and Replacement of Recalled Philips Respironics Devices 

New York, NY (August 26, 2021) – Philips device users, the Civil Rights and Disability Justice Clinic at New York Law School, and more than two dozen disability rights organizations and advocates, sent a letter to Philips Respironics today requesting immediate action to repair, replace, and offer guidance to medical professionals on recalled devices relied upon by many users for life-sustaining care.

On June 14, 2021, Philips Respironics issued a recall of thirteen models of ventilators, CPAP, and BiPAP machines. The recall advises that users immediately discontinue use of the affected machines due to the degradation of a foam contained inside the devices that can be inhaled or release certain chemicals that are potentially carcinogenic or have other adverse side effects. However, users who require the devices for life-sustaining care were advised to not cease use of them, and instead told to speak to their physicians, who have not been provided with adequate guidance from Philips Respironics.

Device users had to take it upon themselves to not only get word of the recall out starting in mid-June, but they have also had to organize to push Philips to take basic action.

“Disabled people are once again expected to come up with a contingency plan for ourselves. I am outraged that so little has been done by Philips to recognize, take ownership of, and communicate the urgency that this moment requires for folks like myself who need access to this equipment. This goes far beyond an issue of just replacing faulty medical supplies. Because when we contextualize it during this time of an airborne pandemic, a time of poor air quality in some areas of the country due to climate change, and a time when safe access to services for disabled people is already challenging we see the ways where the system has failed us, again. To leave disabled people without any adequate back-up or an effective course of action was a decision that Philips knew about, and although it is appalling it isn’t shocking to me. This is how ableism works,” Sandy Ho, disabled CPAP user, disability policy researcher and community-organizer.

The letter today demands that Philips immediately develop and implement a device repair and/or replacement process and timeline that prioritizes users who depend on their equipment for survival or that Philips provide so-affected users with comparable devices from other manufacturers free-of-cost. A copy of the letter is attached.

“As a long-term user of both the DreamStation and Trilogy 100, I am terrified for myself and millions impacted by the recall globally. I am an unwitting character in a real-life horror film,” said Alice Wong, Disability Visibility Project. Wong’s outreach to users via social media just one day after the recall was issued resulted in a groundswell of people learning that they were at risk.

Philips acknowledged that extreme heat and humidity exacerbate the degradation of the foam particles in the device. However, in the middle of the summer months and more than two months after the issuance of the recall, many users of Philips equipment have been left with their recalled devices in conditions of intense heat, humidity, and even wildfires that further jeopardize their equipment and health.

“People with disabilities have essentially been left to inhale potentially toxic air through their devices for an indeterminate period of time or to pay for temporary fixes that they are uncertain can protect them. This is not okay,” said Professor Britney Wilson, civil rights attorney and Director of the Civil Rights and Disability Justice Clinic at New York Law School. “We’re calling on Philips to develop, communicate, and execute a repair and replacement plan that prioritizes users who depend on their devices to live and to be transparent about what led to the recall, how Philips is monitoring complaints concerning potential health impacts, and what information about potential risks associated with the long-term continued use of their devices and how to mitigate them has been communicated to healthcare providers and professionals.”

“When I see that many people only found out about the recall by word of mouth or social media, I feel lucky that my local respiratory provider called me. I love my life and have always been pro-active in protecting my health, but they still have no idea when my ventilator will be replaced. The more I learn, the more I’m scared about being harmed by every breath I’m taking,” said Diane Coleman, President & CEO, Not Dead Yet.

Media Contact

New York Law School / communications@nyls.edu / 212-431-2872

Not Dead Yet Contact: Diane Coleman dcoleman@notdeadyet.org 708-420-0539

 

DREDF’s Marilyn Golden Files Testimony Opposing California Assisted Suicide Expansion Bill

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Marilyn Golden

California’s assisted suicide expansion bill, SB 380, was on the Assembly Appropriations Committee docket today, with written testimony to be submitted prior to the hearing. DREDF’s Senior Policy Analyst Marilyn Golden submitted the following testimony.

August 14, 2021

OPPOSE SB 380 (Eggman) – End of Life

 The Disability Rights Education & Defense Fund (DREDF) opposes SB 380, a bill that would expand assisted suicide in California.

DREDF, founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. We are based in the East Bay and have a governmental affairs office in Washington D.C. Pursuant to a decision in 1999 to oppose the legalization of assisted suicide and euthanasia, we have been active against such bills and initiatives in many states.

