BBC World Service – Liz Carr Presents Part 1 of “Euthanasia Road Trip” Documentary

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Unlike most people, who manage to be good at one or two things, Liz Carr is a broadcaster, actor, international disability rights activist, stand-up comedian and writer. Her latest acting gig is as forensic examiner Clarissa Mullery on the popular BBC One show Silent Witness.

We can now add documentarian to the list.

Carr is presenting a 2-part documentary on BBC World Service titled “Euthanasia Road Trip.”  Part 1 has aired and is available to listen to on the BBC World Service site.  Here’s how the site describes the documentary:

The debate over assisted suicide and euthanasia is a passionate one. But as the discussions continue to rage around the world, there are a few places where assisted death is already legal. Switzerland, Belgium, Luxembourg, the Netherlands, and Oregon and Washington States in the US all have laws permitting assisted suicide or euthanasia in some form.

In this two-part documentary for the BBC World Service, actress and broadcaster Liz Carr goes on a personal journey to all six places to see how it works. As a long-standing campaigner against assisted suicide legislation in the UK, she wants to find out what assisted death means in practice – and whether she’s right to be concerned.

In part one, Carr travels to Switzerland, where she visits the rooms where volunteers help people die, and finds out why the Swiss law on assisted suicide goes back to the 19th Century. In Belgium she meets a doctor who admits to performing euthanasia before it was legal; and in Luxembourg, she finds out why the law on assisted suicide nearly caused a constitutional crisis. Carr questions whether it is possible to balance the right of the individual who wants to die with the responsibility of society to protect those who don’t.

I’ve listened to it twice through – and it’s excellent so far.  Carr talks to family members of people who have died through assisted suicide or euthanasia, promoters of the legislation, physicians and disability activists.  It’s far more even-handed than the pro-euthanasia documentary makers have produced.  You’ll also learn more about the history of legislation and practice than you’ll ever read in a mainstream press article.

Carr’s interviews are great, and often revealing.  Most interesting, so far, are her own reflections about her own opposition to assisted suicide and euthanasia even as she engages with people who are completely comfortable with the practice(s).

After talking to two main advocates of euthanasia in Luxembourg who are obviously dissatisfied with the current parameters of the law (they would like to expand them), Liz Carr shares this  this terrific articulation of the slippery slope:

To me, this is what’s alarming about assisted death legislation; how easily a law can be changed once it’s introduced. The Luxembourg campaigners pushed for a law with strict limits and safeguards, which seems reasonable to most. But then the next step is to extend it to less straightforward groups like under-eighteens or people with dementia. Campaigners against assisted suicide like me often talk about the slippery slope. And I think this is what it means; Once a law’s in it’s unlikely ever to go away and when it gets extended it’s without all the debate and discussion that we have when it first goes through. It hasn’t happened in Luxembourg yet, they’ve only had five cases so far. But the way the people who pushed it through talk about the law makes me worried about the future.

Please tune in and listen to Part 1 of “Euthanasia Road Trip” here.  (click the ‘listen now’ button’)

Bill Peace in Hastings Center Bioethics Forum: “Euthanasia in Belgium: The Untold Story”

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Bill Peace, who writes the Bad Cripple blog and is one of our new board members at Not Dead Yet, has a new commentary out in the Bioethics Forum at the Hastings Center website.

Here’s an excerpt from the article:

Belgian twins, Eddie and Marc Verbessem, were euthanized by lethal injection at Brussels University Hospital in Jette in December. The Verbessem brothers, deaf since birth, were cobblers by trade who lived and worked together their entire lives. Several years ago they were diagnosed with a genetic form of glaucoma that would render them blind. The brothers feared dependency and believed being deaf-blind would cause them to experience “unbearable suffering.”

