Good Opinion Items in Washington Post and Newsday

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The Washington Post “Health 202” newsletter published an encouraging opinion piece this week entitled “Legalizing assisted suicide has stalled at every level.” According to the piece, in 2017 “bills were either quashed in committee or passed one legislative chamber but not the other. That was the case even in states run by Democrats, including Connecticut, Rhode Island and Hawaii.”

Moreover, “New York’s highest court upheld the state’s ban on assisted death in September, ruling unanimously that the terminally ill patients who brought the case don’t have a constitutional right to obtain life-ending drugs from a doctor.”

The authors also reported on an important bipartisan Resolution on assisted suicide (H Con. Res. 80) recently introduced in Congress:

Eleven House members – including six Democrats — have introduced a resolution condemning the practice.

“It undermines a key safeguard that protects our nation’s most vulnerable citizens, including the elderly, people with disabilities and people experiencing psychiatric diagnoses,” the resolution says. “Americans deserve better.”

To read the full article, go here.

In addition, Newsday published my letter to the editor in response to an editorial favoring assisted suicide. The text of the letter follows, and can be found on the Newsday letters page.

State has a proper role in suicide cases

In response to “New York’s aid-in-dying advocates look to 2018” [Opinion, Sept. 28], as the Court of Appeals noted, New Yorkers already may refuse to be hooked up to life-prolonging machines. Lethal drugs prescribed to cause death are a very different matter.

The court also said, “The State pursues a legitimate purpose in guarding against the risks of mistake and abuse. The State may rationally seek to prevent the distribution of prescriptions for lethal dosages of drugs that could, upon fulfillment, be deliberately or accidentally misused.”

In Oregon, we don’t have to look far to find cases in which insurers denied coverage for prescribed chemotherapy but offered coverage for assisted suicide: Barbara Wagner and Randy Stroup, Oregonians with cancer, were informed of this decision by the Oregon Health Plan.

We don’t have to look far for cases in which lethal prescriptions were given to people who were not terminal (having no more than six months to live). In 2016 in Oregon, at least one person lived another 539 days; another year, the longest was 1,009 days.

Assisted-suicide advocacy groups urge us to grant blanket legal immunity to all involved, but legislators owe a duty to all, not just the few who may think they are safe from mistake, coercion and abuse.

Diane Coleman, Rochester

Editor’s note: The writer is executive director of Not Dead Yet, a disability rights organization that opposes assisted suicide.

 

Short and Strong: John Kelly’s Testimony in Massachusetts

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[Editor’s note: This is a belated sharing. On Sept. 26th, I was on vacation and John Kelly had the flu. Nevertheless, and ever intrepid, John ensured that his testimony opposing the Massachusetts assisted suicide bill was delivered by John Robinson to the Health Committee. It’s short and well worth a read.]

September 26, 2017

My name is John Robinson and I am here to read the testimony of John Kelly, the director of Second Thoughts Massachusetts. Here it is:

Chairs Lewis and Hogan, Members of the Committee,

After Californian Stephanie Packer was denied prescribed treatment, she was told $1.20 would be her assisted suicide co-pay. $1.20

Yesterday, disability advocates from ADAPT were dragged out of a congressional hearing chanting No Cuts to Medicaid. Save Our Liberty. Recently, our own governor contracted for $90 million with Optum – a profit-maximizing corporation already accused of fraud – to take over MassHealth benefits for many old, ill, and disabled people.

Cost-cutting is in the news. Given this reality, assisted suicide takes choices away.

It’s no choice when every year, doctors misdiagnose 12 million people and thousands “graduate” from their six-month hospice benefit.

Ted Kennedy was told he had 2-4 months to live. He lived an extra year. John Norton of Florence testified in 2012 that when he was diagnosed with ALS, he would have used assisted suicide if he could. Luckily, assisted suicide was not legal, his disease process stopped, and he’s urging people to reject these bills – 60 years later.

With so much lethally incorrect information, we cannot speak of “choice.”

It’s no choice when:

One out of every 10 elders in Massachusetts is abused every year, almost always by adult children and caregivers.

When no official witness is required at the death and an heir can help sign you up, pick up the prescribed overdose, and then take action against you with guaranteed immunity.

When disabled people get told, straight to our face, at the hospital, and in the movies, that we are better off dead. Remember, seriously ill people become disabled.

When depressed people – and teenagers – learn that “feeling like a burden” is a rational reason to kill yourself.

When the only other choice is a nursing home – after being put in a nursing home, my grandmother committed suicide.

