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

Amy Hasbrouck: Analysis of Canada’s C-14, Assisted Suicide / Euthanasia Bill

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On April 14, 2016, Justin Trudeau’s Liberal government introduced bill C-14 “An Act to Amend the Criminal Code … (Medical Assistance in Dying)” in the house of commons, pursuant to the Canadian Supreme Court’s decision in Carter v. Attorney General of Canada, of February, 2015.

The law will make it legal for a competent adult with a “grievous and irremediable medical condition” to make a voluntary request and give informed consent to receive “medical aid in dying.” In the statute, a “grievous and irremediable medical condition” is defined as a “serious and incurable disease, illness or disability.” The person must be in an “advanced state of irreversible decline in capability” which causes “enduring physical or psychological suffering that is intolerable” and cannot be relieved in a way they find acceptable, and their natural death must be “reasonably foreseeable.” This is not a formal prognosis and sets no specific time limit. However the person must be informed of their reasonably foreseeable natural death.

Eligibility is determined by a doctor or nurse practitioner, with sign-off by a second doctor or nurse practitioner. The onus is on the person to be informed, and no provision is made to ensure communication access. The process by which decisional capacity is determined is not described.

The law allows for either euthanasia (performed by a doctor or nurse practitioner) or assisted suicide (a prescription the person can take at home). It also calls for a 15-day waiting period, unless the medical professional making the eligibility determination decides that the circumstances merit suspension of the waiting period. The application must be made in writing, and signed by two disinterested witnesses. However there is no restriction on who may write and sign the application on behalf of a person who is incapable of writing; thus an heir or employee of a nursing home could fill out the application for a non-verbal person, and their interpretation of the person’s wishes would probably go unquestioned.

The law allows an exemption for any person aiding a medical practitioner for actions in aid of assisted suicide/euthanasia (AS/E). Similarly, “No person commits an offence … if they do anything, at another person’s explicit request, for the purpose of aiding that other person to self-administer a substance that has been prescribed … as part of the provision of medical assistance in dying.” These exemptions apply “even if the person invoking the exemption has a reasonable but mistaken belief about any fact that is an element of the exemption.”

Some additional problems with the law:

  • The “voluntariness” of the request relates only to “external pressure” not psychosocial conditions or “vulnerability.”
  • There is no “vulnerability assessment” provided.
  • There is no prior, external judicial review of the person’s eligibility for AS/E.
  • There is no guarantee of palliative care or home care.
  • There is no right of refusal for clinicians or organizations; no “safe spaces” for patients.
  • (As in Oregon and Washington) lethal drugs left around the house could pose a danger to children or be sold on the street.
  • The data gathering scope and process are not specified.
  • The promises of the bill’s preamble are not fulfilled in the law.

Bill C-14 excludes persons under 18 years of age, and does not allow medical aid in dying by advance directive. The language of “decline in capability” and “reasonably foreseeable” natural death is meant to exclude people whose “suffering” is purely psychological. However the law provides that these three issues will be studied over the next five years to determine if the law should be amended to allow these practices and include these populations.

The bill is expected to go to second reading within the next week, then to the justice committee for hearings. If the bill is not passed by June 6, then the criminal code sections identified in the Carter case will simply cease to be in effect, creating an unstructured “right” to physician assisted death where virtually anything could happen.

The Euthanasia Prevention Coalition is calling upon local groups to organize rallies at the local offices of MPs (Members of Parliament) on April 27, and is planning a major event on June 1 in Ottawa.

NY Independent Living Exec Letter Points To Dangers in Former Insurance Exec’s Assisted Suicide Bill

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The Albany Times Union just carried a letter by Denise Figueroa, Executive Director of the Independent Living Center of the Hudson Valley, in response to an opinion piece by the Executive Director of the national assisted suicide advocacy group, who is also one of the drafters of the Oregon law upon which the New York bills are closely modeled.  Here’s Ms. Figueroa’s excellent letter, which highlights what many refer to as the “deadly mix” between assisted suicide and a profit driven health care system:

A commentary by Barbara Coombs Lee, head of Compassion & Choices, put forth some confusing and misleading information about a New York assisted suicide proposal and criticized a brain cancer patient leading the fight against it (“Allow terminally ill a peaceful escape,” March 20). Under the proposal, a patient that a doctor has determined has six months or less to live can receive a lethal drug overdose from a pharmacist.

