John Kelly: A social policy of assisted suicide is just as dangerous as the death penalty

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John B. Kelly 
Testimony in strong opposition to AB2x 15 
September 3, 2015

Members of the Finance Committee:

If you are opposed to the death penalty, I hope you will have second thoughts about legalized assisted suicide. Yes, there is a committed group of proponents who believe that assisted suicide would benefit them, and many people have stories of difficult and traumatic deaths. But compelling personal stories notwithstanding, a social policy of assisted suicide is just as dangerous as the death penalty.

We now know that many completely innocent people have been sentenced to death either through mistakes (witness misidentification, circumstantial evidence,) or abuse of the system (prosecutorial and police misconduct). Strong majorities are forming against the death penalty.

Mistakes and abuse in the medical system also sentence innocent people to death. People who are misdiagnosed (see John Norton), people who would respond to more treatment (Jeanette Hall), people who wouldn’t die for years (Oregon’s statistics), will be led to tragically “choose” death.  And because not all families are loving or financially secure, innocent people will be bullied (Kate Cheney) or worse by abusive families and caregivers (Wendy Melcher). With thousands or even millions of dollars at stake, beneficiaries will be motivated to ensure a premature death (Thomas Middleton).

Just like the death penalty, assisted suicide exacerbates existing inequalities across race and class. People who are mentally ill,  people of color, and poor people are much more likely to be sentenced to death. Assisted suicide programs have offered lethal drugs to patients with severe depression (Michael Freeland) and to people denied treatment (Barbara Wagner). Patients of color receive substandard, often deadly lack of medical care, and are the targets of educational campaigns to prepare advanced directives, give up on treatment, and enter hospice.

Assisted suicide is unique in that the leading proponents are more well-to-do, better educated and whiter than the general population. People of color oppose legalized assisted suicide (Pew Research Center on End-Of-Life), and do not participate in the legalized programs (Oregon statistics). And yet the great cost-savings potential of early death already drives much of of end-of-life policy. We poorer people are already under increasing pressure to refuse life-saving treatment (even antibiotics or temporary ventilation). For people who are already viewed as “better off dead,” assisted suicide will become a recommended option.

Please think about the profound social implications of enshrining in policy the belief that sometimes it is more dignified, more respectable, to die early. Rather than aid in dying, please focus on aid in living and ending the vast inequalities that are distorting our society.

John B. Kelly

References are all searchable at the California-based Disability Rights & Education Defense Fund (DREDF) page on assisted suicide: http://dredf.org/public-policy/assisted-suicide/ .

John B. Kelly
New England Regional Director
Not Dead Yet
Boston, MA

[Editor’s Note:  For another interesting comparison of assisted suicide laws and the death penalty, see John Witman’s 11/29/14 op-ed in the Times of Trenton, Assisted suicide will not work in New Jersey.]

DREDF and ASAN Oppose “End Run” Assisted Suicide Bill in California Assembly

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Having failed to get any traction in the California Assembly Health and Judiciary Committees during the regular legislative session, proponents of assisted suicide legislation did an end run around the appropriate process and brought another bill up in a special session convened to address state budget issues.  As Marilyn Golden, senior policy analyst for the Disability Rights Education & Defense Fund, told the San Jose Mercury News, “This is a heavy-handed attempt to force through a bill that could not get any traction at all in committee,” said Marilyn Golden, co-chair of the Californians Against Assisted Suicide Coalition. “It’s one thing to run roughshod over the normal committee and legislative process to jam through a district bill, but to do that on what is literally a life-and-death issue is clearly abusive, and should concern all Californians.”  (See California legislators revive right-to-die bill, August 18, 2015.)

On September 1, 2015, a committee hearing was held on the bill, ABx2 15, and Marilyn Golden was among the witnesses testifying against the bill.  Her testimony began with a compelling summary of the issues:

We, in opposition, present our concerns under the banner of social justice: disability justice; racial justice; economic justice.

Choice is a myth in the context of our unjust health care reality. End-of-life treatment options are already limited for millions of people—constrained by poverty, disability discrimination, and other obstacles. Adding this so-called “choice” into our dysfunctional healthcare system will push people into cheaper lethal options. There is no assurance everyone will be able to choose treatment over suicide; no material assistance for families of limited means who are struggling to care for loved ones; no meaningful protection from abusive family members or caregivers.

This bill protects doctors and hospitals, not patients. It presumes that all families are happy, and that everyone is financially secure and has no one around them working against their interests.

The bill assumes a fantasy world where government will effectively address abuse, under a bill with no provision for it.

Don’t be seduced by rhetoric of choice for a few, into a dangerous policy change that will bring social injustice to many.

To read Marilyn Golden’s complete testimony, go here.

