National Disability Rights Group: Study Finds Medical System Violates Civil Rights of Disabled People

"end of life", Ashley X, Back Door Euthanasia, bigotry, bioethics, civil rights, Curt Decker, national disability rights network, NDRN, Our News & Commentary Blog, passive euthanasia, sterilization
I apologize for being a little late getting this news out from the National Disability Rights Network (NDRN).  There are two important issues affecting people with disabilities.  One, as the headline of the press release states, is the violation of people’s basic rights by surgical and other modifications on people’s bodies without any judicial review.  Second, and not mentioned in the title, are the alarming number of cases in which disabled people have been denied even basic medical treatment and care while ill – with the intent of causing their deaths.  (look for highlighted quotes from NDRN ex. dir. Curt Decker below)  More after the end of the press release.
Study Finds Medical Procedures Violating the Civil Rights of People with Disabilities

Stunting growth, removing body parts with no judicial review

For Immediate Release           
5/22/2012                      

Contact: David Card
202.408.9514 x122
press@ndrn.org

Washington, DC – In a first of its kind study, the National Disability Rights Network (NDRN) determined that performing certain medical procedures or withholding life sustaining treatment in non-terminal situations without judicial review violates the civil rights of people with disabilities.

The initial catalyst for the report is the so-called Ashley Treatment which received worldwide attention 5 years ago.  Ashley was a six-year-old child with developmental and physical disabilities whose growth was stopped through estrogen treatments and whose uterus and breast buds were removed. The intent of this treatment was to keep her permanently small and child-like.  NDRN believes this practice is spreading worldwide.

“The thought of doctors and guardians, together, deciding to remove the body parts and stunt the growth of a child based on assumptions about their awareness and quality of life is shocking and disgusting,” said NDRN’s executive director, Curt Decker

Further investigations by the nation’s federally mandated Protection and Advocacy agencies, which NDRN represents in Washington, DC, have uncovered other cases in which medical treatment and even basic food and water are being denied to individuals with disabilities during minor illnesses with the intent of letting the illness progress until death.

“We have learned of one case in which the parents of a 13-year-old boy with a developmental disability refused to allow him access to antibiotics so that the cold he had would progress to pneumonia.  They got their wish and the boy died,” said Decker.
“Every person is born with civil and human rights and an inherent dignity,” continued Decker.  “The reality that this is happening in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse.  This report is meant to start the conversation about how society can and should make medical decisions that uphold the constitutional rights of all people with disabilities.”

The report, Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, puts individuals with disabilities at the center of discourse.  It reviews the facts of Ashley X, as a case study and presents a continuum of similar experiences and treatment of individuals with disabilities within a context of medical decision making that devalues them as people and discriminates against them based on their disability.

The report explores the conflict of interest that medical decision making may present between a parent and their child.  It describes the vital role that the legal and judicial systems have in ensuring that the civil and human rights of individuals with disabilities are protected regardless of their severity and in contrast to opinions regularly expressed in the medical and ethics community.

Finally, the report presents a series of recommendations for how the legal and medical systems at a local, state and national level, including protection and advocacy agencies, ethics committees, institutional review boards, and the courts can perform critical “watch-dog” functions to ensure that the human and civil rights of persons with disabilities are protected.
Find more information about the report and medical decision making here.
A copy of the report can be downloaded here.

# # #

The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the Network is the largest provider of legally based advocacy services to people with disabilities in the United States.

Not Dead Yet played a role in objecting to the series of rights violations to a young girl’s body that came to be known as ‘Ashley X,’ in which the ‘treatments’ radically altering the young girl’s physical body became synonymous with the girl herself.  To give full credit where it’s due, the group Feminist Response In Disability Activism (FRIDA), led the efforts to rally disability rights activists when the public discourse was being led by the parents of Ashley X, the doctors involved in the experimental and illegal surgery (they broke laws), transhumanists imitating disability-related professionals, and some of the more repugnant representatives of the larger bioethics field (Art Caplan was a notable exception among the bioethics crowd in harshly criticizing the procedures Ashley X was subjected to).

