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.

NDY Press Release: NDY Files Brief In New Mexico Assisted Suicide Case

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[Editor’s Note:  The October 1, 2015 press release below is also available online in PDF format through PRWeb here.  The friend-of-the-court brief described in the release can be read here.]

Not Dead Yet and Five Other National Disability Groups File Friend of the Court Brief in New Mexico Supreme Court in Assisted Suicide Case

On September 30, 2015, Not Dead Yet and five other national disability rights organizations filed a friend-of-the-court in the New Mexico Supreme Court in support of the State Attorney General’s request that the state’s high court uphold a Court of Appeals ruling that physician assisted suicide is not a right under the state constitution. Joining in the Not Dead Yet brief are ADAPT, Autistic Self Advocacy Network, the Disability Rights Education & Defense Fund, the National Council on Independent Living and United Spinal, collectively referred to as the “Disability Amici.”

The case is Morris v. Brandenburg (S. Ct. No. 35,478) and the disability brief supports the Court of Appeals ruling, which was issued August 11, 2015 (Court of Appeals Case No. 33,630), and the State Attorney General, who is seeking to uphold the appellate ruling.

According to the brief filed in the New Mexico Supreme Court, “State-sanctioned assisted suicide degrades the value and worth of people with disabilities and violates the antidiscrimination rights, protections and mandates of the Americans with Disabilities Act, 42 U.S.C. § 12101, et seq.”

“Our basic position is that when some people get suicide prevention while other people get suicide assistance, and the difference is the person’s age, disability or health status, that’s a problem,” said Not Dead Yet’s president and CEO, Diane Coleman.

The dissent in the Court of Appeals decision that is the subject of the appeal to the state Supreme Court noted that the State Attorney General did not call witnesses or submit evidence of alleged any abuses in Oregon and Washington state where assisted suicide is legal. In their Supreme Court brief, the Disability Amici urge that, if the Court is not prepared to simply uphold the Court of Appeals at this stage, the Court should remand the case and allow one or more of the disability groups to assist the Attorney General or intervene as defendants in the case to ensure a full hearing of facts that were allegedly omitted in the original trial court.

A free subscription to the Not Dead Yet blog is available online.

Autistic Self Advocacy Network Sends Powerful Letter To Governor Jerry Brown

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[Editor’s Note:  The California assisted suicide bill hit Governor Brown’s desk last Friday, which means that he has until Wednesday, October 7th to decide whether to veto it.  Please add your message to the many others who are urging him to veto this discriminatory and dangerous legislation.  For information on how to send a letter, online or twitter message, go to John Kelly’s blog here.]

ASAN

Autistic Self Advocacy Network

September 25, 2015

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Subject: – Veto AB 2X 15

I write as Director of Public Policy of the Autistic Self Advocacy Network (ASAN) to urge the Governor to veto AB 2X 15, which would permit physician-assisted suicide in California.

ASAN believes that physician-assisted suicide legislation like AB 2X 15 discriminates against people who are aging, ill, or have disabilities. During the course of its advocacy for people with disabilities, we repeatedly encounter attitudes that life with a disability – not only developmental disability but also disability caused by age or illness – is “undignified” and that people with disabilities cannot live happy lives at home among their loved ones.

The belief that it is better to die than to depend on others for assistance is central to arguments in favor of so-called “death with dignity.” Supporters frequently focus on the “indignity” of needing help to eat, move, or take medications. In Oregon, which passed nearly identical legislation, 93% of those who died from physician-assisted suicide in 2013 cited “loss of autonomy,” or disability, as a motivation. Less than 28% cited concerns about pain control.1

This harmful mindset perpetuates stigma, isolation, and depression among people with disabilities and can create significant or even fatal barriers to accessing health care and needed services. Medical discrimination against people with disabilities is unfortunately widespread.

Moreover, although AB 2X 15 claims to limit its scope to people who have a terminal illness, it has the potential to affect nearly everyone who has a disability or a significant illness (including age-related illnesses). Doctors typically cannot make six-month prognoses with an acceptable level of certainty. The disability community is full of people who have outlived “six-month” prognoses by decades. There is every reason to believe that legalized physician-assisted suicide in California would shorten the lives of many people by months, years, or decades.

People facing life-threatening diagnoses – especially diagnoses expected to cause some level of disability as part of the diagnoses’ natural progression – are a highly vulnerable population. It is extremely common for people to feel depressed in the face of progressive disability. Moreover, people with disabilities, including disabilities resulting from age or illness, are also at heightened risk of abuse, isolation, and exploitation.

Instead of addressing these risks, legislation like AB 2X 15 actively exacerbates them. Neither the Oregon law nor AB 2X 15 requires that individuals be provided either accurate information on pain management, nor long-term supports or referrals to services such as peer counseling and mental health screening. These types of information and referral services are the gold standard in the disability community. In 2013, only two of the 71 Oregonians who died from physician- assisted suicide were even referred for formal psychiatric or psychological evaluation. It is unthinkable that a doctor would respond similarly to patients without disabilities expressing suicidal feelings in the face of serious life stress.

