Cathy Ludlum’s Letter Published: Crossing the Line on Assisted Suicide

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Second Thoughts Connecticut leader Cathy Ludlum’s letter was published in the Hartford Courant on Sunday, May 2nd. This letter is part of discussions following the death of the state’s assisted suicide bill in the General Assembly Judiciary Committee.

Crossing line on ‘aid-in-dying’ bill

Head and shoulders photo of Cathy Ludlum, a woman in mid 50s with glasses and wheelchair headrest.

There is nothing wrong with vigorous debate. People have strong opinions, and the only way to create sound policy is for legislators to hear all sides. Unfortunately, Dr. Bluestein’s “Aid-in-dying bill is now personal” crosses the line [Letters to the editor]. By casting opponents of assisted suicide as having “no compassion, no empathy, no sense of decency,” he overlooks some basic questions. First, isn’t it more compassionate to provide a dying person with support, affirmation of dignity and first-rate pain-and-symptom management than to create a society in which ending one’s own life is seen as the highest good? Second, before accusing others of having no empathy, what might one learn from assisted-suicide opponents who have accompanied loved ones through difficult last days? Third, isn’t decency mingled with integrity and truth?

HB 6425 fails in part because it would have required falsification of the death certificate, did not prohibit an heir from witnessing the prescription request, and did not sufficiently limit the definition of “terminal illness.” These are flaws in the bill itself, identified by opponents in a discussion of policy. These concerns do not come from political or religious affiliation, and they should not be dismissed as such.

Cathy Ludlum, Manchester

Online link is to all the letters in today’s paper is here.

Anita Cameron Testified On Opposition To Assisted Suicide Bills In BIPOC Communities

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Anita Cameron, NDY’s Director of Minority Outreach, testified to the Rhode Island Senate Judiciary Committee at its Zoom hearing on the state’s assisted suicide bill on Monday, April 26. In a brief two-and-a-half minutes, she shared her mother’s story of a very mistaken medical prognosis as well as opposition to assisted suicide in communities of color. Below is a recording of her strong testimony, followed by a transcript.

Testimony of Anita Cameron in opposition to Rhode Island Bill S 775, April 26, 2021

Thank you, Madame Chair and members of the committee. My name is Anita Cameron. I’m Director of Minority Outreach for Not Dead Yet. It’s a national disability rights organization opposed to assisted suicide.

So I’m here to express opposition to S775. There are many reasons to oppose this bill and others like it. And here are some:

Number 1. This bill puts disabled, seniors and sick people in grave jeopardy. Doctors often make mistakes when determining people to be terminal. I know, my mother was determined to be terminal, yet survived almost 12 years after that diagnosis. She passed away on February 1st of this year.

Number 2. According to the Oregon report, the top five reasons that people request assisted suicide, which is loss of autonomy, loss of the ability to do activities that brought pleasure, loss of dignity, loss of control of bodily functions, and feeling of being a burden, are disability-related psychosocial issues that have not been effectively addressed, not pain or fear of it as proponents claim.

Number 3. According to various reports, Blacks in particular almost never request assisted suicide, especially if they’re poor. And that’s borne out in a Massachusetts referendum results that show that poor Blacks and Latines and Whites voted overwhelmingly against assisted suicide in that state. And in fact, around the nation, assisted suicide is requested almost entirely by wealthier, educated whites.

So bills like S775 are never safe. And rather than assisted suicide, people need effective treatment for their conditions, and services and support along with options like psychotherapy, palliative care, and palliative sedation. Death should never be an option in healthcare.

Thank you very much.

John Kelly’s Compelling Testimony Opposing Rhode Island Assisted Suicide Bill S0775

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John Kelly testified to the Rhode Island Senate Judiciary Committee at its Zoom hearing on the state’s assisted suicide bill on Monday, April 26. Members of the public who testified were severely limited in the time allowed, so below is John’s excellent full written testimony, which is well worth the read. [Tomorrow, we will post Anita Cameron’s oral testimony, recorded and transcribed. Those who have heard Anita speak know that she really delivers. Stay tuned!]

