Press Statement: Disability Rights Groups Not Dead Yet and Second Thoughts Issue Statement Defending Dr. Ira Byock in Assisted Suicide Debate

assisted suicide, barbara coombs lee, Compassion & Choices, diane coleman, ira byock, john kelly, Our News & Commentary Blog, Second Thoughts, VSED, , ,

[Editor’s Note: The PRWeb version of this Press Statement is available online in pdf format here.]

Not Dead Yet and Second Thoughts, disability rights groups that oppose legalization of assisted suicide, issue the following Statement in support of Dr. Ira Byock’s role in the public policy debate spurred by the Brittany Maynard case:

“Dr. Ira Byock, one of the nation’s leading palliative care physicians and author of ‘The Best Care Possible’, has come under intense criticism lately for his opposition to legalizing assisted suicide.  During the last two weeks, Dr. Byock appeared on PBS Newshour, 60 Minutes and the Diane Rehm Show to debate Barbara Coombs Lee, president of the assisted suicide advocacy group, Compassion and Choices (formerly the Hemlock Society).

“Media attention to the public policy debate has increased dramatically in recent weeks, due to a Compassion and Choices video gone viral.  The video depicts the tragic illness of Brittany Maynard, who says she plans to end her life using Oregon’s assisted suicide law and to use her case to urge passage of similar laws nationwide.

“Dr. Byock is right to decry our health care system for its scandalous deficiencies in meeting the needs of seriously ill and dying people.  He’s also right to warn against bringing the physicians we all depend on into the role of prescribing suicide as a new kind of ‘treatment.’  And he’s right to be concerned about legalizing the cheap ‘treatment’ of assisted suicide in our profit-driven health care system.

“‘Dr. Byock urges attention to the crying need for high quality, patient-centered care that supports the value and dignity of dying people,’ said Diane Coleman, president of Not Dead Yet.  ‘When I reach the terminal stages of my progressive neuromuscular disability, I hope that I will have a doctor like him.’

“What disabled people see is the likelihood that what is now offered to terminally ill people to prevent suffering will get extended to disabled people who may experience similar suffering. During the Diane Rehm Show, Byock raised one of the disability community’s concerns as follows: ‘And I actually would love to hear from Barbara what you say to somebody like Brittany who simply is suffering at that level but isn’t terminally ill? Do you say to them, we can’t help you because you don’t — you fall outside of the laws and the regulations of Oregon?’

“Coombs Lee usually says that her organization’s goal is Oregon-style laws for people with a terminal diagnosis, but at a recent Connecticut forum, she affirmed a broader agenda as reported in CT News Junkie:  Coombs Lee also said the legislation would exclude people with dementia and cognitive declines, since they could not make the choice for themselves. ‘It is an issue for another day but is no less compelling,’ she said.

“In addition, Coombs Lee’s organization promotes VSED (voluntarily stopping eating and drinking) as a peaceful way to die that is legal in all states, whether or not the person is terminally ill.  ‘Their articles and materials urge doctors and families to cooperate with VSED,’ said Coleman, ‘which demonstrates a broader policy agenda than the current media focus.’

“However, disability concerns go beyond the strictly medical issues that affect old, ill and disabled people.  ‘Most people don’t realize that people with disabilities are two to four times more likely to be abused than our nondisabled peers,’ said John Kelly, director of Second Thoughts.  ‘And not enough people have heard about the rising rates of elder abuse, or know that the primary perpetrators are family and caregivers.  That’s the real world context for these ill-conceived laws.’

“Assisted suicide laws may appear to offer patient rights, but their actual provisions grant blanket legal immunity to physicians and other involved participants. Even when the law’s criteria are not met, a simple claim of ‘good faith’ by the doctor or family member confers legal immunity.  Once the drugs are obtained by the patient or family, the Oregon law takes no further interest. There is no requirement that an independent witness observe the death to ensure that the lethal dose is actually self-administered, or even that there is consent.  Barbara Coombs Lee’s claim of ‘transparency’ is completely false.

“Legalization of assisted suicide often looks acceptable when the focus is solely on an individual.  However, not every terminal prognosis is correct, not everyone’s doctors know how to deliver expert palliative care, and not everyone has a loving husband and family.  A closer examination of the issue reveals the immense harm legalization poses to vulnerable people as well as society as a whole.

