Federal study finds assisted suicide laws rife with dangers to people with disabilities

The National Council on Disability (NCD) has issued the second in a series of reports on Bioethics and Disability. NCD’s release on the report today focuses on “a federal examination of the country’s assisted suicide laws and their effect on people with disabilities, finding the laws’ safeguards are ineffective and oversight of abuses and mistakes is absent.”

The Disability Rights Education & Defense Fund (DREDF), which worked in partnership with NCD on the series of reports, summarizes this groundbreaking work:

Despite the growing consensus that disability is a normal part of the human experience, the lives of people with disabilities are routinely devalued in medical decision-making. Negative biases and inaccurate assumptions about disabled people persist. In medical situations, these biases can have serious and even deadly consequences.

Beginning on September 25, the National Council on Disability (NCD) is releasing a series of reports on bioethics and disability. The five reports were developed through a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF), which appreciates and acknowledges the valued work of our partners, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law and Not Dead Yet, in creating the series.

Each report examines the status and future of how a variety of key issue areas – including organ donation, assisted suicide laws, genetic testing, systems such as Quality Adjusted Life Years, and assumptions about medical futility – are developing due to technological and scientific advances as well as legal changes and healthcare delivery. A combination of original research, stakeholder and scholar interviews, literature reviews, reviews of media reports, and legal analysis is used to examine each topic. Each report includes findings and makes recommendations to lawmakers and policymakers that we hope will ensure that the lives of people with disabilities are valued on an equal and nondiscriminatory basis with all others.

Not Dead Yet specifically consulted on the topics of organ donation, assisted suicide and medical futility.

NCD’s release on today’s assisted suicide report includes the following details, and an example of a seriously mistaken cancer prognosis personally experienced by the NCD Chairman, Neil Romano:

Despite the belief that pain relief is the primary motivation for seeking assisted suicide, in Assisted Suicide Laws and their Danger to People with Disabilities, NCD found that the most prevalent reasons offered by someone requesting assisted suicide are directly related to unmet service and support needs, which NCD urges policy makers respond to through legislative changes and funding.

“Assisted suicide laws are premised on the notion of additional choice for people at the end of their lives, however in practice, they often remove choices when the low-cost option is ending one’s life versus providing treatments to lengthen it or services and supports to improve it,” said NCD Chairman Neil Romano.

Closely examining the experience in Oregon, where the practice has been legal for 20 years, NCD found that the list of conditions eligible for assisted suicide has expanded considerably over time, including many disabilities that, when properly treated, do not result in death, including arthritis, diabetes, and kidney failure.

Assisted Suicide Laws and their Danger to People with Disabilities also notes suicide contagion in states where assisted suicide is legal; as well as a loosening of existing safeguards both in states with legalized assisted suicide and states considering bills to legalize.

In the report, NCD details limitations of purported safeguards of assisted suicide laws, finding:

• Insurers have denied expensive, life-sustaining medical treatment, but offered to subsidize lethal drugs, potentially leading patients to hasten their own deaths;
• Misdiagnoses of terminal disease can cause frightened patients to hasten their deaths;
• Though fear and depression often drive requests for assisted suicide, referral for psychological evaluation is extremely rare prior to doctors writing lethal prescriptions;
• Financial and emotional pressures can distort patient choice;
• Patients may “doctor shop” limitlessly to find a physician who will obtain a colleague’s concurrence and prescribe a lethal dose

“As someone who has battled cancer and been given weeks to live and am still thriving years later, I know firsthand that well-intending doctors are often wrong,” said Mr. Romano. “If assisted suicide is legal, lives will be lost due to mistakes, abuse, lack of information, or a lack of better options; no current or proposed safeguards can change that.”

NCD concludes its research with recommendations, including highlighting the need for:

• Federal research on disability-related risk factors in suicide prevention, as well as on people with disabilities who request assisted suicide and euthanasia;
• Federal regulation requiring non-discrimination in suicide prevention services; and
• Greater federal investment in long-term services and supports.

The NCD report is online at The Danger of Assisted Suicide Laws. The release dates for the other reports in the series are here, with links to the full reports as they become available.