She failed to note in either her background or her piece that she is a former HMO executive. As such, she is very familiar with the business of health insurance and how much these companies have to pay out when someone wants to be treated for their serious disease or disability. Legalizing assisted suicide leaves the doors wide open for health insurance companies to deny coverage of expensive treatments for the terminally ill, in favor of approving the far less expensive lethal drugs for suicide. This horrific danger has already been documented in Oregon where the bill Ms. Coombs Lee authored has been in effect for nearly two decades.

Additionally, she didn’t mention that opposition to assisted suicide is not partisan or ideological. Opponents include the Medical Society of State of New York, the Hospice and Palliative Care Association as well as advocates from disability rights, patients’ rights and suicide prevention communities.

Hopefully, legislators in Albany are getting both sides of the issue.

Denise Figueroa

Executive director, Independent Living Center of the Hudson Valley

[The op-ed to which this letter responds is available only to Times Union subscribers here.]

John Kelly: Assisted Suicide Laws and Bills “Riddled with Falsehoods”

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On March 29, Not Dead Yet New England Regional Coordinator and Second Thoughts Massachusetts Director John Kelly testified against New Hampshire Bill SB426, which would establish an “end-of-life choices study commission.” Using the euphemisms of proponents like Compassion & Choices against the bill, John lists the ways in which the bill is “riddled with falsehoods.”

Excellent opposition testimony was also delivered by doctors Paul Saba and Richard Johnson, and former New Hampshire legislator Nancy Elliott. Below are excerpts from John’s testimony:

Chairman Rowe, Vice-Chairman Hagan, Members of the Committee:

. . . Please reject SB426 because it is riddled with falsehoods. From the words of the commission’s title to its enumerated duties, it’s clear that legalization proponents drafted the bill. It is a stalking horse for the legalization of assisted suicide.

The first falsehood is the phrase “end-of-life.” The committee should know that in current practice, the “end-of-life” is the six-month period following a physician’s terminal diagnosis. Yet of the millions of misdiagnoses every year, many are terminal misdiagnoses. We know this because of the thousands of people who “graduate” from hospice each year. …

Assisted suicide laws turn the best outcome under hospice – proving you weren’t terminal after all – into the worst possible end for people who might live months, years, or decades longer, but are instead persuaded (or coerced) under threat of agonizing death to commit suicide.

There are so many examples of people outliving terminal prognoses, from Ted Kennedy living a year longer than predicted to John Norton of Florence, Mass., who testified before the state legislature that when he was diagnosed with ALS, he would have definitely used assisted suicide were it available. Luckily for John, his family, and everyone who has come to know him, assisted suicide wasn’t state policy, his disease process stopped, and – 60 years later! – he’s urging people to reject these bills. . . .

The second falsehood is illusion of “choices,” the other word in the title of the proposed commission. When people cannot get accurate knowledge about their condition, we cannot speak of “choices.” We also cannot speak of “choices” –

  • When one out of every 10 people over the age of 60 in New Hampshire is estimated to be abused every year, almost always by adult children and caregivers.
  • When someone in line to inherit your estate can help sign you up, pick up the prescription, and then take action against you with no questions asked.
  • When depressed people with a serious illness who mistakenly think that people will be better off without them get told that “feeling like a burden” is a rational reason to kill yourself.
  • When there is no funded homecare, so families worried about the inheritance feel pressure to “choose” assisted suicide. . . .

I was once able-bodied and had an accident, and since then I’ve received many “better dead than disabled” messages, right to my face and through popular culture. My own father wished that I died in the accident. . . .