Under Belgian law euthanasia is permitted if a person is able to make his or her intensions clear to others and a physician determines that the person is experiencing “unbearable pain.” The Verbessem case has generated controversy worldwide. Multiple news reports characterized the deaths as a mercy killing. The message was clear: death is a logical and reasonable option if a person will become deaf-blind. By logical extension there are some disabilities that are a fate worse than death. One does not need to be terminally ill to be euthanized.

Careful readers might notice that the use of terminology is a little confusing here.  But that is probably just a reflection of the press coverage of this incident, as well as coverage of euthanasia in Europe in general.  “Unbearable pain” and “unbearable suffering” aren’t really interchangeable terms, but both – or variants – have been used to describe the reason for the double deaths of Eddie and Marc Verbessem.  (Bill points out problems with this issue later on in the article)
The reason people were “shocked” by this story (I wasn’t one of them) is probably due to the widespread misreporting of the criteria for euthanasia eligibility in the Netherlands, Belgium and Luxembourg.  Reuters and the AP regularly misstate euthanasia guidelines in those countries as applying to the “terminally ill” in “unbearable pain.”  Euthanasia eligibility in both countries always involved wider “eligibility” standards than “terminality” and “pain.”  Unfortunately, when I call to ask for corrections – giving links to government sources that define the eligibility criteria – I just get blown off.  Mostly, I think, it’s because I’m the only one who’s complained.  Which means, of course, that bioethicists – guardians of public ethical discourse – don’t see this as misinformation worth correcting.  Without naming specific individuals, there are several American bioethicists who could probably get a correction from news organizations if they called.  But they don’t – and they don’t write media columns or journal article complaining about it.
This is nothing new.  About eight years ago, I wrote a “Perspectives” essay that appeared in the Hastings Center Report, concerned with the news that doctors in the Netherlands were pushing for acceptance of euthanasia of babies with spina bifida.  Here’s an excerpt from that essay:

…the Associated Press story on the Groningen protocol misinformed readers that the protocol applied to “euthanizing terminally ill newborns.” This is a gross distortion: Verhagen and Sauer made no attempt to hide that they were talking about newborns with “serious medical conditions.”It’s both puzzling and disturbing that this misinformation was met with total silence from the bioethics community. You would think that bioethicists, eager to claim expertise and promising to bring clarity to public debates, would have jumped all over the Associated Press report. This silence reinforces the cynical view that the righteous anger bioethicists express at outspoken disability advocates has less to do with providing clarity than protecting turf.

I’m more cynical than I used to be – I think that the reason bioethicists are silent on the rampant misinformation about euthanasia in Europe is that they’re OK with misinformation that makes euthanasia acceptable to more people.

In case  I have to repeat myself, please go and read the rest of Bill Peace’s article at the Bioethics Forum.

Vermont: Great Article by Activist Rosemarie Jackowski on Assisted Suicide

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(Editor’s note: Rosemarie Jackowski is a political activist and journalist who lives in Vermont.  The article below has appeared in other venues and is reprinted with permission.  The author gives permission to reproduce this article – in its entirety only – and proper attribution of her authorship.)

 

Suicide

by Rosemarie Jackowski

The “Assisted Suicide Bill” does exactly what it is designed NOT to do. It will eliminate choice for the most vulnerable. Unintended consequences are sure to follow if this becomes law. Prejudice cloaked in good intentions is still prejudice.

Assisted suicide is a big topic that might be coming to a legislature near you soon. In Vermont most citizens expected movement toward Single Payer Health Care during this legislative session. Instead, much of the discussion is about physician assisted suicide. The Senate Health and Welfare Committee voted 5 to 0 to approve the legislation.

Those on both sides are passionate in their beliefs. Some oppose suicide on religious grounds. Some oppose on atheistic grounds. Most atheists do not believe in an after life and therefore place a greater value on life here and now.

Everyone already has the right to reject medical care. Those who don’t want to receive treatment for a serious illness, can simply make their wishes known. The problem is not too much health care. The problem is lack of access to care.