A number of individuals and disability organizations also sent powerful letters to the Assembly committee, including the Autistic Self Advocacy Network, a strong ally of Not Dead Yet in the fight against legalization of assisted suicide and related health care justice issues.  The following from Julia Bascom, deputy executive director, is a crucial passage in the ASAN letter:

We realize that many regard “aid in dying” as a social justice issue, and we agree; except that the proponents are on the wrong side of it. Most social justice advocates realize that government statistics do not reflect reality. Oregon’s statistics are reported by doctors who participate in assisted suicide. Most people are reluctant to admit that they broke the law; much less that they facilitated the death of an unwilling person; hence, most injustice occurs in private.  Hence, the proponents interpretation of the Oregon’s statistics reflects a privileged experience of the justice system. Given the legislature’s knowledge of such systemic oppression, it is unjust for it to institute yet another means of normalized, invisible violence; no matter what its intentions are. Mainstream social justice activists are working to prevent laws the precipitate systemic coercion, mistakes and abuse.  As social justice activists for the disabled community, we demand that the experiences of people with disabilities and terminal illnesses be afforded the same insight, nuance, and respect.

To read the complete ASAN letter, go here.

Despite these and other well documented messages to the committee, in the absence of many of the Health and Judiciary Committees’ bipartisan opponents, ABx2 15 was passed out of the “special” committee.  Disability rights activists have long hated the word “special” as a euphemism for discrimination, segregation and second class treatment, and now we have another reason to view it that way.

But the fight is not over.

NDY Colorado Issues Media Advisory Opposing Proposed CO Constitutional Amendment on Assisted Suicide

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FOR IMMEDIATE RELEASE

August 24, 2015

Contact: Carrie Ann Lucas (970) 460-4035

Assisted suicide proponents have recently submitted an initiative to amend the Colorado constitution to allow not only assisted suicide, but non-voluntary euthanasia as well. This first in the nation proposal to allow both assisted suicide and euthanasia will allow some people’s lives to be ended without their consent.  There will be mistakes and abuse, and as a result, people will die needlessly — preventable deaths that can never be undone. The proposed constitutional amendment does not propose any safeguards to prevent this outcome.

Elder abuse, and abuse of people with disabilities, are a continuing problem in Colorado.   Though called a free choice, for these patients, assisted suicide and euthanasia would have been a phony form of freedom. 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?  Each year, more than 11,000 reports of abuse against people with disabilities and seniors are reported in Colorado. Far more go unreported.

“Not Dead Yet is among a long list of disability rights organizations opposing the legalization of physician-assisted suicide. This amendment is a deadly mix in a profit-driven healthcare system where a lethal prescription may become the cheapest treatment. The bill poses a direct threat to the lives of persons with disabilities and the elderly,” said Carrie Ann Lucas of Not Dead Yet Colorado.

Anita Cameron, also of Not Dead Yet Colorado added, “This amendment is unnecessary, as every patient already has the right to refuse treatment. This proposal has no safeguards to protect against abuse and coercion. Legalizing physician-assisted suicide and euthanasia is like putting fire into a paper bag: There’s no way to control it.”

Importantly, there is an alternative: anyone dying in discomfort that is not otherwise relievable, may legally today, receive palliative sedation, wherein the patient is sedated to the point where the discomfort is relieved while the dying process takes place. A legal solution to any uncomfortable deaths that does not endanger others the way an assisted suicide law does exists currently.

“Sadly, many, including the amendment’s primary proponent, fear disability more than death itself,” said Lucas.  “This fear already causes so-called ‘mercy killings’, and should not drive public policy.”

“Studies on severely disabled people have demonstrated that disabled people rank their quality of life similar to non-disabled people,” said Robin Stephens, also of Not Dead Yet Colorado. “Some people rank their quality of life as very high, some very low, most inbetween — just like non-disabled people.”

Not Dead Yet Colorado is the Colorado chapter of Not Dead Yet, a 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 helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.

[Readers can view the Media Advisory and visit the NDY CO website here.]

Statement of Solidarity in Observance of Suicide Prevention Month

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September is suicide prevention month, and grim though it may be, the disability, aging, and veterans communities are among the most likely populations to feel pressure to end their lives and, sadly, do so. In an effort to re-claim conversations about quality of life and to highlight the deficits in our nation’s current healthcare and long-term services systems that often foster feelings of desperation, we’ve written a Statement of Solidarity in Observance of Suicide Prevention Month, affirming the values of dignity, diversity, and full participation.

Please review the Statement (also pasted below) and consider signing on in solidarity as an organization and sending it out over your networks and to any chapters or affiliates you may have. To sign on, send us an email to NDYOutreach@gmail.com and note your organization’s name as you’d like it to appear, and the state in which you are located. We would prefer you send your sign-on as quickly as possible, but we will be receiving sign-ons until close of business, September 25, 2015.

Please feel free to forward this to other interested individuals and organizations, as we’re hoping to generate a large list of those who stand in solidarity with the values of suicide prevention.

Thank you!

