Amy Hasbrouck’s Powerful Message to NCD Urges U.S. Disability Leadership Against the Global Threat of Assisted Suicide and Euthanasia Laws

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Dear NCD members:

I have been a member of the board of Not Dead Yet in the United States since 2000.  I am also the director of Toujours Vivant-Not Dead Yet, a project of the Council of Canadians with Disabilities Ending of Life Ethics Committee to inform, unify and give voice to the disability rights opposition to assisted suicide, euthanasia and other ending-of-life practices that have a discriminatory impact on Canadians with disabilities.  I am writing separately to strongly urge NCD to issue an updated position paper opposing assisted suicide that reflects the 18 years of accumulated data on the impact of these practices on people with disabilities since the original 1995 statement.

From a perspective outside the U.S., it becomes clear that the struggle against medical killing is a global one, it is not just about assisted suicide, and that it is inextricably linked with economic and social policies that threaten the lives of disabled people everywhere.

We are currently watching efforts to institute assisted suicide and/or euthanasia (AS/E) in New Zealand, Australia, England, Scotland, France, Germany and (of course) Canada.  In 2014 we also saw the adoption of euthanasia for children in Belgium, increased suicide tourism, and the de facto enlargement of eligibility for euthanasia in Holland, Belgium and Switzerland.

In the U.S. debate, the facts of coercion and inclusion of people with disabilities are covered by the fig leaves of “assisted suicide” and “six months to live.” In Canada and elsewhere, the courts, lawmakers, the media and the public readily accept that euthanasia for those who are “suffering,” means the state will select and kill a subset of the suicidal population; those with disabilities, chronic conditions and terminal illness.

The link between AS/E and “austerity” measures is perhaps most glaring in England.  Policies of the Cameron government to remove disability benefits, destroy the Independent Living program, and limit access to live-in care-givers have wreaked havoc for five years.  These policies go hand-in-hand with the current bill in the House of Lords to allow assisted suicide.  Politicians and the media refer to people with disabilities as scroungers and layabouts, prompting an increase in hate crimes.  “Austerity” is having similar economic and social effects elsewhere, forcing institutionalization, prompting suicides, and creating the conditions for abuse

Disabled advocates around the world look to the U.S. disability rights movement for leadership and policy guidance.  The NCD position paper has served as a benchmark and model already.  An updated statement that presents current evidence of failure of safeguards, abuse, and the enlargement of eligibility criteria would be indispensable to advocates working to stem the tide of AS/E.

Please feel free to contact me if you have any questions.  Thank you very much for your consideration.  Please feel free to contact me if you have any questions.

NDY Urges National Council on Disability to Reissue Position Paper on Assisted Suicide

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The National Council on Disability (NCD) is meeting today.  Many years ago, NCD invited me to attend one of its meetings to debate Hemlock Society co-founder Derek Humphry.  A few months later, NCD issued a groundbreaking and highly persuasive position paper opposing legalization of assisted suicide.  Today, Not Dead Yet is urging NCD to re-issue this important position statement.  If you would like to support our request, please email your support to PublicComment@ncd.gov.

Here is NDY’s public comment:

On March 24, 1997, the National Council on Disability issued a position paper entitled “Assisted Suicide: A Disability Perspective.”  This was shortly before the U.S. Supreme Court ruled that there is no constitutional right to assisted suicide but suggested that individual states might experiment with statutes related to it.

At this crucial juncture, NCD showed great leadership by stating:

Current evidence indicates clearly that the interests of the few people who would benefit from legalizing physician-assisted suicide are heavily outweighed by the probability that any law, procedures, and standards that can be imposed to regulate physician-assisted suicide will be misapplied to unnecessarily end the lives of people with disabilities . . . . At least until such time as our society provides a comprehensive, fully-funded, and operational system of assistive living services for people with disabilities, this is the only position that the National Council on Disability can, in good conscience, support.

The issue became one of national significance again in 2005-2006, when the U.S. Department of Justice challenged the Oregon assisted suicide law under drug licensing statutes.  In June 2005, while that case was pending, NCD reissued the position paper.

We now face another critical development in the public policy debate over assisted suicide.  Late last year, a young woman named Brittany Maynard announced her intent to die by assisted suicide after being diagnosed with a brain tumor.  The public relations machinery of assisted suicide advocacy organizations developed a video that went viral.  These groups have announced plans to have assisted suicide legislation introduced in nearly half of state legislatures in 2015.  Some are already on the table, but many more are threatened.