Those who support suicide argue that it is their body and anything done to it should be up to them with no government interference. They argue that they will not accept any limitations on their choices.

Those opposed make the argument that the government restricts what persons can do with their bodies all the time — every time someone is arrested for smoking pot. Currently, some are celebrating — some are mourning — the largest drug arrest in recent times. In small town Bennington, more than 60 have been targeted in a massive military type drug bust complete with humvees, helicopters, and 100 law enforcement officers in full military gear. We have not had total rights to our own body for a very long time.

We need more, not fewer rights. Including government approved suicide, as an end of life option, does not give more rights — in reality it takes them away.

The proposed Assisted Suicide Law will deprive many of choice. Recent history shows that more than 300 cases of reported abuse of the disabled/elderly have been ignored by the State. This is evidence that the State cannot protect the vulnerable. An Assisted Suicide Law will add another layer of risk. It will make things worse.

For those pressured to die, there will be no choice. Behind closed doors in private, who will be there to protect them? Elder abuse is a major hidden problem. Talk to anyone in a nursing home — give them anonymity, and they will tell all.

Some legislators promise ‘safeguards’. There are no safeguards that can insure that there will not be abuse. Some of the most vulnerable will be pressured to end it all for the convenience and sometimes for the financial benefit of others. Patients will be unduly influenced into giving in to family members. Many elderly/disabled have loving supportive families. It is those who do not, who are at the highest risk. There is no way that abuse can be prevented. Imagine being isolated with care givers – Stockholm Syndrome.

Reported on January 26, 2013 in the Rutland Herald: “…The House Human Services Committee heard testimony Thursday that APS failed to intervene in a Bennington County case of an 89-year-old woman whose daughter was threatening to kill her…” It appears that the daughter wanted the mother’s room and was willing to kill to get it. Those in loving functional families need to know that there are others who are not so blessed.

How many times has the argument been made that the last six months of life consume too many health care dollars. Recently there was a conference at a local nursing home. The elderly residents had been promised a nice afternoon discussion complete with tea and cookies. Instead they were told, by the visiting ‘experts’, that maybe they were becoming a burden to their loved ones. Maybe they should consider forgoing all medical care. I watched tears well up in the eyes of many of the elderly residents. They left the conference room that day with a heavy burden of guilt, just because they were not yet ready to die.

Jared Diamond, author of, The World Until Tomorrow, compares the culture today with other cultures. Diamond discusses causes and effects of discrimination against elders in our culture. One example of discrimination is the widespread policy of ‘age based allocation of hospital resources’.

Ageism is ingrained in our culture. Could the ‘duty to die’ be imposed, or even just suggested, to any other group that faces discrimination? The devaluing of the elderly and disabled is now an accepted fact of life and death. That this bill is under consideration is proof. If it was a bill that did not show prejudice against the most vulnerable, it would be written to include everyone — young and old, healthy and sick. Sometimes the young and healthy would chose to end it all.

Years ago, my best friend attempted suicide. She was healthy. She was young — in her 30s. A minor unpleasant family event caused her to become temporarily depressed. One night she attempted suicide. The police intervened. She was rushed to the hospital. There the police told her that charges would be filed. Upon her release from the hospital she had to appear in Court and explain to the judge why she had attempted suicide. Needless to say, this made everything worse. She soon accepted a job with a cruise ship line and sailed away. True story — happened in New Jersey. Is suicide still against the law there?

More recently, another friend was searching for a way out. He was not in physical pain. He was not terminally ill. His problem was that he was in a nursing home and the conditions there were not good. What he needed was a Health Care Advocate — someone to advocate for him. The need for Health Care Advocates is one of the biggest issues of our time. Families are dispersed and distant. Often the elderly are abandoned. Friends die. Suddenly a nursing home is the only option. There have been two reported murders in local nursing homes in recent years. No one can estimate how many murders go unreported. Isolation, neglect, and poor living conditions are other important issues.

