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

April 15, 2013assisted suicide, NEJM, Oregon, Our News & Commentary Blog, slippery slopeStephen Drake

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”

April 8, 2013autism, better dead than disabled, bigotry, disability, disability activists, disability rights, op-ed, Our News & Commentary BlogStephen Drake

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

April 7, 2013Amanda Baggs, autism, autistic activists, better dead than disabled, blog recommendations, bloggers, Disability and Representation, medical bigotry, medical discrimination, Our News & Commentary Blog, Rachel Cohen-Rottenberg, vermontStephen Drake

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.

Updates on Amanda Baggs – Surgery is on for Today!

April 2, 2013Amanda Baggs, autistic activists, disability, disability activists, disability rights advocates, discrimination, medical bigotry, medical discrimination, Our News & Commentary Blog, vermontStephen Drake

Before I start with the specifics, here’s the short version – due to the overwhelming response of disability activists and allies, things changed for the better in terms of communication and setting an agenda for surgery – placement of a feeding tube that will hopefully prevent the frequent bouts Amanda Baggs has had with aspiration pneumonia. Amanda might be having surgery as I write this, since one of her posts (not included below) that her surgery was scheduled for late morning or early afternoon. It’s about 30 minutes after noon right now.

I think it’s best if I share some of what Amanda’s written over the last twelve hours or more for folks to get a sense of where things stand:

In “Oh also wanted to thank all the ppl I don’t even know,” she wrote:

Who called the hospital on my behalf. The woman from Disability Rights Vermont who, free of charge, sat through all my doctor visits yesterday. All day long. Etc.

You did have an impact. One of my doctors said there’s an abrupt change in my charts starting when ppl started calling and stuff. I noticed too because they turned from hostile to conciliatory on a dime.

Just be aware even if my surgery goes perfect there’s lots more patients to protect.

There might have been other people who contacted them, but NDY President Diane Coleman emailed the director of the organization on Sunday. She’s been working with Disability Rights Vermont and other organizations opposing proposed assisted suicide legislation.

And aside from posting her situation on the blog and disseminating via facebook and twitter, that was the extent of NDY’s role.

This effort was the result of countless people. Autistic activists and bloggers spreading the word and asking people to contact the hospital all day Sunday. The countless people who did call the hospital. Everyone who blogged about the situation. That would include Meega Na La Queesta at Aspiesforfreedom, Paula C. Durbin-Westby, and lots of others I’m sure to have missed. Stephen Kuusisto has “a disability meditation” out today as he (and all of us) wait for the outcome of the surgery.

Kathleen Seidel went from her home in New Hampshire to the hospital to stay with Amanda for a couple of nights.

And of course, the real reason all of these good things happened is because of Laura T. – Webmuskie – who emailed people all day Sunday to get everyone informed and ready to intervene in whatever way they were able.

I’m cautiously optimistic that “we” – all of us – won this one. It’s truly amazing what so many people can do when we’re focused, outraged, and more than a little bit scared.