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

New Move to Expand Euthanasia in the Netherlands – Associated Press and DutchNews.nl Misrepresent Dutch Practice

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It’s hardly news when word comes out from the Netherlands that either the government, medical professionals or some private organization are seeking to expand the scope of the euthanasia laws.  After all, the consistent trend in the Netherlands has been to expand the practices of euthanasia and assisted suicide by expanding eligibility criteria, as we’ve written about here, here and here.

It’s also not unusual for the newswire reporters to disseminate articles on assisted suicide, euthanasia, and the Netherlands that are just factually wrong – often egregiously.  The Associated Press, in spite of having a code of journalistic ethics it claims to adhere to, is one of the most consistent offenders.  The AP, in fact, went so far as to conduct a poll on Kevorkian and assisted suicide that was factually incorrect, corrupting the validity of the poll responses.  The AP then used its own flawed poll as news that they themselves covered, acting as both newsmaker and reporter – an unacknowledged conflict of interest if ever there was one.

Well, there’s a new story out of the Netherlands and – as I said – it’s really quite unremarkable that a group is trying to expand the practice of euthanasia.  But the coverage so far actually is quite remarkable in that I haven’t read one news account that describes the so-called “strict guidelines” for euthanasia eligibility in the Netherlands accurately.  And one of those news sources is actually quite disturbing.

First here’s the intro to the news from the Associated Press, titled Dutch group proposes ‘mobile’ teams:

AMSTERDAM (AP) — The main Dutch euthanasia advocacy group says it supports creating “mobile” euthanasia teams of doctors for terminally ill patients who want to die in their own homes, rather than in a hospital.

The Netherlands legalized euthanasia in 2001 in cases where patients are suffering unbearable pain due to illness with no hope of recovery.

(The italics above were added for emphasis.)
A careful reader might notice that the two descriptions of “patients” given in the first and second sentences don’t match.  Anyone who is actually familiar with the euthanasia eligibility criteria in the Netherlands will know that neither description is correct.  Some of the media sites this appeared on included the Washington Post, Huffington Post, and cbsnews.com.

Did no one notice that one sentence stated that it’s terminally ill people who can get euthanasia while the other sentence asserts that “patients who are suffering unbearable pain due to illness with no hope of recovery” qualify for euthanasia?

As I said, neither definition is correct – and I’ll provide that definition with an authoritative source at the end.

What really surprised me about this is that when I did my search, what I found  – for once – the AP reporter who wrote this didn’t generate the misinformation on his or her own (or lift it from previous erroneous AP articles).

This time at least some of the misinformation was generated by a Dutch news source.  News sources in the Netherlands tend to be biased – naturally – in favor of the euthanasia practices in that country, but are generally accurate when describing the “strict guidelines” and eligibility criteria.

Not this time.  Here is how eligibility is described in the DutchNews.nl article titled Voluntary euthanasia group plans to set up ‘help to die’ teams:

Euthanasia is legal in the Netherlands under strict conditions. For example, the patient must be suffering unbearable pain and the doctor must be convinced the patient is making an informed choice. The opinion of a second doctor is also required.  (Emphasis added.)

In fact, there is no requirement that a person be in actual pain to be able to be “helped” with euthanasia.  All that is required is that they have “unbearable suffering” – a broad, hard-to-define and very subjective term that has fueled the expansion of euthanasia practice in that country.

Don’t take my word for it.  You can download a pdf document from this site on the Dutch Ministry of Health, Welfare and Sport that spells out the rules. I lack the ability to cut and paste content from a pdf document to this blog, but here’s a summary from a different section of the same Ministry that summarizes the guidelines:

The greatest care has been taken to regulate care for patients who are suffering unbearably with no prospect of improvement. Euthanasia may only be carried out at the explicit request of the patient. 

Neither this summary or the longer version in the pdf document linked above mention “pain” or “terminal” as necessary to “qualify” for euthanasia.

Maybe it’s simple laziness and incompetence (that explains a lot of the lousy reporting in the US) or maybe this particular Dutch news organization just figured if the AP and other news organizations insist on misrepresenting euthanasia in the Netherlands, they’d just play along for consistency’s sake.

