Fifth Anniversary of Terri Schiavo's Death - A History Lesson

I've probably revisited the struggle over the life of Terri Schiavo in a backwards fashion. I - like other disability rights advocates and activists - have a good memory and were deeply involved in the efforts to stop the removal of Terri Schiavo's feeding tube.

What that means is that our memory of the struggle is far different than the majority of the public, who mostly believe that the Congressional bill passed hastily by Congress was something the Republicans "pushed down people's throats." For varying reasons, political interest groups at both end of the spectrum prefer that the public misremembers events that way.

Below is a C-Span broadcast from March 19, 2005. It features Senators Tom Harkin, Rick Santorum, and Mel Martinez - all of whom played key roles in writing the bill that granted review in federal court of Terri Schiavo's case. Harkin, a long-time ally of the disability rights community, explained his role in the passage of the bill and how that in rare cases a federal review might be necessary. All of the Senators express hope that a broader bill can be worked out in the future to apply to a broader group of individuals. All express gratitude for bipartisan cooperation on the Congressional bill.

I am lousy at doing transcribing - so I apologize for the lack of a transcript. Please note especially Harkin's defense of the efforts.

For most people, this will probably be the first time they've heard the remarks - since virtually every major news organization - radio, cable, network and print - ignored this press conference and the bipartisan nature of the agreement that allowed passage of "Terri's bill." Video below:




That bipartisan moment didn't last long. It actually started to unravel several days before this press conference. Senator Martinez inadvertently passed a memo to Senator Harkin that listed a list of "Republican talking points" that involved ways the Schiavo case could be used to attack Democrats.  The memo was written by an aide to Senator Martinez, who professed ignorance over its contents at the time.

After Terri Schiavo died, several leaders of Conservative interest groups started using the unsuccessful court challenge as a political rallying cry:

As the vigil in Florida ended for Ms. Schiavo, who was severely brain-damaged, conservatives said the refusal of the federal courts to step in underscored the need for Senate Republicans to end the ability of the Democratic minority to filibuster President Bush's judicial nominees.

Dr. James C. Dobson, the founder of the evangelical group Focus on the Family, said the judges who would not stop the removal of Ms. Schiavo's feeding tube were ''guilty not only of judicial malfeasance -- but of the cold-blooded, cold-hearted extermination of an innocent human life.''

Tony Perkins, the president of the Family Research Council, said: ''It is a tragic, unfortunate but avoidable event that should awaken Americans to the problem of the courts. It is no longer theoretical. It is life or death.''

Right-Wing interest groups and leaders weren't the only ones looking to further polarize the public - and revise history - in the name of political gamesmanship.

In mid-April 2005, DNC Chair Howard Dean announced that Democrats would make the Schiavo case an election issue:

Dean, who has called congressional intervention in the Schiavo case "political grandstanding," singled out House Majority Leader Tom DeLay (R-Texas) for his leading role in the matter.

"This is going to be an issue in 2006, and it's going to be an issue in 2008," Dean told about 200 people at a gay rights group's breakfast in West Hollywood, "because we're going to have an ad with a picture of Tom DeLay saying, 'Do you want this guy to decide whether you die or not? Or is that going to be up to your loved ones?' "

Dean, a practicing physician until he became governor of Vermont in 1991, added: "The issue is: Are we going to live in a theocracy where the highest powers tell us what to do? Or are we going to be allowed to consult our own high powers when we make very difficult decisions?"

Before Schiavo's death, the Republican-controlled Congress passed legislation giving her parents the right to take action in federal court to have her feeding tube reinserted, but no judge intervened. Schiavo's husband had fought for years to withdraw the tube, arguing that she would not have wanted her life extended.

Although Democrats voted for the measure, Dean said it provided an opportunity to showcase what he called Republican intrusiveness in the lives of Americans.

This is far from a complete list of those who promoted a revisionist history of the Schiavo strruggle for their own political ends, but it's pretty representative.

On the right and the left, both bet on the same revision of history - that the battle over Terri Schiavo was a chapter in the "culture wars."  In the end, it would seem that Howard Dean won the "bet" over who would be best served by that revision. 

The real losers, of course, are people under guardianship or a conservatorship.  The atmosephere at present is poisonous in terms of revisiting what kind of protections people whose decisionmaking is in the hands of others might need.

