Surprise Assisted Suicide Committee Vote Scheduled in NY; NDY Letter

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I know I shouldn’t be surprised anymore when pro-assisted suicide advocates convince legislators to spring a surprise committee hearing or vote on us. On a worldwide basis, the assisted suicide movement has declared the disability community to be their enemy #1. We have first hand experience with economic oppression, societal devaluation and various forms of abuse that make these bills so dangerous. But our disabilities also make it harder to respond to a last minute announcement, so we see this “Friday afternoon surprise” strategy used all too often.

The New York bill that’s scheduled for a vote Monday is Assembly bill A.10059.  The Assembly Health Committee needs to hear from opponents, especially NY residents. Below is the NDY letter that I just sent to the Committee members.

Not Dead Yet, the Resistance

May 20, 2016

Dear Assembly Health Committee Members:

I am writing on behalf of Not Dead Yet, a national disability organization with members in New York, to urge you to vote against the New York assisted suicide bill, A.10059.

It’s frustrating to see the assisted suicide issue portrayed as a progressive social cause. By the time disability rights activists entered the public debate on the issue over 20 years ago, well-funded assisted suicide proponents had already framed the issue for the media. In 1996, urged by friends and colleagues with whom I had struggled to be heard on this issue, I founded Not Dead Yet. We’re a national, grassroots disability group with activists in most U.S. states, including New York, who oppose legalization of assisted suicide. We also promote policies that seek to ensure that the withholding and withdrawal of life sustaining healthcare is truly informed and voluntary, not the result of devaluation of the lives of elderly, ill and disabled people.

Initially, Not Dead Yet’s opponents told the media that we should be dismissed as mere “puppets” of the religious right. As our voices grew and that strategy worked less and less, assisted suicide advocates still said that we should be dismissed as having unreasonable fears. But the reality is that we live on the front lines of the health care system, with long term health issues that give us a better informed perspective on the weaknesses of that system and the ways that it too often fails to meet its stated goals.

On behalf of Not Dead Yet, and for the sake of all across this nation who may be impacted by this dangerous public policy in a state as important as New York, I’m writing to urge you to oppose A.10059, the assisted suicide bill.

Many of us have 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 we 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 allows a third party to speak for the patient if they are familiar with their manner of communicating, especially endangering persons with stroke-related or other speech impairments. And in all cases, the bill actually 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 reference citations under “Doctor Shopping” section of article at http://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/#marker45]   The median duration of the doctor-patient relationship is 12 weeks according to the latest Oregon state report. 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 doctor shopping at C&C.

The prescribing doctor’s 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” (41%) or feeling a “loss of autonomy” (92%) or “loss of dignity” (78%).  These are not about pain from a terminal disease, but are psychological and social issues that cry out for meaningful supports and genuine care.  Yet the assisted suicide law does not even require disclosures about consumer controlled home care options to address feelings of loss of autonomy or feelings of being a burden on family, much less require that those services be provided.

The bill specifically provides that depression is not a barrier to getting a lethal prescription. All that is required is that the depression is not viewed by the prescribing doctor as negating the person’s capacity, a subjective and speculative assessment at best. Even if the doctor refers the patient for assessment, psychiatrists and psychologists are not immune from prevailing social biases against people whose illnesses make them dependent on others for basic physical care. In some cases, they are just as likely as anyone to say, “If I were in your shoes, I might want to die,” and render an opinion that treatment for depression is not necessary, paving the way for a lethal solution.

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

Most people who have been reported to use assisted suicide in Oregon are ages 65-84, in a society where one in ten elders are abused [http://www.nejm.org/doi/full/10.1056/NEJMra1404688].  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. In fact, that is their primary purpose and function.

Moreover, as a person who has been disabled all of my life, I’ve learned that some of the health care that I’ve needed will not be covered by the available forms of insurance, because it won’t cure me and it “costs too much”, things that would have helped me maintain more physical function longer or reduced the help I needed from family. This is a common experience in the disability community. The idea of mixing a cost-cutting “treatment” such as assisted suicide into a cost-conscious health care system that’s poorly designed to meet a seriously ill 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.  When push comes to shove over the health care needs of a disabled New York resident, whose corner will the doctor be in?  These realities undermine the image of “choice” that is being sold by assisted suicide advocates.

Finally, although I’ve been disabled all my life, the majority of people with disabilities acquire their disabilities through traumatic injury or a medical event or illness, such as a stroke or multiple sclerosis. The practical losses associated with acquiring a disability are multiplied exponentially by the crushing social oppression and internalized stigma of disability. In the early and uncertain phase of a disabling event, many of our activists, friends and colleagues, have been viewed as potentially terminal. The impact of a public policy of assisted suicide that, like Oregon, accepts psycho-social reactions to disability as justification for medically assisted suicide, poses perhaps the gravest threat to the tens of thousands of persons who are newly disabled each year.

