Canadian Association for Community Living: Press Release on Kaylee Wallace

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Today, the Canadian Association for Community Living (CACL) issued a press release regarding Kaylee Wallace and the issues that have come to light in the past couple of days – issues that impact countless other Canadians with disabilities and their families.

FOR IMMEDIATE RELEASE

April 9, 2009

Family’s Heartbreaking Plight Sheds Light on Deeper Issues

From Day One it’s been all about what Kaylee Wallace won’t do. She won’t go to school, she won’t walk, she won’t live a typical life. One of the first suggestions was not to feed her. It seems there has been very little about what she might do, what she could become and that her life, while following a different path, could be just as fulfilling, just as wonderful and just as valued as any other. The take away message has been that a life with a disability is a fate worse than death.

The Wallace family, and many that have come before them, have found themselves in a heartbreaking predicament. They are told by medical professionals and experts that their daughter’s life is in immediate peril. That efforts to support her are futile, that the family should leave her be and let her die with dignity. Families, under pressure, often sleep-deprived and in the throes of emotional trauma rely on their trusted doctors to provide them with unbiased information. They rely on their doctors to treat their children, not just with dignity and respect, but to treat their medical conditions. Life-and-death medical decisions are being made on a particular perspective of quality of life. If your child is not expected to follow a particular path perceived by others as typical development then the quality of their life is brought into question.

As a family-based, national association which advocates for people with intellectual disabilities and their families, the Canadian Association for Community Living is concerned that this tragic situation is another example of a child’s treatment being defined and determined by disability. Joubert Syndrome is not described as a terminal illness. The breathing difficulties often associated with the Syndrome are more commonly known as apnea which is a highly manageable condition – one that most people with Joubert Syndrome outgrow. It is hard to get an accurate account of the specifics with Baby Kaylee. Joubert Syndrome, as with many disabilities, doesn’t not have one predictable outcome. Yet, the focus of Baby Kaylee’s short life has been that imminent death was the only outcome.

The active devaluation of the lives of persons with disabilities is a disturbing trend. Misinformation about disability is a real concern for individuals and families who live with disability. The lack of public discussion about the impact of devaluation makes people with disabilities and their families extremely vulnerable. The perception that a life with a disability is not worth living is perpetuated in the media interest surrounding the Wallace family and other similar stories. The increased demand for prenatal testing and the pressure prospective parents experience to terminate when an “anomaly” is detected risks leading us down a dangerous road reminiscent of our eugenic past.

Baby Kaylee may not survive. If that heartbreaking outcome is to be her reality it should not be because she hasn’t received all of the treatments and health supports she deserves.

– 30 –

For more information contact Anna MacQuarrie 416-602-3015

The Canadian Association for Community Living is a national association of 40,000 members, 400 local and thirteen provincial and territorial associations for community living, working to promote and achieve the full inclusion of people with intellectual disabilities in all aspects of community life.

Contact Information:

Canadian Association for Community Living
Kinsmen Building, York University
4700 Keele Street
Toronto, ON M3J 1P3
Tel.: 416-661-9611 ext 204
Fax: 416-661-5701
Website: www.cacl.ca

I have nothing to add to this but except thanks to the advocates at CACL. –Stephen Drake

Kaylee Wallace – Disturbing Coverage and Unasked Questions

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Once in awhile, a story hits the news that is so heartwrenching and tragic that it seems rude and cold to ask questions – let alone challenge – elements of the story. Often, this is exactly the time that hard questions should be asked.

Right now, there is a life-and-death drama playing out at the Sick Children’s Hospital in Toronto. Kaylee Wallace, who is two months old, is receiving palliative care at the facility. On Tuesday, there was an attempt to harvest her organs under the “Donation after Cardiac Death” (DCD) or “Non-Heart Beating Donation” (NHBD) protocol. In this protocol, an individual’s organs are harvested soon after the heart has stopped beating. The organ harvesting is called off if too much time elapses between removal of a ventilator and stoppage of the heart.

