Diane Coleman and John Kelly Letters to the Hartford-Courant

There’s talk of legislative action on an assisted suicide bill in Connecticut, and it’s being discussed in the newspapers.  Both John Kelly, Director of Second Thoughts, and Diane Coleman, President, CEO and founder of Not Dead Yet submitted letters that were published recently in the Hartford Courant:

Disability Activists Oppose Assisted Suicide Bill

Diane Coleman, Rochester, N.Y.
Not Dead Yet
on 2013-01-14

Though writer Peter Wolfgang notes the potential impact of legalizing assisted suicide on the sick, elderly and disabled, this is the only mention of disability in the dueling op-eds by Wolfgang and Ilene Kaplan on Jan. 13 [Opinion, “Final Prescription: Whose Decision Is It?”].

Pro or con, both ignore the voices of disability rights activists, whom many credit with tipping the balance in the recent defeat of the assisted suicide ballot initiative in Massachusetts.

Hoping to leverage success via the culture war, proponents of legalized assisted suicide have long claimed that it’s all about compassionate progressives ves. the religious right. But they haven’t been able to silence progressive physicians, and they haven’t been able to silence organizations such as the Disability Rights Education and Defense Fund, ADAPT, National Council on Independent Living and Not Dead Yet, all of which oppose legalization of assisted suicide.

If there’s going to be a public debate, disability groups belong at the table, and people should learn why they oppose it.

 

Not Just Religious Against Assisted Suicide

John B. Kelly, Boston
on 2013-01-15

In Ilene Kaplan’s call for the legalization of assisted suicide in Connecticut, “Dignity, Control As Life Ends” [Jan. 13, Opinion], she trots out the facile terms of the “culture wars.”

She would have readers believe that progressive defenders of personal freedom and choice face opposition only from a meddlesome religious right. But when Massachusetts voters rejected legalization in November, it was because a broad coalition of medical professionals, the disability community and liberals exposed the shoddy science and lack of compassion behind the bill.

It is impossible to build a social policy upon mere guesswork, which is how doctors characterize a terminal diagnosis. Many people are themselves or know longtime survivors of a doctor’s wrong prediction. The late Senator Ted Kennedy’s wife, Victoria, wrote that Teddy was given two to four months to live, but enjoyed “15 more productive months.”

Obamacare architect Dr. Ezekiel Emanuel warned of the likely abuse of “the poor, poorly educated, dying patients who pose a burden to their relatives.” Connecticut should instead ensure that everyone receives social supports, good home care, and all the comfort care currently available.

More on Double Euthanasia in Belgium, National Federation of the Blind Reacts, and Other Suicides in the News

The 24+ hours since I posted on the double euthanasia of two deaf men in Belgium has resulted in some developments, varied reactions, and some reflection on my own part.  My apologies if this post seems a little scattered – a little like mental  multi-colored pasta thrown against the wall –  but sometimes that’s how my mind works.

First, the National Federation of the Blind (NFB) issued a statement from Dr. Marc Maurer, President of the NFB:

“This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences.  Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges, but from at least the time of Helen Keller it has been known that these challenges can be met, and the technology and services available today have vastly improved prospects for the deaf-blind and others with disabilities.  That these men wanted to die is tragic; that the state sanctioned and aided their suicide is frightening.”

You can view the entire release and learn more about the NFB here.

At the same time, I’m sure that others have noticed that there are suicides getting a lot of coverage this week.  The Pentagon reports that deaths by suicide reached a record number in 2012, with more military deaths occurring due to suicide than from combat.  The suicide of programmer/activist/open source advocate Aaron Swartz – apparently overwhelmed by the double effects of depression and what is being called “overreaching” prosecution over his download of millions of journal articles.  He was faced with decades in prison and enormous fines.

Read through the comments on any of the countless articles covering these suicide stories and you’ll be hard-pressed to find anyone reacting like this:

  • “It’s their body, their choice.”
  • “When people decide they need to end it, they should be able to get help to do so.”
  • “It’s too bad they had to use violent means – animals can get euthanized; we treat animals better than humans.”

The lack of statements like those struck me because they’re common sentiments expressed in article “comments,” and interactions on Facebook when people react to “double euthanasia” of Marc and Eddy Verbessem, the identical twins whose deaths are still making news.

