RELEASE: Disability Rights Group Announces Opposition to Massachusetts Assisted Suicide Initiative

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Boston, MA (PRWEB) December 09, 2011 

On Thursday, December 8 at 12:30 p.m. at the Massachusetts State House, disability rights advocates, speaking as part of a new group they are calling Second Thoughts, publicly announced their opposition to a proposed assisted suicide 2012 ballot initiative in Massachusetts. Led by Boston disability activist John Kelly, with members from a number of the state’s centers for independent living run by people with disabilities, the group plans to add its voice to the growing and diverse opposition to the initiative.

Kelly spoke at a press conference attended by about 25 advocates. Karen Schneiderman, a woman with a disability who testified against an assisted suicide bill in 2010, spoke as a member of Second Thoughts as well. There were also remarks from other individuals who oppose legalization of assisted suicide, including former State Representative Mark Carron.

“Some people may ask why disabled people are speaking out about problems with a proposal that’s supposed to be about terminal illness,” said Kelly, “but when you look at the reasons Oregon reports for giving lethal prescriptions, it’s mainly about the social and emotional issues of becoming disabled, like depending on others and feeling like a burden.”

The top five reasons Oregon doctors report patients requesting suicide all relate to the perceived quality of life — not the conditions of actual dying — of the patient. In order, the reasons listed are the “loss of autonomy” (89.9%), “less able to engage in activities” (87.4%), “loss of dignity” (83.8%), “loss of control of bodily functions” (58.7%) and “feelings of being a burden” (38.3%) (Death With Dignity Act Annual Reports).

“There are so many problems with this initiative, from everyday inaccuracies in diagnosis and prognosis, to a lack of meaningful safeguards against abuse and pressure from self interested family,” said Paul Spooner, executive director of Metro West Center for Independent Living. “The reality is that once the lethal dose is in the house, an heir to the person’s estate could administer it without anyone’s knowledge.”

The Massachusetts disability advocates have reached out for support from national disability groups that have long opposed assisted suicide, especially Not Dead Yet and the Disability Rights Education and Defense Fund.

Last weekend, on December 3, the Massachusetts Medical Society, which represents 23,000 of the state’s
physicians, voted to sustain its long standing opposition to doctor assisted suicide. According to the Society’s press release, Lynda Young, M.D., president of the Society, said that “Physicians of our Society have clearly declared that physician-assisted suicide is inconsistent with the physician’s role as healer and health care provider. At the same time we recognize the importance of patient dignity and the critical role that physicians have in end-of-life care.”
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Massachusetts: Good News on Mass. Medical Society – Organization reaffirms opposition to assisted suicide

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As readers of this blog know, there is currently a drive in Massachusetts to put legalization of assisted suicide on the ballot next fall.  Naturally, there has been a lot of concern regarding diversity in a coalition opposing the legalization of assisted suicide in that state.  One source of concern has been whether or not the Massachusetts Medical Society would maintain its stance in opposing assisted suicide as a legitimate medical practice.

Last week, the Society met and voted – on this as well as other matters.  NDY activist John Kelly was turned away, but managed to get a few NDY flyers in the meeting by way of a retired doctor acquaintance he encountered while he was there.

I’m happy to report that the Society strongly reaffirmed its previous opposition to legalization of assisted suicide:

MMS Physicians Reaffirm Opposition to Physician-Assisted Suicide

December 3, 2011Contact: Richard P. Gulla
Phone: (781) 434-7101
Email: rgulla@mms.org

Waltham, Mass. — December 3, 2010 – The Massachusetts Medical Society, the statewide association of physicians with more than 23,000 members, today voted to reaffirm its opposition to physician-assisted suicide, with its House of Delegates voting by a wide margin to maintain a policy the Society has had in effect since 1996.

Opposition to physician-assisted suicide was part of a larger policy statement that includes recognition of patient dignity at the end of life and the physician’s role in caring for terminally-ill patients. The policy was approved by more than 75 percent of the Society’s delegates. (Emphasis added.)

Lynda Young, M.D., president of the Society, said that “Physicians of our Society have clearly declared that physician-assisted suicide  is inconsistent with the physician’s role as healer and health care provider. At the same time we recognize the importance of patient dignity and the critical role that physicians have in end-of-life care.”

Dr. Young said the policy goes beyond a single statement of opposition to physician-assisted suicide to include “support for patient dignity and the alleviation of pain and suffering at the end of life.” Additionally, it includes the Society’s commitment to “provide physicians treating terminally-ill patients with the ethical, medical, social, and legal education, training, and resources to enable them to contribute to the comfort and dignity of the patient and the patient’s family.”