On Tuesday, Kaylee continued to breathe after being taken off a ventilator. The problem was that she stayed awake – since her breathing only stops when she sleeps. (If you think you know a name for that condition, read on)

The following excerpts are from the story on Kaylee Wallace in the Globe and Mail, just one of many media outlets covering this story. A brief survey I did of various articles indicates this portrayal is fairly typical of the coverage.

The enduring life of Kaylee Wallace unleashed a torrent of emotion yesterday as her father vowed to continue his fight to donate the dying two-month-old’s heart.

A transplant attempt meant to save the life of a second girl failed last night after Kaylee, who has a rare condition that causes her organs to shut down in sleep, stayed awake when taken off life support.

A little later on, we get more information:

Mr. Wallace and the baby’s mother, Crystal Vitelli, took Kaylee home two weeks ago, believing their little girl was well enough to leave hospital. Shortly afterwards, they were back. Her rare condition, Joubert syndrome, has left her unable to breathe while asleep without a machine.

“She moves, she wakes up, she opens her eyes, but when she sleeps, she essentially dies,” Mr. Wallace said. “It’s hard watching her be a vibrant baby. When she goes to sleep, the machine does the rest.”

This information is a little more accurate. In fact, when the reporter writes that Kaylee’s condition that “causes her organs to shut down in sleep, in the second sentence of the article” it is nothing except the wildest of exaggerations. But it does help to build the image of an infant that is dying.

It’s her breathing that stops. And if you think you’ve heard a word for that, you’re right. It’s called apnea – and there’s not a single quote in a single story from anyone that uses the term. Apnea is a fairly common disorder, although found mostly in adults. Literally thousands of people with apnea in the U.S. and Canada use various devices to assist their breathing when sleeping.

Here’s where I ask one of my rude questions: Is the word apnea being avoided because people don’t associate it with “dying,” but recognize the term as covering a variety of treatable conditions?

And what about Joubert syndrome? Is it described as a terminal condition?

I didn’t know, so I checked. I checked Wikipedia, the National Institute of Neurological Disorders and Stroke (NINDS), the Joubert Syndrome Foundation & Related Cerebellar Disorders and the Cleveland Clinic. None of these sources describe Joubert syndrome as “terminal.”

Here’s a brief overview from NINDS:

Joubert syndrome is a rare brain malformation characterized by the absence or underdevelopment of the cerebellar vermis – an area of the brain that controls balance and coordination. The most common features of Joubert syndrome in infants include abnormally rapid breathing (hyperpnea), decreased muscle tone (hypotonia), jerky eye movements (oculomotor apraxia), mental retardation, and the inability to coordinate voluntary muscle movements (ataxia). Physical deformities may be present, such as extra fingers and toes (polydactyly), cleft lip or palate, and tongue abnormalities. Kidney and liver abnormalities can develop, and seizures may also occur.

Prognosis:

The prognosis for infants with Joubert syndrome depends on whether or not the cerebellar vermis is partially developed or entirely absent. Some children have a mild form of the disorder, with minimal motor disability and good mental development, while others may have severe motor disability and moderate mental retardation.

So what about that apnea? There’s a National Institutes of Health (NIH) document that shares some information about that:

Although some infants have died of apnea, episodic apnea generally improves with age and may completely disappear.

From where I sit, the hospital other professionals commenting on the story have a lot of explaining to do. Here’s my starting list of questions I want answered:

  • How does this child’s disabilities differ from the majority of non-terminal children with the same condition?
  • Was the possibility of treating the apnea ever seriously considered?
  • Given the possiblity of improvement of apnea over time, why is ventilator assistance being withdrawn?
  • Is this child really “dying” or is this a “quality of life” decision? Shouldn’t we try to be clear about which type of situation we’re talking about?

Meanwhile, there is another infant in the same hospital, named Lillian, who needs a heart. There are no guarantees that she’ll be the one to get Kaylee’s, if Kaylee’s death occurs in a way that makes harvesting possible.