“Assisted suicide legislation was rejected this year in Massachusetts, New Hampshire, Connecticut and New Jersey due to bipartisan opposition from a broad coalition of disability rights organizations, medical professionals and associations, palliative care specialists, hospice workers and faith-based organizations.”

 

In the news: Canada SC Case

assisted suicide, blog recommendations, Canada, court cases, courts, media coverage, Our News & Commentary Blog, , , ,

In Canada this week, the issues of assisted suicide and euthanasia were argued before the Supreme Court.  Here’s some of the coverage/commentary published before the date of the arguments (10/15):

Dave Hingsburger is a respected – almost revered, and for good reason – voice in the disability rights community.  He missed a presentation at a parliamentary luncheon at Ottawa to speak on assisted suicide. He took his notes and took to his blog – Rolling Around In My Head – to give us “Bias, Bigotry and My Life“:

Two days after becoming a wheelchair user, someone said to me, “I don’t know how you do it, I’d rather be dead than in a wheelchair.” That was the first time that this was said to me. It was not the last. This attitude is increasingly present in our society, movies love plots where newly disabled people beg for death and are subsequently relieved of the burden of life. This attitude, the one that death is preferable to life in a wheelchair – who guarantees that my doctor, my surgeon, my specialist does not have this prejudice? Who assures that prejudice against the poor doesn’t lead to worse health care – oh, right, NOBODY. “I’d rather be dead than in a wheelchair,” if you’ve said it, if you believe it, I don’t want you to be my doctor, I don’t want  you having anything to do with decisions about my life. — Read the rest, from the beginning, here.

Catherine Frazee is a disability rights activist, disability studies scholar and writer – to name but a few things people might want to know about her. Earlier this week, she wrote about what’s at stake for her and other disabled Canadians in “Assisted suicide debate masks disability prejudice.”:

But when I tune in today to watch the webcast of the case, I shall be standing not with Dying with Dignity, but with millions of Canadians with disabilities and their families — ordinary Canadians who have laboured for decades to secure a vision of equality, dignity and liberty that includes us all.

It’s that history that won the day in Canada’s internationally regarded Charter of Rights and Freedoms in 1982. It’s that history that is at stake in this debate. — Read the rest – from the beginning – here.

Tom Koch is an author, lecturer and researcher – and a friend and ally of NDY and other opponents to assisted suicide/euthanasia. The CMAJ blog published an analysis Koch wrote of central issues in the Supreme Court debate over assisted suicide. Here’s an excerpt from “The Law and physician assisted dying: who owes what, to whom?”:

For most Canadians, the October 14 arguments at the Supreme Court in Ottawa will be about medical “aid in dying,” what the Dutch bluntly but accurately call physician assisted or directed termination. But what is really at stake in Carter et al. versus Attorney General et al is Canadian law itself, the meaning of its guarantees, promises, and injunctions. In effect, lawyers for and against “aid in dying” are asking the Supreme Court’s justices to interpret two sections of the Canadian Charter of Rights and Freedoms. –Read the rest of this excellent analysis here.

This is not a comprehensive list – over the next day or two, we’ll share other important coverage and writings from our community and its allies.

Media Advisory: Disability Groups Respond to Compassion and Choices’ Advocacy for Assisted Suicide Legislation in Connection With Brittany Maynard’s Tragic Illness

Our News & Commentary Blog

[Editor’s Note: A PDF formatted version of this Media Advisory is available on PRWeb here, along with an attached flyer developed by a coalition of groups that oppose legalization of assisted suicide.]

Response from Disability Rights Education & Defense Fund, Not Dead Yet and Second Thoughts:

“Once again, Compassion & Choices, formerly the Hemlock Society, is pushing legalization of assisted suicide by exploiting an individual terminal prognosis. Disability advocates are deeply sympathetic to Brittany Maynard, and all people suffering a terminal, serious or chronic illness. Legalization of assisted suicide often looks acceptable when the focus is solely on an individual.

“However, not every terminal prognosis is correct, not everyone’s doctors know how to deliver expert palliative care, and not everyone has a loving husband and family. A closer examination of the issue reveals the immense harm legalization of assisted suicide poses to vulnerable people as well as society as a whole.

“Assisted suicide legislation was rejected this year in Massachusetts, New Hampshire and Connecticut due to bipartisan opposition from a broad coalition of disability rights organizations, medical professionals and associations, palliative care specialists, hospice workers and faith-based organizations. Assisted suicide has only been passed by voters in Oregon and Washington, and by the Vermont legislature.”