Not Dead Yet requests that NCD again demonstrate leadership on this subject by reissuing the 1997 position paper at this critical time.  As many Council members are no doubt aware, all major national disability organizations that have taken a position on this issue oppose legalization of assisted suicide.  I would especially like to direct your attention to a very helpful legislative briefing booklet issued by the Disability Rights Education & Defense Fund entitled “A Progressive Case Against An Assisted Suicide Law,” which is attached.

Increasingly, disability rights advocates are being recognized for effective leadership in opposing assisted suicide bills, by proponents and opponents alike.  Now is a perfect time for NCD to again step forward on this issue.  We pledge our support toward such an effort and offer any assistance that the Council would find helpful.

 

An Open Letter to Doctors From NDY Canada’s Amy Hasbrouck

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This is a belated but timeless post of Amy Hasbrouck’s powerful open letter to the Canadian Medical Association (CMA).  Amy is Director of NDY’s sister organization, Toujours Vivant/Not Dead Yet Canada.  She issued the letter in August 2014 in response to the CMA’s report entitled “End of Life Care: A National Dialogue.”

Her message calling for “strong rejection of medical aid in dying and other ending-of-life practices due to their discriminatory impact on people with disabilities” (emphasis added for clarity) is equally applicable to U.S. doctors.  A poorly worded physician poll that didn’t actually refer to “assisted suicide” was reported in Medscape to indicate that 54% of doctors say that physician assisted suicide should be allowed.  Fortunately, the American Medical Association policy and the National Hospice and Palliative Care Organization resolution continue to oppose legalization of assisted suicide, but perhaps U.S. doctors would still benefit from getting letters like this.

15 August, 2014

An open letter to the Canadian Medical Association

I am writing on behalf of Toujours Vivant-Not Dead Yet to members of the Canadian Medical Association to encourage you to communicate a clear and strong rejection of medical aid in dying and other ending-of-life practices due to their discriminatory impact on people with disabilities.

Toujours Vivant-Not Dead Yet is a project of the Council of Canadians with Disabilities Ending of Life Ethics Committee to unify, inform and give voice to the disability opposition to assisted suicide, euthanasia and other ending-of-life practices.

As noted in the report “End of Life Care: A National Dialogue” the CMA’s current policy states that “Canadian physicians should not participate in euthanasia or assisted suicide,” and that to permit this, a “fundamental reconsideration of traditional medical ethics would be required.”  This is a laudable statement.

However the last paragraph of the report offers a very different message, when it speaks of “a general acknowledgement that society would make the final decision concerning euthanasia and physician-assisted dying and that it was not the role of the CMA or the medical profession to dictate what this should be, as a reflection of patient-centred care.”  This kind of equivocal language is troubling to the vast majority of disability rights activists, who have vocally opposed assisted suicide and euthanasia for more than 30 years.

Nearly every person affected by life-ending medical intervention has a disability, whether or not that person also has a terminal illness.  For that reason, this issue is of vital concern to disability rights advocates.  Unfortunately the CMA report fails to factor in many barriers faced by people with disabilities in obtaining high-quality medical care.  These barriers often have the effect of pushing us toward euthanasia and assisted suicide.

First is the unconsidered practice of equating disability with the end of life.  For example, many people with ALS can and do extend their lives by choosing to use a ventilator and/or tube feeding.  Similarly, with proper management HIV/AIDS has become a chronic disease rather than a death sentence.  Yet people with these and other disabilities are usually considered eligible for euthanasia and assisted suicide.

As well, people with disabilities may face medical complications that can be life-threatening without proper management.  These crises can propel someone into the category of eligibility for euthanasia or assisted suicide within a matter of hours.  Finally, both the Québec statute and Steven Fletcher’s proposed bill would include people with disabilities; Québec’s undefined “end-of-life” provision is an enormous loophole, and Fletcher’s bill has no requirement that the person have a terminal illness.