John B. Kelly
Testimony in strong opposition to S 775
 “Lila Manfield Sapinsley Compassionate Care Act”
Judiciary Committee

April 25, 2021

Chair Coyne, Vice Chair Archambault, Members of the Judiciary Committee:

I am the New England Regional Director for Not Dead Yet, the national disability rights group that has long opposed assisted suicide. I am also the Director of Second Thoughts Massachusetts: Disability Rights Advocates against Assisted Suicide.

Like all assisted suicide bills, S 775 puts people in danger of premature death. That’s because deadly mistakes and abuse are impossible to prevent, and the harm – wrongful death – impossible to reverse.

The bill is also divisive, putting the wishes of the wealthier, whiter classes of people above the objection of other communities. Black and Brown communities overwhelmingly oppose legalized assisted suicide, as do working-class white people. People who already receive later and less care will more likely be written off as having a low “quality of life” when they have the same symptoms that prompt more privileged people to seek assisted suicide.

The response to COVID-19 has laid bare the racism inherent in our broken medical system, such as the case of Michael Hickson, a black Texan quadriplegic with COVID-19, who was refused treatment because of his “quality-of-life.”

INSURERS: The bill, despite its promise of “end-of-life options,” ultimately takes choice away from people. That’s because real choice resides with insurers, whose profit-maximizing denials of prescribed treatments can make you terminal. Because assisted suicide is always the cheapest “treatment” available, it encourages insurers to reject traditionally covered treatments. That’s already happening in states where assisted suicide is legal.

Nevada Dr. Brian Callister reported a few years ago that two of his patients were denied routine treatments with 70 percent cure rates by their respective California and Oregon insurance companies.  They would only pay for hospice and assisted suicide. Shortly after assisted suicide became legal in California, Stephanie Packer, a young mother with scleroderma, was denied her prescribed treatment but learned that her assisted suicide copay would be $1.20.

MISTAKES. In 2014, CBS News reported that physician misdiagnosis affects 12 million Americans yearly, putting half at risk of severe harm. Studies show that 12%-15% of people who enter hospice outlive their six-month prognosis.

In its 2020 report, Oregon finally acknowledged the numbers of people who outlive their six-month terminal prognosis. In 23 years, 77 people or 4% of the total people with prescriptions have outlived their prognosis. That means that another group of people, probably more than 100,* cut short their lives out of misplaced trust in their doctors. That 4% figure happens to match the percentage of people sentenced to death who are innocent. That’s one of the main reasons that people oppose capital punishment. If those people’s lives are valuable enough to cause people to reject capital punishment, an even greater percentage of people who lose good years of their lives to assisted suicide should be reason enough to stop the practice.

TV star Valerie Harper was told incorrectly she had months to live because of brain cancer in early 2013. Yet Harper was nowhere near her “end of life.” If, based on the false information given to her, Valerie had exercised her “right” to aid in dying, she could have lost 6 good years of her life, which included starring in a play. She lived until the fall of 2019.

ABUSE: This committee should be skeptical when assisted suicide proponents talk of ideal, loving families, not when our news is full of the deeds of abusive, even murderous families and “friends.”

If S 775 passes, abusers and criminals will be offered a no-questions-asked opportunity to engineer someone’s death. Especially vulnerable will be the 10% of Rhode Island elders estimated to be abused every year, almost always by adult children and caregivers.

The Associated Press reported in 2013 that Oregon realtor

Tami Sawyer also faces charges of criminal mistreatment and theft as a result of a state charge that she stole more than $50,000 after a man [Thomas Middleton] who suffered from Lou Gehrig’s disease moved into her home, named her his estate trustee, deeded his home to a trust, and then died by physician-assisted suicide.

We have no idea how Thomas Middleton really died, but we do know that days later, Sawyer listed Middleton’s property and then stole some of the proceeds. Her crimes came to light, not through any program safeguards, but by a federal investigation into suspicious real estate transactions. The state did not bother to pursue its charges.

Suspicious circumstances like Middleton’s are not included in the Oregon reports. Even when there is evidence of abuse, Oregon has taken no action.

