Chicago NDY Confronts Chicago "End of Life" Care Coalition and Barbara Coombs Lee

On Monday, April 20, the Chicago "End of Life" Care Coalition hosted an event titled "Options in 'End of Life' Care: The Legal, the Personal and the Controversial." Eyebrows - and tempers - rose in the disability community when the conference flyer came out. For the past couple of months, the biggest "end of life" story in Chicago has been the coverage of the Final Exit Network (FEN) - a bunch of "special" people who devote their spare time to hooking up with strangers and facilitating their suicides. The "special people" at FEN don't limit their "assistance" to people who are terminally ill, but are eager to "help" just about anyone with a disability or chronic condition. (Note - to be fair and accurate, I should let readers know that the Coalition doesn't put scare quotes around "end of life" in its name. That's my doing and I don't apologize for it.)

Against that backdrop, this event brings in the president of Compassion & Choices - Barbara Coombs Lee. And yet, in spite of the broad agenda that FEN represents, no one from the disability community was on the panel.

That wasn't going to go unanswered. A complaint was registered with the event organizers and swiftly dismissed by them. Having tried by polite channels, eight NDY members attended the event on Monday night. Below is an account by Larry Biondi, Advocacy Coordinator for Progress Center for Independent Living. Following his account is the text of the flyer that was passed out that night.

NDY Makes Its Points at CECC Event - By Larry Biondi

Eight members of Not Dead Yet attended “Options in End-of-Life Care: The Legal, Personal and Controversial,” an ‘end-of-life’ panel discussion at Illinois Masonic Hospital in Chicago. The members were Amber Smock, Larry Biondi, Mark Karner, Martha Cooper, Sam Knight, Rachel Siler, Dale Fox and John Barton.

The members handed out flayers to the attendees as they were registering for the event and went into the auditorium. A flyer got into the hands of the lead organizer, Julie Goldstein. From the look of her face, she wasn’t pleased at what she was reading. We all worked hard to contain our disappointment.

Barbara Coombs Lee, President of Compassion and Choices, started the panel discussion. She discussed the range of ‘End of Life’ Care Options from hospice to more controversial options such as voluntarily (or is it coercing?) stopping eating/drinking and suicide and “aid-in-dying.”

She started her discussing by talking about the “Che-che or Death” scenario where five people were shipwrecked off an island. A tribal group captured them and brought them back to land to get tortured. The first person was asked, by the Tribal member, “Do you want Che-che or death?” Not knowing what che-che meant but knowing what death was, the captured opted for the former. He was immediately rushed off to a secluded place; he was tortured, skinned alive, his organs were ripped out of his body [and he died slowly. Knowing what happened to his friend, the next guy who was up to the tribal leader also choose che-che, because he feared death. The last guy wanted death. The tribal leader was shocked. He then said, “Ok, you can have death, but first you must have che-che!”

(I wonder if she tells this story to audiences in Hawaii. I hear that Hawaiians aren’t as quick to laugh at stories with that stereotype “quaint and savage” customs in island native populations.)

Ms. Coombs Lee continued her discussion on how she’s been a nurse for 20 years. How she’s been in the ER, “Inserting tubes in every orifice imaginable.” Of course she advocated for a person’s right to get medical assistance to commit suicide, praising Oregon and Washington State for instituting state physician-assisted suicide laws. She didn’t mention disability in her presentation. No mention of how people with disabilities are seen by the medical field as costly, and therefore it’s a legitimate fear that suicide laws will be designed to kill us.

The second presenter, Joshua Hauser, is a doctor at Northwestern Hospital and Director of EPEC Project. He spoke of palliative care and how other supports, such as consoling with clergy, a team-effort support by doctors and psychological counseling can extend a terminal-ill person’s life. No mention about disability in his presentation, either!

Terry Mason, a doctor serving on the Chicago Department of Public Health, tackled the public policy implications of aid-in-dying. He was noncommittal on the issue but at the end of his discussion encouraged the crowd to garner the same passion they have about PAS to the 105 youths who have been shot and killed in Chicago so far this year. By this time, no mention about disability got really maddening!