The following experts on the issue of assisted suicide, as well as health care and disability rights policy in general, are available for press communications.

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

Diane Coleman
President/CEO
Not Dead Yet
Rochester, NY
(708) 420-0539
dcoleman@notdeadyet.org

John Kelly
Director
Second Thoughts
Boston, MA
(617) 536-5140
john.b.kelly@verizon.net

 

Autistic Self-Advocacy Network (ASAN), Disability Community Statement on Sentencing of Kelli Stapleton

abuse, ASAN, autism, Autistic Self-Advocacy Network, court cases, crime and punishment, media issues, Our News & Commentary Blog, , , , ,

On October 7th, Kelli Stapleton will be sentenced for First Degree Child Abuse in a Michigan courtroom.  The following is a summary of the facts written by attorney Samantha Crane regarding Kelli Stapleton’s attempt to kill her autistic daughter and the aftermath in the media and public discourse.  It provides the background and context for the Statement of Sentencing that follows.

Last month , Kelli Stapleton pled guilty to aggravated child abuse charges arising from her attempt to kill her autistic daughter, Issy. ASAN plans to submit the attached sentencing statement denouncing the defense’s attempt to portray Kelli Stapleton’s actions as somehow understandable in light of Issy’s disability, and encouraging the court to give Kelli the same sentence that it would normally give for a similar crime committed against a child without a disability.
In her plea, Kelli admitted to luring Issy into a car while she burned a charcoal grill inside the car, during an attempted murder-suicide. Issy suffered acute carbon monoxide poisoning and fell into a coma, but has thankfully survived and regained consciousness.
Since her attempted murder of Issy, Kelli Stapleton has repeatedly made public statements – including during an interview on Dr. Phil – that she “snapped” as a result of the stress of caring for a disabled child, and that she is the true “victim.” To the contrary, Kelli had many services available (Issy had just returned from a several-month residential placement). Her ex-husband has spoken out and explained that Kelli had been abusive and had previously remarked that autistic children should be killed.

Statement by the Autistic Self Advocacy Network, American Association of People with Disabilities, Arc of Michigan, Autism Women’s Network, National Council on Independent Living, Not Dead Yet, and TASH on the Sentencing of Kelli Stapleton

The Autistic Self Advocacy Network (ASAN), the nation’s leading advocacy organization run by and for autistic individuals, and the undersigned organizations dedicated to promoting the rights of individuals with disabilities, submit this statement in support of the prosecution’s sentencing recommendations. We urge the court to reject the defendant’s invitation to impose a lenient sentence on the basis of Issy Stapleton’s disability.

Violence against children and adults with disabilities is all too common. In 2012, child services agencies in 41 states substantiated over 67,000 cases of abuse or neglect – including abuse that led to death – of children with disabilities.[1] Of those reported cases, over 50,000 – or seventy-five percent – had an intellectual disability, behavioral problem, and/or emotional disturbance. These numbers may be artificially low; when surveyed, over 33% of people who reported abuse of a person with disability reported that there was no investigation.[2]

ASAN keeps a running list of people with disabilities killed by their caregivers and holds yearly vigils to commemorate their lives. In the past 12 months alone, we have added an additional 30 homicides to our list. These homicides only include those of which we became aware through news coverage, and do not include attempted homicide or other severe, life-threatening violence such as what Issy Stapleton suffered.

Although many families lack adequate services to help support their children with disabilities, absence of services is neither a cause nor an excuse for violence. Thousands of families every year struggle to support children with disabilities. Yet the vast majority of these families would never consider harming their own children.

Indeed, many of the prominently reported cases of violence against children with disabilities – including this one – were by individuals who had access to a rich array of services. Issy Stapleton had just returned from an intensive 6-month residential placement less than 72 hours before Kelli Stapleton poisoned her with carbon monoxide gas.

Nevertheless, media sources and defense attorneys have continued to portray acts of violence against people with disabilities as the natural result of the “burden” of living with a person with a disability. Rather than rallying with sympathy and support for the child victim of attempted filicide, media coverage has consistently attempted to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim.

