John Kelly Testifies for ASAN Bill in MA Prohibiting Disability Discrimination in Organ Transplant Eligibility

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On October 20, John Kelly submitted testimony on behalf of Second Thoughts Massachusetts and Not Dead Yet in support of H 3271, “An Act concerning nondiscrimination in access to organ transplantation.”

Not Dead Yet is proud to follow the leadership of the Autistic Self Advocacy Network (ASAN) on this issue. Lydia Brown of the Boston chapter of ASAN organized turnout for the hearing, and chapter coordinator Finn Gardiner testified in support of the bill. ASAN has put out a helpful advocates guide on nondiscrimination in organ transplantation, which can be found here.

John’s testimony follows below:

October 20, 2015

Chairs Lewis and Hogan, Members of the Public Health Committee:

I testify in favor of H 3271 on behalf of Second Thoughts Massachusetts and Not Dead Yet, state and national grassroots disability rights groups. We demand equal protection under the law for disabled people and oppose any discrimination justified by appeals to quality of life judgments.

This crucial bill will prevent discrimination against Massachusetts residents who would qualify as organ transplant recipients but for discrimination based on disability. We support the bill’s findings that “many individuals with disabilities still experience discrimination in accessing critical health care services,” and that “individuals with mental and physical disabilities have historically been denied life-saving organ transplants based on assumptions that their lives are less worthy,” or unfounded claims that disabled people cannot themselves maintain or have support systems maintain post transplant care regimens.

While our main focus is stopping assisted suicide laws, we have long fought for equal protection for disabled people when it comes to being improperly identified as a potential donor or denied eligibility as a transplant recipient.

For example, the national Organ Procurement and Transplantation Network’s proposed a plan to approach as possible donors newly spinal cord injured people receiving ventilation. The network wanted go to encourage people to decline the treatment and instead donate organs as part of a heroic suicide. We helped organize to stop the plan.

In 2012, we supported the Philadelphia toddler Amelia “Mia” Rivera’s right to receive equal consideration as a transplant recipient. Mia has the developmental disability Wolf-Hirschhorn syndrome. Her parents were initially told that she could not receive a new kidney because of her quote unquote “mental retardation.”

We support the Autistic Self Advocacy Network’s leadership on this issue. The group has identified equally troubling cases of discrimination against other potential organ recipients.

Please pass this bill out of committee, it would provide necessary reassurance to people with disabilities who may need an organ transplant, and it could save lives that are just as worthy and valuable as every other life in Massachusetts.

Thank you very much.

NCIL’s Lindsay Baran & NDY’s Anne Sommers Collaborate on Op-Ed in Washington Examiner

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As NDY previously reported, Lindsay Baran of the National Council on Independent Living, Anne Sommers of NDY and several other disability advocates testified on July 10th against an assisted suicide bill pending before the District of Columbia Council Health and Human Services Committee.  The NDY blog on the DC hearing included a video of Anne Sommers’ testimony.  John Kelly also sent testimony and Diane Coleman a letter to the DC Committee, as reported here.

The bill remains pending, so Lindsay and Anne decided to collaborate on an op-ed, which was posted on October 19, 2015 in the Washington Examiner.  The full piece discusses a range of key issues, but here’s an excerpt on the disability aspects of assisted suicide data from Doctor-prescribed suicide is never the answer:

Although this whole ugly business seems far more palatable when such noble aims as pain mitigation are headlined, 17 years of available data do not bear out this claim. Oregon annual report data demonstrate that it’s social factors that propel assisted suicide requests. According to one study, “loss of autonomy” (92 percent), “less able to engage in activities” (89 percent), “loss of dignity” (80 percent), “loss of control of bodily functions” (50 percent), and “feelings of being a burden” (40 percent) were the main reasons patients said they wanted to commit suicide. Pain did not even break the top five.

It is dangerous business for public policy to tether dignity to independence. Functional loss and disability nearly always accompany a terminal diagnosis. Linking dignity to independence brands scores of people, including those who age into or acquire disabilities and who depend on others for personal care, as living undignified lives.

Legalizing assisted suicide sends the message that feeling like a burden is not only an acceptable reason for suicide, but a justification for our health care system to provide someone the lethal means. Assisted suicide laws reinforce the very societal prejudice that disability rights laws were meant to dismantle and shifts the focus from respecting and accommodating people with disabilities and illnesses to assisting them to die.

To read more, go to Doctor-prescribed suicide is never the answer.

NDY Files Statement With Canadian Panel on Carter Case

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On February 6, 2015 the Supreme Court of Canada issued a horrific ruling in the case of Carter v. Canada.  How horrific?  The Court held:

Section 241 (b) and s. 14  of the Criminal Code  unjustifiably infringe s. 7  of the Charter  and are of no force or effect to the extent that they prohibit physician‑assisted death for a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.

The Court gave the Canadian Legislature one year to act on this ruling.  A federal panel was formed to gather input.  With the assistance of Toujours Vivant/Not Dead Yet Canada, the Council of Canadians with Disabilities submitted goals, principles and recommendations to the panel on October 7th.  Not Dead Yet (USA) submitted a Statement to the Canadian panel on October 14.  The Executive Summary of NDY’s Statement is below.