The third falsehood in this bill is the phrase “aid in dying,” one of Compassion & Choices’ favorite euphemisms for assisted suicide (“Death with Dignity” is the other). It’s not clear exactly what “aid” means. …

“Dying” reflects the fiercely maintained belief of proponents that when people are “reasonably expected” to die within six months, they are in the process of actively dying. …The problem is that this is so often and so clearly untrue. …

[Fourth], according to proponents, … there has never been a case of abuse out in Oregon – that’s right, the first state-run program ever without a case of abuse. The only reason that no abuse is discovered is because the reports are designed that way. The only abuses we know of are ones that somehow make it to the media.

For example, Wendy Melcher died after being given massive doses of barbiturate suppositories by two nurses, one of whom was having an affair with Wendy’s partner. The nurses claimed that Melcher had requested assisted suicide, but there was no doctor’s prescription, Wendy did not self-administer, and the nurses never reported her death to the Oregon Department of Health as an assisted suicide.

Yet instead of referring the nurses to authorities for criminal charges, the state nursing board secretly suspended one nurse’s license for 30 days and placed the other on two years “probation.” It took a reporter’s phone call years later to inform Melcher’s devastated family that she had been killed. It seems that the very existence of the assisted suicide law turned evidence of a serious crime into an excusable mistake. The Portland Tribune editorialized, “If nurses — or anyone else — are willing to go outside the law, then all the protections built into the Death With Dignity Act are for naught.”

The fifth falsehood is that “aid in dying” is not assisted suicide. …

Encouraging assisted suicide for some will encourage suicide for all. Suicide contagion is real. According to the Centers for Disease Control, Oregon’s already high suicide rate has increased much more than the national average; from 1999 until 2010, the rate of increase for people age 35-64 was 49% in Oregon versus 28% nationally. …

The sixth falsehood is that assisted suicide is all about pain and suffering. But the five leading reasons reported by prescribing doctors solely deal with psychosocial distress about disability. First is distress about dependence on other people (“losing autonomy” 92%), second is distress over lost abilities (“less able to engage in activities making life enjoyable” 89%), followed by feelings of shame and perceived/actual loss of social status (“loss of dignity” 79%), distress about needing help with incontinence (“losing control of bodily functions” 50%), and believing that suicide would leave loved ones better off (“burden on family, friends/caregivers” 40%).

Another falsehood is that “choice” belongs only to the individual. It’s a fantasy that other people only want what the individual wants, and completely support whatever the person chooses.

… Here is an example of a man told he was a burden. Oregonian Kathryn Judson wrote of bringing her seriously ill husband to the doctor.

I collapsed in a half-exhausted heap in a chair once I got him into the doctor’s office, relieved that we were going to get badly needed help (or so I thought). To my surprise and horror, during the exam I overheard the doctor giving my husband a sales pitch for assisted suicide. “Think of what it will spare your wife, we need to think of her, “ he said, as a clincher….

The lives of non-“terminal” disabled people share many traits with people requesting assisted suicide, but we reject as bizarre and dangerous the notion that personal dignity is somehow lost through reliance on others, or because we are not continent every hour of every day. That’s why for 40 years the disability rights movement has insisted on funded programs to provide necessary personal care attendant (PCA) services for all disabled people, including people disabled by their serious illness.

Assisted suicide laws set up a two-tier system, under which some people get suicide prevention services while others get suicide assistance. The difference between the two groups would be based on value judgments about so-called “quality of life.” Many of us already get told, straight to our face and through medical hostility, that we might be better off dead. Legalized assisted suicide makes that prejudice official policy.

That’s why every leading national disability rights group that has taken a position on assisted suicide has come out against it.

There is no way to come up with a better bill through the “thoughtful and deliberative” process envisioned by sponsor Senator Dan Feltes.

This study commission would be well replaced by a commission that would investigate how best to “help older people in New Hampshire live well.”

…Reject SB426 because it’s dishonest and dangerous. Thank you.

To read John’s entire testimony, go here.