When the “End of Life Option Act” legalized assisted suicide in California, proponents including Senator Eggman pointed to patient protections such as a 15-day waiting or “cooling off” period, based on the clear medical reality shown in studies that patients who decide to hasten their death often change their minds. For example, the Lancet British medical journal found that almost a third changed their minds within 12 hours! And 60-70% in a month’s time.

The disability community is full of individuals who have been misdiagnosed as terminally ill, but gone on to live full lives after that initial scare. A bad day should not be a death sentence a few hours later!

This Act has extraordinarily little monitoring, data, and investigation of abuse—there’s not even a phone number to call if concerned family members or friends fear their loved one is being coerced. It’s almost as if the law is set up to avoid finding problems.

The annual statistical reports are very minimal for such an important public policy. One example is that assisted suicide laws in Oregon and Washington State require that these states at least make public doctor-reported data on why their patients chose to hasten their death. Might it have been the economic pressures so rampant in our broken, profit-driven health care system? But in California, there is no requirement to report such data on patient reasons. So, this important data is therefore missing from the California reports. We must ask, why?

That is only one example. California also doesn’t report statistics about referrals for psychological evaluations, unlike in other states. There is no data about what happened after ingestion—were there complications? All medical procedures have some complications, but the public is not informed about complications accompanying this important procedure in California. Yet complications have come to light in Oregon. Nevertheless, California is considering removing the End of Life Option Act sunset clause—without any in-depth examination of how the Act has functioned.

Assisted suicide is not about choice when people with disabilities lack access to sufficient medical care. Shouldn’t we be more concerned that poor communities, including our aging and disability communities, as well as Black, Latino, and indigenous communities, often lack even basic primary care, not to mention specialized care such as cancer care, palliative care, and hospice care? Should we not prioritize these before access to lethal drugs?

We urge you to OPPOSE SB 380 (Eggman) and
maintain important safeguards for consumers.

Not Dead Yet submitted a statement supporting this testimony and incorporating from Golden’s op-ed on the problems with the bill:

This rush to erode the safeguards included in the 2015 End of Life Option Act is dangerous public policy. There is simply no data or science to support removing them so soon.

Annual reports on the End of Life Option Act required by the State of California do not contain any data whatsoever detailing complications or patients’ reasons for requesting the lethal drugs. For the limited data that is provided, too much remains listed as “unknown.” Over the past year, due to the COVID pandemic, we have become sadly familiar with how important medical and scientific data are in making informed public policy decisions; especially those involving life and death.

With the benefit of hindsight, it appears that the protections proponents touted as safeguards were no more than a ruse to get the original law passed.

For example, the latest California annual report on the End of Life Option Act released in July 2020 reports that 10% of those requesting the lethal drugs had an “unknown” insurance coverage, and it was “unknown” whether 7% ever received information about available hospice or palliative care options.

In a March 2021 New York Times interview with Dr. Diane E. Wright, longtime Director of the Center to Advance Palliative Care at Mount Sinai Hospital, Dr. Wright noted, “All the heartfelt adherence to restrictions that are announced when you first get the public to vote in favor of this go up in smoke once the practice is validated.”

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The report from advocates who attended the hearing is that “SB 380 has been moved to the Suspense file. The Chair did not take any public comment on bills on suspense and requested all comments to be directed to the committee via writing.” That’s all we know for now.

Joan Cavanagh, Progressives Against Medical Assisted Suicide: Another Point of View

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Seven activists identifying as “Progressives Against Medical Assisted Suicide” presented an alternative viewpoint at a screening of “Prescription for Peace of Mind: An Option for the Terminally Ill” at the New Haven Free Public Library on Wednesday, August 11.

Five protesters with hats and face masks, one in a wheelchair, hold 3 signs in front of stone pillars at the entrance of a walkway toward a building with trees in the background.
Progressives Against Medical Assisted Suicide

The seven held signs reading “Suicide is Not a Medical Treatment” and “Medical Assisted Suicide threatens the elderly, the poor, the disabled, you.” They passed out leaflets* with nine reasons to oppose legislation allowing doctors to prescribe lethal drugs to those they define as terminally ill. Five went inside to raise their objections directly to the two filmmakers. The screening was sparsely attended.

Presented as part of the New Haven Documentary Film Series, the film makes no pretense of objectivity. In addition to the three individuals whose very sad stories are told, family members who have spoken in support of MAS [medically assisted suicide] are also interviewed at length. In a statement perhaps unintended to be so revealing, one family member, a nurse who also attended the screening, remarks that her reason for supporting the legislation is that the hospice care for her dying father was so inadequate and unhelpful.