I think that we don’t see those comments in the cases of Aaron Swartz and the military because those people are valued.  I know that euthanasia proponents say that their movement is all about respecting individual choice, but why are the “choices” of  Marc and Eddy Verbessem “respected” while the suicides of military personnel and the suicide of Aaron Swartz are treated as preventable tragedies?  The answer, of course, is that euthanasia isn’t about “respect,” but agreeing that another person’s continued existence is pointless.

The animal comparisons always get me.  I’ve written before (with Dick Sobsey) about the myths surrounding the “kindness” of pet euthanasia.

What struck me this time was an even deeper disconnect.  Anyone who spends a lot of time on the internet knows that cats are probably the most popular thing in existence.  Some of the most popular pictures/videos of cats involve disabled cats – and dogs.  Right now, the most popular cat on the internet seems to be Oskar the Blind Cat:

 

If you look around, you’ll find stories of a deaf and blind dog rescued from euthanasia and a pet now for seven years and there’s even a story out there about a deaf/blind dog with three legs that rescued his family from a fire.

Oskar has lots of fans.  Stories like the ones about the dogs seem to make people just tear up and feel generally inspired.

But two deaf men losing their vision getting “put down”?  That evokes shrugs and even applause.

I don’t get it.  And I think I’m grateful I don’t.

 

 

Belgium: “Double Euthanasia” of Deaf Twins Losing Vision and Reactions from a Deaf-Blind Blogger

Over the weekend, news came out of Belgium of a grim and bizarre new “twist” in that Country’s euthanasia practice.  According to reports, two 45-year-old twins were killed by lethal injection per their request (AKA “euthanized”).  They were both deaf and it’s said they were both gradually losing their vision.

From ABC News:

Two deaf twin brothers in Belgium were euthanized by their doctor after realizing they were going blind and would be unable to see each other ever again, their physician says.

The  45-year-old men, whose names have not been made public, were legally put to death by lethal injection at the Brussels University Hospital in Jette, on Dec. 14.

The men, who were born deaf, had a cup of coffee and said goodbye to other family members before walking into hospital room together to die, their doctor told Belgian television station RTL.

“They were very happy. It was a relief to see the end of their suffering,” said Dr. David Dufour.

“They had a cup of coffee in the hall. It went well and a rich conversation. Then the separation from their parents and brother was very serene and beautiful,” he said. “At the last there was a little wave of their hands and then they were gone,”

I used the ABC report for an important reason; reporter Russell Goldman looks to be the only reporter who has correctly stated that “suffering” – not pain – is an important criterion for “eligibility” for euthanasia, although he does err in implying that it’s “unique” to see non-terminally ill people qualify for euthanasia in Belgium:

The brothers are unique in that their illness was not terminal. Belgian law, however, allows doctors to euthanize “suffering” patients who are both mentally sound, over 18 and want to die.

Right now, there’s conflicting information coming out in pieces in various news articles.  I fully expect to revisit this as (I hope) individuals and organizations in the deaf, blind, and deaf-blind communities react.

There’s a pretty strong response from deaf-blind advocate, speaker and blogger “Coco,” who is pretty clear that this was not only  a bad thing for the two men who were killed, but for other deaf, blind and deaf-blind people.  She writes a blog titled “Tactile The World”  and her latest post is here:

I have not blogged in a while, life took its course. However, this topic is tragically urgent, something has to be addressed and discussed in the worldwide Deafblind community.

Two twins, both Deaf men, from Putte, Belgium (30 miles from Brussels) won the legal right to be euthanized (put to death legally by Belgian doctors) after citing their unbearable burden of going blind.

The Bangkok Post reported this and it became widespread, and then a French Belgian newspaper L’Avenir.net made their rounds about this story. Just now the Telegraph has written a more detailed article.

The twins, both shoemakers, had an unidentified eye disease that would take their sight in a few years (Usher Syndrome???) and at 45 years old, they requested the agreement of Belgian doctors despite not being diagnosed with a terminal illness or a physical disease. They were approved because it was “an unbearable suffering”….

She goes on to talk about response:

I wonder if the inevitable outcome of this tragedy would mean that more and more Deafblind, and other disabled people who don’t have a terminal illness or a physical disease, would follow suit and opt for ‘mercy killing’ and euthanasia because they have this conviction that they are, in theory, dying as a person when they think that the most vital sense is diminishing? Would this lead to an unnecessary ‘self-massacre’ of Deafblind people who, in their depressed state, think they aren’t able?

I am curious what Feviado, and the Belgian French/Flemish Deafblind community is going to do about this?

