NDY President Diane Coleman Submits Comments on Futile Care Policies to National Council on Disability

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The National Council on Disability (NCD) “is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees , an Executive Director appointed by the Chairman, and eleven, full-time professional staff.” (Read more about NCD at http://www.ncd.gov/about)

Not Dead Yet has worked with NCD in the past, most notably on their position paper and update on assisted suicide.

Periodically, NCD has “comment opportunities” for stakeholders in the disability community.  You can attend and comment in person or by phone.  There is a list of meeting and events here.

Here’s the comment that Diane Coleman offered today via phone:

 

Comments by Diane Coleman and Not Dead Yet Before the National Council on Disability – April 22, 2013

I’m commenting today to urge NCD to take a leadership position in addressing the problem of so-called futile care laws and policies which allow doctors to deny life-sustaining treatment to people with disabilities who want and need it. The common thread running through stories we hear is that our lives with disability are seen as less worth living, so much less that health care providers too often think that death is the correct course. They press this viewpoint on us, our families and sometimes even overrule us when we disagree.

Futility policies are not a new thing, but there are indications that doctors have become increasingly comfortable using them to withdraw life-sustaining treatment to end our lives. They provide doctors a legal safe harbor to act based on whatever medical predictions and quality of life judgments that they may feel are consistent with community standards.

Texas has the most infamous futility law, which requires an ethics committee consultation and then, after only 10 days, allows doctors and hospitals to withdraw treatment. Repeated efforts to amend the Texas law have failed. This year’s amendment proposal is so weak that disability advocates have had to oppose it. Bob Kafka, a national ADAPT leader who is also the head of Not Dead Yet of Texas, testified against SB 303:

“Our opposition … is based on our experiences with the medical community, who with all good intentions, make recommendations/decisions that if implemented would have resulted in the death of people who now are living members of our organizations. . . . Right now most of the appeal process is focused on ethics committees in hospitals that have them. Currently there are no standards for ethics committees in regard to size, membership, procedures or even having one. We believe that there is an inherent conflict of interest to have a committee convened at the hospital that the doctors have privileges.

“ADAPT/NDY recommends that a conflict free process outside of the hospital setting be established that has substantial membership of the disability community as members.”

Last year the National Disability Rights Network issued a report condemning decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of our basic constitutional rights. The report states that reliance on ethics committees and consultations is insufficient protection.

I’ve communicated with protection and advocacy (P&A) attorneys in several states who had to go to court to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital. Because of P&A intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana and Pennsylvania. That’s just from my limited knowledge.

What I think the NDRN report tells us is that this futility problem is huge and we’ve just seen the tip of the iceberg. Some groundwork has been laid, but serous work remains to be done and I hope that NCD will help lead that effort.

We’ll be catching up this week with news and information that’s piled up over the past week or two.

Exec. Director of American Humanist Assoc. Echoes Compassion and Choices’ Exploitation of Elderly Homicide/Suicides

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Roy Speckhardt, Executive Director of the American Humanist Association, published an essay today – April 16 – on Huffington Post.  His essay uses the tragedies of elderly suicide/homicides to build a case of assisted suicide, a tactic which will be familiar to readers of this blog.  Here’s an excerpt from his essay, titled “Getting the Freedom to Die“:

The issue of assisted suicide is in the public spotlight in Arizona following the sentence of probation for George Sanders, who admitted he shot his wife in response to her wishes after she was diagnosed with a gangrene infection that would require hospitalization and subsequent residence in a nursing home. After decades of suffering from a series of medical problems that eventually confined her to a wheelchair, court testimony revealed that Virginia “begged” her husband to end her life after the gangrene was discovered. People on both sides of this case have called it a “mercy killing,” and the judge agreed with a plea bargain that resulted in two years of probation for her husband instead of jail time.

***

This case and numerous others like it around the country, such as the tragic killing of a dying 83-year-old Pennsylvanian woman by her 86-year-old husband recently reported by Bertel King of The Inquisitor, shows why it’s time for the federal government to recognize that there is clearly a need for a dignified method of assisted suicide in the U.S. We know that in the presence of the current ban, people’s humanistic will to do what is right will lead them to break the law, sometimes in unfortunate ways such as that experienced by the Sanders.

Here is the comment I’ve submitted on Huffpo to the essay.  It’s the second comment so far:

Mr. Speckhardt is parotting a campaign launched by Compassion & Choices a couple of years ago, in which they exploited the tragedy of elderly homicide/suicides. Speckhardt was more careful in choosing his examples, in that most of these homicide/suicides happen in the absence of evidence that the victim wanted to die. (It’s almost always men who do the killing, in spite of the fact that women, who live longer than men, end up as caregivers more often.)