My 2003 Op-Ed on Terri Schiavo and Disability Concerns

NDY was involved with the fight to prevent Terri Schiavo's death for several years.  In 2003, I submitted an op-ed to the LA Times that was accepted and published.  It must have struck some kind of chord, because it ended up appearing in over 20 newspapers - in and out of the USA.

The LA Times has a free archive of its material, but it's really cluttered with ads - ads which no doubt help to pay for the free archive.  As the author of the essay in question, I have reproduced it in full below, with a link to the article itself at the LA Times archive:

(Note - I did not get a say in the title.  Blame the editors of the LA Times, not me.)

 Disabled Are Fearful: Who Will Be Next?

Commentary
October 29, 2003 |Stephen Drake, Stephen Drake is the research analyst of Not Dead Yet, a national disability rights group.

Bob and Mary Schindler consistently refer to their daughter, Terri, as a disabled person. They're right.

Although most newspapers are covering this story as an "end of life" or "right to life" issue, what ultimately happens to Terri Schiavo will affect countless other people with disabilities in this country.

Like many disabled people, Terri Schiavo is unable to tell us what future she prefers. She left nothing saying she preferred starvation to living with a disability. She never signed a legal document designating her husband as her surrogate in the event she became unable to communicate.

Despite this, media commentary is dominated by bioethicists and "end of life" experts telling us she should be left to die and explaining how "peaceful" starvation is as a way to die. To hear them tell it, Schiavo has no meaningful life. She can't talk, they say, she can't eat on her own, can't walk and has no control over her bowels or bladder.

Thousands of people with disabilities across the United States are watching the case anxiously. In fact, 12 national disability groups have filed "friend of the court" briefs in opposition to the efforts to starve Schiavo. Obviously, we want to know how all those commenting in this case feel about the lives of people with Down's syndrome, autism, Alzheimer's and other disabilities. Are they next for death through starvation? It's not so farfetched.

I was born brain-damaged as a result of a forceps delivery. The doctor told my parents I would be a "vegetable" for the rest of my life -- the same word now being used for Schiavo -- and that the best thing would be for nature to take its course. They refused. Although I had a lot of health problems, surgeries and pain as a child, I went on to lead a happy life.

Up until the mid-1980s, U.S. pediatrics journals routinely published reports on the selection criteria used to determine which disabled infants born in hospitals would be left to die.

One of the most notorious incidents involved a team at Oklahoma Children's Hospital in the late 1970s that used a "quality of life" formula for children born with spina bifida that factored in the parents' economic and educational level. Poor and uneducated parents and those on public assistance were more frequently advised to not treat their children. Twenty-four babies with spina bifida died, mostly from untreated infections. Not one person on the medical team was charged with a crime.

About 20 years ago, a hospital staff in Indiana was starving an infant with Down's syndrome. A whistle-blower alerted authorities, and the district attorney went to court to order hydration. The judge refused. Public comment supported the idea that "difficult" decisions like starving disabled infants were best left to the privacy of doctor-parent consultation.

In spite of that, enough of the public was sufficiently outraged to create a stir that cut across the political spectrum in Washington. As a result, congressional legislation was drafted to prevent medical killings of disabled infants.

The legislation, which ultimately was passed, was decried by bioethicists, physicians and others as an attack on both the medical profession and the privacy of family decisions. As a result of the passage of the law, though, more of us avoided getting killed in hospital nurseries through denial of treatment.

Guardianship -- which in this case was granted to Schiavo's husband by the courts -- has to have limits, especially when the stakes are the very lives of the people under guardians' power. It's important to remember that guardians have power over people, not property, and those people still have rights.

Terri Schiavo, Family Guy, Family Research Council - and a Reality Check

I really didn't want to write this kind of post, but with some of the building noise related to Terri Schiavo, it's become pretty clear that silence isn't an option. Wednesday, March 31st is the fifth anniversary of Terri Schiavo's death. I already had something planned for the blog that was bound to make some people unhappy, but very different than this post. (That other post will be published on this blog - on Wednesday at the latest.)

Last week, the show "Family Guy" opened with a short piece titled "Terri Schiavo - the musical." Sorry - no link. It was offensive and inaccurate.