In addition, neither the Oregon law nor AB 2X 15 requires any sort of safeguard to ensure that the lethal medications are taken voluntarily after they were prescribed. Given the heightened risk of abuse and neglect among people who rely on others for help with day-to-day tasks, this is simply unacceptable.

People with significant disabilities, including people with life-threatening diagnoses, should not have to die in order to have dignity. Instead, they need access to the things that help them make the most of their remaining time: quality palliative care, respectful in-home supports, counseling, and assistive technology to maximize autonomy. Let’s focus on aid in living, not “aid in dying.”

Samantha Crane
Director of Public Policy
Autistic Self Advocacy Network

1http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents /year16.pdf.

NDY Advocate Lillibeth Navarro Speaks at Sacramento CA Rally for Veto

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A diverse group of advocates led by people with disabilities held a rally at the State Capitol in Sacramento, California on September 24th to urge Governor Jerry Brown to veto the assisted suicide bill rammed through a special session of the state legislature two weeks ago.

Sacramento Rally Photo

[Photo of people with signs gathered near the stage of the rally.]

Among the disability leaders speaking at the rally was Lillibeth Navarro, a long time advocate with Not Dead Yet who is also the Founder and Executive Director of Communities Actively Living Independent & Free (CALIF).  Lillibeth discussed cost-cutting pressures on elders and people with disabilities to forego life sustaining medical care.  These pressures too often come from doctors, who would be the gatekeepers of assisted suicide.

Lillibeth and Marilyn 1 9-24-15 onstage

[Photo of Lillibeth Navarro speaking at rally with sign with the words “Doctor Assisted Suicide” in a red circle with a slash through it, with Marilyn Golden with a sign with the words “assisted suicide: Rx for Abuse” and a sign language interpreter also onstage.]

The full text of Lillibeth Navarro’s remarks are below.

My name is Lillibeth Navarro, a polio survivor dependent on a motorized wheelchair for mobility. I have a ventilator for breathing at night and a personal care assistant helps me with chores of daily living. I take pains to describe these details because I’m aware that I stand in line for the health care cost chopping board that could, with one policy decision, cut me off from the life giving supports I need as a person with a disability. Yet I work full time as a disability rights advocate and I manage an independent living center in Downtown Los Angeles.

With my work in the disability community, I see this frightening trend. Last week, a former co-worker called me distressed because the doctors wanted his grandmother brought to hospice care and to just be given sleeping medication and less food. They said her Alzheimer’s Disease is far gone affecting her ability to manage some basic bodily functions. Up to that point, the family was caring for their grandmom—she would still ride with them in the car for outings and sit with them watching TV. When they noticed that their Grandmom was getting slower and slower, they brought her to the doctor, hoping to get her some medication to improve her condition. They were shocked at the doctor’s suggestion of hospice care. Rejecting the prospect of leaving the Grandmom to the hospice nurses, the family decided to continue caring for her as they have been doing.

Two years ago, a school teacher brought me the case of a student with disability (specifically a speech impairment) distraught because she was in a fight with her brother for the life of their mother battling with cancer. The brother wanted their mother euthanized but his sister was opposing it because she was closer to her mom who had expressed the desire to live even just a little more. The hospital ethics committee forbade us from helping the daughter fight for the mother and was booted out of the ethics review committee meeting and entertained only the brother. Clearly the institutional bias was with the more able bodied sibling believed more competent to decide on the mother’s fate.

In an atmosphere like this, not even the tightest written safeguards purportedly included in the AB 15 Assisted Suicide bill will protect people with disabilities. What is most frightening of all is that the bill (and other similar bills) creates the most precipitious slippery slope toward the silent extermination of our people, the most vulnerable of them being people with terminal illnesses, most of whom are at the mercy of their HMOs, with no financial resources and physical energy to fight for their lives.

As a person with a disability who has survived polio and cancer, I have watched in alarm how quickly the atmosphere has changed over the years in the attitudes of the medical community about our treatment. The presumption of life has been eroded and replaced with a disturbing presumption of so-called “choice”, often interpreted to be the withdrawal of even the most routine life-sustaining food and water. Five years ago, I was asked by a physician if I would like a tracheotomy done on me if suddenly I came down with pneumonia and could not breathe! The episode alarmed me. Why was it even a question for him? Why do I first have to declare it on paper that I want to live if this doctor has sworn to the Hippocratic oath?

I find it quite outrageous that the terms “assisted suicide” are equated only with people with terminal illnesses. People without disabilities are not given help to commit suicide. They are given assistance of a different sort—they are encouraged to live by being put on suicide watch because their lives are perceived as worth saving. Hundreds of suicide hotlines are available in the community to coach them to rethink life toward possibilities and hope. On the other hand, people with disabilities are encouraged and assisted to do suicide and AB 15 is proposed to exonerate those who assist them to do it.

Because people with polio were not being “mercifully” killed in the 40s and 50s, because Vietnam veterans were coming home from the war and needed to be assisted to live, scientists and inventors have come up with with the most amazing gadgets that allow us today to move around in our motorized wheelchairs, to drive around with vehicles with hand-controls, therapies that allow us to work, have families, and participate fully in society.

Governor Brown, WE NEED YOUR VETO on this bill !