Media Advisory: New York Disability Rights Group Opposes NY Assisted Suicide Bill

Our News & Commentary Blog

[Editor’s Note:  This media advisory is also available through PRWeb in PDF format here.]

A bill to legalize assisted suicide has been introduced in the NYS Assembly (A2129), and will be introduced Monday, Feb. 9 in the Senate by Brad Hoylman and Diane Savino, according to the assisted suicide advocacy group, Compassion and Choices. Not Dead Yet is a national disability group based in New York which opposes assisted suicide legislation, and the group’s leaders are available for interviews.

“Every major national disability organization that has taken a position on assisted suicide opposes legalizing it,” says Diane Coleman, president of Not Dead Yet, a national disability group based in Rochester, New York. “This includes ADAPT, the National Council on Independent Living, the Disability Rights Education & Defense Fund (DREDF), among others.”

As DREDF’s Marilyn Golden said, “If this bill passes, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.”

The NY proposal is based on the law that was passed by public referendum in Oregon. While proponents claim that Oregon is a successful experiment, the evidence indicates otherwise. “The Oregon assisted suicide reports show that the top five reasons doctors report for giving lethal prescriptions are related to disability, not terminal status,” said Coleman.

For opinion pieces from disability advocates published by CNN, the New Jersey Star Ledger, Counterpunch and other outlets, go to the op-ed links on the Not Dead Yet website.

The disability rights opposition to legalizing assisted suicide is an essential part of the discussion which should be included in coverage of the issue. Contact information for spokespersons available for interviews are listed below:

Diane Coleman
President/CEO
Not Dead Yet
Rochester, NY
dcoleman(at)notdeadyet(dot)org
(708) 420-0539

Stephen Drake
Research Analyst
Not Dead Yet
Rochester, NY
sdrake(at)notdeadyet(dot)org
585-353-7438

John B. Kelly
Director
Second Thoughts
Boston, MA
(617) 536-5140

Marilyn Golden
Senior Policy Analyst
Disability Rights Education & Defense Fund (DREDF)
Berkeley, CA
(510) 703-0696

NDY Introduces Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide

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With assisted suicide bills pending in many states, disability rights advocates are needed to help oppose them.  Not Dead Yet Colorado just played a pivotal role in defeating an assisted suicide bill in that state, but bills are pending or expected in California, New York, Pennsylvania, Iowa, Connecticut, Massachusetts, New Jersey, the District of Columbia and more.

Many of the national disability rights groups that oppose assisted suicide bills have chapters, affiliates and members in these states, so Not Dead Yet has developed a Toolkit to assist them in advocating successfully.  NDY’s Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide has embedded links to excellent resources on the assisted suicide issue, many of them provided by the Disability Rights Education & Defense Fund, including a very important legislative primer entitled “A Progressive Case Against Assisted Suicide Laws.”

The seven sections of the NDY Toolkit cover:

  1. Why disability advocacy groups oppose legalizing assisted suicide
  2. Educating and organizing disability opposition
  3. Meeting with legislators and policy leaders
  4. Testifying at hearings
  5. Working with the media
  6. Conducting direct actions – leafleting, rallying
  7. Working in coalition

Advocacy organizations may also like to include an article on the issue in organizational newsletters:  Why Do Disability Rights Organizations Oppose Assisted Suicide Laws?

We encourage advocates to contact Diane Coleman or John Kelly at NDY or Marilyn Golden at DREDF for information and assistance in using the NDY Toolkit and working to oppose the dangers inherent in assisted suicide laws.

Georgetown Voice – “Death Without Dignity: The Dangers of Assisted Suicide” by Lydia Brown

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Disability rights activists, scholars and advocates are familiar with Lydia Brown, whose writings, presentations, advocacy and activism have had a big impact in and outside of the disability community over the past few years.

Today, the college newspaper Georgetown Voice published a response and counter to an editorial that endorsed a proposal that would legalize assisted suicide in Washington, DC. That response is reprinted below, with permission of the author and newspaper. We’ve also included the brief description of Lydia’s work included that accompanies the original article. The original article can be found at this link.

Death without Dignity: The Dangers of Assisted Suicide

Two weeks ago, the Voice published an editorial supporting a D.C. proposal to legalize physician-assisted suicide. Better known as “dying with dignity,” physician-assisted suicide has  been popularized by the media through their coverage of a photogenic young, white, class-privileged woman named Brittany Maynard. Mass media would have you believe that opponents are mostly anti-choice, right-wing, religious extremists callous to incredibly heart-wrenching stories like Maynard’s.