Of course it was. No shocker there. I decided years ago that I didn't want to watch the show. For me, the real problem was that - out of four shows that I watched - two of them contained "gags" revolving around the humorous side of adults having sex with kids (or attempting to).  I don't see the humor in those kind of "gags." 

There are people I know who like the show and have told me I should watch it because there is material on the show I would find funny.  Based on my limited experience with the show, it's kind of like telling me I should go grope around in an unflushed toilet because someone dropped something really good to eat down there and I'd enjoy it.

Predictably, the Schindler family reacted.  I guess I don't blame them.  But in a press release they included this:

The Foundation is calling on all disability rights organizations and pro-life organizations to join us in admonishing the producers and writers of The Family Guy.

To my knowledge, no disability rights organization, including NDY, has chosen to join them.

This hasn't gone unnoticed by June Maxam at North Country Gazette.  In her article "Where Are They Now?" Maxam lists the national disability groups that were involved in fighting the removal of Terri Schiavo's feeding tube.  She then suggests that the "silence" from the disability community on "Family Guy" is "condoning and advancing the prejudice, bigotry and hatred of the disabled."

The fact is, we're busy with real crises - and the "Family Guy" skit doesn't come close to being a "crisis."  NDY is directly involved with coalitions opposing assisted suicide and euthanasia in 4 states, active in a major "futile care" case in one other, involved with a developing court challenge over guardianship limits in another state, providing technical assistance to disability advocates on state legislation, and monitoring the media for grossly inaccurate reporting on the Final Exit Network and individual homicides of people with disabilities.  On top of that, we are working with other national disability groups on other disability rights issues through a national network of advocacy organizations that are run by people with disabilities.  The majority of our work isn't that visible -we're seeking change, not headlines.

On the state level, every disability advocacy group is fighting looming draconian cuts to life-sustaining services - cuts which, if implemented, will result in early and unpleasant deaths for many people with disabilities through an indirect, backdoor euthanasia via neglect and abandonment.

Which one of these things do the Schindlers and June Maxam want us to put aside while we go support the Schindlers in their outrage over this show?  It's not like this is the worst thing the show has ever done - I think the bits I saw that turned me away were on an even lower level than the crappy piece on Terri Schiavo.  If a show that features gags around sexual innuendo and kids remains on the air and has no trouble finding or keeping sponsors, outrage over this skit won't scare them away.

Speaking of disability advocacy, tomorrow the Family Research Council is hosting a panel on Terri Schiavo's death.  Bobby Schindler is on the program, which describes him as follows:

Robert Schindler, brother of Terri; full-time pro-life and disability rights advocate

I'm sure the Family Research Council loves the conflation of disability rights and "pro-life."  That's one thing they have in common with prominent "lefty" bioethicists.  No one in the actual disability rights community appreciates it, though.  And we don't appreciate the description of Bobby Schindler as a disability rights advocate.

During the fight to prevent the removal of Terri Schiavo's feeding tube, the Schindlers showed little understanding of disability rights - or of the potential importance of the involvement of national disability rights organizations in the debate.  Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life.  If they'd made a habit of mentioning that, it would have been harder for news organizations - Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the "culture wars."  Unfortunately, framing the fight in terms of the culture wars suited "handlers" like Father Frank Pavone and Randall Terry just fine.

I wish I could say that I have any evidence that the Schindlers have any better understanding of the disability rights community and disability rights issues today than they did back then.  I don't.  They are not involved in any of the battles mentioned above - and play almost exclusively to Christian Conservative audiences.

I don't blame the Schindlers for whatever decisions they made back then - they were desperate, exhausted, grasping at whatever straw presented itself.  They lost a daughter and a sister in a long, drawn-out nightmare.

But it's a little hard to swallow the claim that Bobby Schindler is a disability rights advocate.  When the Schindlers ride into town, the "culture wars" ride in with them.

And at the Family Research Council panel tomorrow, the topic will be the "culture wars," not disability rights, since there is no one from our community sitting on that panel.  --Stephen Drake

ADAPT - and NDY - Celebrate Community First Choice Option in Health Care

Joe Biden is right - it is a big f___ deal.

