Coleman Quoted in Gothamist: The Pandemic Threatened Their Ventilators

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[Ed. note: We previously reported on the court case discussed in the article below here: Not Dead Yet, NMD United, et al. Sue NY Governor On Ventilator Re-Allocation Guidelines.]

The Pandemic Threatened Their Ventilators. Will NY Officials Change Course Before The Next Crisis?

BY CAROLINE LEWIS
MAY 27, 2021

When COVID-19 struck New York last spring, many people feared they would land in the hospital and get put on a ventilator. But Diane Coleman was worried if she went to the hospital, the ventilator she relies on to breathe would get taken away.

Her trepidation stemmed from guidance released by the state Health Department in 2015 on how ventilators should be allocated during a pandemic. The document, composed by a panel of medical ethicists, lawyers, and health care professionals that included the state health commissioner, provides a range of factors that should be considered when allocating ventilators, including a patient’s likelihood of survival.

One section said any patient who arrived at a hospital with their own ventilator could have it taken away for another person in desperate need. “They are assessed by the same criteria as all other patients, and the possibility exists that these patients may fail to meet criteria for continued ventilator use,” read the advisory, which was crafted in preparation for flu pandemics.

Coleman is president and CEO of the disability rights organization Not Dead Yet, which is among the plaintiffs challenging the guidance in a federal class-action lawsuit against Governor Andrew Cuomo, State Health Commissioner Dr. Howard Zucker and the New York State Department of Health. The complaint, filed in October, says the guidelines discriminate against people with disabilities and discouraged some ventilator users from seeking acute care during the pandemic “for fear of being forcibly extubated, which would lead to their deaths.”

Coleman has a rare form of muscular dystrophy called Bethlem myopathy and says her diaphragm is too weak for her to breathe independently. She uses a ventilator 22 or 23 hours a day.

“Luckily, I did not need to go” to the hospital, said Coleman, who lives in Rochester. “But I was very much worried about it because the guidelines seemed very clear that if I did go to a hospital, either for any other type of medical issue or COVID, then I would have the risk that my ventilator could be reallocated.”

The state has sought to dismiss the case, arguing that the guidance was non-binding and wasn’t adopted as an official policy before or during the COVID-19 response. The state also emphasized that the New York State Task Force on Life and the Law recommended the guidelines, not the Department of Health. The DOH, however, is listed on the title page of the document, and Health Commissioner Zucker wrote the introduction.

When asked if any chronic ventilator user’s device was removed during the pandemic, the DOH didn’t respond. The case’s plaintiffs did not put forward any allegations that health care providers applied the guidance during COVID-19 to the detriment of a chronic user.

“We’re not saying anyone’s ventilator was taken, but if it comes to that, it’s too late,” said Britney Wilson, an attorney for the plaintiffs. “Emergency plans like this are by themselves discriminatory.” . . .

To read the full article, go here.

Great Op-Ed By NDY UK Founder Baroness Jane Campbell

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The Government should be helping people to live
– not die through assisted suicide

The Telegraph
Baroness Campbell
26 May 2021

Today a Bill to legalise assisted suicide is being presented in Parliament. Such a change has been considered many times in the past but has always been rejected for the same reasons. Despite what the propaganda says, the majority of people it is intended to help didn’t ask for it and don’t want it. In fact we are fearful of any change in the law that would weaken the protection we rely upon now.

Those seeking to change the law say it is intended to alleviate “intolerable suffering” only for those with a terminal illness and less than six months to live. Whether or not a person meets these criteria will be determined by two independent doctors and a High Court Judge. In effect, they will be required to endorse the suicidal person’s view that they would be better off dead and the state should assist in that objective.

At present, the law treats all suicidal persons equally. We try to deter them from carrying out their wishes. We protect them from themselves by giving support. It is a very necessary protection and must not be withdrawn from those of us who are ill or disabled, especially at our lowest points, when we might question the point of going on, particularly if those around us believe we would be better off dead.

In every jurisdiction where a form of assisted suicide has been legalised, the numbers dying in this way increase over time. It is logical that it should. Why deny someone their wish when safeguards are open to interpretation, or criteria have been changed?