This narrative is not only untrue, but also can promote future violence against people with disabilities. Evidence presented at the sentencing hearing has shown that the defendant’s crime was not a temporary lapse in judgment but rather the culmination of years of resentment toward her child. Over the course of years, she repeatedly made public and private statements demeaning and vilifying her child on the basis of her disability, including statements that autistic children should be killed. These statements should be recognized as an attempt to exonerate herself and blame her child for the pattern of mistreatment that culminated in the abuse for which she has now pled guilty.

It is essential that the court avoid reinforcing this harmful narrative by treating the defendant’s poisoning of her daughter as somehow more understandable or less worthy of punishment than similar conduct toward any other child. We do not excuse the intentional poisoning of nondisabled children as the result of the stress of parenting; disabled children deserve this same basic social protection. When someone abuses a child with a disability, the crime is not that she had the audacity to be disabled–it is that she was abused by the people she trusted and relied on most.

Above all, the court should consider Issy’s own well-being. Issy has already had to cope with betrayal and abuse by her own parent. She should not have to endure the additional burden of being told that this abuse was caused by the fact that she was difficult and burdensome, and that it is somehow reasonable and understandable for people – even the people she has the most reason to trust – to commit atrocious abuse against her. As we have seen through the experiences of our constituents, autistic people with limited expressive language abilities often have the ability to understand what other say about them, even if they are presumed not to. Every child should feel that they deserve to grow up free from violence and abuse. Without such reassurance, children who have already suffered abuse are at especially high risk of re-victimization.

As a final matter, we note that the defendant has continued to seek public platforms – including an interview with “Doctor Phil” McGraw and a possible book deal – from which to promote the self-justifying that violence against children with disabilities is a natural consequence of the stress of raising them. This behavior not only indicates a lack of remorse, but also an attempt to capitalize on the publicity associated with her crime. It is crucial that the defendant not be allowed to profit financially from her abuse of Issy, including through a book deal or payments for public appearances. We ask that the Court award Issy treble restitution, to be placed in a special needs trust, for the physical and psychological injuries—including brain damage—she has suffered. Mich. Comp. Laws § 780.766(5)(g). This will ensure that – at the very least – any proceeds from defendant’s public appearances can be diverted toward ensuring that Issy has adequate access to medical treatment, rehabilitation services, and a high standard of living for the remainder of her life. Mich. Comp. Laws § 780.768.

Respectfully submitted this 6th day of October, 2014:

Samantha Crane, Director of Public Policy

Autistic Self Advocacy Network
Co-Signatories:

American Association of People with Disabilities

Arc of Michigan

Autism Women’s Network

National Council on Independent Living

Not Dead Yet

TASH

[1] U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Children, Youth, and Families, & Children’s Bureau, Child maltreatment 2012 at 41 (2013), available athttp://www.acf.hhs.gov/sites/default/files/cb/cm2012.pdf#page=56. Michigan was not one of the states that provided data.

[2] Nora Balderian, Thomas Coleman, & Jim Stream, Spectrum Institute, Abuse of People with Disabilities: Victims and Their Families Speak Out at 8 (2013), available athttp://www.disabilityandabuse.org/survey/survey-report.pdf.

Bioethicist Art Caplan Posts Sloppy, Confused and Inaccurate Mess About Assisted Suicide on Medscape

Art Caplan, assisted suicide, bioethics, media coverage, Our News & Commentary Blog, , ,

Art Caplan can be frustrating.  He’s been everywhere in the media as the number 1 face and voice of bioethics here in the USA. He’s frustrating because his comments and analyses regarding bioethical issues vary in their quality and even accuracy.  I think that part of that is due to the fact that part of his job at the University of Pennsylvania – and now at NYU – is to get himself out in the media and professional journals as often as possible, helping to increase the visibility and enhance the status of the institutions he works for.  In short, he gets overextended, and sometimes he fails to give the time, research and care to a subject that deserves plenty of all three.

Shortly after the World Federation of Right to Die Societies conference in Chicago, Caplan published a video and article on Medscape that showed no awareness of the broad agenda celebrated at that conference. This article is so bad that I could go through almost every sentence and deconstruct it.  In order to make it easier on myself and more readable for people who come to this blog, I’ll just hit some of the highlights (maybe “lowlights” would be a better word). From the article “Physician-Assisted Suicide: Only As a Last Resort“:

I favor legalization but I believe that it has to be done with careful restriction. I am not sure whether the British law is regulated or restricted enough to prevent it from being abused. Oregon, Washington, and Vermont have in place a couple of conditions that are essential to preventing abuse of patients who are terminally ill. One is that you have to be sure that the person is not depressed or psychiatrically impaired. You do not want people ending their lives when they have treatable depression. Certainly people who are terminally ill may well be depressed, but you can often help them. Once out of depression, they may not necessarily want to take their lives.