Then came the question and answer session. The moderator read the first question on a note card submitted by the audience. Lo and behold, it was a question asked by a NDY member! “Do you think legalizing PAS will put people with disabilities in danger? Dr. Hauser said that people with disabilities shouldn’t worry, obviously unaware or not caring that activists in that movement have been facilitating the suicides of disabled people in his own city.

A highlight of the night was when fellow NDY member Amber Smock loudly interrupted Dr. Hauser answering a question. As soon as the moderator read the question, Amber shouted, “What about statistics showing people with disabilities are the most vulnerable to physician-assisted suicide? Have you done any research about that?” Dr. Hauser responded that he did’t think the disability population is in any danger of being targeted by PAS. He went on to say that doctors at the Rehabilitation Institute of Chicago know how to treat people with disabilities. He didn’t mention, of course, that Final Exit Network “guides” were offering a different kind of treatment to people with disabilities in Chicago.

Speaking of FEN, a question went to Ms. Coombs Lee about her relationship with the organization. Ms. Coombs was vague when she was asked if she supports the Final Exit Network. While she acknowledged that the network was being prosecuted in recent “assisted suicides,” she supports the person’s right to seek PAS if they are competent. Basically, she didn’t answer the question and the moderator from the Chicago End of Life Care Coalition didn’t press her for an answer.

While NDY had a presence, this panel discussion was awful from a disability-rights perspective, due to the willful avoidance of the people on the panel when it came to admitting just how much disability is central to “end of life” discussions.

Here's the flyer that was handed out to all attendees at the event:

DISABILITY RIGHTS ADVOCATES ASK
WHY TODAY’S PANEL INCLUDES
NO DISABILITY REPRESENTATION?

Well, according to board representative Julie Goldstein, the panel is to discuss “aid-in-dying” (the use of this public-relations generated term certainly tells us where Ms. Goldstein falls in terms of her attitude about assisted suicide). She acknowledges that there are concerns about “vulnerable populations” – both with and without disabilities under legalization of assisted suicide.

Barbara Coombs Lee was invited to facilitate a “nuanced” discussion, rather than a “polarized” one, according to Ms. Goldstein.

That’s an interesting claim, since it ignores the simple reality that Ms. Coombs Lee is the representative of a large political pressure group and her job is to put as pretty a face as possible on the political agenda and accomplishments of her organizations. That’s called “spin,” not “nuance.”

Obviously, her job also consists of discrediting, minimizing, and distorting any criticism of legalized assisted suicide or the movement as a whole. It is hard to see this person as anything other than “polarizing” – since it’s implicit in her job description that she be that.

If this is the beginning of a “careful dialogue,” we’d hate to see what a “careless” one looks like.

NOTHING ABOUT US WITHOUT US

Especially with the “freelance” activities of the Final Exit Network prominent in the news, disability has been thrust once again into the forefront of the debate around assisted suicide – and no amount of “spin” or “nuance” will change that reality.

BUT WHAT WOULD WE SAY
AND WHY SHOULD YOU CARE?

(begin page 2)

THE REALITIES OF ASSISTED SUICIDE

The disability experience is that people who are labeled "terminal," based on a medical prediction that they will die within six months, are — or almost inevitably will become — disabled. Furthermore, virtually all "end-of-life care" issues have been disability rights issues for decades.

In fact, although intractable pain has often been given as the primary reason for enacting assisted suicide laws, the reasons doctors actually report for issuing lethal prescriptions are the patient's "loss of autonomy" and "feelings of being a burden." These feelings arise when a person acquires physical impairments that necessitate relying on other people for help in tasks and activities formerly carried out alone.

Increasingly, the reasons doctors actually report for issuing lethal prescriptions are the patient's "loss of autonomy" (87%), “loss of dignity” (80%), and "feelings of being a burden” (36%). People with disabilities are concerned that these psycho-social factors leading to assisted suicide are being widely accepted as sufficient justification for assisted suicide, with most physicians not even asking for a psychological consultation (5% in 2004, 16% overall) or the intervention of a social worker familiar with home and community based services that might alleviate these feelings. The societal message is “so what?” or “who cares?”

