Denounce Lethal Anti-Disability Healthcare Policy Advocated by Peter Singer (Change.org)

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As many readers are probably aware, news broke last week that Princeton bioethicist Peter Singer had once again pushed the envelope on his decades-long assault on the value and lives of disabled people.  In remarks broadcast live, Singer asserted that both government healthcare and private insurance can and should deny and/or limit healthcare to people with significant cognitive and/or physical disabilities. In response to this latest outrage from Singer, we have launched a petition on Change.org.

The text of the petition is below. But please go to the site of the petition directly to sign your name on:

Princeton University Professor Peter Singer has a long history of advocating for the legitimization of bigotry in public and healthcare policy arenas. Since about 1980, Singer has promoted public policy that would legalize the killing of disabled infants. At that time, his “claims to fame” were basically twofold: 1) his work on “animal liberation,” which, among other things, defined “personhood” in a way that would make it less moral to kill some animals than to kill some disabled humans, especially infants; and 2) his advocacy of public health policy that would offer parents of a disabled newborn the opportunity to have medical professionals kill the infant.

20 years of that advocacy and accompanying notoriety worked out well for Professor Singer. It worked well enough for Princeton University to offer him a tenured position at that university to teach bioethics in 1999.  The appointment met with a large protest at Princeton – in which hundreds of disabled activists protested on the campus on his first day of class, culminating in the blockading of the Princeton administrative building and the arrests of activists who refused to move when ordered to do so. Princeton responded in faux shock – as though they hadn’t hired in him due to – in large part – his near-celebrity status.

Singer’s policy assaults on disabled people have broadened in scope since 1999. In 2009, the New York Times Magazine published an article by Singer titled ‘Why We Must Ration Health Care.’ In the article Singer spoke “hypothetically” of assigning a life with quadriplegia as roughly half that of a life without any disability at all. On this “hypothetical” basis, Singer laid out a case for denying health care to people with significant disabilities on the basis that our lives have less value than the lives of nondisabled people. A response signed by 20 national disability rights organizations was submitted to the magazine, decrying the decision to seek out Singer as an analyst of healthcare and for the specific content of the article.

At the time, this was probably Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities were already well known.

Singer’s latest assault on the lives of people with disabilities occurred while on a radio talk show on April 26 that is broadcast live in New York City and Philadelphia. The show, “Aaron Klein Investigative Radio,” is also broadcast and archived on his website. Singer’s remarks from the show were first reported by WND in a story.  Not Dead Yet paid a subscription fee to Klein’s website to access the show and verify the quotes.

Singer was on Klein’s show as part of his media promotion of a new book, The Most Good You Can Do: How Effective Altruism Is Changing Ideas About Living Ethically. Unlike most interviewers, Klein decided to explore some of Singer’s earlier writings and to discuss them.

On Friday, April 23, the National Council on Disability issued a press statement on Singer’s comments during the show, which read in part:

Singer told Klein that health care rationing is already happening, and surmised that hospitals routinely make decisions not based on need, but rather on cost. He then used the presumed practice to rationalize the killing of disabled infants by arguing in support of “non-voluntary euthanasia” for human beings who Singer contends are not capable of understanding the choice between life and death, including “severely disabled infants, and people who through accident, illness, or old age have permanently lost the capacity to understand the issue involved.”

When asked whether denying treatment to disabled infants has become more common in the United States under the Affordable Care Act, Singer speculated: “It does happen. Not necessarily because of costs” and continued:   “If an infant is born with a massive hemorrhage in the brain that means it will be so severely disabled that if the infant lives it will never even be able to recognize its mother, it won’t be able to interact with any other human being, it will just lie there in the bed and you could feed it but that’s all that will happen, doctors will turn off the respirator that is keeping that infant alive.”

“I don’t know whether they are influenced by reducing costs,” Singer said before using what critics claim is inflammatory and speculative language to defend the practice. “Probably they are just influenced by the fact that this will be a terrible burden for the parents to look after, and there will be no quality of life for the child… We are already taking steps that quite knowingly and intentionally are ending the lives of severely disabled infants. And I think we ought to be more open in recognizing that this happens.”

Klein followed up by asking whether the killing of severely disabled infants should be encouraged to reduce health-care costs. “Do you think in the future in order to ensure a more fair rationing of health-care and health-care costs,” asked Klein, “that it should actually be instituted more? The killing of severely disabled babies?”

Singer responded, by stating if “you had a health-care system in which governments were trying to say, “Look, there are some things that don’t provide enough benefits given the costs of those treatments. And if we didn’t do them we would be able to do a lot more good for other people who have better prospects,” then yes, I think it would be reasonable for governments to say, “This treatment is not going to be provided on the national health service if it’s a country with a national health service. Or in the United States on Medicare or Medicaid.”

Without offering any concrete measure on how quality of life could or should be determined, Singer admitted, “I don’t want my health insurance premiums to be higher so that infants who can experience zero quality of life can have expensive treatments.”