For example, Wendy Melcher died after being given massive doses of barbiturate suppositories by two nurses, one of whom was having an affair with Wendy’s partner. The nurses claimed that Wendy had requested assisted suicide, but she wasn’t even enrolled in the program! Nor did Wendy self-administer.

Yet instead of referring the nurses to authorities for criminal charges, the state nursing board secretly suspended one nurse’s license for 30 days and placed the other on two years “probation.” It took a reporter’s phone call years later to inform Wendy’s devastated family that she had been killed. It seems that the very existence of the assisted suicide law turned evidence of a serious crime into an excusable mistake. The Portland Tribune editorialized, “If nurses — or anyone else — are willing to go outside the law, then all the protections built into the Death With Dignity Act are for naught.”

Despite these examples and more, professional proponents continue to falsely claim that there hasn’t been a single instance of abuse in all the states practicing assisted suicide.

DISABILITY. As you will hear from both proponents and opponents of this bill, people do not make decisions in isolation. That’s especially true when people become disabled due to illness and need physical assistance from other people. When people do not have access to paid in-home caregivers, they are susceptible to feeling like a burden. Indeed, prescribing Oregon physicians reported last year that over 50% of program deaths stem in part from feelings of being a “burden on family and friends/caregivers.”

Proponents are always saying that the initiative must come from the patient, but let’s be real: if prescribing a deadly overdose is a beneficial “medical treatment,” doctors and nurses and family are going to be suggesting it.

Oregonian Kathryn Judson wrote of bringing her seriously ill husband to the doctor.  “I collapsed in a half-exhausted heap in a chair once I got him into the doctor’s office, relieved that we were going to get badly needed help (or so I thought),” she wrote.  “To my surprise and horror, during the exam I overheard the doctor giving my husband a sales pitch for assisted suicide. ‘Think of what it will spare your wife, we need to think of her’ he said, as a clincher.”

A belief common among people thinking of suicide, whether “conventional” or assisted, is that their deaths will benefit others. The writers of S 775 pretend that as long as someone can “understand or appreciate the relevant facts necessary to make an informed decision,” they do not have “impaired judgment.”

The writers of the bill ignore the reality of depression, which does indeed impair judgment.
As Massachusetts mental health advocate Ruthie Poole has testified,

Those of us in MPOWER are very familiar with the insidious nature of depression. As a therapist once told me, depression does not cause black and white thinking; it causes black and blacker thinking. Absolute hopelessness and seeing no way out are common feelings for those of us who have experienced severe depression. Personally, as someone who has been suicidal in the past, I can relate to the desire for “a painless and easy way out.” However, depression is treatable and reversible. Suicide is not.

A lot of hearing testimony will describe deaths in which pain was not properly treated, but proponents have begun admitting that the emphasis on pain and suffering is a marketing ploy, because as leading assisted suicide practitioner Lonny Shavelson has said, “It’s almost never about pain.” Like Shavelson, former radio show host Diane Rehm emphasizes that assisted suicide is really about “dignity.”

Shavelson and Rehm both point to the Oregon reports, whose first five “end-of-life concerns” deal with “existential distress” (New England Journal of Medicine) over the disabling aspects of their serious illness, from depending on others for care to grief over lost abilities, loss of social status, incontinence, and feeling like a burden.

These reasons suggest a meaning of dignity that depends not on everyone’s inherent worth, but on an ability-based meritocracy. This sort of dignity is fragile and easily lost through disability.  The people whose suicides are informed by these views, proponents admit, tend to be wealthier, whiter, more educated, and people with a strong preference for control.  Their desire to hold onto this privilege must not justify a pro-suicide public policy that endangers everyone else.

The lives of non-terminal” disabled people share many traits with people requesting assisted suicide, but we reject as bizarre and dangerous the notion that personal dignity is somehow lost through reliance on others. That’s why for 50 years the disability rights movement has insisted on funded programs to provide necessary personal care attendant (PCA) services for all disabled people, including people disabled by their serious illness.