The government should be helping people to live – not to die through assisted suicide.

The best way to help the terminally ill is to better invest in palliative care and find a solution to the social care crisis. Once assisted suicide is law, society has endorsed it as an option, equal to that of life. Those who had never considered it will be told that it is an option. Their families, friends, health and social care professions will all know it as an option too. It is hard enough already for those of us with terminal illnesses and disabilities to get the support services we need to live active independent lives. For essential support to become merely the alternative option to assisted suicide terrifies us. That is why no organisation of terminally ill or disabled people has sought a change in the law. Why do others think they know what’s best for us?

Whilst many reasons are given, they boil down to a fear of illness and disability and the changes to independence that may bring: loss of mobility, loss of income, loss of respect, neglect and, potentially, abuse. Fear of relying on others and of being a burden. It tells us a lot about how society views terminally ill and disabled people.

Of course, the vast majority of us don’t see ourselves in that way. We don’t want the special treatment of an assisted suicide. We want basic human rights to live with dignity and respect so we can enjoy life. With the right support, most of us are pretty good at it.

Covid-19 has been described as “this generation’s polio”. Its effects have been felt by everyone and, for many, it has had life-changing consequences. According to the latest figures, disabled people make up 59% of all COVID-19 related deaths. In meeting this challenge the country has come together in universal praise of those working on the NHS* and social care front lines. The desire for them to receive the funding and resources needed to expand and improve services has been overwhelming.

Legalising assisted suicide, especially now, should not be part of the solution. We need help to live – not to die. That means investment in palliative care, solutions to the social care crisis and continued financial support for our world-class NHS.

Last time the House of Commons considered legalising assisted suicide (in 2015), it was rejected by a majority of 212, affirmation that terminally ill and disabled people are entitled to equal protection under the law. What has changed in the last six years to require the issue to be debated again? Certainly not the views of palliative care doctors or geriatricians, who remain firmly opposed to a change in the law.

Have the lives of terminally ill and disabled people improved to the extent that they are now regarded as equal members of society? Clearly not, because why otherwise would supporters of today’s bill seek to limit its effect to only us?

*National Health Service

Link to article.

Marilyn Golden: Keep the safeguards in California’s ‘End-of-Life’ law

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[This op-ed appeared in the May 13, 2021 edition of Capitol Weekly.]

Keep the safeguards in California’s ‘End-of-Life’ law

BY MARILYN GOLDEN POSTED 05.13.2021

Assisted suicide is already legal in California through the so-called End-of-Life Option Act, narrowly passed by the California Legislature and signed by then-Gov. Brown in 2015. The bill was opposed by both Democrat and Republican Assembly members and Senators, but passed during a contested Special Legislative Session on Medi-Cal funding.

Despite the bill’s narrow passage, now just a few years into the new law, its proponents want to eliminate some of the very “safeguards” they used as arguments to pass their bill.

The new bill, Senate Bill 380 by Sen. Susan Eggman (D-Stockton), would eliminate the 2026 sunset provision that doctors, patient advocates, and legislators included to undertake a thorough examination of California’s experience with this controversial law. This new bill will also eliminate the 15-day safety period to receive deadly prescription drugs, an important protection because studies such as one from The Lancet show the high percentage of patients who change their minds after deciding to hasten their deaths.

This rush to erode the safeguards included in the 2015 End of Life Option Act is dangerous public policy.

During the 2015 debate on the End of Life Options Act, former State Senator Bill Monning (a bill author) noted in Healthline that, “co-authors on this bill … endeavored to build in protections that are stronger than any of the states where this has been practiced.”

Monning’s statement is untrue because the bill’s minimal  protections and limited data, when compared to other states where assisted suicide is legal, remain central to its problems today.

The Death with Dignity National Center, supporters of the End of Life Option Act, contradict this new effort to eliminate patient protections in their website FAQs, as recently as April 12, 2021. The notation states, “Death with dignity statutes contain a number of safeguards, protecting patients from abuse and coercion … the patient must make two oral requests, at least 15 days apart.” (Source: https://www.deathwithdignity.org/faqs/). But in this new bill, proponents want to eliminate this very “safeguard” they once held up.