My strong suggestion is for those Db in Belgium to take a stand on this, denounce the euthanasia of Deafblind people, talk to newspapers and television about how Deafblind are able to do things granted Belgian government provides access and funding for Deafblind support services.

I agree with Coco – the Deaf-blind organization in Belgium should speak out on this.  In fact, I think it would be a big mistake for organizations and individuals outside of Belgium not to speak out about this double-killing.  Otherwise, the discussion will be dominated by Belgian euthanasia apologists, euthanasia advocates of all stripes, and bioethicists talking out the “problem” of “extreme” cases.  And then everyone will forget – until the next and more extreme killing comes along.

Please visit and read the entire original blog – “Belgian Deafblind Twins Euthanized!” and read the comments, which so far are in agreement with the points she’s made.

 

Canada: Toujours Vivant-Not Dead Yet established in Canada to organize against legalization of assisted suicide, euthanasia and associated threats

As of a few months ago, Canada now has a disability rights group dedicated to fighting legalization of assisted suicide, euthanasia and associated threats to the lives and safety of people with disabilities.

Logo for Toujours Vivant (french) Not Dead Yet (English) Canada
Logo for Toujours Vivant/Not Dead Yet Canada

Here’s a description of the group and their mission from the “about” section of the TV-NDY website:

About TV-NDY

Who we are and what we do

  • Toujours Vivant-Not Dead Yet is a project of the Council of Canadians with Disabilities Ending of Life Ethics Committee to include the voice of people with disabilities and focus on shifting public attitudes about euthanasia, assisted suicide, involuntary withholding and withdrawing treatment, organ allocation and harvesting, and other end-of-life practices that jeopardize the well-being of people with disabilities.
  • TV-NDY is a grassroots organization of Canadians with disabilities formed in response to the increasing popularity of assisted suicide and euthanasia in Canada and beyond.
  • TV-NDY is a secular, progressive organization.
  • TV-NDY’s mission is to work against assisted suicide, euthanasia, and other end-of-life practices that tend to discriminate against people with disabilities, elders and other vulnerable populations.
  • TV-NDY will also bring a disability-rights perspective and awareness of the effects of these practices to the debate around end-of-life issues.
  • TV-NDY works to educate, support, coordinate and lead the disability community’s effort to stop the “right to die” from becoming a duty to die or a right to kill.

Mission statement

Toujours Vivant-Not Dead Yet is a project of the Council of Canadians with Disabilities’ Ending of Life Ethics committee.
  • TV-NDY consists of persons with disabilities who oppose euthanasia, assisted suicide, and other end-of-life practices as violations of the civil and human rights of elders, people with disabilities, and other vulnerable populations.
  • We assert that society’s overall goal of discouraging suicide – as manifest in laws, policies and programmes aimed at preventing suicide – should be applied equally to all, including people with disabilities.
  • We hold that, in order to realize the promise of the charter of rights and freedoms, Canada has an obligation toward its citizens with disabilities to provide adequate health and palliative care according to the needs of the individual; prevent institutionalization, segregation and isolation; provide for the necessities of life and a reasonable standard of living; and remove social, economic, physical, communication, political and institutional barriers to full participation and equality.

We are thrilled that we now have a sister organization in Canada, which has Amy Hasbrouck as its Director.

Please check out the main page of Toujours Vivant-Not Dead Yet here.

You can also “like” the TV-NDY page on Facebook!

 

A “Must-Read” From Ezekiel Emanuel on Better “End of Life” Care

Right-Wing politics often leave me at a loss for words.  The attacks aimed at Ezekiel Emanuel before and after the passage of what is commonly called “Obamacare” is one of the most bizarre examples.  At the time, Emanuel was Special Advisor for Health Policy to Peter Orszag, acting director of OMB.

Emanuel struck me as a strange target.  In 1997, he wrote a strong essay against legalization of assisted suicide and/or euthanasia.  His latest essay opposing legalization of assisted suicide appeared on October 2012 in the NY Times.