First, here's what ADAPT, a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom, has to say about the health reform bill passed by the House and signed by President Obama: 

News Release

For more information, contact:
Mike Oxford, (785) 224-3865
Bob Kafka, (512) 431-4085
http://www.adapt.org

ADAPT Celebrates Community First Choice Option in Health Care Reform

ADAPT, the national cross-disability grassroots group, today celebrates the inclusion of the Community First Choice (CFC) Option and other long term care-related provisions in the health care reform package passed by the House on Sunday, March 21. These provisions bring people with disabilities across America one step closer to home and community-base supports and ending the institutional bias in Medicaid. Twenty years ago, with the passage of the Americans with Disabilities Act, people with disabilities realized the beginning of a civil rights dream of access to all levels of society. Today, ADAPT continues to fight to protect that dream, re-committing to the enforcement of the ADA-based Olmstead Supreme court case, which holds that no person can be forced to remain institutionalized against their will.

The Patient Protection and Affordable Care Act and its companion legislation, the Reconciliation Act of 2010, together include several items related to home and community based services. For example, starting in October of 2011, the CFC Option will give states the choice of providing home and community based services to Medicaid recipients instead of simply forcing them into nursing homes. The federal Money Follows the Person program will be extended until 2016. Provisions of the CLASS Act are also included in the new legislation. States will have increased federal funding matching incentives to fund community services. Yet while passage of this legislation is a social landmark, much remains to be done.

Read the rest of the press release here.

We're celebrating here at NDY as well. Assisted suicide, active euthanasia and withdrawal of treatment aren't the only ways to cause the premature deaths of people with disabilities.  Underemployed or unemployed people - or those with "pre-existing" conditions have been left to fend for themselves in a profit-driven health care system in this country.  People who have to rely on emergency rooms for treatment don't really get the same care for life-threatening conditions that can be gained through regular medical visits.  And, of course, those of us who are lucky enough to be insured get to "enjoy" premium increases since the cost of the emergency room treatments get passed on to us - and our insurers.

There are a lot of shrill voices out there - Tea Partiers being the loudest right now.  From "death panels" to "government takeover" they are talking about expansion of health coverage as though it's the end of civilization itself.  And yet, I get the feeling from the Tea Party crowd that the only "solution" they have to offer for the health care crisis is to keep the current system in place - in which more people get pushed out of the system.  And that means more people die early and unpleasantly.  We like to call that "backdoor euthanasia."

So, yeah, for all its faults, we are celebrating this long-overdue first step into ensuring health care for all US citizens.  It's about bloody time.  And it's a big f______ deal.  --Stephen Drake

Ann Neumann and Vancouver Sun: Dissing Disability Activists' Opposition to Legalized Euthanasia

Ann Neumann, writing on the Otherspoon blog, has stated in the past that she's inclined to shy away from direct criticism of disability rights groups like NDY in the "right to die" debate, seeing it as "a trap."

Neumann found a way around the "trap" last week by quoting someone else's work.  Specifically, she quoted a "hit and miss" attempt at analysis of the impact of the disability rights movement in Canada published in the Vancouver Sun.

Here's the relevant portion of the article in regard to assisted suicide and euthanasia, which Neumann also shares on her blog:

The battle for disabled rights has had other unpredicted twists and turns.

One of them is over the so-called "right to die." As advocates for the disabled have continued battling for recognition, they have clashed with people who want laws in Canada and the U.S. permitting assisted suicide for those with severe disabilities and terminal conditions.

Even though polls show the majority of Canadians support regulated euthanasia, disability rights activists have strongly lobbied politicians to make sure no one, regardless of the severity of their disability, should be able to choose an assisted suicide.

In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical "slippery slope" that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.

In turn, advocates for assisted suicide maintain the arguments of disabled-rights activists are a misplaced over-reaction to their proposals.

American readers should take careful note of the specific wording.  The debate in Canada is not limited to advocacy of assisted suicide or euthanasia for the "terminally ill" alone.  As I'll get to in a bit, it's not even limited to those who ask to die.

All the more curious that she'd highlight this, since one of her criticisms in her previous post responding (sort of) to Not Dead Yet, contained this:

As to the provision of rights to one group infringing on the rights of another, that's just bad thinking too. Giving a mentally-sound, terminal patient with less than six the right to a lethal prescription that they may or may not choose to take when death approaches has nothing to do with the disabled community. Again, I sympathize with the fear and vulnerability the disabled community feels toward the medical industry, the state, and society. But conflating two separate issues is just bad advocacy. With a little (understandable) paranoia thrown in.