Even so, there’s no questioning of whether or not George Sanders’ wife could have received in-home support to avoid a nursing home – or if they’d had more support, whether her gangrene could have been averted.

As I said, though, the idea that somehow an assisted suicide law would avert men killing their wives even though most don’t ask the victim if they want to be killed is ludicrous.

More about the Compassion and Choices campaign (and real research on this phenomenon) here:
http://notdeadyet.org/2010/09/assisted-suicide-advocates-advance.html

Note that the link in my submitted comment is a different link than the one I posted above.  That’s because Compassion and Choices kept pushing this tactic.  I guess they’re getting surrogates to do their dirty work now – “dirty work” in that this tactic relies in a great deal more exploitation and distortion of available data than their usual means of selling their agenda.

Here’s a “reality check” on elderly homicide/suicides:

It turns out that mutual suicide pacts and motivations of real compassion are rare in such murders or murder/suicides. Julie E. Malphurs and Donna Cohen have conducted several studies on this increasing type of domestic violence.

Donna Cohen, in a media release from Carers New Zealand, shared some of the research findings:

“These are not acts of love. They are not compassionate homicides. They are acts of desperation and depression, other forms of psychopathology, or domestic violence.”

Dr Cohen’s research indicates that older men – who almost always initiate the acts – routinely proceed without their wife’s knowledge or consent. She says true pacts occur in perhaps one half of 1 per cent of elder homicide-suicides.

Of the hundreds of homicide-suicide deaths in the US each year, the rate amongst over 55s is twice that of under 55s. Homicide-suicides now account for about three per cent of all suicides, and about 12 per cent of homicides in the older population.

“One of our most distressing findings is evidence that older women who are killed are not knowing or willing participants,” says Dr Cohen. “Often they are killed in their sleep or shot in the back of the head or chest.”

Her research indicates that about a third of elder homicide-suicides occur in a context of domestic violence, an ugly contrast to the Norman Rockwell image of loving clan matriarch and patriarch.

Note – the last link has been fixed.  It now links to a capture of the original page and story courtesy of the Internet Archive.

New England Journal of Medicine – Pro and Con Assisted Suicide Essays and a Poll

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A recent (I don’t think it’s quite the latest) issue of the New England Journal of Medicine (NEJM) features a “case vignette” of a terminally ill man who requests an assisted suicide prescription from his doctor.  Here’s part of that vignette:

John Wallace is a 72-year-old man with metastatic pancreatic cancer. At time of diagnosis, the cancer was metastatic to his regional lymph nodes and liver. He was treated with palliative chemotherapy, but the disease continued to progress. Recently he has become jaundiced, and he has very little appetite. He has been seeing a palliative care physician and a social worker on an ongoing basis. His abdominal pain is now well controlled with high-dose narcotics, but the narcotics have caused constipation. In addition to seeing the social worker, he has also been seeing a psychologist to help him to cope with his illness.

The response against assisted suicide is written by J. Donald Boudreau, M.D., Margaret A. Somerville, A.u.A. (pharm.), D.C.L.  Here’s an excerpt – read right after vignette:

Permitting physician-assisted suicide creates a slippery slope that unavoidably leads to expanded access to assisted suicide interventions — and abuses. Advocates of euthanasia deny that slippery slopes exist, arguing that legal constraints and administrative safeguards are effective in preventing them. But the evidence is clearly to the contrary, as the High Court of Ireland recently affirmed. In upholding the constitutionality of the prohibition on assisted suicide, the justices wrote, “. . . the fact that the number of LAWER (`life-ending acts without explicit request’) cases remains strikingly high in jurisdictions which have liberalised their law on assisted suicide . . . speaks for itself as to the risks involved.”2 Vulnerable communities in our societies — persons who are old and frail and those who are disabled or terminally ill — perceive themselves to be threatened.3 Physicians must not be willfully blind to these serious dangers.

The response in favor of assisted suicide is written by Nikola Biller-Andorno, M.D., Ph.D. – her response can be found in the “option 2” page, which is identical to the page with the response against assisted suicide – same vignette, and the comments after the response are also the same ones.

Now for the really important part: This whole section of this NEJM issue is free and open to the public.  You can leave a comment and vote in their poll.  At the time I typed this, there were 157 comments.  And the poll was running 72% against assisted suicide vs. 27% in favor.

This is an excellent forum in which to get your voice heard and to cast your vote.  Click on this link to get started.