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Federal study finds assisted suicide laws rife with dangers to people with disabilities

ACLU Threatens to Sue Nursing Home for Refusing to Help Patients Kill Themselves

A retirement home connected to the Catholic Church is being threatened with legal action for not allowing its patients to commit suicide under Hawaii’s new assisted suicide law.

Though there are social service programs and 24-hour hotlines dedicated to preventing healthy, young people from committing suicide, there is a growing movement in America to push suicide on those who are old or sick. They euphemistically call it “aid in dying,” though people do not have to be dying to qualify for assisted suicide.

Earlier this year, Hawaii became the sixth state to legalize assisted suicide, joining California, Colorado, Oregon, Vermont and Washington, as well as the District of Columbia. The law is slated to go into effect in January.

Those who oppose suicide in all its forms are being targeted by powerful liberal groups.
Last week, the American Civil Liberties Union sent a letter to the Kahala Nui retirement home in Honolulu demanding that it comply with the new anti-life law, the AP reports.

The elderly care home recently notified patients that they will not be allowed to commit assisted suicide there, according to the report. The Catholic Church, which owns the land where the nonprofit elderly care home is located, opposes assisted suicide, euthanasia, abortion and other life-destroying practices.

The ACLU claims that amounts to discrimination.

Here’s more from the report:

Mateo Caballero, the legal director of the ACLU of Hawaii, said the home was discriminating against those who weren’t Catholic and was telling residents they have to conform to the Catholic Church’s teachings.

“I couldn’t think of a more clear violation of the Fair Housing Act and Hawaii’s own anti-discrimination laws,” he said.

Caballero said he’s not aware of another case in which a retirement home prevented its residents from using a medically assisted suicide law.

Caballero said he wants the home to send another note to residents rescinding its May 11 memo and inform residents it was wrong. Caballero said he hopes the ACLU can work with the home on the issue. If not, he said the ACLU would weigh its options, including a potential lawsuit.

A spokesperson for the home said they do not discriminate against patients based on religion, race, sex, color or anything else. Executive Director Wendy Wong said they have asked their legal counsel to look into the ACLU’s demands.

The Hawaii law allows adults with a terminal diagnosis of six months or fewer to ask a doctor for prescription drugs to kill themselves. But the law — and the six others like it in the U.S. — is riddled with loopholes that fail to protect elderly and disabled people from abuse.

Not Dead Yet, a disability rights group that opposes assisted suicide, has documented on-going abuses of assisted suicide laws in Oregon and Washington, the first two states to legalize the deadly procedure. The group said both states prescribe the lethal drugs to people who are not terminally ill nearly every year.

There also are confirmed stories of patients being denied medical treatment coverage and offered assisted suicide drugs instead.

Stephanie Packer, a mother of four struggling with terminal scleroderma, is one of them. The California woman said her state Medicare plan initially refused to pay for her medical treatment but offered to pay for assisted suicide drugs instead. She has lived five years longer than doctors predicted, the National Catholic Register reported in June.

In separate incidents, Oregon cancer patients Barbara Wagner and Randy Stroup also were denied medical treatment by their state health insurance plans and offered doctor-prescribed suicide instead.

Family members also have witnessed their loved ones being pressured to consider suicide instead of medical treatment. Oregon resident Kathryn Judson said doctors tried to pitch assisted suicide to her sick husband while she was out of the room one day. Judson said they switched doctors, and her husband lived for five more years.

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ACLU Threatens to Sue Nursing Home for Refusing to Help Patients Kill Themselves

Opening Salvo on New York’s 2018 Assisted Suicide Bill

Disability activists from the Albany area donned bright pink Not Dead Yet t-shirts, carrying leaflets and signs to voice strong opposition to legalization of assisted suicide at a press conference held by proponents of this year’s bill.

Image description: Blond woman with glasses holds sign saying “Assisted Suicide = Deadly Discrimination” with a skull drawn below the words.