S 775 would set up a two-tier system, under which some people get suicide prevention services while others get suicide assistance. The difference between the two groups would be based on value judgments about so-called “quality of life.” Many of us already get told, straight to our face and through medical hostility, that we might be better off dead. Legalized assisted suicide makes that prejudice official policy.

That’s why every leading national disability rights group that has taken a position on assisted suicide has come out against it.

Let’s make sure that people have the choice and supports to live pain- and burden-free at home. As you consider S 775, please think about Rhode Island residents, elders and disabled people – including people disabled by their serious illness – who may be vulnerable and without the sort of support and control assisted suicide proponents take for granted, innocent people who will lose their lives because of this bad social policy.

Invidious quality-of-life judgments have no place in state policy. Please reject this bill and the discrimination it promotes. Thank you.

* Since studies show that 12%-15% of people who enter hospice outlive their six-month prognosis, the 4% who actually waited to take the lethal drugs and outlived their prognosis significantly underestimates the number who could have outlived their prognosis if they had similarly waited.

John B. Kelly
66 Fenway APT 22
Boston, MA 02115
617-952-3302 

NDY Joins Over 80 Groups Opposing “Quality Adjusted Life Years” Measures

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The American Association of People with Disabilities issued the following press release announcing the more than 80 organizations that signed a letter calling on policymakers to reject health policies that discriminate. NDY’s President/CEO was quoted in the release below. The letter is in pdf and text formats, here and here, respectively.

Advocates for People with Disabilities, Chronic Conditions and Older Adults Request Policymakers Reject Health Policies That Discriminate

For Immediate Release: April 14, 2021

Contact: Rachita Singh, rsingh@aapd.com

Washington, D.C. – We are pleased to join the more than 80 organizations that signed a letter calling on policymakers to reject health policies that discriminate. Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities.

Maria Town, President & CEO of the American Association of People with Disabilities (AAPD), stated, “It is disappointing that we still have to fight policies that discriminate by referencing discriminatory metrics to value health care, whether directly or indirectly from foreign governments. This is not a new debate. The U.S. established that QALYs discriminate by devaluing disabled lives as far back as 1992 when HHS rejected their use in Medicaid due to violating the Americans with Disabilities Act (ADA). The Affordable Care Act (ACA) banned their use in Medicare in 2010. We don’t need more ableist policies in a pandemic.”

Julia Bascom, Executive Director at the Autistic Self Advocacy Network, stated, “We agree with the National Council on Disability that the pandemic has provided some harsh lessons, particularly about the implicit and explicit bias against persons with disabilities in healthcare. In this moment, we should be debating how to strengthen federal nondiscrimination laws, not undermining them by reference to discriminatory metrics such as QALYs.”

The Disability Rights Education & Defense Fund, stated, “DREDF and our partners were proud to work with the National Council on Disability (NCD) to develop a series of reports on bioethics and disability, including one that focused on the discriminatory implications of the QALY. The report showed how evaluating medical treatment based on QALYs devalues life with a disability and can limit access to care. We hope this Open Letter, coming after COVID-19 has vividly illustrated how disability barriers and implicit bias persist and can compound other kinds of discrimination despite decades of federal law, encourages policymakers to effectively limit the use of QALYs in health programs and decision making.”

Kelly Buckland, Executive Director of the National Council on Independent Living (NCIL) stated, “On August 5, 2020, the membership of the National Council on Independent Living (NCIL) unanimously adopted a Resolution Opposing the Use of QALYs (Quality Adjusted Life Years) in all decisions concerning health care coverage. The Resolution was jointly developed by Not Dead Yet and the Autistic Self Advocacy Network and resolved that NCIL will work with Congress, the Department of Health and Human Services Office of Civil Rights, Department of Justice, and others to ensure that QALYs are not used in decisions concerning public and private health care coverage. It is great to see so many others are with us in opposing QALYs.”