FINAL EXIT NETWORK

In late February, the news broke that a multi-state investigation had resulted in the arrests of four members of the Final Exit Network. These “freelancers” and “worker bees” of the assisted suicide movement claim to have aided the suicides of some 200 individuals – many of them nonterminally ill. Two cases under investigation involve a Georgia man distressed over his appearance after successful cancer surgery; a second case involves a woman with minor physical complaints and a long history of emotional problems.

Ms. Coombs Lee has stated repeatedly that “prosecution” of these cases doesn’t accomplish anything useful. She has also said that the real “blame” for the actions of the Final Exit Network is the failure to pass laws legalizing assisted suicide in states other than Oregon or Washington state.

This is demagoguery at its worst. Last November, the Final Exit Network issued a press release announcing that neither the law in Oregon or Washington state went far enough and that they would “help” people who couldn’t get legal prescriptions in those states.

Finally, the local tie to the Final Exit Network is 26-year-old Kurt Perry. He has announced he wants the Network’s help to commit suicide. Aside from living with the nonterminal condition Charcot-Marie Tooth syndrome, Perry quit school at 16 because he couldn’t get accommodations. He has never been employed.

No doubt this panel will have suggestions for Mr. Perry. Some might have ideas for palliative care. Barbara Coombs Lee might discuss his legal options of self-starvation and dehydration.
No one will discuss the impact of being undereducated and unemployed and how it can affect Perry and others like him. As you might guess, disability advocates would have a lot to say about these issues – how exclusion and rejection are all too often experiences that come with disability. More important, disability advocates could offers suggestions and approaches to giving real support to Mr. Perry and people in similar situations – because we are already doing it with others.

Maybe that’s what Julie Goldstein meant about having a “careful” dialogue – a dialogue that carefully stays clear of some topics and keeps a sharp focus on the individual as a collection of medical symptoms.

(end of flyer)

Our heartfelt thanks and appreciation go out to Larry Biondi and the other seven activists who made sure that Chicago's "end of life" community got the message that some of us are NOT DEAD YET. --Stephen Drake

AP: Final Exit Network manual calls members "special"

Many people with disabilities have a deep-seated loathing of the word "special." It's a term of dismissal, patronization, and discrimination. And that's just a starting list. Unfortunately until "special education" and "special olympics" get called by other names, we don't have a prayer of shaking the term off for any length of time with any large group of people.

It turns out there is a group, though, that has embraced its inner specialness.

Early this morning, the Associated Press issued its newest article on the Final Exit Network. I've been waiting for this one to hit, since I've known for several weeks that it was coming. I was interviewed by Amanda Lee Myers, the reporter who wrote this story.

General comments: This is the best example of real journalism that I've seen since this story broke. Myers went to all sources on this. The Final Exit Network (FEN) members get their say. I'm in there to.

But the most powerful "voice" in the article is the FEN's own training manual. The AP obtained the a police report on the FEN that contained the contents of the training manual. It's not exactly a public relations officials idea of dream material.

The article has various titles and is in over 130 news sites, according to google. Here's the one from MSNBC, which doesn't link to the FEN site:

PHOENIX - A training manual for an assisted-suicide group tells "exit guides" that they are special people and should celebrate their role in guiding others to their deaths.

The lengthy document, referred to by police in the U.S. city of Phoenix as a training manual for the Final Exit Network, offers exit guides step-by-step instructions on how to show others how to kill themselves by breathing in helium. Guides also are told how to dispose of the equipment used in the death and position the bodies so they look like they died of natural causes.

The manual encourages the guides, telling them they are compassionately guiding suffering people to their deaths during "a special time."

Special people, special times, it's all just so... special. Wait! There's more...

"You, as the first responder, are a special person," the manual says. "You all were attracted to this program because of a compassionate interest ... Sometimes that means to 'hear' a desperation that the member does not know how to communicate and softly voice it for them."

'A sense of celebration'
The manual tells guides that if they've planned carefully, they can "anticipate this special day with a sense of peace and celebration."