While Aaron Klein was undoubtedly aiming toward something to specifically condemn the Affordable Care Act (ACA), Singer made it clear that some killing through neglect already occurs in American hospitals (and did so for decades before the ACA came into being).  Now he is advocating that both government run healthcare and private insurance can and should deny care to some people based on real or alleged cognitive and/or physical disabilities for economic reasons.

For those who may worry that Singer’s words deserve the protection of academic freedom, Princeton’s own policy on Respect for Others strikes a balance which the University has sadly ignored:  “As an intellectual community, [Princeton] attaches great value to freedom of expression and vigorous debate, but it also attaches great importance to mutual respect, and it deplores expressions of hatred directed against any individual or group.”  Rather than challenging Singer’s advocacy as a form of hate speech, Princeton University has provided Singer with a prominent platform and increased access to US media and policymakers for 16 years, establishing itself as the home for the worst of overt – and deadly – bigotry against disabled people of all ages.

Enough is enough.  It’s long past time for this outrage to end.

We, the undersigned, demand the following:

  • That Princeton University officials should immediately call for Professor Singer’s resignation;
  • That Princeton University officials should publicly disavow Singer’s statements that both devalue the lives of people with disabilities and advocate public policies that would end those lives through denial of healthcare; and
  • That the New Jersey Legislature and Governor Chris Christie publicly denounce the lethal and discriminatory public health care policy advocated by Princeton bioethicist Peter Singer.

Please go to the petition at Change.org to sign on.

A Belated Recognition of National Healthcare Decisions Day: “Good Practice” by Michael Barton (video)

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Thursday, April 16, was National Healthcare Decisions Day. We probably should have made note of it.

But then again, we’ve pretty much ignored it since one post I wrote in 2008 making note of the day and NDY’s take on it:

In case you missed it, today is National Healthcare Decisions Day (NHDD). We’re all invited to “join Americans across the country to talk to others about your future healthcare decisions and to complete your advance directive!”

We’ll pass, at least when it comes to joining with the coalition promoting this effort.

We listed some of our reasons and rationale for opting out:

There are many problems with the marketing and the promotion of advance directives right now, but I’ll focus on two:

  • There is no warning to the public that advance directives might not be of any use at all if physicians don’t agree with your choices. Under the ever-increasing influence of “futile care” policies, physicians and hospitals may deny you life-saving treatment even if your advance directive calls for it and your health-care proxy demands it. At least part of the reason this “elephant in the living room” isn’t addressed may be that many of the medical organizations participating in NHDD support “futile care” policies.
  • In discussions with disability advocates, advance directives are described as a way to state what you do want in the way of treatment as well as what you don’t want. And, in all fairness, some of the forms being used provide space for those options of desired treatments. However, the long-term focus on – and usage of – the problematical term “end of life,” has resulted in “advance directives” being framed as an “end of life” issue, as can be seen in the “facts” section of the NHDD website. On this page, you’ll see that the discussion quickly leaps from “advance directives” to “end of life” issues. This inevitably encourages most people to think about “advance directives” as being about ending their lives, rather than making a clear statement of “treatment preferences.”

So forgive us if we don’t join the current effort. We do think it’s best to make sure you pick someone you trust to make decisions on your behalf should you need that while in the hands of the medical system. We just don’t want to sign onto this flawed effort and product.

There’s little evidence that there’s much that’s gotten any better, so there’s little to give us reason to summon up some enthusiasm for the day.

But we do have something to share.

In 2013, NDY President and CEO Diane Coleman submitted comments to the Institute of Medicine’s Committee on Approaching Death.  The comments included this:

A 2012 study in the Journal of Emergency Medicine[14] found that having a living will might give people a false sense of security about getting the treatment they want. Based on survey responses from more than 700 physicians in 34 states, researchers from the University of Pittsburgh Medical Center found that over 50% of physicians misinterpreted a living will as having a “do not resuscitate” (DNR) order when it did not. About the same percentage over-interpreted DNR orders as meaning no treatment except “comfort care” or “end-of-life” care.

The study shows that there is a frighteningly high likelihood that having a living will or DNR order will result in physicians withholding curative treatment that a patient actually wants.  What are the reasons for the interpretation problems that have been documented?   And what are the risks that the same type of misinterpretation is or will be an issue in the POLST context?  Research is needed before sound policies can be developed. (Here’s a link to the abstract of the study cited here.)

That brings me to the present. This morning, Dr. Ferdinando Mirarchi, lead author of the article discussed and cited above, emailed Diane Coleman with a video to share. The video, “Good Practice,” is by Emergency Room physician Dr. Michael Barton. The video is close captioned and has additional text embedded in the video; they don’t get in the way of each other – much. 😉 Video below. Enjoy!

San Francisco Chronicle Columnist Debra J Saunders Discusses Class, Race and Privilege in Assisted Suicide Debate

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Since Not Dead Yet started, we’ve seen that the proponents of assisted suicide consist of what we call the “4 W’s” – the white, well-off, worried worried well. That hasn’t changed.

Last week, columnist Debra J. Saunders discussed the role that class, income and race play out in the debate in that state over legalization of assisted suicide. Here are a couple of excerpts from her excellent column, “Assisted suicide: help the rich to not get too much care“:

The assisted-suicide movement is the rare self-proclaimed civil rights movement that exists to cater to the wishes of affluent Americans. Tuesday, the state Senate Judiciary Committee held a hearing on SB128, a bill to legalize assisted suicide in California. (Proponents don’t like the word suicide, so they call the measure the “End of Life Option Act.”) Supporters talked of their fear of medical personnel prolonging their lives, of pain and lack of autonomy; opponents fear that the bill’s passage would represent a callous act of cultural abandonment of the sick and disabled.

And then there’s the issue of race:

California has world-class medical care. This bill seeks to address a “First World problem,” noted Tim Rosales from the opposition. Rosales steered me toward Ken Barnes, a San Diego management consultant who used to be on the executive committee of the California conference of the NAACP. Barnes handily summed up SB128 supporters: They tend to be white, educated, affluent and able to navigate the health system. While they think they are “progressive,” they are as oblivious to the downside for “people of color and people who don’t know how to advocate for themselves.” They’re like white guys who don’t understand why black men are leery of police.

I want to reinforce this point. A Pew Poll published in November, 2013 reported that only 29% of Blacks polled and 32% of Hispanics polled supported legislation that would legalize assisted suicide.

The issues of race, class and privilege don’t get aired nearly often enough in this debate.

Please go to the original column and read it in its entirety – it’s truly excellent and deserves all attention it can get.

Maryland: Assisted Suicide Bills Killed Quietly in Committees – Updates on California and Rhode Island

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Good news – for now – in Maryland.  According to the Baltimore Sun:

Hope ended Wednesday for those who wanted Maryland to pass a “death with dignity” law this year.

Leaders of two key committees considering a bill that would have allowed doctors to prescribe medicine to help terminally ill patients end their lives decided not to vote on the proposal, effectively killing it.

But it’s highly likely the bill will be resurrected/reincarnated:

The move ends an emotional debate in the General Assembly — for now. House and Senate leaders plan to convene a work group that will present another proposal in January. That spares the legislature a complex floor debate in the waning days of the session this year.

NDY Board member Sam Crane is quoted in the article:

“We are absolutely delighted that the committees realized that this bill would not work for Marylanders,” said Sam Crane, director of public policy for the Autistic Self Advocacy Network and a member of the MD Coalition Against Physician Assisted Suicide.

Crane’s group, religious organizations, mental health groups and disability advocates had argued that the bill would sanction death for people who relied on others to care for them and could put some the state’s most vulnerable populations at risk.

Sam was one of many disability advocates/activists who testified against the bill, including Crosby King for Not Dead Yet and and Richard Davis, on behalf of the Arc of Maryland.

Next week, there will be hearings in California and Rhode Island on similar bills.  So far, we know that Emily Titon plans to testify in the Rhode Island hearing and Marilyn Golden plans to testify in California. Marilyn Golden testified before the Senate Health Committee in March – her testimony can be read here.

John Kelly and Alex Schadenberg on Radio Sputnik Radio’s “Brave New World”

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At the end of February, both John Kelly, the New England Regional Director of Not Yet Dead and Alex Schadenberg, Executive Director of the Euthanasia Prevention Coalition, were guests on “Brave New World,” a show on Radio Sputnik. Also on the show was Gert Huysmans, the President of the Federation of Palliative care of Flanders (Belgium). John Harrison is the host of the show.

According to John Kelly, this show was better venue than he is used to – venues in which news hosts are often openly hostile to any opponent of legalized assisted suicide and euthanasia. John said (and the show recording and transcript confirm this) “he (Harrison) gave each of the participants a chance to describe the situation in our own country, thereby giving us a chance to make our points without being asked the “what do you say to Brittany Maynard” type of gotcha question. When he asked me the devils advocate question it was about a person with a disability, not someone “about to die in pain” or some such nonsense.”

Here are a couple of excerpts:

Gert Huysmans: What you mentioned in Flanders and in Belgium, euthanasia is not a right. You have the right to request for euthanasia, and that’s a world of difference. So it’s not that you have the right to choose your moment of dying with euthanasia. You have to follow certain conditions that are mentioned in the law. You have to have unbearable suffering caused by a disease or an accident, and the physician you request your euthanasia [from] should have the internal persuasion that euthanasia is the only proper solution for your problems and in some cases and in some circumstances euthanasia is acceptable, but it is not a right as such.

And, as news of the law’s actual application has shown, practice is only as narrow as the broadest comfort zone of any given individual physician.

John talks about the long-term resistance to “right to die” laws from the disability community:

JK: We in the United States, the disability rights movement have fought [for] a generation against the arrogance being displayed by the doctor, where the doctors can presume to judge the quality of life, and when it is correct to end it. We have a history of being judged to not have high quality of lives, and whenever suffering is the subjective criterion for deciding who gets to die, people with disabilities will always be the ones who are targeted.

This show is an excellent one.  I encourage readers to listen to the show here or to read the transcript here.