Diane Coleman, President and CEO of Not Dead Yet, stated, “This open letter is an important statement to demonstrate we are a united voice against discrimination in health care. Were disability rights laws being appropriately enforced, we would not have to publicly state that discriminatory “quality of life” measures should not be referenced or imported from other countries to make coverage and reimbursement decisions in health care. With enforcement, we would not see states actively inviting the use of such discriminatory measures into their Medicaid programs.”

# # #

The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. As a national cross-disability rights organization, AAPD advocates for full civil rights for the over 56 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. To learn more, visit the AAPD Web site: www.aapd.com.

Disability Activists Protest Holding Paralympic Torch Ceremony At Site of Disability Massacre

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In 2016, nineteen people with disabilities were brutally murdered by a former employee of a residential facility in Sagamihara, Japan. NDY reported on this Hate Crime: A killing rampage targets disabled people and on an ONLINE VIGIL FOR THE MURDERED DISABLED PEOPLE OF SAGAMIHARA. We also wrote a Statement on the First Anniversary of the Sagamihara Murders in support of those holding an event in remembrance of the lives lost.

Disability activists in Japan are now protesting a decision to hold the Paralympic Torch ceremony at the site of this horrific massacre, an institution which symbolizes the segregation and dehumanization of people with disabilities. Their Statement protesting this decision is below.

Independent Living Center Ring Ring
President Etsuko Nakao

We are a disability rights organization advocating for community living no matter how severe the disabilities are.  We achieve Independent Living through 24-hour personal assistance support and we have been working to raise awareness about the existence of persons with disabilities.

According to news reports on March 21, Kanagawa Prefecture, Sagamihara-City, and Kanagawa Kyodokai have made decision to bring a flame lightening ceremony of the 2020 Tokyo Paralympic Games to an institution “Yamayuri-en.”

We have lost our words by learning such horrible news.

Furthermore, knowing that they are claiming that “Yamayuri-en to become the origin of Inclusive Society” – we have nothing but deep indignation about this idea.

Even the media seem to be praising this whole concept by the way they are reporting.

This is a statement of protest by people with disabilities against the violation of human rights and outrageous act.

“Yamayuri-en” is a segregated institution that held more than 150 people with disabilities under very poor conditions.  It is a very place that on July 26, 2016 –  19 people with intellectual disabilities were killed and 24 people with intellectual disabilities and 2 staff were injured by an ex-staff.

This worst murder case since the end of World War II horrified people with disabilities around the world and revealed serious discrimination.

Has our society geared by and for the non-disabled already forgot that massacre?

A media report says that “The torch ceremony will be held at “Yamayuri-en”to demonstrate both nationally and internationally the strong determination for the inclusive society.” However, institutionalization is totally opposite of the inclusive society and they are the very place that segregates and denies the existence of people with disabilities.

There are abuse against residents with disabilities at Yamayuri-en before and even after the murder case.

People with disabilities are controlled and deprived of their dignity and human rights in a “detention camp” which can hardly be called a place of living.

How can such a place be the origin of the inclusive society?

This false way of demonstrating the will for the inclusive society is not only an insult to people with disability in Japan, but also leads to international recognition of Japan as a state which violates human rights, as the UN Convention for the Rights of Persons with Disabilities (UNCRPD) clearly states that institutionalization is a form of discrimination against people with disabilities.

No matter how openly operated to the community, the institutions are nothing but institutions as long as it locks up group of people with disabilities.

There are no persons with disabilities who is willing to be admitted in the institutions.

Those who have been killed at Yamayuri-en, their lives were taken instantly on the ground that “people with disabilities have no value to live.”

This case should be recognized as a genocide based on hatred against us, people with disabilities.

After the incident, however, Japan’s Prime Minister said nothing and took no action as a nation to confront with this genocide.

It brings us intense anger that, now again, even the death of people with disabilities are being dominated and used by the culture of the non-disabled and by the nation.

What is “Inclusive Society”, really?

Have you ever once heard the voice of persons with disabilities?

It is simply not possible to realize an “inclusive society” only by non-disabled individuals.

Therefore, we strongly protest the lightning ceremony of the Paralympic Games at “Yamayuri-en” and once again express that, with our very existence as people with disabilities, we confront the idea of eugenics.