Yet as a disabled activist working within a framework of radical, intersectional social justice, I am deeply concerned about issues of choice, self-determination, and bodily autonomy. This is precisely why I am ardently opposed to the legalization of physician-assisted suicide.

Instead of promoting choice, legalization of physician-assisted suicide will limit choices. Legalizing physician-assisted suicide incentivizes medical insurers to restrict or outright deny coverage of more expensive life-saving treatment. If people with limited financial resources are denied other treatment options by their insurers, they can be functionally coerced into choosing assisted death. With greater focus on austerity and high medical costs incurred toward the end of life, the cheap option of assisted suicide ($100-$300) will unavoidably distort future treatment decisions.

Georgetown’s own Center for Clinical Bioethics published a study in 1998 that found a strong connection between pressure to cut costs and willingness to prescribe lethal drugs if legalized. The study warns that there must be “a sobering degree of caution in legalizing [assisted suicide] in a medical care environment that is characterized by increasing pressure on physicians to control the cost of care.”

The D.C. bill is closely based on Oregon legislation, which was drafted by a former health maintenance organization executive and passed in 1997. It is thus critical to examine the Oregon law and its implementation to understand the dangerous nature of the D.C. legislation.

Neither the Oregon law nor the D.C. bill provide any means of detecting violations of the safeguards. Oregon’s annual statistical reports repeatedly state, “we cannot determine whether assisted suicide is being practiced outside the framework of the law.” Oregon does not interview doctors who refused to provide the lethal drugs to patients who later received them from other physicians, even though the initial caregivers may have determined that they were ineligible. The law also does not require autopsies, leaving no way to confirm a terminal illness afterward.

Oregon’s research has failed to uncover numerous cases inconsistent with the stated purpose of the law that only came to public attention through media coverage. For example, Barbara Wagner’s insurance provider sent a letter denying coverage for her chemo prescription but offering to cover assisted suicide instead. The law further fails to prevent a caregiver or heir from suggesting assisted suicide, witnessing the consent form, obtaining the lethal drugs, and administering them.

Most importantly, no supposed safeguard can protect people from choosing to die based on a wrong prognosis. Doctors admit that it is impossible to predict with certainty when someone will die. In a letter published in The Boston Globe, Jeanette Hall described how she originally supported Oregon’s law. After receiving a terminal diagnosis, she requested the lethal drugs. Eleven years later, Hall is “so happy to be alive” and has publicly opposed further legalization.

Furthermore, people with terminal illnesses in all 50 states may receive palliative sedation, where they are sedated and pain relieved for a peaceful death. Patients everywhere also have the right to stop artificial nutrition and hydration. These currently legal solutions do not implicate the serious ethical and legal dilemmas that the prospect of legalizing assisted suicide does. While there are widespread, dangerous trends of patient neglect and prolonged suffering due to ineffective care and functional institutionalization, the solution is not assisted suicide, but improvements to the medical profession.

As a disabled person, I am concerned by the rampant ableism in physician-assisted suicide implementation. Many disabled people live with severe, chronic pain, multiple co-occurring physical, cognitive, and psychiatric conditions, and repeated and incorrect prognoses of early deaths. Our world is dominated by public discourse that considers disabled lives inherently defective, burdensome, suffering, and not worth living.

It is not hyperbolic to imagine that talk of legalizing assisted suicide for terminally ill patients could be expanded to include people who simply have lifelong disabilities. Many non-disabled people believe that it is better to be dead than disabled. Mass media and public opinion lauds a disabled person’s “brave,” “heroic,” or “inspirational” decision to commit suicide though most would rush to find suicide prevention services for non-disabled people. Current research further suggests that pain is rarely the actual reason that people choose assisted suicide. Instead, most people do so because they are afraid of becoming disabled and thus burdens on their families. This insidious form of ableism will have deadly consequences if assisted suicide is legalized.

No amount of safeguards are sufficient to prevent exploitation and abuse of vulnerable people with disabilities, as well as elders. Furthermore, in the presence of existing options for end-of-life care, it is disingenuous at best to suggest that those who have terminal illnesses have no other option. I am disturbed that many otherwise progressive people concerned with social justice have chosen to support a dangerous, discriminatory bill that in effect profits large corporations and unscrupulous relatives of sick and disabled people. There is no real justice or choice in assisted suicide.