Considering the text of the article, my own quotes don't stand out as extreme, for a change. They're the same kind of comments I always make, but this time they're in the context of a real news story instead of a softball treatment of FEN as some kind of "human interest" story:

Stephen Drake of the Rochester, New York-based group Not Dead Yet, which is against assisted suicide, compared Final Exit Network and the wording in its training manual to a cult and said it's hard to distinguish what the group does from murder.

"What they do is reduce ambivalence," he said. "I submit that anybody whose conditions for committing suicide is that they have to have someone around them to make sure that they don't screw it up and they're not alone is ambivalent. There are lots of people who want to commit suicide and they just do it."

Just a word about my comment. When I made my remarks about murder, it was in reaction to being told that the manual did contain instructions for holding the hands of the person down after the plastic bag over the head - I don't remember the exact wording but the idea was that it was necessary to do that so that involuntary movements didn't end up tearing the bag loose. Obviously, all it takes is one single instance of stopping an purposeful attempt to tear the bag off and "assistance" becomes murder.

They want to be "special"? Personally, I'd call it something else. But please keep them away from short yellow school buses - especially short yellow school buses carrying anyone I know and care about. --Stephen Drake

Must Read: "Schrödinger’s Cat & Donation after Cardiac Death"

I am a fan of Dick Sobsey's work and check his blog regularly for his latest news & analysis regarding the abuse of people with disabilities.

His latest blog entry, on What Sorts of People, is concerned with an examination of the logic behind the Donation after Cardiac Death (DCD) protocol. That's the same protocol, of course, that sparked the publicity in the "near-death experience" of Kaylee Wallace in Toronto earlier this month.

Below is a link and an excerpt from this excellent analysis.

How good is it? Well, my first reaction to reading it was "Damn, I wish I'd written that!"

I don't react that way often, no matter how much I like an article or essay.

Schrödinger’s Cat & Donation after Cardiac Death

April 17, 2009 — dsobsey

Quantum Ethics: Schrödinger’s Cat & Donation after Cardiac Death

Recent discussions of transplanting hearts from so-called DCD (Donation after Cardiac Death) patients into others (for example the recent Baby Kaylee saga at Toronto’s Hospital for Sick Children) raise serious questions that seem to only have explainable answers in the field of quantum physics. I don’t know if physicist Erwin Schrödinger actually had a living, breathing cat but the hypothetical cat that he proposed to illustrate a paradox back in 1935 to illustrate a paradox has certainly achieved fame.

The paradox that Schrödinger’s hypothetical cat presented was that the cat was simultaneously dead and alive. Schrödinger asked Einstein to imagine that a cat was inside a box and that we could not see or hear or otherwise sense what was happening inside the box. The cats fate is linked to some random event inside the box. Applying the rules of quantum physics the cat is both dead and alive until we can open the box and and directly determine its state. Common sense would suggest that surely the cat is either dead or alive inside the box, whether we know it or not, but applying the rules of quantum physics, the actual state does not come into being until the moment that we measure it. Of course, Schrödinger didn’t actually believe that; he thought the idea made no sense. His real goal was to point out that if this was dumb idea when applied to cats, it might be just as dumb an idea to apply to subatomic particles.

Now, in the 21st century, we appear to applying a Schrödinger’s cat logic to the ethics of organ donation.

Read the rest of the essay here. --Stephen Drake

Update on Kaylee Wallace & Hospital for Sick Children

My apologies for the unexpected short hiatus. I had a few too many offline issues to deal with last week to get to the blog. Barring unforeseen circumstances, the next couple of weeks should be better.

First, an update on Kaylee Wallace. Thanks to the public expressions of concern over her fate and whether or not she was actually "dying," it looks like Kaylee's life is on a new track. Here is pretty much the last word we have, from CityNews.ca:

Kayleee Wallace, a two-month-old girl that suffers from Joubert syndrome, was given just days to live. Her mother and father decided that they would donate her heart to another infant in need, one-month-old Baby Lillian.

But when Kaylee was taken off the respirator, the little girl kept breathing - all on her own.

On Sunday, Toronto's Hospital For Sick Children revealed she was now in stable condition and no longer a potential donor.

Her father, Jason Wallace, spoke of the emotional rollercoaster he and his wife have been on in the past few days.