The film also features Compassion and Choices Connecticut Field Director Tim Appleton and Rep. Jonathan Steinberg (D., Fairfield), a long-time prime mover of MAS legislation in Connecticut. The voices of disability justice and other activists who testify before our state legislature annually and work continually to educate about the dangers of MAS are nowhere to be heard.

The five challenged this glaring and deliberate omission and discussed the dangers of MAS in detail, recounting painful personal stories of unyielding institutional pressure by the medical system to end life-sustaining treatment for their own loved ones. They cited cost-cutting imperatives by hospitals and insurance companies combined with prejudice against the disabled, the elderly, and the poor as twin threats which can only be further enabled by this legislation. In the words of activist Elaine Kolb, Medical Assisted Suicide is not a “slippery slope” but a juggernaut.

The most recent Assisted Suicide bill in Connecticut was voted out of the Public Health Committee for the first time in 2021, then moved to the Judiciary Committee which chose not to bring it to a vote. Opponents expect another bill to be brought forward next year and are getting prepared.
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SAVE THE DATE: Saturday, October 2, 2021. “NOT DEAD YET” community speak-out and singalong with invited speakers to be announced. New Haven Free Public Library Community Program Room, 2-4 pm. Fully accessible venue. Masks required.
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* Flyer:

PRESCRIPTION FOR WHOSE PEACE OF MIND?

Medical Assisted Suicide is fraught with peril for the most vulnerable among us- the elderly, disabled, and poor, who are already viewed by the medical system and the insurance companies as too costly to treat and thus expendable. There are no imaginable “safeguards” that can change this reality. To legalize this practice would only increase the discrimination and trauma many of us experience in our ongoing struggle for decent health care for ourselves, our families and our loved ones, a struggle which has already cost the lives of far too many.

We ask you to think critically as you view the film, “Prescription for Peace of Mind: An Option for the Terminally Ill.”

Nine Reasons to Oppose Medical Assisted Suicide

  1. In our cost-cutting health care system, it encourages the rationing of health care for the most “expensive” patients: the elderly, disabled, seriously ill and poor.
  2. It subjects the vulnerable to potential overt or covert abuse that can never be adequately monitored.
  3. It encourages a rush to judgement as to how “terminal illness” is defined.
  4. It promotes the idea of extreme individualism and self-sufficiency, the notion that being vulnerable and needing care is somehow “undignified,” the idea that we live in a vacuum with no responsibility for or to each other.
  5. It erodes patient confidence in our health care providers, causing justified fear that they will advocate for the suicide option in difficult cases.
  6. It requires doctors to lie about the facts of a patient’s death, citing the illness as the cause, not the ingestion of the lethal medication.
  7. It does not necessarily guarantee a “peaceful” or immediate end of life.
  8. It promotes suicide as a desirable option at a time where suicide among the young has become an epidemic and suicide prevention is public policy.
  9. It opens the door to involuntary euthanasia of those deemed “defective,” such as people with advanced dementia or severe disability that renders them unable to communicate.

For further discussion of the reasons to oppose medical assisted suicide, please go to www.notdeadyet.org and http://dredf.org/public-policy/assisted suicide.

The advocates of Medical Assisted Suicide (or “Aid in Dying,” as they call it) legislation in Connecticut and elsewhere have tried to make it appear that the only opposition to it comes from religious conservatives. This is untrue. Social progressives are increasingly coming to understand just how dangerous it is and to recognize it as bad public policy.  

To join the growing local email list for Progressives Against Medical Assisted Suicide, please contact joan.cavanagh@gmail.com, or add your name to the sign-up sheet today.

Medical assisted suicide threatens the poor, the elderly, the disabled and you.

Progressives Against Medical Assisted Suicide

08 11 2021

A Disabled Researcher Doing Research on Disability, Media, and Internalized Stigma!

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A doctoral student from the California School of Professional Psychology is conducting research to learn more about emotional response, disability and media, and experienced internal stigma among disabled people. If you are an adult with a mobility disability between the ages of 18 to 65, have had a disability for at least 2 years, and live in the US, you are invited to participate in this study. People who complete the online survey have the chance to enter a raffle to win 1 $25 or 1 $100 AMAZON GIFT CARD!!!!!! To learn more about the study or participate in it please follow this link: https://tinyurl.com/disabilitydissertation. Please email disabilityandstigma@gmail.com with any questions.

Approved by Alliant International University Institutional Review Board