About Lydia Brown

Lydia Brown is a queer and disabled activist and writer whose work focuses on violence against multiply-marginalized disabled people. Lydia is president and co-founder of the Washington Metro Disabled Students Collective and co-president of TASH New England, while also serving on the Board of Directors of the Autism Women’s Network and the Massachusetts Developmental Disabilities Council. Lydia works as a policy analyst at the Autistic Self Advocacy Network. Additionally, Lydia has served two terms as Undersecretary for Disability Affairs with the Georgetown University Students Association. Previously, Lydia was the 2012 Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. In 2013, Lydia was honored by the White House as a Champion of Change for disability rights. Most recently, Lydia received the Washington Peace Center’s Empowering the Future Youth Activist Award for 2014. Lydia’s work has been published in Criptiques, Torture in Healthcare Settings, Tikkun, Black Girl Dangerous, hardboiled magazine, and The Washington Post.

 

NDY Press Release: Disability Activists from Not Dead Yet and Other Colorado Organizations to Testify in Opposition to Colorado Assisted Suicide Bill

Our News & Commentary Blog

[Editor’s Note:  A PRWeb version of this release in PDF format, with photo, is available here.]

Disability rights activists from across the state will be testifying Friday before the Colorado legislature’s House Committee on Public Health Care and Human Services in opposition to HB-1135, which would legalize assisted suicide in the state. The group called Not Dead Yet opposes assisted suicide as a deadly form of discrimination against old, ill and disabled people. The hearing begins upon adjournment of the House in Room 271 at the State Capitol.

“Disabled lives are devalued by medical professionals and society at large. Mistakes will be made, and unnecessary deaths will occur,” said Carrie Ann Lucas of Not Dead Yet Colorado. “Many people with disabilities have been incorrectly diagnosed as terminally ill, when in fact, they have a long fruitful life in front of them.”

According to Oregon’s assisted suicide reports, 97.6% of program suicides in Oregon have been white, in a state 22% nonwhite. “Assisted suicide proponents are also overwhelmingly white,” said Anita Cameron, a longtime disability activist, and Not Dead Yet board member. “The Pew Research Center reported in a detailed 2013 study that, while whites support assisted suicide 53%-44%, black and Latino voters register 65% opposition.”

“Despite what the proponents claim, people do not generally ask to end their lives due to unrelenting pain,” said Cameron. “The suicide factors identified in the Oregon assisted suicide reports, perceived loss of autonomy, loss of dignity, and decreasing ability to be active are completely disability issues,” she said.

Carrie Ann Lucas uses a motorized wheelchair and employs personal care attendants to assist her in activities of daily living. “Why do some people equate needing help with basic bodily functions to a loss of dignity?” Lucas said. “There is something wrong with society if people would rather die of embarrassment than utilize assistance.”

“In a state with nearly 11,000 reports of elder abuse a year, it is appalling that this bill does not protect people from being pressured to end their lives at the onset of any condition that doctors perceive to be terminal within 6 months,” said Josh Winkler, a Colorado Cross-Disability Coalition board member. “This bill allows the introduction of poisonous drugs into abusive situations, and then does not even require an independent, disinterested witness be present at the death.”

Windsor resident Robin Stephens, who will be submitting written testimony said, “I have been at the bedside of a disabled woman with a spinal cord injury. Doctors so devalued her life that they encouraged her to disconnect her ventilator. She went on to live a rich life. Now we want doctors without any psychiatric training to determine if a disabled person is making a rational decision to end their life.”

“Colorado’s suicide rate is among the highest in the nation,” said Cameron. “This bill will promote suicide to one class of disabled citizens, rather than provide suicide prevention. That is discrimination.”

Lucas pointed out, “Everyone has the right to refuse or stop further medical treatment. People also have the right to receive palliative sedation to alleviate pain. Assisted suicide is simply not necessary.”

Diane Coleman’s Letter to Some New Jersey Senate Democrats

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[Editor’s Note:  The New Jersey assisted suicide bill could come up for a floor vote as early as this week.  This letter was emailed under the subject line, “Why thoughtful Democrats should oppose assisted suicide bill in NJ.”]

