Media Advisory: Disability Advocates Prepared To Oppose Flurry of State Assisted Suicide Bills Being Introduced in 2015

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[Editor’s Note:  For the PRWeb version of this media advisory in pdf format, with a photo of Marilyn Golden and pull out quote, please go here.]

Summary:  Disability rights advocates are preparing to work in broad coalition with medical and other groups that oppose legalization of assisted suicide, as proponents announce plans to introduce bills in several states in the wake of Brittany Maynard’s tragic death.  Representatives of Not Dead Yet, the Disability Rights Education & Defense Fund and Second Thoughts are available for interviews.

Brittany Maynard’s personal story has ignited the debate around assisted suicide legalization.  Most recently, Maynard’s husband appeared in an interview alongside the president of Compassion & Choices, formerly the Hemlock Society, to push legalization.

Disability advocates are deeply sympathetic to all people with a terminal illness, facing the difficulties that lie ahead.  Legalization of assisted suicide can look acceptable and safe when the focus is solely on one individual. However, a closer examination of the issue reveals the immense harm legalization poses to vulnerable people, the elderly and society as a whole.

“If these bills pass, some people’s lives will be ended without their consent, through mistakes and abuse,” said Marilyn Golden, senior policy analyst with the Disability Rights Education & Defense Fund. “No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.”

Assisted suicide legislation was defeated last year in New Hampshire, Connecticut and Massachusetts by a broad coalition of disability rights organizations, medical associations and professionals, palliative care specialists, hospice workers and right to life groups.  Similar coalitions are forming in many states in 2015 to oppose assisted suicide bills.

The following individuals are disability rights advocates who are experts and active on the issue of assisted suicide and able to speak on the record.

Marilyn Golden
Senior Policy Analyst
Disability Rights Education & Defense Fund (DREDF)
Berkeley, CA
(510) 703-0696

John B. Kelly
Director
Second Thoughts
Boston, MA
(617) 536-5140

Diane Coleman
President/CEO
Not Dead Yet
Rochester, NY
(708) 420-0539

For more information, see “Who’s Really Hurt by Assisted Suicide?”  CNN, November 4, 2014.

UK House of Lords Debating “Assisted Dying” Bill on January 16th – Join the “Thunderclap” to Voice Your Opposition

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On January 16th, the House of Lords in the UK will be debating Lord Falconer’s “Assisted Dying” bill yet again. (We all know that the term “assisted dying” is crock; and is only being pushed by advocates of assisted suicide because the public reacts more favorably to the term than anything using the word “suicide.”) Members of Not Dead Yet UK are organizing a protest outside while the debate ensues. Here’s the message from NDY UK about the protest:

Lord Falconer’s Assisted Dying Bill is debated in the House of Lords for the 2nd time on Friday 16th of January 2015. Led by members of Not Dead yet UK, disabled people will be protesting outside the House of Lords. They will be bearing images of 80 disabled individuals who are unable to travel to Central London and sit for any length of time in the cold, but whose opinions should be heard and valued equally with those of celebrities who support the opposing view. Each image will carry a message from that individual summing up their fears about the legalisation of Assisted Dying.

Disabled people are opposed to any change in the law on Assisted Suicide because they fear it will put their lives at risk. They do not accept that the safeguards proposed in the Bill are adequate.

Not Dead Yet UK believes that when people ask to be assisted to die, this is often in isolation and before everything possible has been done to alleviate their situation in terms of medical, social and emotional support. Fears for the future are the most common reasons for a person to request assisted suicide.

Not Dead Yet UK firmly believes that terminally ill and disabled people need the full protection of the law, especially at times when they, their families and friends may be fearful of the future. That is why we oppose the Assisted Dying Bill.

Obviously, there are many people with disabilities who support the protest but can’t make it there themselves.  NDY UK is requesting that as many as people sign up for a “Thunderclap” to help spread the message of our (disability activists) opposition to the legalization of assisted suicide – no matter what you call it.

Just click on this link.

Thunderclap allows easy enrollment for this one and only action – allowing you to customize a message opposing this legislation, as well as participate for as long as you wish. A message will be sent out over twitter, facebook or tumblr on the day of the action (Jan 16) – it’s up to you which platform(s) you want to use to participate.

Here’s a little info about Thunderclap:

Social media is an easy way to say something, but it’s a difficult way to be heard. Thunderclap is the first-ever crowdspeaking platform that helps people be heard by saying something together. It allows a single message to be mass-shared, flash mob-style, so it rises above the noise of your social networks. By boosting the signal at the same time, Thunderclap helps a single person create action and change like never before.

That’s it – please join in this Thunderclap and help our brothers and sisters in the UK voice our opposition and resistance to “better dead than disabled” legislation.

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