There is no attempt to “be sure” that persons who are depressed or have other psychiatric issues do not get lethal prescriptions in the USA.  For example, the Oregon statute – and both the Washington state and UK legislation are based on this statute – says this about mental health “counseling” (evaluation) referrals:

If in the opinion of the attending physician or the consulting physician a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling. No medication to end a patient’s life in a humane and dignified manner shall be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment. [1995 c.3 s.3.03; 1999 c.423 s.4]

If you read the words above carefully, you’ll notice that suspicion of depression or other problems doesn’t mandate a referral. A referral should be made only if the non-psychologically trained physician believes the that the depression, etc. is bad enough that the individual has impaired judgment.  Unsurprisngly, extremely few referrals are made in Oregon. Only two patients out of 71 patients who used their lethal prescriptions in 2013 had been referred for psychiatric evaluations.  This is consistent with other years. In fact, Oregon researcher Linda Ganzini and colleagues published a study in 2008 that found a significant percentage of people dying by assisted suicide in Oregon met the criteria for clinical depression and anxiety:

Among patients who requested a physician’s aid in dying, one in four had clinical depression. However, more than three quarters of people who actually received prescriptions for lethal drugs did not have a depressive disorder. Our findings also indicate that the current practice of legalised aid in dying may allow some potentially ineligible patients to receive a prescription for a lethal drug; two of those who ultimately died by lethal ingestion had depression at the time they received a prescription for a lethal drug and died by ingesting the drug. A third patient was depressed at the time that she requested a physician’s aid in dying and probably received her prescription; she was successfully treated for her depression before she died by lethal ingestion.

Caplan finishes up with this:

Assisted suicide may work but only with adequate protections, adequate controls, adequate oversight, and adequate regulation to make sure that people do not think, “I better do this because I am a burden to others” or “I am going to do this because nothing else out there can help me with my pain, suffering, or depression.” Those are not adequate ethical circumstances to support someone ending his or her own life.

In the latest Oregon report, the following percentages for the top “end of life” concerns were given by the 71 people who died by using their lethal prescriptions, according to the prescribing doctors:

  • Losing autonomy – 93%
  • Less able to engage in activities making life enjoyable – 88.7%
  • Loss of dignity – 73.2%

Significantly, over 49% of the patients reported “burden on family, friends/caregivers” as a concern.

Once you actually dig out this and other factual information, it’s clear that the states that have legalized assisted suicide don’t meet Caplan’s criteria for being acceptable, even though he implies that they do.  And “right to die” societies don’t want to stop there.  Final Exit Network, the organization that hosted the recent World Federation of Right to Die Societies conference, is a group that advises and facilitates suicides.  The description of who is eligible for “help” from Final Exit Network is as follows:

We hold that mentally competent adults who suffer from a fatal or irreversible physical illness, from intractable physical pain, or from a constellation of chronic, progressive physical disabilities have a basic human right to choose to end their lives when they judge the quality of their life to be unacceptable.

“Terminal” not required with that organization.

What about other countries?  Topics at the conference included “Old Age Rational Suicide,” “Dementia,” “Helping Children Die,” “Couples Who Want to Die Together” and “Help for the Mentally Ill.”

Let’s sum up – the broader group of organizations promoting assisted suicide want eligility requirements that are much broader; European countries have already gone much farther with eligibility.

American laws don’t require assisted suicide be a “last resort,” have no meaningful safeguards against people with depression getting medication, and concerns like “being a burden” are regarded as acceptable reasons to commit suicide. Caplan missed that, didn’t know or just plain misrepresented the reality.

As I said at the top (more or less), this is a piece of crap as an article meant to inform medical professionals about assisted suicide.  Sadly, an ignorant reader will end up more ignorant about the topic after reading this. That’s not an easy thing to accomplish.

This is a serious debate and deserves real research and analysis – not to mention accuracy.  Caplan should – and can – do better.  Hopefully, he can manage something better next time. If he produces another piece of drek like this, we’ll treat it with all the respect the article deserves – as I did with this one.

Addendum – for another take-down of this mess, check out Wesley Smith’s ‘Assisted Suicide as a “Last Resort” Fantasy.’