The policy was one of several reaffirmed and adopted at the Society’s 2011 Interim Meeting, which brings hundreds of physicians from across the state to examine and consider specific resolutions on public health policy, health care delivery, and organizational administration by the Society’s House of Delegates, its policy-making body. Resolutions adopted by the delegates become policies of the organization.

Great news, but the work has hardly begun.  We need to see if other stakeholders are going to step up and if everyone can work effectively in a coalition.  We’ll keep folks posted here.  –Stephen Drake

Canadian Assisted Suicide Case Sparks Dueling Letters on Disability

Alison Davis, assisted suicide, Canada, Council of Canadians with Disabilities, court cases, diane coleman, disability rights advocates, media issues, Our News & Commentary Blog, Rhonda Wiebe

Canadian assisted suicide proponents lost a bid to legalize assisted suicide through Parliament last year.  This year, they turned to the courts to challenge Canada’s laws against assisted suicide and euthanasia as unconstitutional.  The case is now before the Canadian court in Vancouver and the proceedings began November 14, 2011.  Plaintiffs include a woman with ALS.

The public debate is well underway.  On November 13, the Calgary Herald published an op ed by three opponents of legalization entitled “Why we should be afraid of assisted suicide.”   The authors describe the case as follows:
Carter vs. Attorney General of Canada brings a constitutional challenge to Canada’s laws prohibiting assisted suicide and euthanasia. The case also seeks to legalize these practices as a medical treatment. Last year, a bill in Parliament seeking a similar result was overwhelmingly defeated…. The vote was 228 to 59.
Carter seeks to allow a medical practitioner or a person “acting under the general supervision of a medical practitioner” to assist a patient’s suicide. … In the context of traditional medical treatment, “a person acting under the general supervision of a medical practitioner” would include a family member. …
As the authors point out, eligibility would not be limited to people whose condition is terminal:
In Carter, the amended notice of civil claim argues that laws prohibiting physician-assisted suicide are unconstitutional for patients who are “grievously and irremediably ill.” The term is not defined. The amended notice of civil claim does, however, give these examples of qualifying diseases/ conditions: “cancer, chronic renal failure and/or cardiac failure, and degenerative neurological diseases such as Huntington’s disease and multiple sclerosis.” The phrase “grievously and irremediably ill” would also appear to apply to chronic conditions such as diabetes and HIV/AIDS. People who have these diseases and conditions can have years and, sometimes, decades to live.
In response to this op ed, James Swanson, a man with a severely disabled father and friend, sent an angry letter filled with the rhetoric of disability bigotry, which the Herald’s editors entitled “Trapped alive”: 
With one deft scratch of the quill, the authors of this article have condemned hundreds of people to a life in hell. They include both my father and a good friend, who both live in Edmonton, and are both intelligent people who have become trapped in bodies that are failing. My father’s life, as he knew it, ended several years ago when he was struck down by an automobile while out jogging. What parts of his body that are left, reside in a wheelchair. This once-active man in his 90s now resides in a body that is self-destructing in a painful manner. My dad has no quality of life, only a hope that the next day will not be as painful as the last.
My friend is still practising her profession, despite the advanced ALS that has a hold on her. She has made arrangements for a death with dignity in a far more compassionate country. Her ability and foresight have allowed her to control her own future.
Our non-disabled allies called out for a disability response, and two were carried in the online publication.  Mine focused on Swanson’s devaluation of people with severe disabilities and called for equality in suicide prevention: 
James G. Swanson’s letter demonstrates the profound devaluation that too many feel toward those of us with severe physical disabilities. Swanson describes his father and a friend, disabled by an accident and ALS, respectively, as “trapped” and “condemned to a life in hell.” Social messages that one is “better off dead than disabled” permeate society, including our families.
Swanson’s solution to the so-called problem of disability is assisted suicide. Like most, he hasn’t noticed the difference between suicide and assisted suicide. Apparently, he doesn’t think it matters if someone’s family views their life as devoid of quality. There’s no sign of concern that we might feel that our existence is a burden to those closest to us. The Council of Canadians with Disabilities rightly opposes assisted suicide. A society that not only agrees with a disabled person’s suicide, but guarantees that our suicide attempt results in death, is not treating us as equals. We deserve the same suicide prevention as everybody else, not a streamlined path to death.
The second, submitted by Alison Davis, a disabled woman who leads the UK group No Less Human, talked about the life she would have missed if assisted suicide were legal:
I was glad to see your excellent editorial stating the case against euthanasia. If it had been available to me some years ago, I wouldn’t now be writing to you. I have several severe disabling conditions. I use a wheelchair full time and a vent at night. I have severe pain, which even morphine can’t control.
I wanted to die for more than 10 years, at a time when doctors thought my life expectancy was very short. I attempted suicide seriously several times, and was saved, only because friends found me in time and took me to the emergency room, where I was treated.
At first, I was angry with them for thwarting my wishes. Now, I’m eternally grateful. I want to live now, even though my pain is worse than it was when I wanted to die. What changed my mind is friends who refused to accept my view that my life had no value, and a group of very poor children, who loved me wonderfully and overwhelmingly. I found a reason to live in reaching out to help others, rather than turning the negativity on myself. If assisted suicide had been available then, no one would ever have known the doctors’ prognosis was wrong, or that I’d be missing the best years of my life.
The Canadian Department of Justice has filed various affidavits in the case, including one by Rhonda Wiebe, a woman with disabilities who is Vice President of the Council of Canadians with Disabilities   and Co-Chair of the CCD Ending of Life Ethics Committee and, I’m happy to report, a new member of Not Dead Yet’s Board of Directors.  We’ll be following the case closely. – Diane Coleman