Earlier in the month, Wallace alleged that the hospital pressured him into making decisions that may not have been in his daughter's best interest.

They were led to believe Kaylee's prognosis was hopeless because of her rare brain condition.

Wallace now says he's content with an apology he received from the hospital and acknowledged the challenges faced by doctors.

"It may be that Joubert is such a confusing syndrome that it confused them, even the best in the world," Wallace explained.

Readers might have noted that a press release issued by the Canadian Association for Community Living (CACL) noted a history with the Sick Children's hospital.

That history is revealed in a post at the What Sorts of People Blog. Most of the post is devoted to a press release issued by Barbara and Timothy Farlow, tying the current situation to the death of their own daughter, Annie, in 2005. Here is an excerpt from the release, which can be read in its entirety by clicking here:

Annie Farlow (May 25- Aug 12, 2005)

Annie’s death has led us to question the policies and practices related to the care provided to infants born with certain genetic conditions related to disabilities.

Our daughter Annie had a difficult prenatal diagnosis. We wished to provide treatment and/or surgery for her, only if it was in her best interest. Otherwise, we wished for her to have a dignified death. We met with several doctors before Annie’s birth and were assured of Sickkids’ policies regarding eligibility for surgery and ethical processes.

On August 12, 2005, our daughter died within 24 hours arrival at the Hospital for Sick Children. The events which occurred during those final hours were inexplicably tragic.

• No call was made to the ICU for an hour when Annie had a respiratory “crash”.
• A “Do Not Resuscitate Order” was entered without informed consent.
• Multiple violations in the procurement and documentation of narcotics are acknowledged to have occurred.

For more information on Annie Farlow's death and the frustrating fight to get answers, please check out www.anniefarlow.com. --Stephen Drake

Ron Seigel: "My Confrontation with Kevorkian's Lawyer"

Today's entry - an article by Ron Seigel - seems timely on the 10th anniversary of Kevorkian's sentencing in the second-degree murder conviction for his televised "execution" of Thomas Youk. Sentencing day was also incarceration day. Kevorkian was taken from the courtroom in handcuffs. But Ron's article doesn't stop there. He also discusses some historical medical abuses of infants with disabilities and discusses the social factors that can drive people with disabilities to feel their lives aren't worth living. Regular readers of this blog will appreciate just how relevant these issues are to recent events covered here.

From Ron's bio:

Ron Seigel, a seasoned Michigan reporter who has enjoyed national circulation for many of his important articles received his Bachelor of Arts degree from the prestigious Monteith College of Wayne State University, Detroit, Michigan. His many articles have appeared in such newspapers as the Christian Science Monitor, Our Sunday Visitor, Catholic Faith and Family, The Jewish News, the Michigan Citizen, the Detroit News, the Detroit Free Press and the Detroit Legal News. Ron directed United Community Ombudsmen, an organization which assisted community residents in dealing with government institutions.

MY CONFRONTATION WITH KEVORKIAN'S LAWYER

By Ronald Seigel

September 6, 2008

Columnist Leonard Pitts of (The Miami Herald) wrote that he tells journalistic students “if you ever propound an argument, and all the other side can do is to have a tantrum, you can consider yourself the winner by default.” One might add that whenever a reporter asks question and all he gets is a tantrum, it is of utmost importance that he keep asking questions, and consider looking into a few more. I had that experience last year at a press conference Jack Kevorkian held soon after he got out of prison. The tantrum did not come Kevorkian himself, but from his usually mild mannered lawyer, Mayer Morganroth.

In the middle of one of my questions, Morganroth launched Into a tirade, suggesting he did not believe that I was really a freelance writer. He stated that he really felt I was a great imposter engaged in a conspiracy to embarrass his client. He forbade me to say anything further, in effect, preventing me from performing my function as a journalist under the first amendment.

When asking these questions, I made no personal criticisms of Kevorkian himself. My questions merely dealt with the political positions he expressed at the press conference. Since Kevorkian is now running for congress and will undoubtedly attempt to put his ideas into law, it is even more important that these questions be raised.