The Assisted Suicide Bill is the wrong answer to the wrong question. The important question is: How can we improve life and death for all. There are three unmet needs that should be addressed by the legislature.

First: health care must be made available to all. Universal, comprehensive Single Payer is the answer.

Second: the alleviation of pain must be considered. Ethics require that everything scientifically possible should be done to eliminate suffering. It is usually possible to do that without killing the patient.

Third: and most important of all, those at high risk must be protected. There is only one way to do that. We must set up a system of Heath Care Advocates. This does not have to cost tax payers a lot of money. A system based on volunteers could work. The main qualification would be compassion and the pledge to honor privacy.

All we really wanted was Single Payer access to health care. Well, we also wanted vision and dental care included. Maybe that’s what got the big guys in Montpelier upset.

Will we soon see Grandpa set adrift on an ice floe on the shore of Lake Champlain? There must be a better way.

RELEASE: Princeton Attorney Anne Studholme to Testify on Behalf of Disability Groups in New Jersey Assembly Hearing on Assisted Suicide

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For Immediate Release

On February 7, 2013, Princeton attorney Anne Studholme will testify on behalf of two national disability rights groups in a hearing held by the New Jersey Assembly Health and Senior Services Committee on a proposed bill to legalize assisted suicide. Studholme will be representing Not Dead Yet and ADAPT, which oppose the legislation as a form of discrimination against old, ill and disabled people.

Princeton, NJ (PRWEB) February 07, 2013

On February 7, 2013, Princeton attorney Anne Studholme will testify on behalf of two national disability rights groups in a hearing held by the [New Jersey Assembly Health and Senior Services Committee on a proposed bill to legalize assisted suicide. Studholme will be representing Not Dead Yet and ADAPT, which oppose the legislation.

Assembly bill 3328, entitled the “[New Jersey Death With Dignity Act,” was introduced by Assemblymen John Burzichelli and Timothy Eustace on September 27, 2012 and is patterned after laws passed by ballot referenda in Oregon and Washington states.

Not Dead Yet is described as “a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people.”

ADAPT is described as “a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.” The group’s primary focus is on expanding Medicaid home care alternatives to nursing facilities. The group garnered national press attention when actor Noah Wiley was arrested with over 100 members for chanting in the Cannon Building rotunda in Washington, D.C. last spring.

Leading proponents of bills to legalize assisted suicide for the terminally ill often claim that the views of disability organizations aren’t relevant. “While it’s true that people with disabilities aren’t usually terminally ill,” said Not Dead Yet president and CEO Diane Coleman, “the terminally ill are almost always disabled. We also live on the front lines of the health care system that serves (and too often underserves) dying people. One might view us as the proverbial ‘canaries in the coal mine’ who are alerting others to dangers we see first.”

Studholme’s testimony will emphasize the disability groups’ charge that assisted suicide legislation discriminates against old, ill and disabled people. According to her testimony:
“Central to the civil rights of people with disabilities is the idea that a disabling condition does not inherently diminish one’s life; rather, surrounding barriers and prejudices do so. In contrast, assisted suicide gives official sanction to the idea that life with a disabling condition is not worth living. It sets up a double standard for how state licensed professionals respond to someone who says they want to die, mandating suicide prevention for one group, authorizing suicide assistance for the other.”

Studholme, of the firm Taylor, Colicchio & Studholme, LLP, previously represented Not Dead Yet, ADAPT and other national and New Jersey disability groups in filing a friend of the court brief in the Appellate Division of the Superior Court of New Jersey in the Betancourt v. Trinitas Hospital case (Docket No. A-3849-08T2). That case involved hospital efforts to withdraw life-sustaining treatment over the objections of the family of a 73-year-old man who did not have an advance directive. The disability groups argued on the side of the family, but the court dismissed the case as moot due to the patient’s death.

