Anita Cameron Awarded for Service to the Self-Advocacy Movement

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A week ago today in Washington, D.C., the Autistic Self Advocacy Network (ASAN) presented Anita Cameron, NDY’s Director of Minority Outreach, with its 2017 award for Service to the Self-Advocacy Movement.

Anita was introduced by Samantha Crane, ASAN’s Legal Director and Director of Public Policy, and the incoming Board Chair of NDY.  ASAN’s write up about Anita in the award announcement said:

Anita Cameron has been involved with community organizing across social justice movements for 36 years. She is an ADAPT media liaison and has been at the forefront of this year’s civil disobedience actions to protest attacks on Medicaid and the Affordable Care Act. She has experience working on transportation issues, LGBT+ issues, emergency preparedness for people with disabilities, and a variety of other social causes. Anita is a proud autistic activist of color and serves as Director of Minority Outreach at Not Dead Yet.

People who follow Anita’s work saw her interviewed in numerous articles over the summer in the fight for healthcare and home and community based long term care services. Examples are:

The ASAN gala event featured a keynote address by Judy Heumann, an internationally recognized leader in the disability community and lifelong civil rights advocate for people with disabilities. ASAN’s Executive Director Julia Bascom gave a powerful speech and call to action at the event as well.

Congratulations to Anita Cameron! We are *very thankful* to be working with her in the fight for our lives!

WA, USA: Assisted Suicide Advocates Push Documents for People with Dementia to “Refuse” Spoon-Feeding

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Below is an article published on Friday, 11/3/17 by Kaiser Health News. The original article can be found at https://khn.org/news/new-instructions-could-let-dementia-patients-refuse-spoon-feeding/ and is republished here, according to the guidelines of  Kaiser Health News.

A “right to die” organization based in Washington state is pushing a new advanced directive that would allow people with dementia to refuse to be fed by hand – using an advanced directive. The guidelines are allegedly straightforward and suggest it’s easy to tell when someone with dementia has lost all interest in food and liquid. My comments suggest that “refusal” cases have a history of starting out narrowly defined and are broadened over time. By the end of the article, advocates of this new initiative confirm my concerns – stating they would like to prevent any hand-feeding but that “this is where it must begin.”

The article doesn’t get to discuss troublesome questions around this initiative: Is this really a big problem? Is it that easy to tell when a person doesn’t want to eat or drink at all? Is people needing time and care to eat a bigger problem than lack of hunger?

I posted a link to this article on Facebook yesterday and quickly got a comment from one of my friends on the site. They paint what I believe is a “reality check” regarding issues of dementia, feeding, and care. Issues absent in the framework and concerns of the assisted suicide advocates pushing this latest Trojan Horse.  Please read my friend’s comments below and keep them in mind when reading the article that follows them:

Both my parents were diagnosed with Alzheimers as was one sibling of each. Three have now died in the past three years, and mother has little time left. All her rights have been stripped of her, and none of her desires are being respected. She’s currently in a nursing home which she was adamantly against and my life revolves around visiting as much as possible.

I feed her several meals a week and see the time and effort spent on others, which is generally a half-hour and never as much as 45 minutes. From what I see I can safely assume what mother’s feeding is like when I’m not there. I spend sometimes as long as an hour and a half. She now probably weighs less than 80 pounds by the way.

What I’ve noticed is that her appetite is as fickle and fleeting as her moods. She can become very anxious and angry but can be redirected, and it can change dramatically over a short time. Again, staff don’t have the time required so without me, it doesn’t occur. There are times when she doesn’t want food and will be adamant, which is when I quit trying of course. I understand that’s part of her condition. However, if I don’t attempt for several minutes, she may feel very differently soon. My point is that presumptions are made due to time constraints and minimal staffing rather than what the person wants or needs. (End comments)

 

New ‘Instructions’ Could Let Dementia Patients Refuse Spoon-Feeding

JoNel Aleccia, Kaiser Health News

People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out.

They could document their wishes to halt such interventions — and have them honored — using advance directives.

That includes patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity.

But the practice has rarely — almost never — included provisions to refuse food and fluids offered by hand. Until now.

A Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.

The group End of Life Washington, or EOLWA, which assists people using the state’s 2009 Death with Dignity Act, recently posted new “Instructions for Oral Feeding and Drinking” on its website.

Aimed at people with Alzheimer’s disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There’s another document explaining the do’s and don’ts of using it.

The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, said Sally McLaughlin, executive director of EOLWA.

“We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they’re being force-fed,” McLaughlin said. “Many, many folks understand that as they stop eating, they would like no one else to feed them.”

Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such “instructions” could be used essentially to starve the elderly or incapacitated.

“It really is troubling,” said Stephen Drake, research analyst for the disability rights group Not Dead Yet.

He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.

“It really is a big game changer in the number of people whose lives can be ended when they’re in vulnerable situations,” Drake said. “In legal situations, this is a door-opener.”

Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.

“What we are saying is that there are objective and somewhat subjective conditions in the future where you can say ‘I’m giving you instructions now to help you interpret my wishes,’” said Bob Free, a Seattle lawyer who helped draft the document. “We have never really seen a standard form or advance directive to govern this.”

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.

“If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states.

But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.

And the guidelines tell caregivers to respect those actions.

“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states. It adds that the “reflexive opening” of the mouth should not be interpreted as consent to eating.

“An analogy is the difference between when a knee is tapped with a hammer and the reflexive response is a knee jerk and when a person voluntarily raises his or her knee,” said Free. “We think this is a fairly objective test, which in real life will be clear.”

The new guidelines won’t be binding — legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

“The hard part about advance directives is even though you put your wishes there, it doesn’t mean a medical professional will honor it — or that a facility will honor it,” said Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying.

The new forms follow two recent high-profile cases in which family members said dementia patients were kept alive with spoon-feeding by caregivers, despite written requests to stop.

Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer’s in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family’s protests. A court ruling upheld that action, saying that food is basic care that cannot be withdrawn.

Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer’s disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.

Such cases horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, said she updated her living will herself within days of reading about Harris.

“I thought, ‘Wow, I need to be much more specific,’” said Christensen, who appended notes saying she doesn’t want assisted feeding if she can no longer feed herself. “I don’t think anybody thinks about this until they’re too far into it.”

Free, 71, said he plans to fill out the new documents himself.

“It’s been a personal desire of mine to have a dignified death,” he said. “The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing.”

Whether VSED, which stands for “voluntarily stopping eating and drinking,” can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025. Paul Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., said some people want to avoid the most debilitating stages of the disease.

“It’s not misery they’re afraid of,” he said. “They just don’t want years of withering.”

The EOLWA document is a novel tool, but it may not go far enough, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she said. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.

Until now, however, there have been few models for articulating those desires.

“It certainly is an improvement over no previous mention of hand-feeding,” Schwarz said. “Maybe this is where it must begin.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

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.