Hydrocephalus, Spina Bifida and Medical Killing – Current News from DRI and a History Supplement from Me

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Yesterday, someone forwarded me the latest mailing from Disability Rights International (DRI), this particular one came in the form of a message from the organization’s president, Laurie Ahern.  The shortest explanation of the organization’s mission can be found in its mission statement on the “about” page of their site: “Disability Rights International is dedicated to promoting the human rights and full participation in society of people with disabilities worldwide.”  There is, of course, a lot more to know and learn about the organization than that and I encourage people to explore DRI’s site at the links provided above.


The message from Laurie Ahern regarded, in part, the baby boy seen in the picture below.

The picture above is of a 6 month old boy lying in a crib whose head recently burst due to untreated hydrocephalus. Doctors expect the boy to die “anytime.”

source: http://ih.constantcontact.com/fs031/1101730023584/img/50.jpg

The following message can be found on the main page of DRI right now, but main page items tend to get moved off the page after a few weeks or months.  This alternative link looks like it might be permanent.

Excerpt:

We Need Your Help to Protect the Rights 

of Children with Disabilities Around the World 
 Dear DRI Supporters,
Several weeks ago, I visited a baby house in Eastern Europe. It houses about 130 infants and small children, a third of whom are children with disabilities. Most babies are eventually returned to their birth parents, put into foster care or are adopted. But not the babies with disabilities. They have nowhere to go. Among children with disabilities, almost 30% died last year.
I walked with trepidation into each dark room. In the middle of the day, not a sound. Not one child crying. They learn quickly that no one comes. One room after another, children with disabilities lay dying. Hydrocephalus and spina bifida are left untreated, despite the fact that the country has the means to care for these conditions. I was told that doctors will not perform surgery on children with disabilities who “have no future.” And many die from lack of touch and love, despite adequate food and heat.
One six month old baby with hydrocephalus still haunts my dreams. The condition (caused by a buildup of spinal fluid in the head) can easily be corrected by the insertion of a shunt. But instead, this little boy had a “burst” -his head blew a hole from the pressure. He lay in his crib dying an agonizing death. 

 The rest of the message describes the situation in other locations and the efforts that DRI is undertaking to end this large-scale abandonment and extermination of children with disabilities.  Repeating myself, it’s worth your time to read the rest of the message and consider adding DRI to your list of organizations to consider supporting with a contribution.

I want to caution people – specifically and especially my fellow Americans – that we shouldn’t feel any sense of moral superiority here.  The picture of the child with hydrocephalus who was abandoned and left untreated to die happened all too often in the United States, although no one can be certain how many children died that way.

One notorious example involved a “study” at Oklahoma’s Children’s Hospital a little over three decades ago.  Here’s a link and an excerpt to a blog entry on my personal site that reproduced the 1994 article “It Can Happen Here.”

Selecting Kids with Spina Bifida and Hydrocephalus for Death
Oklahoma, 1977-1982

It Can Happen Here
by John R. Woodward

American doctors once conducted an experiment that proved you can kill the disabled babies of poor families and get away with it. Their research was funded by the Federal Government. Twenty-four babies with spina bifida lost their lives.

The experiment was declared a success. Yes, it can happen here.