With legalized assisted suicide, innocent people will lose their lives, through misdiagnosis, the bottom line, suicidal despair, and abuse.

Please, continue to reject these bills, now and forever.

Thank you.

NDY Submission to United Nations Criticizes Proposal To Support Assisted Suicide and Euthanasia

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Not Dead Yet, the Resistance

Submission re: Draft General Comment on Article 6
of the International Covenant on Civil and Political Rights – Right to Life

October 6, 2017

Executive Summary

Not Dead Yet USA is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet USA helps organize and articulate opposition to these practices in the United States based on secular social justice arguments. Not Dead Yet also demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.

This submission concerns paragraph 10 of the Draft Comment, which reads as follows:

[While acknowledging the central importance to human dignity of personal autonomy, the Committee considers that States parties should recognize that individuals planning or attempting to commit suicide may be doing so because they are undergoing a momentary crisis which may affect their ability to make irreversible decisions, such as to terminate their life. Therefore,] States should take adequate measures, without violating their other Covenant obligations, to prevent suicides, especially among individuals in particularly vulnerable situations. At the same time, States parties [may allow] [should not prevent] medical professionals to provide medical treatment or the medical means in order to facilitate the termination of life of [catastrophically] afflicted adults, such as the mortally wounded or terminally ill, who experience severe physical or mental pain and suffering and wish to die with dignity. In such cases, States parties must ensure the existence of robust legal and institutional safeguards to verify that medical professionals are complying with the free, informed, explicit and, unambiguous decision of their patients, with a view to protecting patients from pressure and abuse.

We strongly oppose this draft language, which supports assisted suicide and euthanasia, thus proposing to carve older, ill and disabled people out of equal protection of the law. This submission will focus on the risks to individuals and society associated with assisted suicide and euthanasia. We will discuss the evidence from Oregon, the earliest of the five states and the District of Columbia to legalize assisted suicide, and outline the concerns of the disability community.

Regardless of our abilities or disabilities, none of us should feel that we have to die to have dignity, that we have to die to be relieved of pain, or that we should die to stop burdening our families or society. The Draft Comment on this topic must be rejected.

***

NDY’s full 16-page submission with references will be available on the Human Rights Committee website here, along with other submissions, including an excellent document by Toujours Vivant/Not Dead Yet Canada.

NDY UK Relieved By High Court Ruling in Assisted Suicide Case

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In a case brought in the U.K. by Noel Conway, a man with motor neuron disease, the High Court ruled against overturning legal protections against assisted suicide. Not Dead Yet U.K., which made a submission in the case, issued the following press release when the ruling came out.

PRESS RELEASE: Disabled campaigners pleased that High Court rejects legal challenge to suicide law

by NotDeadYetUK

PRESS RELEASE – FOR IMMEDIATE RELEASE

Disabled campaigners pleased that High Court rejects legal challenge to suicide law

Disabled campaigners from Not Dead Yet UK are relieved that the High Court has ruled against removing protections afforded disabled and terminally ill people by the current law prohibiting assisted suicide.

Not Dead Yet UK interviewed in the case and was be represented in court on a pro-bono basis by barrister Catherine Casserley of Cloisters chambers together with Chris Fry and Millie Broadbent.

This issue was last considered by Parliament in September 2015 when Rob Marris MP’s assisted suicide Bill was decisively defeated by 330 to 118 votes in the House of Commons. Mr Conway and Dignity in Dying (formerly the Voluntary Euthanasia Society) were attempting to override Parliament’s decision by seeking a change in the law through the courts.

Not Dead Yet UK notes that not one organisation run by or for disabled and terminally ill people supports the legalisation of assisted suicide. The medical profession, including the BMA, Royal College of GPs and Association for Palliative Medicine are also against changing the law, believing it would destroy trust in relationships between patients and those providing their medical care.

Disability campaigner and spokesperson for Not Dead Yet UK, Juliet Marow, said:

“We welcome the decision by the High Court to reject this attempt to treat terminally ill and disabled people differently by removing vital legal protections. We are looking forward to the national conversation now focussing on the real issue here, which is a lack of adequate social care being provided to people with disabilities. Similarly we need a proper discussion on ensuring adequate palliative care is provided for the terminally ill.”

Speaking for Not Dead Yet UK, co-founder Phil Friend, said:

“A change in the law is a terrifying prospect to the vast majority of disabled and terminally ill people who work hard towards achieving equality for all. Until we have reached that objective assisted suicide will remain a dangerous and prejudiced option, likely to increase suffering and distress”.