While Kevorkian was best known for assisting people in committing suicide, he went to jail for going further and actively performing the killing himself. During the press conference Kevorkian advocated legalizing such active killing in order to assure patients “ freedom of choice”

However, he opposed enacting laws that set up regulations or doing so. He wanted the regulations set up by groups of doctors or as he phrased it “ organized medicine” I have no such wish to attack doctors. I have a strong respect for the dedication and intelligence of the doctors I know and those I have been treated by. However, I also have deep reservations about allowing any group of people to operate without legal restraints and become a law unto themselves.

I feel definite alarm about giving people in any profession a License to kill. So during the press conference I raised some Questions about occasions where groups of doctors failed to Behave like platonic philosopher kings or Olympian gods and demonstrated some frightening prejudices. I asked about how scholars and physicians from Georgetown University wrote (New England Journal of Medicine Feb. 25th, 1999) how when doctors were presented with hypothetical cases in a survey, they were unwilling to give the same treatment to Black patients as they were to White patients, and were reluctant to give women the same treatment they were ready to provide for men. African American women came out worse of all.

I also asked how decades ago staff members in one branch of “organized medicine “ the University of Oklahoma health Science, wrote in a national medical magazine (Pediatrics Oct 1983) that they denied life saving treatment to certain babies, because they were following a pseudo mathematical formula designed to “measure” their “quality of life” among the traits determining whether a baby lives or died was their parents! Income.

The American Civil Liberties Union (ACLU) protested such hospitals practices, noting family income could often be a “ proxy for race,” and under such policies children were being allowed to die on the basis of “race and class.”

African Americans have long been concerned about neglect in hospitals. After an experience with her daughter, the late civil rights champion, Fannie Lou Hammer, spoke out against denial of hospital treatment as passionately as she did about denial of voting rights. After my confrontation with Kevorkian’s lawyer, an African American woman told me, “People have to watch out for those who want to disconnect their love ones life supports.” When Kevorkian’s attorney was smearing me, he may have been consciously meant to cover up abuse in medicine. He may have been lashing out because of the unconscious fear that I was opening the door to questions he was psychologically unable to face about the movement that he identified himself with.

Questions might have come up about prejudices doctors have shown against patients with disabilities of all races. Years ago Sondra Diamond wrote about how doctors were reluctant to treat her when she was caught in a fire. Because she was largely paralyzed from birth, the doctors assumed she was incapable of living a “normal life.” Her parents insisted she receive the same routine treatment as other burn patients. She survived and lead a normal enough life to graduate from college, and become an educational consultant.

Tommy Meadows, a former chair of the Detroit City Council Task Force on Disabilities said one doctor was reluctant to treat his wife, Shereian, because he did not like the way she looked. Then the doctor doubted she was worth keeping alive, because he considered her “deformed.” It might have also came out that the distinguished American Medical Association (AMA), which is close as anything in This country to organized medicine, wanted to sacrifice Kevorkian’s scared principle of freedom of choice for those who want to live.

In a 1996 resolution, AMA members declared they wanted to “accommodate” doctors, who wished to deny life saving treatment, when they believed a patient did not have a “worth-the-effort” quality of life. In such cases, the AMA advocated giving hospital appointed ethical boards the power to overrule patients and their families.

They advocated board members determine the value of a patient’s Life by “ subjective values.” There is one word for “subjective value” And this is prejudice. AMA style ethical boards could make this a far more dangerous world for victims of prejudice, whether those with disabilities, African Americans and women, particularly those like Shereian Meadows, who may fail to live up to their “subjective” standards of beauty. One wonder who would be safe.

Tommy Meadows noted, “Today we’re fighting for us. Tomorrow we may be fighting for you. If you don’t stand with us today, who Will stand with you tomorrow? This raises a more fundamental question. If prominent figures in organized medicine are willing to disregard patient choices in regard to saving their lives, how can we trust them to respect patients freedom of choice when they are allowed to make the rules for active killing?

This might give rise to an ultimate question on the nature of the so-called “rights to die” movement. I patients wishes can be set aside so easily, might not “freedom of choice” simply be a code word for getting rid of lives that some do not want around? How far is this talk of “quality of life” an attempt to subvert the principle on which this nation was founded that all men are created equal? Is this an attempt to replace this with a doctrine that there are some inferior quality second and third class, Grade, B, C, and D lives that is all right to destroy?