People with disabilities face substantial barriers to health care, causing adverse effects on health outcomes and making them vulnerable to pressure to accept euthanasia or assisted suicide.  Architectural barriers and lack of accessible equipment in doctors’ offices and hospitals mean that people with disabilities do not get examinations and diagnostic tests (such as mammograms).  The lack of expertise in the natural course and typical complications associated with a disability can cause misdiagnosis or improper treatment.  Systemic factors that act as disincentives or obstacles to access, such as insufficient time to communicate effectively with or assist people with disabilities, also diminish health and quality of life.

Another problem not addressed in the CMA report is the attitudes of health care professionals about disability.  Dr. Carol Gill and others have demonstrated that medical staff routinely rate people with disabilities’ quality of life as lower than do the people themselves.  This may be due in part to the fact that when someone seeks medical attention, they are typically in pain or difficulty.  As well, physicians are not immune from the widely-held belief that life with a physical or cognitive disability is a fate worse than death; an opinion expressed throughout the report.  Secondly, where doctors have as their goal to cure their patients, a person with a disability appears to embody the inability of medical science to “cure” people.  Finally, where health care professionals only see patients in the medical setting, they may be unaware of the person’s accomplishments, contributions and competencies.

Another issue not covered in the CMA report is the tendency of advance directives and medical orders for life sustaining treatment to favour refusal of treatment over acceptance.  The refusal option is nearly always offered first.  Use of ventilators and feeding tubes is typically described in negative terms, rather than the life-saving options they are.

The role of the physician includes that of patient advocate, both individually and collectively.  While many doctors are excellent advocates on behalf of their patients, medical associations must also take action to improve access to quality health care services, acknowledge the value of all people under their care, and protect those who are harmed by discrimination and barriers.  The World Medical Association, the World Health Organization, the American Medical Association and the British Medical Association have all taken clear positions against assisted suicide and euthanasia.

The Canadian Medical Association has a crucial role in the national debate.  Anything short of a strong statement against ending-of-life practices would be seen as succumbing to pressure rather than establishing a considered and conscientious policy.

Thank you in advance for your attention.

Amy E. Hasbrouck
Director

At Year’s End, Another Man Shoots Wife in Hospital and Kills Self – Internet Gets All Teary-Eyed Over “Loving” Act

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Lets hope the New Year is kinder and gentler than the old one. The year ended with a highly publicized murder/suicide in NH. Mark Lavoie, at a little past  6 am, shot his wife to death and then successfully killed himself immediately after. He did this just 4 minutes after posting his intent on Facebook. (No criticism of friends on FB – the few who saw the post that early replied immediately and tried to contact him, with one friend even driving to the house and then to the hospital. There was just no time to prevent this.)

From a story on the murder/suicide from NECN:

Mark and Katherine Lavoie both died after shots were fired just after 6 a.m. at Wentworth-Douglass Hospital in Dover, friends and family confirmed to NECN. Authorities have not revealed the pair’s identities.

The New Hampshire attorney general’s office said the investigation is still in its early stages, but the two deaths appear to be the result of a murder-suicide. Autopsies will be conducted to determine the cause and manner of the deaths.

On Facebook, Mark Lavoie stated his anguished motives for wanting to take his wife’s life, writing in part, “now because of my selfishness in dialing 911, she is experiencing the only thing she feared more than her illness, life-support on a respirator.”

Barbara Hanson, a friend of the Lavoies, told NECN that it was not a crime, but an “act of love,” and that the two were soulmates. According to Hanson, it wasn’t a secret that Katherine Lavoie was battling depression, and she said she believes Katherine tried to commit suicide on Sunday night, which was when her husband called 911. Hanson said Katherine Lavoie ended up on life support at Wentworth-Douglass Hospital.

“He knew Kathy would not want to live as a vegetable, and I think he knew he would be so broken without her that he needed to be with her and that’s why he did what he did,” Hanson said, adding, “This was not something that was done out of hate or loathing or anger or despair. This is something that was done out of pure, absolute love.”

In a similar article on the Huffington Post, I posted this response to what was being claimed in the article and the already mounting comments about how devoted and loving Mark Lavoie was:

I’d like to point out what should be obvious. The *only* “evidence” we have that the woman who was killed would have wanted this is from the word of the man who killed her.

There is consistent research of homicide/suicides in elderly people (the pattern here is similar) – 9 out of 10 involve the husband killing the wife. In a majority of cases, there is NO evidence the wife wanted to die or be killed. If it’s about compassion and love at work here, why are men doing almost all of the killing? Or is this about men reacting to stress with violence?