There are many more reasons that an immunity statute for assisted suicide is bad public policy, too many to detail in one letter. But in an aging society, the dangers of a government approved program of assisted suicide facilitated by a cost-conscious health care system should be obvious. We hope that when you examine how this assisted suicide bill affects the vast majority of people, you will see that the dangers to the many far outweigh any alleged benefits to a few. Please vote no on A.10059.

Sincerely,

Diane Coleman, JD

President/CEO

 

New York NDY Activists Occupied Pro-Assisted Suicide Press Conference

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On Tuesday, May 10th, two van loads of disability rights activists from the Center for Disability Rights in Rochester, NY joined with center for independent living advocates from across the state to oppose bills that would legalize assisted suicide.

The activists began by occupying a pro-assisted suicide press conference room, wearing hot pink tshirts and signs that could not be ignored, as reported by NY State of Politics in the following excerpt:

Still, the press conference on Tuesday on the third floor of the Capitol outside of the Senate chambers was attended by opponents of the legislation. Clad in neon pink t-shirts from a coalition of disability rights groups called Not Dead Yet, critics of aid-in-dying policies say it could lead to the cheaper alternative of ending the life of a vulnerable patient rather than caring for them.

“The bill doesn’t account for that,” said Todd Vaarwerk, a Buffalo resident. “The bill says OK, you can affirmatively do this. We believe people with disabilities will be the primary people affected by this legislation and we’ve got years of evidence to support that.”

The activists also delivered their message outside legislative chambers, as shown in photos.

Albany 5-10-16 Not Dead Yet activists wearing pink NDY tshirts & holding pink NDY banner
Albany 5-10-16 Not Dead Yet activists wearing pink NDY tshirts & holding pink NDY banner
African American wheelchair user in pink NDY tshirt holding yellow poster saying "World's Cheapest Health Care" with a poison bottle depicted.
African American wheelchair user in pink NDY tshirt holding yellow poster saying “World’s Cheapest Health Care” with a poison bottle depicted.

And a local television station in Rochester followed up by interviewing CDR’s Director of Advocacy, Stephanie Woodward, on video for broadcast on May 11.

Victory in New York Appellate Division!

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A clear and welcome ruling came down Tuesday, May 3rd, from the NY Appellate Division in an assisted suicide case in which NDY filed a friend-of-the-court brief joined by ten other national and state disability organizations. The Court found no constitutional right to assisted suicide. Below is an excerpt from the 36-page decision:

[P]laintiffs rely on two papers that purport to offer empirical evidence that Oregon’s Death with Dignity Act, now in effect for over 20 years, has not invited the fears articulated by people opposed to aid-in-dying, such as an adverse impact on vulnerable populations, and the difficulty in distinguishing whether a wish to end one’s life is driven by a desire to control one’s death, clinical depression, or something else. However, even were a finder of fact to determine that aid-in-dying is “workable,” the issue before us transcends mere practical concerns. As the Supreme Court stated in Glucksberg, a state’s interest in preserving human life “is symbolic and aspirational as well as practical” (521 US at 729), favorably quoting the New York State Task Force, which observed:

“‘While suicide is no longer prohibited or penalized, the ban against assisted suicide and euthanasia shores up the notion of limits in human relationships. It reflects the gravity with which we view the decision to take one’s own life or the life of another, and our reluctance to encourage or promote these decisions.’ New York Task Force 131-132” (id.).

. . . . We find that, even giving plaintiffs the benefit of every reasonable inference, they have not presented sufficient allegations to suggest that the Penal Law has an implicit carve-out for aid-in-dying, or that, notwithstanding the precedents on the matter, the constitutionality of aid-in-dying is ripe for judicial reconsideration.

The issue before us unquestionably presents a host of legitimate concerns on both sides of the debate. As discussed above, plaintiffs present some compelling reasons for making aid- in-dying a legitimate option for those suffering from terminal illness. At the same time, the New York State Task Force on Life and the Law2 in 1994 “unanimously recommend[ed] that New York laws prohibiting assisted suicide and euthanasia should not be changed” (see Task Force, When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context [May 1994]). The Task Force based its view on the risks that could be presented to the elderly, poor, socially disadvantaged, and those without access to good medical care; and the role of treatable symptoms such as pain and depression in creating a desire for lethal medications. It also noted that most doctors lack a sufficiently close relationship to their patients to appropriately evaluate a request for help in ending life, and expressed the concern that it could open the door to euthanasia of those incapable of giving consent. We are not persuaded from the record before us that, even though society’s viewpoints on a host of social issues have changed over the last 20 years, aid-in-dying is an issue where a legitimate consensus has formed.