I plan on sending a link and copy of this blog entry to both the AP and to DutchNews.nl; experience tells me that there’ll be no reply from the AP.  I wonder if DutchNews.nl will follow suit on that as well.  –Stephen Drake

Georgia Disability Activists at Supreme Court Hearing on Assisted Suicide – Press Coverage and More

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The Georgia disability rights activists that attended yesterday’s hearing on the Final Exit Network’s (FEN) challenge to that state’s assisted suicide law were included in some of the major media coverage.  First, from wbstv.com (channel 2) in Atlanta, there’s a brief interview with disability activist Elizabeth Hune, alongside fellow activists Zan Thornton and Rebecca Ramage-Tuttle.  Here’s the link for the segment titled “Supreme Court takes up assisted suicide law.” Hune’s remarks are at the end of the 2 minute news segment.

The Atlanta Journal-Constitution also published a story that included statements from Georgia disability activists, in an article titled “Final Exit Network faces state’s highest court.”  The remarks from Zan Thornton and Rebecca Ramage-Tuttle are at the end of the article:

Outside the federal courthouse, a small cadre of disability rights activists voiced concerns about the Final Exit Network and legalized assisted suicide.

Becky Ramage Tuttle, who suffers from spina bifida, said some people are too willing to help disabled people end their lives, because they are often viewed as less valuable to society.

Disability rights activist Zan Thornton noted that people sometimes say they’d rather be dead than disabled. She asked rhetorically, “How can they get help with suicide, but not for depression or pain relief?” She said she believes many people who contemplate suicide are suffering from inadequate medical care.

Finally, on Monday morning the Statewide Independent Living Council of Georgia posted the text of an op-ed written by disability rights activist Eleanor Smith:

Disability rights activists from Not Dead Yet of Georgia, Georgia ADAPT and Disabled Queers in Action are urging the state Supreme Court to uphold the prosecution of members of the Final Exit Network. Below is an op-ed submitted to the AJC by activist, Eleanor Smith – member of Not Dead Yet of Georgia. Since its submission, other advocates and disability organizations have signed on to the letter.

Equal Rights Includes Equal Suicide Prevention

As a disability rights activist, I see many people struggle every day to obtain the basic essentials to live and participate in the community. Because of many economic and attitudinal barriers thrown in people’s way, it’s not unusual for members of our community to experience at least brief periods of despair over what can seem like a never ending struggle.

I am very concerned over the “assistance” that members of the Final Exit Network (FEN) are eager to give to old, ill or disabled people who want to commit suicide. Young, healthy people sometimes feel suicidal, and in those cases law– and society as a whole –rightly step in strongly for prevention. But FEN singles out disabled people as candidates for active help to kill themselves.

One of the charges against FEN involves tampering with the scene of a suicide to pass it off as a natural death.

Also to consider is the troublesome report by an undercover GBI agent. The agent stated that one of the defendants, who had posed as a prospective FEN client, informed him that part of the “help” offered would involve holding his hands down to make sure he didn’t “inadvertently” rip the helium-filled bag off. It’s hard to believe that none of the roughly 200 FEN claims to have helped commit suicide didn’t change their mind at the last minute. The histories of at least two of the members of the FEN Advisory Board raise alarms. Faye Girsh and Ruth von Fuchs both have publicly advocated removing or lessening the legal consequences for family members who kill a disabled child or a cognitively disabled adult such as a person with dementia– provided that the killer claimed to have acted out of compassion.

What guarantees do any of us have that FEN members haven’t aided and abetted outright murders? The helium apparatus could easily be used to kill an elderly relative or child with cognitive disabilities, with no sign of struggle.

We ask the Georgia Supreme Court: Please proceed with prosecution for tampering with the scene of death. And please uphold Georgia’s ban on assisted suicide so that predators have some checks on their behavior.