But it makes it all the less likely there will be any serious questions asked about the seriously flawed coverage and public discussion of the drama playing out right now. –Stephen Drake

Carol Carr, Who Killed Two Sons, Speaks Out About Assisted Suicide, Sort Of

assisted suicide, Carol Carr, crime and punishment, media coverage, Our News & Commentary Blog

For those with a comparatively long memory (long in terms of this culture, anyway), the name “Carol Carr” should ring a bell. In 2002, she shot and killed two of her adult sons as they lay in beds in a Georgia nursing home. Both had Huntington’s Chorea, a hereditary condition that results in a progressive decline in motor and cognitive ability.

Here’s the update from Newsnet14:

The Griffin woman was at the vortex of the issue in 2002 after killing her two gravely ill sons. But asked whether a law should allow assisted suicide, Carr went on a rant about nursing home profits and the inability of dying people’s families to control the end of life.

“They won’t let an animal suffer; they’re put to sleep,” Carr said Friday. “But there’s no money in keeping animals [alive]. It’s all about money. Money. Money.”

Doctors should be allowed to end the life of terminally ill people if that is their wish, she said.

A couple of comments about the blurb from Carr:

  1. I guess she didn’t get the memo about the cold reality of animal euthanasia and suffering;
  2. It’s interesting to hear Carr rant about nursing homes. Disability advocates tried to do the same thing when the murder of her sons was being covered:

After June 11, Randy and Andy were increasingly referred to as “terminally ill” rather than disabled.” This, and the lack of attention to problems with the nursing home, seemed to effectively foreclose discussion of these matters. Continuing coverage of the neglect and abuse issue would have allowed people with disabilities to ask why the Scott brother weren’t being allowed to have assistance while living at home. Calling them “terminally ill” rather than “disabled” meant that the issue was no longer pegged as one in which the disability community might legitimately have a say.

That’s what happened when Georgia activist Mark Johnson emailed reporter Jeffrey Scott. Scott replied that he was determined not to let either side in the “mercy killing debate” “hitch a ride” on the story. Johnson, though, continued to press the reporter, pointing out that nursing home abuse and neglect had been important parts of the original story. Scott acknowledged the disability community’s perspective might be appropriate in future coverage of the case — but there were no promises.

Neither the disability community’s perspective nor the history of nursing home abuse and neglect got much air time at all in the stories – right through Carol Carr’s guilty plea to “assisting” the “suicides” of her sons. –Stephen Drake

Monday Media: Interview on “What’s Up With Bioethics”

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I didn’t get around to any blogging over the weekend. And Monday went a little out of control, so I didn’t get to announce my appearance on Mark Mostert‘s webcast of “What’s Up With Bioethics?“

It turns out that may have been a good thing after all. When I announce an appearance on a live broadcast, only a handful of people at most are able to tune in. Luckily, the show is archived on the site and the one hour discussion is available for your listening pleasure (mp3 format).

I think the conversation is worth a listen. Mark and I come from very different perspectives on a number of things. For starters, we could probably spend a couple of hours arguing about facilitated communication, a topic about which we both have strong and directly opposed positions.

However, he and I are in strong agreement about the topics of euthanasia and assisted suicide. It seems obvious to both of us that the devaluation of people with disabilities is at the center of the rhetoric and logic used by proponents of “death with dignity.”

I think it was an interesting hour. The first 15 minutes was a little rambling on my part. I get that way when I am asked to talk about myself in an open-ended fashion.

The rest of the show covered topics such as the history of the euthanasia movement, significant players in the movement, it’s possible future, and how the latest fallout from criminal investigations of the Final Exit Network might affect the debate in the days, weeks and months to come. –Stephen Drake

Final Exit Network Members Passing Off “Boilerplate” Op-eds As Original Work?

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The possibility that members of the Final Exit Network are passing off boilerplate op-eds as original work may seem trivial. After all, this is a group of people whose “hobby” – like bridge (see below for an explanation) – is to plan and preside over the deaths of multiple strangers. In spite of this (to put it mildly) creepy pastime, the FEN members are aggressively claiming the moral high ground.

So, in terms of the ethical standards of FEN members, it was an eye-opener last week when I read a column by FEN member John Fanning in the Summit Daily News, published on March 25th.