Steve Gold’s Letter Published in NY Times, & One by Diane Coleman in Des Moines Register

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Steve Gold, who has long served as a disability rights attorney for both ADAPT and NDY, just had his letter published in the New York Times. It’s the second letter in a group responding to a recent pro-assisted suicide opinion by the NYT editorial board. Here’s Steve’s excellent letter:

To the Editor:

You equate the Canadian physician-assisted suicide proposal with the Oregon, Washington State and Vermont laws. The differences show how far down the assisted-suicide slippery slope we have gone.

First, Canada does not require a diagnosis of a terminal illness or condition, but only suffering that the patient finds “intolerable.” This certainly takes the physician off the hook. A spurned young lover thinks that life is over. Do we really want society to assist him to end his life?

Second, Canada does not require a physician to predict death within six months, but only that death is “reasonably foreseeable.” As subjective as the requirement in American states with aid in dying laws that death be expected within six months, Canada loosens it much more. Let’s hope that the assisting physician is prescient.

Third, there is no mandate for a physician to require treatment or palliative care. What’s next in this slope?

STEPHEN F. GOLD

Philadelphia

The writer is a disability rights lawyer.

In addition, here’s my recent letter which appeared in the Des Moines Register on April 24th. The article to which my letter responds briefly downplays and misrepresents the disability opposition to legalizing assisted suicide. Here’s my letter:

There are some misleading statements and omissions in the article “Sides deepen in Iowa’s death with dignity debate” [April 17]. Contrary to the article, every major national disability organization that has taken a position on the issue opposes legalizing assisted suicide. The reference to the Disability Rights Legal Center does not refute this fact. DRLC is now run by Kathryn Tucker, former in-house attorney for Compassion and Choices, the assisted suicide lobby group, for over 15 years. DRLC’s primary claim to being “national” is two assisted suicide lawsuits she has led in New Mexico and New York. For a listing of the legitimate national disability organizations that oppose legalizing assisted suicide, see http://notdeadyet.org/disability-groups-opposed-to-assisted-suicide-laws.

Why are they opposed? This is not about people’s option to commit suicide, which is not illegal. This is about how the health care system upon which we all depend responds to a person who says they want society’s agreement with their suicide and the means to do it. We are worried about health care cost-cutting pressures. Assisted suicide by doctors is a deadly mix in a profit-driven health care system.

We are also worried about putting lethal drugs in the home of a seriously ill person in a society where one in 10 elders are abused, mostly by family. The claim that there are “safeguards” doesn’t make it so. Where assisted suicide is legal, an heir (someone who stands to inherit from the patient) or abusive caregiver may steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug — no witnesses are required at the death, so who would know? For examples of abuses in states where it’s legal, see https://dredf.org/wp-content/uploads/2012/08/revised-OR-WA-abuses.pdf.

[Somehow, I was mis-identified as being from Rochester, Nebraska, but I’m still in NY!]

NDY Celebrating 20 Years in the Fight for Our Lives

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Not Dead Yet, the Resistance

Dear Disability Rights Supporter:

Twenty years ago, on April 27th, at a disability rights gathering in Dallas, Bob Kafka, one of the leaders of ADAPT, said to me, “I’ve got a name for your group.” For years, ADAPT had been supportive of disability advocacy to challenge the assisted suicide movement and other deadly forms of medical discrimination. With the increasing popularity of “Dr. Death” Jack Kevorkian, whose body count was mainly people with disabilities who were not terminally ill, there had been growing talk of a street action group like ADAPT to address this critical threat to our lives. So, from a running gag in the movie Monty Python and the Holy Grail, Bob suggested “Not Dead Yet.” On that day, as over 40 disability rights leaders from across the country signed onto Congressional Subcommittee testimony co-authored by Carol Gill and myself, Not Dead Yet (NDY) began.

The struggle against assisted suicide was about to take a dramatic turn. On June 21, 1996, NDY activists held our first direct action, picketing outside the Michigan cottage where Kevorkian was known to stay. The AP newswire carried a photo of the protest, the first media notice of our opposition. Three years later, when Jack Kevorkian was finally back in a Michigan courtroom, on trial for one of his self-confessed assisted killings, disabled activists appeared for the first time to call for the equal protection of the law, to demand that the court and jury “Jail Jack,” and to declare before the court and the public at large that we were “Not Dead Yet.”