Paranoia?  Certainly not in Canada.

See, the reporter at the Vancouver Sun didn't do his homework.  The one single case that galvanized the disability community in Canada in regard to this issue was the murder of a disabled 12-year-old girl by her father, who claimed it was a "mercy killing" after failing to pass her death off as a natural one.  Robert Latimer, who gassed his daughter Tracy in the cab of his truck, had many defenders - including members of the "right to die" movement in Canada.

Ruth von Fuchs, current president of the Right to Die Society of Canada, had some pretty unambiguous  quotes during the trial of Robert Latimer:

Proponents of euthanasia say that, until proper legal and social supports are in place, many people, like Latimer, have to take the law into their own hands. "This law is being written unofficially in emergency rooms and intensive care wards every night," says Ruth von Fuchs, a member of the Right to Die Society in Toronto. Von Fuchs views Tracy's death as part of a "continuum" that begins with brain-damaged infants, some so severely handicapped that doctors quietly remove life support within hours of birth. It is unfortunate, she adds, that because mercy killing has been "criminalized," Latimer felt he had to act alone, without the help of a social worker or medical expert. Von Fuchs, and other members of the euthanasia movement, is calling for a change in attitude to mercy killing. "In our society, we forbid people to give up," she argues. "We say, 'Never say die,' but sometimes you have to stand back and realize that really is a cliché. We cannot fix everyone every time forever."

You want a clearer statement from a leader in the Canadian "right to die" movement?  Here is an excerpt from a 1997 NY Times article quoting the late Marilyn Seguin, then the executive director of of the Canadian group Dying with Dignity:

Marilynne Seguin, executive director of Dying With Dignity, a Toronto-based group promoting freedom of choice for physician-assisted deaths, said that the Latimers had already lived under a sentence during the 12 years that Tracy was alive and that to add the 10-year punishment "is quite unconscionable." (emphasis added.)

Going back to the original article, opposition of disability rights activists - and mistrust of the motives of euthanasia advocates - might seem less like an "overreaction" and more an appropriate reaction with more information.

The Vancouver Sun reporter failed to supply a full context for the nature of the real debate here - through laziness, sloppiness or reasons unknown.  Whether Neumann found this appealing due to true ignorance or a simple wish to use misinformation is anyone's guess.  But even with the limited information available in the article, she certainly can't accuse disability activists of conflating "terminal illness" with "disability."  Disability is openly on the agenda of the euthanasia proponents in Canada.

It is here in the US as well.  The larger organizations just favor an incrementalist approach and are a little embarrassed by the recently publicized more radical activities of the Final Exit Network.  --Stephen Drake

Bad Cripple on Washington State Death Toll (blog recommendation)

Earlier this month, Washington State released its report on the first 10 months of its brand-new assisted suicide law.  You can read a pretty typical press account at this NY Times link.

However, neither the Times nor most of the media gets at some of the troubling information that emerges from this report - limited as the information is.  The best analysis I've read so far is at Bad Cripple, the blog maintained by Bill Peace.

Here's an excerpt from his analyis and comments from his blog essay "Assisted Suicide in Washington: Death Toll 36":

Why are people choosing to die? Here is where we get into why assisted suicide is so dangerous. I am opposed to assisted suicide as are many others with a disability (though not all) because of the reasoning involved and justifications used to make it legal. So, why did people choose to die in Washington: from the executive report.

Table 3. End of Life Concerns reported from the After Death Reporting From. Data is available for 44 of the 47 participants in 2009 that died.

• Losing autonomy, 100%
• Less able to engage in activities making life enjoyable, 91%
• Loss of dignity, 82%
• Losing control of bodily functions, 41%
• Burden on family, friends/caregivers, 23%
• Inadequate pain control or concerns about it, 25%
• Financial implications of treatment, 2%

I am not terminally ill but have experienced or felt every single one of the above feelings. I do not have the ability to walk and hence have lost some individual autonomy in certain circumstances. There are activities I once enjoyed that I can no longer do that made life enjoyable. I have lost a degree of dignity. I am certainly socially inferior, less dignified, to those who are bipedal. I have lost control of many bodily functions. I do worry about being a burden to my son when I am old. I do worry about the financial implications of my disability. I would be a fool if I thought otherwise considering that I am sitting on a $400 wheelchair cushion designed to last two years at most (insurance does not cover such luxuries). I have in the past experienced gut wrenching pain that made me wish I was dead. Yet here I sit at my desk and cannot help but be perplexed. Why does my crippled body command so little respect. Why is my existence so easily called into question?