This rush to erode the safeguards included in the 2015 End of Life Option Act is dangerous public policy. There is simply no data or science to support removing them so soon.

Annual reports on the End of Life Option Act required by the State of California do not contain any data whatsoever detailing complications or patients’ reasons for requesting the lethal drugs. For the limited data that is provided, too much remains listed as “unknown.” Over the past year, due to the COVID pandemic, we have become sadly familiar with how important medical and scientific data are in making informed public policy decisions; especially those involving life and death.

With the benefit of hindsight, it appears that the protections proponents touted as safeguards were no more than a ruse to get the original law passed.

For example, the latest California annual report on the End of Life Option Act released in July 2020 reports that 10% of those requesting the lethal drugs had an “unknown” insurance coverage, and it was “unknown” whether 7% ever received information about available hospice or palliative care options.

In a March 2021 New York Times interview with Dr. Diane E. Wright, longtime Director of the Center to Advance Palliative Care at Mount Sinai Hospital, Dr. Wright noted, “All the heartfelt adherence to restrictions that are announced when you first get the public to vote in favor of this go up in smoke once the practice is validated.”

Indeed, with the benefit of hindsight, it appears that the protections proponents touted as safeguards were no more than a ruse to get the original law passed.

Given the contentious history of the End of Life Options Act, as well as a patient healthcare infrastructure pushed to the breaking point by the COVID pandemic, it is neither wise nor appropriate to remove any of the law’s protections.

Further, any effort to expand assisted suicide policy in California is in stark contrast to the on-going, unresolved debate on healthcare disparity and inequity within ethnic and minority communities who lack access to palliative, hospice and other care for serious and terminal diseases.

Prioritizing the right to die rather than the basic means needed to live is clueless at best, if not disingenuous.

Enough of the doubletalk, and the double standards, that accompanies the double jeopardy that the repeal of assisted suicide’s protections would no doubt unleash. The minimal protections established in 2015 are just as necessary now, perhaps even more so.

No matter what they say, proponents of assisted suicide can’t have it both ways.
—
Editor’s Note: Marilyn Golden is senior policy analyst at the Disability Rights Education & Defense Fund.

Joan Cavanagh Had Some Words for the CT Mirror Which They Didn’t Print, So We Will

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I am tired of reading stories in the Mirror and elsewhere that minimize or hardly bother to mention the strong opposition to Assisted Suicide legislation that has been successfully spearheaded by Second Thoughts Connecticut and is embraced by many progressives and other disability rights activists. The slick and well-funded marketing campaigns of the Hemlock Society (re-branded Compassion and Choices) have helped to make it appear that the only significant opposition comes from the Catholic Church. Nothing could be further from the truth. As someone who has worked against the death penalty, for reproductive freedom (including abortion rights), against racism and white supremacy, is a supporter of Single Payer health care, and has also had to fight attempts by the existing medical system to withhold life-saving treatment, I for one consider my long-term activism against these dangerous bills a seamless part of my beliefs and actions for human rights.

“My life, my death, my choice,” the slogan of Compassion and Choices, found its way to a sign at a Trump supporters’ super-spreader event last year, which is not surprising, since the implication is that individual behavior has no impact on the lives of others. While it may provide an individual “choice” for a select few, among its many evils, the legalization of Medical Assisted Suicide also opens the door to increased rationing of health care, which is an existential threat to the many.

Anyone who has been victimized by medical practitioners’ judgments about a patient’s “quality of life” or lack thereof coupled with institutional mandates to cut costs and insurance companies’ refusals to pay for life-saving procedures can see how easily this so-called choice can morph into no choice at all for certain categories of people. The COVID crisis has dramatically revealed the ways in which poor, disabled, elderly, black and brown people are already discriminated against within the medical system. It is appalling that our elected officials refuse repeatedly to listen to the lived experience of so many of us but keep bringing up these bills to allow our doctors to kill us year after year after year. And it is long past time that the news media do its job to report on this issue by going beyond the false narrative that proponents try to spin as to who opposes this legislation, and why.

Joan Cavanagh

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.