Between 1977 and 1982, four doctors and a social worker at the Children’s Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child’s future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic – and more accurate – information about their child’s potential.

None of the parents knew they were part of an experiment. Parents who were assigned to the “pessimistic outcome” group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a “do-not-treat” recommendation from their doctors.

 As far as we know babies with spina bifida and hydrocephalus die through withholding of treatment in the US, although it’s probable that withholding of nutrition and hydration coupled with pain relief shorten the dying period and decrease the suffering for the infants.

And, of course, in the Netherlands, they moved on several years ago to the outright killing of infants with spina bifida and hydrocephalus.  The fact that medical professionals in the US and the Netherlands have made ending the lives of infants with disabilities more efficient and freer of discomfort is a rather shaky claim to the high moral ground.

So let’s all remember as we agree that outrage is legitimate over the treatment of infants with disabilities in Eastern Europe, the United States and other “progressive” countries really don’t have a high moral horse to sit on.  –Stephen Drake, born 56 years ago today; a survivor of hydrocephalus and a “do not treat” recommendation.  (and three shunt operations)

Followup – DutchNews.nl Corrects Errors in Euthanasia Story While Associated Press Ignores Its Errors

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As promised in last week’s blog entry, I contacted responsible parties at both the Associated Press and DutchNews.nl about needed corrections in a Dutch group’s advocacy for ‘mobile’ euthanasia teams that could provide that “service” to people in their own homes if their own doctors wouldn’t cooperate with their wishes.

The AP has a Statement of News Values and Principles, and it takes a strong strong, ethical stance on dealing with errors:

CORRECTIONS/CORRECTIVES:

Staffers must notify supervisory editors as soon as possible of errors or potential errors, whether in their work or that of a colleague. Every effort should be made to contact the staffer and his or her supervisor before a correction is moved.

When we’re wrong, we must say so as soon as possible. When we make a correction in the current cycle, we point out the error and its fix in the editor’s note. A correction must always be labeled a correction in the editor’s note. We do not use euphemisms such as “recasts,” “fixes,” “clarifies” or “changes” when correcting a factual error.

A corrective corrects a mistake from a previous cycle. The AP asks papers or broadcasters that used the erroneous information to use the corrective, too.

For corrections on live, online stories, we overwrite the previous version. We send separate corrective stories online as warranted.

Great statement.  The trouble is, it’s only as good if the organization actually follows the stated value and doesn’t just treat it as ethical windowdressing.  The latter seems to the case at the AP.  First of all, I had to go through at least four different people before I got someone who gave me an email address for the chief of European desk at the AP.  I didn’t catch the name, but the email address was amax@ap.org.

Here is part of the email I sent to the email recipient I was given by the AP here in the US:

Dear bureau chief:

I was given this email address by someone at the international desk at the Associated Press in the United States.  I hope you are the appropriate recipient of this message.

My job entails tracking developments on euthanasia across the world and I am very familiar with the Dutch guidelines defining “eligibility.”  Your story misreports the guidelines in two different ways.

In honesty, I have already written about this problem on my blog (it’s not the first of this type with the AP).  I am including the URL and two excerpts from the blog that lays out the problems as well as document the inaccuracy of the info in the article:

After that, I included relevant sections excerpts of the blog entry, explaining that the description of “terminally ill” and “unbearable pain” were both incorrect in terms of Dutch guidelines for euthanasia.  And of course I included the links to the Dutch govt. sites that spell out the actual guidelines.

Since Friday, I have heard absolutely nothing from the Associated Press.  Nothing. That isn’t unusual or unexpected – but they might as well take their noble statement of principles down if the principles don’t really mean anything in practice.

Also on Friday, I contacted the editor of the Dutch News site.  I received a gracious email from the editor and the story was re-edited so that the description of the guidelines were accurate.  The story now includes a link to the govt. information on euthanasia guidelines as well.  Here’s the revised paragraph:

Euthanasia is legal in the Netherlands under strict conditions. For example, the patient must ‘suffering unbearably’ and the doctor must be convinced the patient is making an informed choice. The opinion of a second doctor is also required.

For the Dutch euthanasia rules in English, click here

That was done quickly (although without acknowledging the prior error).  And they added info so readers could find more about the guidelines in Holland themselves.  I didn’t see and statement about ethics or principles on the Dutch News site, so I guess they just believe that correcting their mistakes is simply good journalistic practice.

I can only assume – contrary to the public statement on “values and principles,”  that the AP does not share the same view of correcting their mistakes.  –Stephen Drake