Pittsburgh Post-Gazette: “They want us to die: You wouldn’t believe how many people hate those of us with autism”

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This op-ed was published in the Sunday, April 7 edition of the Pittsburgh Post-Gazette.  It’s written by Selene dePackh, who is an artist and writer.  She’s also autistic.

dePakh’s op-ed describes the reality that many of us are all too aware of, but sharing it with a broad audience.  For whatever reason, the online comments have been mostly positive – giving the appearance that the usual online trolls have taken a holiday.

This is well worth a read, even if you think you’re already familiar with the hatred and hostility that exists toward autistic people and others with developmental disabilities.  Below are the introductory paragraphs to “They want us to die: You wouldn’t believe how many people hate those of us with autism“:

The adult autistic community dreads the cerulean lights of April. Another crop of anti-autistic hate sites will appear, invigorated by the artificial sunshine of that cruel spotlight. The pastel blue of Autism Awareness Month will be everywhere, together with the jigsaw piece that demeans us to the core. We aren’t fragmented puzzles; we experience ourselves as complete humans; we’re capable of empathy, despite that terrible prejudice perpetuated by some diagnosticians. We do communicate, even if it takes a receptive, unbiased ear to hear us.

Only hours after the horror at Sandy Hook Elementary, the shooter was fingered as autistic; the hate machine hit high gear. The bigotry was fanned by media outlets driven to find simple answers for a shatteringly complex event. My circle of online activists began tracking down and reporting the worst of the pages that appear every time attention is focused on us. Many hide under innocuous-sounding names like “A Cure for Autism.” The first toadstool rising from the rain of hysteria following the Newtown tragedy hid under a “solution to protect our families” identity. The single post announced:

Once we hit 50 likes, we are going to go out and find an autistic kid and set it on fire.

There’s more – more about the damage “awareness” without acceptance does, the importance of who gets to speak, and yeah – more evidence of the hatred that permeates society.

Disability and Representation blog: “Amanda Baggs, The Pressure To Die, and the Case Against Assisted Suicide” by Rachel Cohen-Rottenberg

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For about a week now, activists and advocates have been engaging in the fight to safeguard the health and safety of Amanda Baggs, one woman dealing with medical ignorance, apparent bigotry, and regular messages that her life isn’t one worth saving.  Even now, a positive outcome isn’t assured. (I direct blog readers to just peruse the last week’s worth of blog posts for the full story if you haven’t read it yet.)

All this has been happening in a hospital in the state of Vermont, which is on the cusp of passing landmark legislation in the state – and that’s played out as a kind of “elephant in the living room” as we (including me) have written about Amanda Baggs’ struggle without mentioning the broader context of the push to legalize assisted suicide in her state.

Rachel Cohen-Rottenberg, who writes regularly on her blog “Disability and Representation,” decided to point out the behemoth that no one’s been talking about in “Amanda Baggs, The Pressure To Die, and the Case Against Assisted Suicide“.  Here’s the intro:

Most people in the disability community know Amanda Baggs as a blogger, a disability rights activist, and the creator of the powerful video, In My Language. I first came to know Amanda in all those ways as well. Then she became a friend, and I found her to be one of the most ethical people I have ever known.

I’ve been pondering for days about how to write at length about what is happening to Amanda. Words have been failing me. All I’ve been able to feel is a deep sadness and a deep outrage that nearly take my breath away. But it’s time — not only because Amanda is a friend and a colleague, but also because her situation shows how easily vulnerable people are pressured to die by those who feel their lives are not worth living.

Amanda is autistic. She is also a wheelchair user and has a condition called gastroparesis (GP) — paralyzed stomach. Because of this condition, Amanda has had several bouts of aspiration pneumonia. The treatment for aspiration pneumonia is excruciating, and another bout could kill her. The only way to save her life is the insertion of a G-J tube through which she can both receive nutrients and vent air and bile from her body. Several doctors at the hospital in which Amanda is a patient suggested a G-J tube, and Amanda decided she wanted it. She has been quite clear about her desire to live.

A life-saving procedure to which a patient agrees ought to be the end of the story. But in the case of a woman with multiple disabilities, it hasn’t been. Amanda has had to fight for the insertion of the G-J tube in the midst of illness and exhaustion. In one especially ghastly encounter, she had to argue with a gastroentereologist who kept suggesting “alternatives” — when they both knew that the only alternative was death.

As I said, this is just the intro, Rachel has written a lot more in this post about what the fight for Amanda Baggs’ safety has to say about what is happening to other disabled people in the state – people who don’t have the large network of activists, advocates and bloggers that Amanda Baggs has.  What does the “right to die” mean in a system where many medical people seem to believe that death is preferable to some forms of disability?

Please go to Rachel’s Disability and Representation blog to read the rest of her insights on this latest rescue (we hope) of one of our community.

I’ll try to add my own thoughts within the next few days, after I’ve had a chance to digest what she’s written.