The presence of disabled activists at this fifth Kevorkian trial finally led to a murder conviction, and announced to the world the movement of disabled people against the legalization of assisted suicide and euthanasia.

Supported by a 1997 position statement by the National Council on Disability, a Resolution adopted by the membership of the National Council on Independent Living, and positions taken by many major disability rights groups, Not Dead Yet continued the struggle against assisted suicide, euthanasia, and other discriminatory ending-of-life practices into the new millennium. According to the Patients’ Rights Council, more than 175 assisted suicide legislative proposals in more than 35 states were defeated between 1994 and 2015; only four such laws have passed. NDY has built a network of activists throughout the country that has responded, over and over again, to educate legislators about the dangerous public policy of state-sanctioned selective killing.

In addition to direct action tactics, Not Dead Yet has continued using the full array of advocacy strategies, including filing friend-of-the-court briefs in over ten cases, two with the U.S. Supreme Court. In addition to briefs arguing against a constitutional right to assisted suicide, NDY has filed briefs in support of efforts to protect people with disabilities from involuntary withholding of life sustaining medical treatment by guardians or health providers, and in support of regulations protecting the right of disabled newborns to medical treatment.

Though less high profile, NDY’s more traditional efforts to influence public policy are an important part of our work, as well. By submitting detailed public comments on proposed governmental and quasi-governmental policies, NDY has opposed disability discrimination in protocols for procuring donated organs, physician orders on life-sustaining treatment, implementation of the Affordable Care Act, best practice guidelines in adult protective services, advance care planning and related educational materials, and much more.

NDY has made a lot of progress in 20 years. We are now a “go to” source for media outlets looking for quotes on the issue of assisted suicide. We have cultivated and lived up to our reputation for the highest standards of integrity and intellectual rigor. We have distinguished ourselves and our positions from that of the faith community, and earned the grudging respect of our opponents. And we remain the articulate and principled voice of disability rights opposition to the legalization of medical killing.

Though Kevorkian is gone, we still have to contend with death-advocates like Peter Singer and the mainstream bioethicists who agree with him, with the well-funded PR campaigns of assisted suicide advocates, and a never ending stream of public policy initiatives that need our perspective on living well with disabilities. Time has already taken from us many invaluable members and allies along the way, yet those still here will continue as long as we are Not Dead Yet.

On this, the 20th anniversary of the founding of NDY, we’re asking you to join us in renewing our pledge to prevent the legalization of assisted suicide and euthanasia, through the courts, the legislatures, the ballot box, and public policy. There are many ways you can help.

  1. Donate to NDY. Five bucks or five hundred bucks. We promise to steward it well and put it right back into the fight!
  2. Pro Bono Attorneys. We have regular need for attorneys to help us file briefs, assist individuals whose life-sustaining care is threatened, and lend their smarts to other legal matters, and we would love to build up our network of supportive attorneys across the country. Let us know if you might be willing for us to call on you from time to time to see if you can help us out in your state!
  3. Community Organizers. Whether it’s advocacy at the statehouse or a protest at an assisted suicide or bioethics conference, we’d love to hear from you if you’re willing to join us as a participant or organizer when the rubber meets the road!
  4. Letters to the Editor. Has the assisted suicide fight come to your state in full swing? NDY’s got a great online toolkit to help you sound like the policy buff you really are on this topic and help give you fodder for writing a letter to the editor the next time your hometown paper touts the proposed bill’s virtues! (Be sure to write us and tell us if your letter is published!)
  5. Coalition Support. Do you lead a nonprofit that would love to partner with NDY on activities related to issues like assisted suicide, “futile care” policies, surrogate healthcare decision-making, equal rights in organ donation, or just learn more about them?
  6. Become an Online Foot Soldier. You already told us you love us, so like NDY on Facebook, subscribe to our blog, and follow us on Twitter to help signal boost our message to help us get the disability perspective out there on assisted suicide and other health care issues.
  7. Send Us Your Stories. S/he who hath the best arguments does not always prevail. We have always felt we have the data on our side in our arguments, but that doesn’t always sway policymakers. We need stories to share that will drive our points home and give them a personal face. If you have a story (yourself, a loved one, friend or client) you think could benefit our advocacy, please send it our way!

Together we can build a society where the threat of assisted suicide and euthanasia no longer hang like a sword of Damocles over the heads of disabled people seeking medical assistance, and where disabled people have truly equal life choices.

Sincerely,

Diane Coleman                                                Anne Sommers
Founder, President and CEO                            Board Chair