Image description: Two men wear bright pink t-shirts, with the words “Not Dead Yet” visible on one man, who is using crutches. The other man holds a sign which says “Assisted Suicide World’s Cheapest Healthcare”.

Local television news covered the press conference and protest, and included brief interviews with Kathryn Carroll (pictured above) and Gregg Beratan, who are from the Center for Disability Rights (CDR), in the news video. CDR’s policy position on the issue is here.

The Staten Island Advance also covered the story in Should terminally ill in N.Y. have access to aid in dying? The coverage included some key issues of concern:

Diane Coleman, president and CEO of Not Dead Yet, an advocacy organization in Rochester, cited several issues with the legislation.

Coleman said that obstacles in obtaining quality health care could lead individuals to opt for aid in death.

“There are a lot of issues getting quality care,” she said. “It gives them an easy way out.”

“That’s just reality,” she continued. “That our insurance companies are going to do the cheap thing over the right thing.”

Coleman also cited a lack of oversight after a prescription is given to a patient as one of the many issues with the bill, arguing that they can be coerced into opting for aid in dying. 

“The bills themselves do not include any type of independent witnesses at the time of ingestion,” Coleman told the Advance. “There’s no way to know.”

On the same day, the New York Alliance Against Assisted Suicide issued a press release launching the Alliance’s new website, noting that it “that will enhance its ability to work against the legalization of physician-assisted suicide in the Empire State.” Not Dead Yet and the Center for Disability Rights are part of the NY Alliance. As CDR’s Director of Advocacy Stephanie Woodward said in the release:

The new website, NoSuicideNY.org, offers readers the latest news on the physician-assisted suicide debate in Albany; talking points to equip allies for effective advocacy; and video testimonials from terminally-ill persons, disabled people, and others whose life experiences have led them to speak out against doctor-assisted death. Significantly, the website also includes an action alert that allows New Yorkers to e-mail their legislators about this important issue.

Full Article & Source:
Opening Salvo on New York’s 2018 Assisted Suicide Bill

'Death with dignity' devalues disability

By Mike Volkman, Commentary

The debate over assisted suicide continues. A bill has not passed in New York yet, but it keeps getting reintroduced every session in the legislature. Its proponents everywhere keep using a catchphrase, "death with dignity," to describe it. They even use it as a title for it.

The main points of their argument for why we need to legalize assisted suicide is that there are incurable diseases that will end up killing people anyway, and those diseases cause intractable pain. They say they have a right to choose when and how they die, so they should have the freedom to make that choice. It is a quick and easy argument.

It's not so simple. Doctors are not perfect and don't know everything. It is impossible to make an accurate prediction with how much time a person has left. The late Ted Kennedy was told he had months, but he hung on for several years. Insurance companies deny treatments based on many factors, but in states that now allow assisted suicide they are more willing to pay for lethal doses when they are prescribed. If people are making choices based on economic factors, that is coercion, not freedom.

Another major factor that it is deeply ingrained in Western cultures is that people are better off dead than being disabled. You can find references to studies on the Not Dead Yet website and blog that show how common it is for people to choose to die not because they are in intractable pain, but because something changed in their circumstances and they acquired a disability. Nobody ever expects this to happen, and when it does they are confronted with fears they have had their whole lives. Those fears are reinforced by the most respected institutions in society: family, government, the schools, religious teachings, medicine, architecture, the arts, and the press, just to name a few. People are seriously scared of the idea that they might need some help in order to stay independent.

What does it mean to die with dignity? Or the opposite, what is death without dignity or with indignity? There is no legal definition. It is a phrase people like to use with the hope that it is sufficient and accepted. Remember the bit George Carlin did in 1992 about euphemisms? They hide the truth.

Legislative bodies should come up with legal definitions for the term. They should specify what constitutes dignified ways of dying. When they come to define what are undignified ways of dying, the challenge is how to do it without describing circumstances that go with disability. Because if they can't get around that, then it makes one thing perfectly clear.

That one thing is that it is in the interests of the state to protect all lives except those of people with disabilities. If the presence of a disability, whether it is from birth or from later acquisition, makes it justifiable to place a value judgment on a person for a life-or-death decision, that makes an entire class of people subject to a double standard. That is state-sponsored bigotry allowing up to one sixth of the population to be discarded and unprotected.