Dear Senators:

I am a lifelong Democrat, the CEO of a national disability organization, and I am also a severely disabled woman, writing to urge you to vote against New Jersey’s assisted suicide bill (S382).  I’ve spent a lifetime advocating for the rights of disabled people, young and old, to control our own lives and not have our choices dictated by doctors and other professionals.  So you might wonder why I oppose a bill that is widely portrayed as giving people choice and control over their own death.

But who actually has choice and control under assisted suicide laws?  Anyone could ask their doctor for assisted suicide, but the law gives the authority to doctors to determine who is eligible.  Doctors make the determination that a person is terminally ill and likely to die in six months, and that the request for assisted suicide is voluntary and informed.  The advertised “safeguards” in assisted suicide bills are entirely in the hands of doctors, from the diagnosis, prognosis, disclosures, request form, decision whether to refer for psychological assessment, prescription and report after death.

Who are the doctors who are giving lethal prescriptions?  The public image is that one’s own doctor, someone who knows you and has taken care of you throughout your illness, will be the one who assists your suicide.  But in Oregon, the majority of assisted suicides involve a doctor referred by Compassion and Choices (C&C).  [See references under “Doctor Shopping” section of article at http://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/#marker45]   The median doctor-patient relationship is 13 weeks.  The state does not interview doctors who said “no” to the person’s request, so we don’t know why so many people had to go “shopping” at C&C.

The prescribing doctors also fill out a final report after the death, among other things stating the reasons for the request for assisted suicide.  Among the top five reasons given are feelings of being a “burden on others” (49% in 2013) or feel a “loss of autonomy” (93%) or “loss of dignity” (73%).  These are all too familiar disability issues.  Yet the law does not even require disclosures about consumer controlled home care options to address feelings of loss of autonomy or being a burden, much less require that those services be provided.  As someone who uses consumer controlled home care, I know how important it is.  When I hear that feelings of being a burden are someone’s concern, assisted suicide sounds more like a “duty to die” than a “choice to die.”

Still, you might say, didn’t the person initiate the request for assisted suicide?  Didn’t they have to self-administer the lethal dose?

I understand that the media has been flooded with images of Brittany Maynard, who held the lethal drugs in her hand, and appeared to be in full control with a loving family supporting her choice to die in the bedroom we saw on TV that she shared with her husband.

But most people who have been reported to use assisted suicide in Oregon do not resemble Ms. Maynard.  Most are age 65-84, in a society where one in ten elders are abused according to federal figures [http://www.healthline.com/health-news/senior-elder-abuse-more-common-than-you-think-012714].  The abusers are usually family members.  About half the people reported to use assisted suicide in Oregon did not have a health provider present at the time of death.  With no independent witness required, there is no evidence that they self-administered the lethal drugs, or even that they consented at the time of death.  These bills have to be considered in light of the sad reality that not all seriously ill people have loving family.  Assisted suicide laws grant blanket immunity and effectively foreclose investigation of wrongdoing.  As one elder law attorney, Margaret Dore, put it, they are a “recipe for abuse.”

Finally, as a person who has been disabled all of my life, I’ve learned that some of the health care that I’ve needed, things that would have helped me maintain more physical function longer or reduced the help I needed from others, will not be covered by the available forms of insurance, because it won’t cure me and it “costs too much”.  The idea of mixing a cost-cutting “treatment” such as assisted suicide into a broken, cost-conscious health care system that’s poorly designed to meet dying patient’s needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill.

Assisted suicide ultimately affects everyone’s health care. In Oregon, where assisted suicide is legal, in 2008 cancer patient Barbara Wagner was prescribed a chemotherapy treatment by her doctor, but Oregon’s state-run health plan sent a letter which denied coverage of this chemo, yet offered to cover other “treatments,” including assisted suicide.  The same scenario happened to another Oregon resident, Randy Stroup. The Oregon assisted suicide reports tell us that over 95% of those who supposedly received lethal prescriptions in Oregon had insurance, but how many got a denial like the ones sent to Wagner and Stroup?  When assisted suicide is encouraged, it becomes a covered “treatment” and ultimately removes choices from patients.

When you look at assisted suicide based on one individual, it often looks acceptable. But when you examine how legalization affects the vast majority of us, the dangers to the many far outweigh any alleged benefits to a few.  Please vote “No” on S382.