Diane Coleman also posted this reality check on the NECN story:

According to the American Academy of Neurology, a medical prognosis that the wife would remain in a vegetative state would require a waiting period of 90 days from the date she sustained the brain injury, not one or two days, to see what happens. (See https://www.aan.com/guidelines/home/getguidelinecontent/83.) People also may require a respirator temporarily following a brain injury, such as for a few weeks. I don’t have statistics from a medical authority to cite regarding the respirator issue, but have known many brain injured and spinal cord injured people who started out on a respirator and weaned off within a few weeks or months.

The responses of friends and family will sound familiar to readers of this blog. Men who kill wives who are old, ill or disabled are more lauded for their acts than condemned.  But there’s research out there and an abundance of stories that dig deeper – that paint a more accurate and troubling picture.  In this type of murder/suicide (and attempted suicide) the perpetrator is almost always a man killing his female spouse. Most of the victims haven’t asked to die or expressed a wish to die.

We’ve posted a lot of information on this. If nothing else please check out the 2013 post “An elderly woman’s “mercy killing” looking more like murder – an overview of elderly homicide/suicides” for some analysis of other murder/suicides and information on the research regarding these tragedies.

 

John Kelly Reports on Monday’s New Jersey Senate Committee Hearing

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The New Jersey state Senate Health, Human Services and Senior Citizens Committee passed its assisted suicide bill, S382, out of committee yesterday, December 15th. Senate President and co-sponsor Steve Sweeney initially said that a full Senate vote would be held on Thursday, the last scheduled full session of the year, but later indicated that the vote would not be called this week.  Susan K. Livio of NJ.com reported that “Sweeney said he and other supporters would embark on an ‘educational campaign’ to discuss the matter with colleagues.”

As Dustin Racioppi wrote at NorthJersey.com:

It isn’t known if it has the 21 votes to clear the Senate, though Senate President Stephen Sweeney, D-Gloucester, has come out in support of the bill. In a statement, he said he believes there “needs to be an honest discussion about this option.”

Speculation is that Sweeney plans to twist some arms – as he may have done in the committee itself – in order to pass a bill and score points against Republican Gov. Chris Christie, who has pledged to veto it.

The good news for the people in the crosshairs is that great disability rights activists showed up to testify against the bill, including reportedly a dozen in wheelchairs. From Philadelphia ADAPT and Not Dead Yet came German Parodi and Alan Holdsworth. German said that when he was unconscious after his spinal cord injury 21 years ago, doctors urged his grandmother to “put him down.” We are so glad she didn’t!

Holdsworth was quoted at the bottom of Racioppi’s article:

“What we have is palliative care for the rich and death for the poor. Is that the road we’re really going down here?” said Alan Holdsworth, a member of the group Not Dead Yet.

Meghan Schrader represented Second Thoughts Massachusetts and the millennial generation (which she says is opposed to assisted suicide 54%-45%) in describing disabled foster kids’ distance from the Brittany Maynard idea of personal “autonomy.” Stephen Mendelsohn drove from Connecticut to call out the incredible me-me-me selfishness of Compassion & Choices, the arch-proponents behind the bill.  Making assisted suicide just another medical treatment option doesn’t only affect the C&C elite, but also thousands of elders and people with disabilities who must deal with a cost-cutting health care system and sometimes face cruel abuse from family members and caregivers.

Opponents of the bill vastly outnumbered proponents, but it appears that Compassion & Choices, who was not present, was privy to the plan settled before the hearing even began: that amid concerns about safeguards and teen suicide, the bill would be passed out of committee “without recommendation.”  That piece of information was revealed by Republican Sen. Bob Singer, who cast his “no” vote.

Two Democrats who voted to pass the bill out of committee, Chair Sen. Joseph Vitale and Sen. Robert Gordon, said they would vote against the bill on the floor.

Fortunately, the strong turn out of disability rights advocates opposing the bill gave everyone a chance to see how we live with dignity while we fight the insultingly named “death with dignity” bills.  The C&C zealots don’t care about assisted suicide deaths due to mistakes, coercion and abuse, which they seem to consider as acceptable collateral damage.  But none of us are expendable.  We’re Not Dead Yet and nothing about us without us!