Eleanor Smith – Not Dead Yet of Georgia
Patricia Puckett – Not Dead Yet of Georgia
Rebecca Ramage-Tuttle – Not Dead Yet of Georgia
Linda Pogue – Georgia ADAPT
Ryan Mercer
Vivian Teel – ADAPT
Georgia Advocacy Office
Harriet Harris – Circle of Support, Inc.
The Arc of Georgia
Greg Harry
Georgia ADAPT
Not Dead Yet of Georgia

National NDY is very grateful to all of the activists who mobilized quickly on only a few days notice – Rebecca Ramage-Tuttle, Pat Puckett, Eleanor Smith, Zan Thornton, Linda Pogue, Elizabeth Hune – and any others whose names I might have accidentally left off.  (If I did – drop me a note at my email address – sndrake at aol.com – and I will rectify the error ASAP.)

Georgia Disability Activists to Attend Arguments at GA Supreme Court Hearing on Final Exit Network

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Today, Nov. 7, 2011, the Georgia Supreme Court will hear arguments on the challenge to Georgia’s assisted suicide law filed by members of the Final Exit Network.  The group claims that the law does not actually prohibit assisted suicide but does violate the First Amendment right to free speech.

Three disability rights groups from Georgia will be attending the hearing today, and handing out informational flyers on the activities of the Final Exit Network and why the group needs to be stopped.

The double-sided one page flyer is reproduced below.  NDY’s press release announcing the presence of disability rights activists at the court today can be found at:


The informational flyer is below:
DISABILITY RIGHTS GROUPS URGE
GEORGIA SUPREME COURT TO
UPHOLD PROSECUTION OF FINAL EXIT NETWORK
EQUAL RIGHTS INCLUDES
EQUAL SUICIDE PREVENTION
Disability rights activists from:
Not Dead Yet of Georgia
Georgia ADAPT and
Disabled Queers in Action
are attending oral argument in the Georgia Supreme Court
on Monday, November 7 at 10:00 a.m.
  • Disability activists are urging the state Supreme Court to uphold the prosecution of members of Final Exit Network.
  • Many people struggle every day to get the basic essentials to live and participate in the community. Attitudes based on prejudice are thrown in people’s way, so people sometimes feel despair over the never ending struggle for access and acceptance.
  • When young, healthy, nondisabled people say they want to commit suicide, society says their suicide would be a tragedy and tries to prevent it.
  • But Final Exit Network (FEN) members respond to old, ill and disabled people who want to commit suicide by agreeing and assisting them to do it.
  • That’s discrimination against people who are old, ill or disabled.
  • An undercover GBI agent, who posed as an FEN client wanting to commit suicide, said he was informed by one of the defendants that part of their “help” would involve holding his hands down to make sure he didn’t “inadvertently” rip off the helium-filled bag that would cause his death. There would be no chance to change his mind at the last minute.
Equal rights includes equal suicide prevention!
PAGE 2
Final Exit Network:
Myths vs. Realities
MYTH:The Final Exit Network (FEN) only “assists” the suicides of people who are terminally ill. 
REALITY:John Celmer, whose suspicious death sparked an investigation into FEN, was reported to be cancer-free in the coroner’s report. Under the “Who we serve” section of its website, FEN states that it will serve persons “who are suffering from intolerable medical circumstances and want to end their lives. Those conditions include Cancer, ALS (Lou Gehrig’s Disease), Alzheimer’s, Huntington’s, Multiple Sclerosis, Muscular Dystrophy, Emphysema, Congestive Heart Failure, Stroke, AIDS, and many other lesser-known but serious ailments.” (From FEN  website)

MYTH:FEN “Exit Guides” only provide “counseling,” not “assistance.” 
REALITY:Legal authorities charge that part of the group’s assistance entails cleaning up the site of an allege suicide to make it look like a natural death. Moreover, the Georgia Bureau of Investigation (GBI) claims that, during the sting operation it used with FEN, the agent posing as a cancer victim was told that the “exit guide” would hold his hands down after the helium-filled bag went over his head. FEN claims that this is to prevent flailing movements from accidentally dislodging the bag, but it would also prevent the removal of the bag by a person who had changed his or her mind.

 MYTH:Those that FEN “helps” are carefully screened. 
REALITY:The GBI agent in the sting operation that sparked the multi-state investigation posed as a cancer patient. He says that FEN never asked for his medical records. John Celmer, of Georgia, was cancer-free at death.

For more information contact: