Coleman Op-Ed: Why disability rights advocates oppose assisted suicide

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This past Monday, the Syracuse Post Standard published an op-ed I wrote that gives a bit of the history behind the position that so many national disability groups have taken in opposing assisted suicide laws.  Our position often surprises people because we are also such strong supporters of self-determination by people with disabilities, but we also oppose discrimination, especially medical discrimination.  Here’s part of the discussion:

Those of us with serious disabilities have good reasons to be skeptical about the mantra of choice being used to market assisted suicide in our profit-driven health care system. Anyone could ask for assisted suicide, but the law gives doctors the authority to decide who is eligible.

Doctors used to exercise near-total control over the lives of people like me with significant disabilities, discouraging parents from raising such children at home, sentencing us to institutions, and imposing their own ideas about what medical procedures would improve our lives.

Disability groups started paying attention to the problem of doctors making life and death determinations in the 1980s in high-profile court cases involving the right to refuse treatment. One involved Elizabeth Bouvia, a 26-year-old woman with cerebral palsy who had a miscarriage and marriage breakup and wanted a hospital to make her comfortable while she starved herself to death. Other cases involved men on ventilators stuck in nursing facilities like Larry McAfee, who wanted the right to live in apartments or real homes, or else “pull the plug.” The doctors, courts, media and public all viewed these severely disabled individuals as the equivalent of terminally ill. They did not get suicide prevention equal to that offered nondisabled people, nor the right to live in real homes instead of facilities, but courts uniformly granted them a “right to die.”

Then the 1990s brought Dr. Jack Kevorkian, conducting assisted suicides using lethal drugs, with two thirds of his body count being people who were not terminally ill. As before, the difference between being disabled and dying was not recognized or considered relevant. As before, the difficulties disabled individuals faced in living – community access, getting a job, getting married – were not considered, or worse, accepted as rationales for ending their lives.

To read the whole op-ed, go here.  We were told that the piece would also appear in the print edition sometime this past week.  And there are a number of comments, including two from me and two from Stephen Drake in response to others.

Disability Advocates Demand Seat At the HHS Table In Design of Value-Based Healthcare Payment Systems

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Last Thursday, Not Dead Yet was one of “over 70 individual patients and patient organizations” that joined the Partnership to Improve Patient Care (PIPC) in a letter to the Department of Health and Human Services (HHS), calling for recognition of us as stakeholders in the Better, Smarter, Healthier initiative and in the Health Care Payment Learning and Action Network.  In fact, NDY was concerned enough to send our own letter as well.

PIPC issued a statement describing the need for the letter, in part, as follows:

While most patient stakeholders agree that paying for “value” rather than “volume” will result in better outcomes for patients, the shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. That’s why it’s important that patients have a seat at the table in determining how these new payment models are implemented.

The PIPC letter to Secretary Burwell hints that the initial invitations may not have included appropriate “patient” groups:

The pivotal shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. Patients’ voices need to be a part of this discussion. Therefore, we urge you to recognize patients as key stakeholders in this discussion, beginning with including patients within the Health Care Payment Learning and Action Network that will accelerate the transition to alternative payment models. Organizations representing patients and people with disabilities could provide a unique and valuable voice, in addition to the voices of state representatives, insurers, providers, business leaders and consumers whose participation has already been solicited.  (Emphasis added.)

The next day, Not Dead Yet sent our own letter to Secretary Burwell, emphasizing three points:

1)  Including “patients” among the stakeholders requires more than a token representation of the broad and diverse population of health care consumers. We are specifically concerned that people with disabilities and chronic health conditions are adequately represented in the process. While family members and disability-related professionals should also be included, such individuals and related organizations do not substitute for people with disabilities and the organizations that are run by us.

2)  It is essential that the initiative develop approaches that put individual patient self-determination as the top priority in establishing the value of health care treatments. PIPC rightly points out that a risk in alternative payment models based on “value” is that “value” may be defined in a “one size fits all” manner that does not recognize differences among patients . . ..   The urgency of avoiding this error cannot be overstated. If the bottom line is a system that determines value based on “majority rule”, that system will fail to meet the needs of individuals and will violate the core principles of self-determination.

3)  There is a risk that definitions of value that have previously been posited by self-appointed “bioethicists” will be foisted upon the stakeholders. Concepts such as “quality adjusted life years” and “disability adjusted life years” inherently devalue people with disabilities and chronic conditions and should not be used as a basis for the work of the initiative.

The full NDY letter is available here.

Additional Letters to Princeton Regarding Peter Singer – Bob Kafka (ADAPT) and Kathy Brill (Parent to Parent USA)

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Yesterday, we launched our Change.org petition “Denounce Lethal Anti-Disability Healthcare Policy Advocated by Peter Singer.” We presently have over 300 people who have signed on to the petition. Please add your own name by clicking here and following the directions.

In addition to the statement we shared and quoted from the National Council on Disability, there are two other important reactions to Singer’s latest assault on the lives and value of disabled people.

Long-time ADAPT leader Bob Kafka disseminated the following letter to fellow disability activists yesterday:

Dear Trustees of Princeton:

Peter Singer has the right to say anything he wants but a prestigious university is under no obligation to give him a platform to promote the killing of people with disabilities.

Would you have him head of a department if he justified the Nazi “final solution” by coming up with an inferiority equation on who lives and who dies?

What about the extermination of Transgender people because they didn’t conform to his equation of normalcy?

How about if he advocated the sterilization of all mothers on welfare if they have more than one child?

Peter Singer is an embarrassment to Princeton and a danger to people with disabilities and families with children with disabilities.

Please ask him to resign.

Bob Kafka

ADAPT of Texas

Kathy Brill, Executive Director of Parent to Parent USA, is circulating a letter she’s written to Princeton Trustees:

April 27, 2015

Dear Princeton University Board of Trustees,

As a national organization representing hundreds of thousands of families who have children with disabilities and special healthcare needs of all ages, Parent to Parent USA is appalled at Dr. Peter Singer’s position of infanticide for babies and children born with significant disabilities and health care needs, and join the movement demanding his resignation from Princeton University.

Recognizing our history as a disability movement, we acknowledge the difficulties previous families have faced with their children being born with certain severe health and disability conditions. Many of us have been told by health care professionals that our children would not be capable of living fulfilling lives and that their impact on our lives and our family’s would be detrimental. Yet, overwhelming numbers of families have stories that prove doctors and other professionals to be wrong in this prognosis. Our children have defied the professional’s predictions and have gone on to have productive lives. And, science and technology move forward with exponential leaps and bounds, assisting our children to meet high expectations and quality of life.

Parent to Parent USA provides access to quality parent to parent support across the country; providing emotional, informational and systems navigational support to families of children and young adults with disabilities and special health care needs. Parent to parent support helps families realize the full potential of their children – focusing on their abilities, rather than their disabilities; connects families to their community; and promotes the importance of raising all of our children to be contributing members of society. Does this sound familiar? It should, since it is Princeton University’s mission to inspire students to realize their full potential through self-discovery, connection to community, meaningful work, a love of learning, and a life of purpose.

In summary, Dr. Peter Singer’s position lacks reality, scientific insight, and any forethought regarding the impact his position would have on the uniqueness for freedom, democracy, and civil rights enjoyed by the members of our nation. Parents feel certain that Dr. Singer would better understand the lack of logic involved within his position if he had personal life experiences in this field.

Sincerely,

Kathy Brill

Executive Director

 

 

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!