Here’s what Wikipedia has to say about the attacks on Emanuel:

Betsy McCaughey described Ezekiel Emanuel as a “Deadly Doctor” in a New York Post opinion article.[29] The article, which accused Emanuel of advocating healthcare rationing by age and disability, was quoted from on the floor of the House of Representatives by Representative Michele Bachmann of Minnesota.[30]Sarah Palin cited the Bachmann speech and said that Emanuel’s philosophy was “Orwellian” and “downright evil”, and tied it to a health care reform end of life counseling provision she claimed would create a “death panel“.[10][31][32][33][34][35][36] Emanuel said that Palin’s death panel statement was “Orwellian”.[37] Palin later said that her death panel remark had been “vindicated” and that the policies of Emanuel are “particularly disturbing” and “shocking”.[38] On former Senator Fred Thompson’s radio program, McCaughey warned that “the healthcare reform bill would make it mandatory—absolutely require—that every five years people in Medicare have a required counseling session that will tell them how to end their life sooner.” She said those sessions would help the elderly learn how to “decline nutrition, how to decline being hydrated, how to go in to hospice care … all to do what’s in society’s best interest or in your family’s best interest and cut your life short.”[39] As The New York Times mentioned,[40] conservative pundits were comparing the Nazi T4 euthanasia program to Obama’s policies as far back as November 2008, calling them “America’s T4 program—trivialization of abortion, acceptance of euthanasia, and the normalization of physician assisted suicide.”[41]

Here’s a summary of what fact-checkers had to say about the allegations:

The nonpartisan Politifact.com Web site described McCaughey’s claim as a “ridiculous falsehood.”[39][42][43][44] FactCheck.org said, “We agree that Emanuel’s meaning is being twisted. In one article, he was talking about a philosophical trend, and in another, he was writing about how to make the most ethical choices when forced to choose which patients get organ transplants or vaccines when supplies are limited.”[45][46] An article on Time.com said that Emanuel “was only addressing extreme cases like organ donation, where there is an absolute scarcity of resources … ‘My quotes were just being taken out of context.'”[10] A decade ago, when many doctors wanted to legalize euthanasia or physician-assisted suicide, Emanuel opposed it.[4] Emanuel said the “death panel” idea is “an outright lie, a complete fabrication. And the paradox, the hypocrisy, the contradiction is that many of the people who are attacking me now supported living wills and consultations with doctors about end-of-life care, before they became against it for political reasons.” “I worked pretty hard and against the odds to improve end-of-life care. And so to have that record and that work completely perverted—it’s pretty shocking.”[47]

To me, Ezekiel has been one of the “good guys” – pushing for better and more efficient health care for everyone, and staunchly opposed to legalization of assisted suicide and euthanasia.

Last Thursday – January 3 – Emanuel published another essay titled “Better, if Not Cheaper, Care.”  Here’s the opening:

IT is conventional wisdom that end-of-life care is an increasingly huge proportion of health care spending. I’ve often heard it said that people spend more on health care in the year before they die than they do in the entire rest of their lives. If we don’t address these costs, the story goes, we can never control health care inflation.

Wrong. Here are the real numbers. The roughly 6 percent of Medicare patients who die each year do make up a large proportion of Medicare costs: 27 to 30 percent. But this figure has not changed significantly in decades. And the total number of Americans, not just older people, who die every year — less than 1 percent of the population — account for much less of total health care spending, just 10 to 12 percent.

The more important issue is that just because we spend a lot on end-of-life care does not mean we can save a lot. We do know that costs for dying patients vary widely among hospitals, which suggests that we can do better. And yet no one can reliably say what specific changes would significantly lower costs. There is no body of well-conducted research studies that has proved how to save 5, 10, much less 20 percent.

Recent studies find that hospice may reduce costs in the last year of life for cancer patients by 10 to 20 percent. But they find no savings from hospice care for patients who die of other conditions, like emphysema or heart failure. No one is sure why hospice care doesn’t save more. It may be because patients are enrolled in hospice care too late, or because hospice services themselves are labor-intensive and not cheap.

Even if we can never save a dime, however, there are good reasons to think about changing end-of-life care practices. While end-of-life care has improved considerably over the last 30 years, many Americans still die in hospitals when they would rather die at home. Nearly 20 percent of deaths occur in an intensive care unit or immediately after discharge, and too many patients experience symptoms like pain that are controllable with appropriate palliative care.

Emanuel goes on to describe four changes in the delivery of care that could improve the lives of patients with serious medical conditions and their families.  They are well worth considering.

Over the next week, I’ll share some material regarding another professional who also has some great ideas about reforming “end of life” practice and is already implementing those changes on a “small” scale.

I’ll also share some other info that gives some pretty stark evidence of just how significant the barriers are to making changes that would make the practice of medicine safer and truly person-centered.