Disability campaigner Baroness Campbell of Surbiton, one of the founders of Not Dead Yet UK, said:

“We have successfully seen off attempts to change the law on assisted suicide in Parliament. The law must not be weakened via the back door.”

Liz Carr, star of BBC1 drama ‘Silent Witness’ said:

“Disabled and terminally ill people want support to live – not to die. As a long standing supporter of Not Dead Yet UK I am keen to take an active role in making that happen”.

ENDS

For media enquiries and interviews: Please contact Not Dead Yet UK spokesperson:  Juliet Marlow – 01420 477646  / emailnotdeadyet@gmail.com

Feel free to use any images from our Flickr account for articles – these are available in high res here: https://www.flickr.com/photos/136198439@N08

About Not Dead Yet UK:

Not Dead Yet UK is a campaigning network of disabled people founded in 2006 to oppose attempts to legalise assisted suicide for disabled and terminally ill people. Not Dead Yet UK promotes equality for disabled people in a secular context; it is not faith centred or allied to any organised religion. Its supporters come from all sections of the community. Its guiding principles are to value the lives of terminally ill and disabled people and oppose assisted suicide.

NDY Submits Public Comment on Proposal on Living Organ Donation By “Persons With Certain Fatal Diseases”

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This is a complicated subject. It impacts people with disabilities in multiple ways, both as organ donors and recipients. But the tone and recommendations of the proposal by the Ethics Committee of the Organ Procurement and Transplantation Network needed a response. Some excerpts follow.

The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. The safety of potential donors should be of utmost concern. All lives of living donors must be equally valued. The OPTN must never pursue any policies that expose some donors to more risk than other donors. . .

We agree that there are some underlying health conditions that would not preclude a willing person from being a living donor. Decisions must be made on a case-by-case basis with the preservation of the person’s normal health as a paramount value. We are therefore disturbed and disappointed by the tone and tenor of the proposal as well as the recommendations that would create a two-tiered system of assessment, reporting and scrutiny.

The Committee’s focus as it seeks to expand the donor pool is not on donor protection but on transplant hospital protection. Although the details of implementation will be left to other committees, the thrust of the proposal is on reducing scrutiny for certain donor deaths. The Committee feels that in some cases, harm to donor can be traded off against other factors. The Committee gets to where it wants to be by conflating conditions which can be chronic and disabling with fatal conditions, and then blurring everything into terminal. This brings to mind what James McGaughey, former executive director of Connecticut’s Office of Protection and Advocacy, has written in a somewhat different context, “physicians…did not understand the prospects of people with disabilities to live good… lives…and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability…people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers…respond to them. ”. . .

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Given the recent studies that many people who request assisted suicide are motivated by feelings of being a burden and other existential issues, the Committee seems to have joined those who see no reason to ensure that such issues are addressed by adequate home care, palliative care, counseling, peer contact and other supports. . . .

Along these same lines, the Committee references feelings of uselessness and insecurity as motivations for the subclass of living donors. (pg. 8) It lists as psychological benefits to the donor improved self-esteem and enhanced meaning in life. (pg. 12) . . .

All this has everything to do with medical/societal prejudices towards disability. Several of the conditions discussed in the proposal are deceptively depicted as fatal. They should more accurately be seen as chronic conditions which people must manage effectively and which are accompanied by some level of disability. People can live for decades with multiple sclerosis, cystic fibrosis (which is present from birth) or COPD and, indeed, remissions are possible with multiple sclerosis. Even with advanced neuromuscular conditions like ALS, the course of the disease and life expectancy are quite variable. Indeed, Duke University’s ALS Clinic is studying cases in which symptoms have partially reversed. . . .

However, good values can be perverted by bias or ignorance of the social context. The Committee is applying these values without any understanding of the disability medical experience  – an experience that includes struggling for access to unbiased health care, being defined solely by one’s disability and fighting against “better dead than disabled” attitudes, an experience that wears on an individual.

It should be no wonder that some people diagnosed with ALS, who are too often given excessively grim prognoses and too rarely exposed to people who lead successful and fulfilling lives with respiratory support, feel that they cannot adapt. Yet the main difference between them and people with lifelong neuromuscular disabilities who have advanced to the same level of support needs is that they had less time to adjust and prepare.

Fortunately, OPTN’s Living Donor Committee seems to recognize that the proposal raises valid concerns. Our recommendation is that they go back and start over. To read the full NDY comment, go here. To read the full OPTN proposal and all posted public comments, go here.

Thank you to Lisa Blumberg, JD for her invaluable assistance in the preparation of NDY’s public comment.