Afraid of needing help? Imagine living in a world in which no one was willing to provide it. Afraid of tubes? Imagine a time when they weren't invented. Today's tubes make life much more bearable and livable for those of us who use them. Like me.

Choice is free when people and states do all that they can to help us live better.

Mike Volkman of Albany is a longtime disability rights advocate. He is a member of the board of Not Dead Yet.
 
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'Death with dignity' devalues disability

Three years later, this terminally ill man is glad he rejected assisted suicide

Washington D.C., Oct 4, 2017 / 03:01 am (CNA/EWTN News).- Three years ago, J.J. Hanson received a diagnosis that no one wants to hear. He had terminal brain cancer, and doctors said his time was short – he likely had about four months to live.

“The surgeon said my cancer was inoperable and three different doctors told me there was nothing they could do,” Hanson said.

He was diagnosed with glioblastoma, the same type of brain cancer that led Brittany Maynard to choose to take her life through assisted suicide in a high-profile case in California in 2014.

“I would have easily met the criteria for accessing assisted suicide if I lived in a state like Oregon or California, where assisted suicide is legal,” Hanson said.

“In a dark moment, I might have opted for it, but I am fortunate to have a supportive family, and was given the opportunity to pursue cutting edge, experimental treatment instead,” he said. “Here I am three years later, enjoying the arrival of our second son and living life to the fullest.”

Today, Hanson is president of the Patients Rights Action Fund, which opposes efforts to legalize assisted suicide. The group is currently backing a Congressional resolution objecting to assisted suicide on the grounds that it puts all people at risk.

“When assisted suicide becomes accepted public policy it threatens the lives of everyone, especially the poor, elderly, mentally ill, disabled, and terminally ill,” he said. “Why? Well, for starters, abuse is unavoidable and doctors are fallible. Assisted suicide policy also injects government insurers and private insurance companies with financial incentives into every single person’s end of life decisions.”

House Congressional Resolution 80, proposed by Rep. Brad Wenstrup (R-Ohio) on Sept. 26, has nine co-sponsors from both parties. Besides Hanson’s group, other supporting groups includes the National Council on Independent Living, the Disability Rights Education & Defense Fund, Not Dead Yet, ADAPT, and Physicians for Compassionate Care Education Fund.

Rep. Wenstrup and the resolution’s sponsors said doctor-assisted suicide “undermines a key safeguard that protects our nation’s most vulnerable citizens, including the elderly, people with disabilities, and people experiencing psychiatric diagnoses. Americans deserve better.”

“When governments support, encourage, or facilitate suicide – whether assisted by physicians or others – we devalue our fellow citizens, our fellow human beings,” the legislators said. “That should not be who we are.”

The proposed resolution says that assisted suicide “puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system.” It notes that the purported “safeguards” limit the laws to patients with a prognosis of six months or less to live, but such people “outlive their prognoses every day.”

The federal government “should ensure that every person facing the end of their life has access to the best quality and comprehensive medical care,” including palliative or hospice care, says the resolution. It says the federal government “should not adopt or endorse policies or practices that support, encourage, or facilitate suicide or assisted suicide, whether by physicians or others.”

States with legal assisted suicide have come under criticism for lacking adequate safeguards to protect those who are depressed or pressured into requesting assisted suicide. Reporting standards for assisted suicide are substandard, according to the resolution. It also objects that some states require physicians to conceal assisted suicide and to list the cause of death as the underlying condition.

It adds that the low cost of lethal medication will make it more likely to be recommended to disadvantaged and vulnerable people.

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Three years later, this terminally ill man is glad he rejected assisted suicide

Diane Coleman Honored

Diane Coleman, CEO/President of Not Dead Yet, holding the Adele Carlson Advocacy Award at the Gala.

The award recognizes individuals who have had a significant impact on the Disability Community.

#ROCtheADA — at Rochester Museum & Science Center.

See:
Not Dead Yet