And, of course, Not Dead Yet has tracked the cases that have been made public involving the denial of life-preserving treatment to disabled people by guardians/parents and healthcare providers.  We filed an amicus brief in the Pennsylvania Supreme Court in regard to one of these cases involving denial of medical care (Parents and medical providers lost this one).

I’ll try to have more up on this in the next few days – some more about the history and the proposals contained in the report.  Suffice it to say that we’re all very grateful to NDRN for opening the door on medical practices that violate the civil rights of disabled people – and that we fear have been on the rise.  This is an essential first step in terms of putting the brakes on those trends.  –Stephen Drake

Minnesota: Final Exit Network Indictments Stir Debate – ADAPT Activist Gordie Haug Quoted!

ADAPT, assisted suicide, courts, Doreen Dunn, final exit network, Gordie Haug, indictments, Minnesota, Our News & Commentary Blog

SunThisweek has a new story about the Final Exit Network (FEN) and the suicide of Doreen Dunn by reporter Laura Adelmann.  This article focuses largely on comments and reactions from friends, neighbors and local Minnesotans.

Of most importance and interest for readers of this blog, the article also includes excellent comments from Gordie Haug, a disability rights activist and organizer with Minnesota ADAPT.

Excerpt from the article:

Gordie Haug, a representative for ADAPT Minnesota, a disability-rights organization, told Sun Thisweek he has concerns about a society that condones suicide.

He said when discussions were occurring about legalizing assisted suicide of the terminally ill, it was proclaimed a slippery slope that would lead to ending the lives of those who are not terminal, as in Dunn’s case.

“I oppose any policies and practices that threaten the lives of persons with disabilities,” Haug said, adding that he works with many disabled people suffering from depression.

Haug said there are treatments and options to ease pain and effectively treat depression, but with Medicaid cuts and tight budgets, Haug worried people may decide it is cheaper to take a life than to preserve one.

“I don’t think it’s anyone’s right to take their life,” he said.

Usually, when you get interviewed for an article like this, you’re lucky to get on single point in.  Gordie’s comments cover 3 or 4 different points.  Well done!  Wish I had a record like that.

Stay tuned, because this story and case will be around for awhile.

And deepest thanks to Gordie Haug for stepping up and providing great counters to those who support FEN and assisted suicide in general.  –Stephen Drake

The message was loud and clear: “I can help you die …”

Slideshow

“I was asked ‘if I understood the gravity of my condition.’ Yes, I said, I am well aware of the implications.”

Bill Peace’s story is told in full elsewhere, an essay about the severe wound he had in 2010 and in particular one experience he had late one night, an event that he says has “haunted him”. Here are some excerpts:

The doctor, wrote Peace, “grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.

“This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people.

“The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.

“His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics.

“If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear: I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed.

“I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.

“I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias, considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult.

“People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be.”

Continue reading Comfort Care: Killing a Bad Cripple.

RELEASE: Disability Rights Group Challenges Language for Assisted Suicide Ballot Measure as “Misleading, Inaccurate, and Euphemistic”

Our News & Commentary Blog

Disability Rights Group Challenges Language for Assisted Suicide Ballot Measure as “Misleading, Inaccurate, and Euphemistic”

John Kelly, Director of Second Thoughts, 
disability activists opposed to legalizing assisted suicide