 

Statement of Solidarity in Observance of Suicide Prevention Month

Affirming the Importance to People with Disabilities of Access to Services, Real Choices, and Self-Determination
September is suicide prevention month, and during its observance, we, the undersigned, express our sincere sorrow that any human ever experiences a level of despair or hopelessness that results in a choice to end one’s own life.

The concern of the disability, military and veterans, and aging communities in suicide prevention is understandable in view of research regarding rates and reasons, which consistently show these groups at increased risk. According to several studies, the biggest difference between notes of those who died as a result of suicide attempts and those who attempted it but survived was a far greater emphasis in the notes of those who died as a result of their attempts on the belief that they were a burden on other people and society at large.[1] Research also shows that isolation or removal of a person from his or her social group creates increased risk for suicide, and that people experiencing depression – a psychiatric disability – are at a 25 times greater risk for suicide than the general population.[2]

As a community of greater than 56 million Americans with disabilities — including veterans with disabilities and the aging community with acquired disabilities – we have a long history of receiving messages from society that we are a burden on account of our health care needs; our difficulty transitioning back into society; or faulty assumptions about the quality of our lives. Far from harmless opinion, these views – often tantamount to “better dead than disabled” – are an insidious threat to our civil rights and to decisions about allocations of public funds.

As long as the majority of Americans with disabilities continue to live in poverty and unnecessary isolation, without access to appropriate mental health care and comprehensive, fully-funded and operational systems of assistive living services, our alarming and distressing rates of suicide, including assisted suicide, will go unchecked. We find this unacceptable, and in recognition of the 25th anniversary of the Americans with Disabilities Act (ADA), we echo the words of the National Council on Disability, an independent federal agency, when it wrote, “Society should not be ready to give up on the lives of its citizens with disabilities until it has made real and persistent efforts to give these citizens a fair and equal chance to achieve a meaningful life.”[3]

Underpinning and enshrined within major American disability civil rights laws is the belief that “disability is a natural part of the human experience.”[4] The immutability of disability – like race or gender – forms the basis of the protections these laws confer. And yet, laws alone, absent abiding commitments from all quarters of society, cannot create the type of societal change that together we are fighting to achieve.

We, the undersigned, on this occasion of observing Suicide Prevention Month:

  • Recognize that people with disabilities, including veterans with disabilities and the aging population, are among society’s most likely to end their lives and to experience pressure to end their lives.
  • Affirm the statement in Article 10 of the U.N. Convention on the Rights of Persons with Disabilities, which states that “every human being has the inherent right to life” and pledge to work together to “ensure its effective enjoyment by persons with disabilities on an equal basis with others.”
  • Believe disability is a natural part of the human experience and a form of human diversity, and we reject the notion that disability is a fate worse than death.
  • Believe dignity is innate in every life and eschew the notion that dignity can only be achieved or reclaimed by extinguishing life.

We encourage leaders from across the country to join us in calling out and rejecting policies and practices that exclude, isolate, and discriminate against people with disabilities that so often encourage self-inflicted or assisted premature deaths; and instead to work together toward the full participation and self-determination of all people with disabilities as equally-valued members of our beautiful and diverse human family.

Signed,

Not Dead Yet

[1] Joiner, T. E., Pettit, J. W., Walker, R. L., Voelz, Z. R., Cruz, J., Rudd, M. D., & Lester, D. (2002). Perceived burdensomeness and suicidality: Two studies on the suicide notes of those attempting and those completing suicide. Journal of Social and Clinical Psychology, 21(5), 531-545.

[2] W. Breitbart, “Cancer Pain and Suicide,” in Advances in Pain Research and Therapy, ed. K. M. Foley et al., vol (New York: Raven Press, 1990), 399-412.

[3] National Council on Disability, “Assisted Suicide: A Disability Perspective Position Paper” (1997).

[4] As expressed in the congressional findings of the U.S. Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C.A. §15001 (2000), the Individuals with Disabilities Education Act, 20 U.S.C.A. §1400, and the Rehabilitation Act, 29 U.S.C.A. §701.

John Kelly’s Testimony and Diane Coleman’s Letter to the DC Council Health & Human Services Committee

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John Kelly and I both decided to add our own messages to the strong voices of disability rights advocates urging the DC Council to reject the assisted suicide bill that was the subject of the July 10th hearing before the Health & Human Services Committee.

John’s testimony on behalf of Second Thoughts Massachusetts focused on the common disability experience of misdiagnosis and grim prognosis, sharing John Norton’s personal story:

Doctors misdiagnose and give incorrect prognoses, frequently. In the disability community, we have many members who have been given a terminal diagnosis, some since birth, some more than once. One Second Thoughts member, John Norton of Florence Massachusetts, was diagnosed with ALS (Lou Gehrig’s disease) in his first year of college – in 1955. He was told he would die in 3 to 5 years.

John’s complete testimony is available here.

My letter focused on the fact that assisted suicide laws give the real choice and control to doctors, and what the Oregon data shows about which doctors are giving lethal prescriptions for what reasons:

[Y]ou 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.

The full text of my letter is available here.