October 19 is the deadline for formal online submissions to the panel, but “Issue Book” submissions to the panel can be made until November 1st, by going to the panel’s web portal.

Statement of Not Dead Yet (USA) to Canadian Panel on Carter Case Decision

Executive Summary

Not Dead Yet 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 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 to the External Panel on Options for a Legislative Response to Carter v. Canada will focus on the Panel’s “key issue” in Terms of Reference Section 3.2 (c): “Risks to individuals and society associated with physician-assisted dying.” We will discuss the evidence coming from Oregon, the earliest of the four U.S. states 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 realities of assisted suicide implementation in Oregon and three other U.S. states demonstrate the urgency of limiting the harms done by the Canadian Supreme Court ruling.

With that goal, we have two recommendations:

  1. Adopt the detailed Goals, Principles and Recommendations submitted by the Council of Canadians with Disabilities (CCD),[i] which demonstrate a well-informed, evidence based and reasoned approach to reducing the dangers that will inevitably flow from implementation of Carter v. Canada. In order to completely incorporate CCD’s recommendations, direct consultation with a representative of CCD in drafting the legislation is necessary.
  1. Provide training, guidance and encouragement to law enforcement agencies to exercise their existing level of authority to prosecute physicians and others involved in an assisted suicide or euthanasia death, while allowing those prosecuted to defend themselves by proving that the guidelines submitted by the Council of Canadians with Disabilities were met.

[i] https://www.dropbox.com/s/izn5zr6rrazq5lj/ccdpolicyfinal150924.docx?dl=0

John Kelly’s Letter Published in New Jersey Star Ledger

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In response to a recent New Jersey editorial in favor of legalizing assisted suicide, John Kelly sent a letter which was just published in the Star Ledger under the title “Increased palliative care a better alternative to assisted suicide.”  He provided some useful data on the prevalence of medical misdiagnosis and its harm to patients.  He also suggested that they feature a picture of someone famous with a terminal illness who is choosing to work.

John’s Letter:

Every year, physician misdiagnosis affects 12 million Americans, putting half at risk of severe harm. New Jersey’s assisted suicide bill could make that harm lethal. So if you receive your prescribed overdose from a doctor and their colleague who totally misdiagnosed you, no one could ever know your life was cut short by months, years, or decades.

Isn’t New Jersey too savvy to buy the fairy tale of doctor infallibility?

Many Star-Ledger opinions on assisted suicide, pro and con, come with Brittany Maynard’s picture. The Ledger could encourage reader perspective by showing TV star Valerie Harper, decreed “terminally ill” more than a year before Maynard. She recently starred in a play.

Psychosocial reasons alone explain three-quarters of Oregon assisted suicides, yet the Ledger on October 6 presents needless pain as the only alternative. But contemporary palliative practices can ensure patient comfort.

So instead of passing this dangerous bill, state Senators should develop a plan like that recommended by renowned palliative care doctor Ira Byock. Require state medical schools to increase required curriculum in palliation. And before awarding medical licenses, make doctors demonstrate skills in pain management and patient communication.

Now there’s a change that would serve the interests of all New Jerseyans.

New Jersey native John B. Kelly is a disability rights activist based in Boston. He is the director of Second Thoughts Massachusetts and New England regional director for Not Dead Yet, grassroots disability groups opposed to the legalization of assisted suicide.

 

NDY Denounces Governor’s Decision on Assisted Suicide Bill

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Today, NDY was devastated and disgusted to learn that California Governor Jerry Brown signed into law the assisted suicide bill that proponents rammed through a “special” session of the legislature convened to address the state’s Medicaid budget.

Governor Brown’s message accompanying his action states that he “carefully read” materials from opponents such as “those who champion disability rights,” but he nevertheless seems to have missed key facts.

For one, he says that “the crux of the matter is whether the State of California should continue to make it a crime for a dying person to end his life . . ..”  Suicide is not a crime under California law (nor in other states), but assisted suicide proponents love to confuse people about that.  The crime is when physicians and other third parties, such as the individual’s heirs, assist in suicide.

When confronted with that fact, proponents then often argue that old, ill and disabled people need help to commit suicide, which is another falsehood.  As proponents promote on their website, any old, ill or disabled person can already commit suicide legally and peacefully in any state.  So it is not a crime for a dying person to end his or her life peacefully, and Governor Brown’s stated “crux of the matter” is therefore mistaken.

Near the end of his short statement, Governor Brown said:

“In the end, I was left to reflect on what I would want in the face of my own death.

    I do not know what I would do if I were dying in prolonged and excruciating pain.”

This reveals that he didn’t really learn very much about the advances in palliative care when it comes to physical pain. At this point in time, palliative care physicians are able to relieve physical pain, even if that may in some instances require palliative sedation.  Some people may feel that they don’t want to be made unconscious to relieve pain, but that’s a psycho-social issue.  The implication that assisted suicide is needed to relieve physical pain is mistaken.

The Governor’s stated reasons are based on fallacies and his action must be denounced.  When held up alongside the factually based and well considered reasons that disability rights organizations oppose legalization of assisted suicide – mistaken prognoses, insurance denials, family coercion and abuse, among others – his failure to veto the bill amounts to a breach of his duty to protect all Californians, not just the privileged few who can count on high quality health care and the support of a loving family.