Boston, Massachusetts (PRWEB) May 18, 2012 
On Thursday, May 17, 2012, over 60 Massachusetts voters including members of the disability rights group Second Thoughts filed a challenge before the Supreme Judicial Court (Case No. SJ 2012 0216) regarding the proposed ballot language for the measure that, if approved, would legalize assisted suicide in the state.
“The ballot language is clearly misleading,” said Second Thoughts director John Kelly of Boston. “We want the voters of Massachusetts to know exactly what they are voting on this November,” he said.
The petition asks the Supreme Judicial Court to remand the language to Massachusetts Attorney General Martha Coakley and Secretary of State William Galvin with the requirement that they amend the language for clarity and accuracy.
“The ballot language repeats the problems of the bill itself,” said Second Thoughts member Paul Spooner of Taunton. “The title is euphemistic, with the word ‘medication’ twisted beyond recognition. People will be led to believe that the measure is about palliative care, when it is about taking a lethal overdose — in other words, poison. Why not just call the act by its common and legal name, ‘physician-assisted suicide?'”
“The way ‘terminally-ill’ is used in the description is clearly misleading,” said Kelly, “people will be encouraged to assume that being ‘terminally ill’ is a biological fact, rather than a human guess.”
“People with disabilities are very familiar with so-called terminal diagnoses,” said Second Thoughts member John Norton of Florence. “Everyone knows someone who has outlived their terminal diagnosis — I was diagnosed with Lou Gehrig’s Disease as a teenager; I’m alive and well fifty years later. The ballot language misleads by implying that a ‘terminally-ill’ diagnosis actually leads to death within six months. Instead, it should say ‘diagnosed as terminal’ or something similar in terms of accuracy.”
“And what about choice,” asked Spooner. “There are no safeguards to protect patients from having the poison given to them by an heir or abusive caretaker. No witnesses are required under the law, so if someone else were to administer the drugs, who would know?”
The language submitted by the Attorney General Martha Coakley and Secretary of State is:
Title: Prescribing Medication to End Life [11-12] – Petition G
A YES VOTE would enact the proposed law allowing a physician licensed in Massachusetts to prescribe medication, at the request of a terminally-ill patient meeting certain conditions, to end that person’s life. (Massachusetts Register, page 3.)
Second Thoughts has taken a leading role in opposing the ballot measure, and has been featured in the Boston Sunday Globe Magazine, the Wall Street Journal, and on local TV and radio.
For full features of release, go to: http://www.prweb.com/releases/2012/5/prweb9517524.htm
 

Minnesota: Grand Jury Issues 17-Count Indictment Against 4 Final Exit Network Members

assisted suicide, crime and punishment, final exit network, indictments, Jerry Dincin, lawrence egbert, Minnesota, Our News & Commentary Blog, reality check

From the Baltimore Sun:

HASTINGS, Minn. — A Minnesota grand jury has indicted a national right-to-die group and several members for their actions in the 2007 suicide of a suburban Minneapolis woman, prosecutors announced Monday.

The 17-count indictment charges the medical director of Final Exit Network, Lawrence Egbert of Baltimore, and three other officials with felony counts of assisting suicide and interference with a death scene, a gross misdemeanor. It also charged the New Jersey-based group in its corporate capacity.

“This investigation and prosecution is not a politically motivated attack on the right-to-die movement,” Dakota County prosecutor James Backstrom said at a news conference. “Rather, it is an effort to bring to justice a corporation and several of its officers and volunteers who we are alleging advised, encouraged or assisted Doreen Dunn in the taking of her own life on May 30, 2007, in violation of Minnesota law.”

Here’s a breakdown of the Final Exit Network (FEN) members and their alleged roles in Doreen Dunn’s death:

The indictment names Egbert, 84; Jerry Dincin, 81, of Highland Park, Ill.; Roberta Massey, 66, of Bear, Del.; and Thomas Goodwin, 65, of Punta Gorda, Fla. Backstrom said Egbert and Dincin traveled to Minnesota to be with Dunn on the day she died, and that they likely dumped the equipment she used to kill herself in a trash bin on their way back to the airport.

The fact that Egbert was allegedly one of the ‘exit guides’ may bring some new heat and light in this (now) criminal case.  As I mentioned last week,  Larry Egbert was the subject of an extensive (if not terribly probing) interview published in the Washington Post last January.  In the interview, he shared the fact that he ‘re-used’ so-callled ‘exit bags,’ providing them to ‘clients’ so they wouldn’t have to purchase them.  He showed the reporter a large number of them stashed in a closet in his home.

It’s essential, IMO, that the prosecutor bring this up at trial.  If contrary to claims repeated even now in the current story that FEN ‘doesn’t provide’ the means to commit suicide, Egbert provided the ‘Exit Bag,’ that is actual material assistance.  Further, it could implicate Dincin, since it would be hard to hide the fact that Dunn was using a used ‘exit bag’ that Egbert brought, rather than one she purchased herself.  That would also mean that the organization has been knowingly misrepresenting itself and its practices.

Is that shocking?  Not really.  When you have a bunch of vigilantes whose primary mission is to facilitate the suicides of total strangers, there really can’t be any breach of integrity that’s really surprising.  –Stephen Drake