How far are attempts to whittle away the long held safeguards that protects human life sabotaging our guarantees of equal protection of the law? For the past decade I and other disability rights advocates have been trying to head off the AMA’s master plan by working for a passage of a law making involuntary active and involuntary passive euthanasia hate crimes, when committed by health care institutions or providers receiving federal funds and done because of disability, race, religion, ethnicity, gender or sexual orientation. It would also define as hate crimes acts of brutality and cruelty in hospitals and nursing homes. The Bill is called the Shereian Meadows Amendment.

Those journalists who are allowed to attend Kevorkian’s press Conferences might well ask him how he stands on this issue of freedom of choice. Readers might want to write or e-mail their Senator, or Representatives, and ask the same. One hopes we will also ask ourselves the most important question of all. Is this arrogant elitism in our institutions of healing a symptom of malady in our society? The late Rosa Parks said before her death that we must “respect and care for each other” if we are to “live and be free.” Do we all receive respect and caring?

Certainly most of us do not have to convince special ethical boards of value of our lives. However we do have to struggle for acceptance, whether in school playgrounds, teen-age cliques, in getting and keeping a job, “Keeping up with the Joneses,” or maintaining our dignity in old age homes. Some find it difficult to gain acceptance in their own families.

Often we feel the only way we can gain acceptance and respect is by putting others down. In such atmosphere, is it not easy to discount the worth of others, and see their lives expendable? In such an atmosphere, some come to reject themselves and feel that their own lives are worthless. How many of the “voluntary” suicides Kevorkian talks about might caused less by the physical pain or suffering of illness than by the emotional pain and suffering of society’s rejection, and self-rejection?

Note: this was originally published on a site named newswithviews.com - Ron cannot get a Michigan newspaper to accept an article about Kevorkian from. Evidently, having reporters ask hard questions at a Kevorkian press party is considered to be in pretty poor taste and the papers don't want to encourage the practice. --Stephen Drake

I'm Doing the Fun*Run to Support ADAPT and Disability Rights

On April 26th, ADAPT will be holding its annual Fun*Run in Upper Senate Park in Washington, DC. I won't be going to the national action or at Upper Senate Park, but I have signed up to do ten laps around a large block in my neighborhood on that day.

For readers of this blog unfamiliar with ADAPT, here's a brief overview (copied and edited from ADAPT site):

For over 25 years, ADAPT has been a leader in the fight for accessible public transportation, the redirection of public funds from nursing homes and institutions to community-based services, and for a national personal assistance policy based on functional need, not diagnosis.

ADAPT strategies include using civil disobedience as a tool to garner public attention and effect needed change in the laws, policies, and services affecting persons with disabilities. While members of ADAPT are willing to sit at the table to change policy, we are not afraid to go to jail—if that’s what it takes for change to occur.

Direct Action works and is a necessary technique for making positive change for communities that are marginalized by discrimination and pity. Chaining ourselves to buses resulted in accessibility in city transportation. Due to ADAPT’s earliest efforts, Denver had 100% accessible mass transit prior to the passage of the 1990 Americans with Disabilities Act. The same is true in other cities where citizens used direct action to demand equality.

ADAPT’s demonstrations, protests and marches have had a significant impact on the redistribution of Medicaid dollars in long-term care. Just 10 years ago, more than 80% of long-term care dollars went to nursing homes. Today it’s less than 70%, which has resulted in great numbers of people with disabilities being freed from institutional settings. It is time to assure that ALL our brothers and sisters have that same opportunity for freedom.

About sponsoring me for the Fun*Run:

Please go to the following link, which will allow you to pledge an amount per lap or pledge a flat amount.

And, in case you are wondering, your sponsorship will benefit Not Dead Yet. Details are at my sponsorship site. --Stephen Drake

PS -- If you're making a pledge, keep in mind that I have committed to do TEN laps. That is the number you should use to figure your pledge if you want to pledge per lap.

Canadian Association for Community Living: Press Release on Kaylee Wallace

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.

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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

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

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"

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