The reason it was an eye-opener is that I had already read parts of Fanning’s column – word for word – in a March 19th op-ed by former FEN president Earl Wettstein, published in the Arizona Daily Star.

These op-eds or columns run between 500-600 words, so the following passages (and these are just the best examples) represent a significant portion of these “original” works:

The media is calling the four people involved a “ring,” an obviously pejorative word. They are no more a ring than your bridge group. Please call Final Exit a volunteer group of Death with Dignity advocates, but not a ring. — Earl Wettstein

The four people arrested were members of the Final Exit Network. The media refers to the four people arrested as part of a “ring” — an obviously pejorative word. They are no more a ring than your hiking or bridge group. They are a group of volunteers who are death with dignity advocates. — John Fanning

The network is an all-volunteer organization with 3,000 members across the nation who pay $50 a year to belong. What they are buying with this annual fee is a form of insurance — that if they become terminally ill from an incurable disease that they can no longer bear, they can request the services of a compassionate, caring exit guide who will counsel them, who will be with them, who will hold their hands when they end their own lives. But who will not physically turn the valve. — Earl Wettstein

The network is an all-volunteer organization across the nation with members who pay $50 a year to belong. The annual fee buys the assurance of an alternative if they become terminally ill from an incurable disease they can no longer bear. If they choose, they can request the services of a compassionate, caring exit guide who will counsel them, who will be with them, who will hold their hands and comfort them when they choose to end their own lives — but will never physically assist in any part of the process. — John Fanning

Isn’t it strange that physician-assisted suicide is legal in Oregon, Washington and Montana, but other states still punish it as a felony or misdemeanor? Bills that would legalize the practice are currently before the legislatures of New Hampshire, Hawaii and New Mexico.
Had the man in Georgia lived in Oregon, for example, he could have received voter-approved, legal assisted dying in the form of a life-ending prescription from his doctor. — Earl Wettstein

Isn’t it strange that physician-assisted suicide is legal in Oregon, Washington, and Montana, but other states still punish it as a misdemeanor or even a felony? Had the man in Georgia lived in Oregon, he could have received voter-approved, legal assisted dying in the form of a life ending prescription from his doctor. — John Fanning

Aside from the striking textual similarities, the pieces exhibit the same patterns of omissions and at least one outright lie. In both op-eds, no mention is made that John Celmer’s autopsy report indicates he was cancer-free at the time of death. Without that information – and with Wettstein’s outrageous assertion that FEN clients are “terminally ill,” – the lie at the end of both essays can go unchallenged. (Fanning avoids using the term “terminally ill,” but still makes the identical closing claim that Wettstein does)

What explanation can there be for the fact that both essays contain the identical factual lie? How could both men come to claim that Celmer – a non-terminally ill man – could legally get help to commit suicide in Oregon? By law and in theory, that would not be possible in Oregon – and both men know it. As mentioned previously here, FEN issued a press release last year announcing it would “help” people who fell outside of the eligibility standards in Oregon and Washington state.

Two explanations come to mind. The first is that Fanning, who published the more recent piece, “borrowed” heavily from Wettstein. The second possibility is that both men worked from a single “boilerplate” set of talking points that made the mistake of going beyond “points” and providing wording – so that sloppy members would take the material word for word instead of rewriting the points into their own style of prose.

We could see more of these. I learned a lesson these past few days about how little one newspaper – the Summit Daily News – seems to care if columns aren’t exactly “original work.” I called the managing editor at the paper and left voice mail asking if they had a policy in regard to columns and op-eds being original work. I sent email to the same editor asking the same question and gave a link to the Wettstein op-ed in the Arizona Daily Star.

To date, there has been no reply via email or phone from the newspaper. Fanning’s column remains on the newspaper site, proudly unchanged – along with my submitted comments questioning its originality – in the “comments” section.

I’m not surprised by the shortcuts apparently taken by Fanning in getting the word out. But I am surprised – and saddened – by the apparent lack of concern over the matter from the Summit Daily News. –Stephen Drake