“There are important differences between the right to refuse unwanted medical treatment, which we support, and doctor prescribed suicide,” said Coleman. “But the Betancourt case involved doctors who wanted to impose the removal of life support over the objections of a family that knew the man’s beliefs. If some doctors will fight in court for the power to overrule the patient and cause their death, how can we talk about making doctors the gatekeepers over a sea change in public policy like assisted suicide?”

For more information, contact:

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Please access the original PRWeb press release for pdf version and copy of testimony.

RELEASE – Vermont: President of State Coalition for Disability Rights Testifies Against Legalization of Assisted Suicide in State Senate Committee Hearing

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President of Vermont Coalition for Disability Rights Testifies Against Legalization of Assisted Suicide in State Senate Committee Hearing

Ed Paquin, president of the Vermont Coalition for Disability Rights, represented the disability rights community in hearings held in the state’s Senate Health and Welfare Committee last week regarding a bill to legalize physician assisted suicide. Not Dead Yet, a national disability group opposed to the legislation, applauded Paquin’s testimony, which described the dangers that state and national groups say the legislation poses for people with disabilities.

Rochester, NY (PRWEB) February 02, 2013

Ed Paquin, president of the Vermont Coalition for Disability Rights, represented the disability rights community in hearings held in the state’s Senate Health and Welfare Committee last week regarding a bill to legalize physician assisted suicide. Paquin was the only invited witness from Vermont’s disability organizations.

“The Senate Health & Welfare Committee heard a lot of testimony through the week with some effort at balance, but with very little emphasis on input from the disability community,” Paquin said following the Friday hearing at which he testified. “I believe I was the only individual specifically from a disability organization invited to speak, though some spoke in the large public hearing within their very short time slots.”

Not Dead Yet, a national disability group opposed to the legislation, applauded Paquin’s testimony, which described the dangers that state and national groups say the legislation poses for people with disabilities.

In his testimony, Paquin addressed several issues, including the bill’s use of the word “dignity” in its name, “Death With Dignity.” “Many people with disabilities understand the euphemism to convey that it is more dignified to die than to live in pain, or with a lack of mobility, or without the ability to self-care,” Paquin said in his testimony. “These are day-to-day factors in the lives of many people with disabilities, and the implication that our lives lack dignity adds to a stigma that is not only unwarranted but damaging.”

Paquin highlighted the concern that the Oregon Reports indicate that disability related problems that have not been adequately addressed are reasons that people receive prescriptions for assisted suicide. “It is short sighted and naïve to think that outside and even inside, personal influences will not bear on a frail individual,” Paquin said. “Even with the fairly sanitized data being collected ‘being a burden’ is identified as a motivating factor in a number of cases.”

Paquin also referred to Dr. Ira Byock, one of the previous day’s witnesses. “Wouldn’t we be better served as a society to train our medical professionals in the kind of end of life care that Dr. Byock described in his testimony?” Paquin noted.

Later in the day, Paquin was part of a debate on the issue broadcast on Vermont Public Radio.

Not Dead Yet has worked with Vermont disability rights advocates for several years as they have faced repeated attempts to legalize assisted suicide. “Many years ago, the Vermont Ethics Society brought me in for a debate with Ralph Mero, a leading national assisted suicide proponent,” said Diane Coleman, CEO of Not Dead Yet. “The Vermont disability community really stepped up then and has been very effective in communicating the realistic dangers in this type of bill throughout the last decade.”

The Vermont Center for Independent Living (VCIL) has also been very vocal in opposing legislation to legalize physician assisted suicide. VCIL’s opposition is consistent with the position held by the National Council on Independent Living (NCIL).

One concern is for those with new injuries or serious health conditions. “We understand what it means to deal with issues like the loss of one’s former dreams as well as the loss of physical abilities,” said Kelly Buckland, executive director of NCIL. “If assisted suicide had been legal in the past, even if it were supposedly only for those with ‘terminal’ conditions, many of us would not be here today.”

Please click here for original press release and to download a copy of Ed Paquin’s testimony.

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