Please go and read the rest of the blog entry here.  --Stephen Drake

Newsweek: Veterinarian Says We Should "Treat People Like Dogs"

Out of all the newsweeklies on the market, Newsweek has published some of the most outrageous pieces regarding people with disabilities and euthanasia.  This week's "My Turn" column by veterinarian Karen Oberthaler isn't the worst thing they've published, but it immediately brought to mind one their "classic" pieces.

Oberthaler's essay attempts to make a case that humans would be a lot better off if our health care was delivered in the same way that veterinary care is for household pets.  Oberthaler is not your average vet - she's an oncologist who says "pet owners routinely rack up $10,000 bills" to pay for saving the lives of their pets.

Oberthaler obviously doesn't practice veterinary medicine in my neighborhood.  I don't think there are many people in my neighborhood with that much extra money on hand - and very fewer who would dip that far into savings in our middle-class corner of the city to save the life of a household pet.

But someone whose human clientele "routinely" pay large amounts of money to save and extend the lives of their pets might see the following as reasonable, I guess:

When facing the death of a loved one—human or animal—the real challenge is coming to grips with the reality of the situation. Since my approach draws me closer to families, it's easier to suggest that the best course of treatment may be relieving pain rather than fighting a disease. Owners are less likely to fear that you're giving up on their beloved pet if they trust you. When I'm asked about performing tests, and I know the results won't change the outcome, I say so. If your golden retriever's cancer is too far advanced for surgery, getting a biopsy may be a pricey—and superfluous—exercise.

No family wants to subject its already sick pet to uncomfortable tests or dump thousands of dollars into dead-end diagnostics. So why do we do that to our grandparents?

Oberthaler stops just short of the most obvious comparison in an essay advocating human health care should be more like the care for household vets and doesn't mention euthanasia - but I'll bet the majority of readers got there without her help, especially if they are long-time readers of Newsweek.

In 1992, the magazine published a "My Turn" column by Katie Letcher Lyle titled "A Gentle Way to Die."

Lyle also thought we did better by pets than by some humans.  After first giving a tender account of having her cat euthanized, she moves on to give her view of what she obviously feels is a life not worth living.  "Henry" is a man with intellectual disabilities who has been abused and abandoned by the system for most of his life.  He's in a group home now and she doesn't see much joy or purpose in his life:

I know the arguments about the abuses of kindly death, and I know mental incompetents were the Nazis' first victims. The money is certainly not the point; I believe strongly that one can judge any civilization by how decently it treats its sick, its elderly, its disabled. But money is a reality, and adding up all the institutional, medical and social services, Henry has already cost American taxpayers roughly $1.5 million. But my point is, what does life hold for Henry now? I'll tell you: either a drugged hell of an existence behind bars; or, more probably, deinstitutionalization, street life, an agonizing death in a filthy alley. It happens to others, everywhere, every day.

I don't like the conclusion I'm forced to. But is a gentle death for a human being always the worst answer? Laws can be implemented to prevent abuses. It seems patently untrue to me that any life is always preferable to no life. I wish, more than I can say, that there were some place on this earth where Henry could live happily and freely and be loved and understood. But since there isn't, I find it disgraceful, as well as ironic, that we cannot bring ourselves to treat our fellow humans as humanely as we treat our pets.

The original article described Lyle as some sort of "advocate" for the "handicapped."  I hope she's no longer allowed anywhere near people with intellectual disabilities.

****

Getting back to the current "My Turn" essay, I suspect the vets in my neighborhood would tell Oberthaler that a lot of pets they euthanize could be cured, but owners don't have the money for the treatment.  Others balk issues like amputation of a limb or the loss of vision in an animal - many owners see death of a pet as a better outcome than having to live with a disabled pet.

Some even have reasons that are harder to wrap my head around.  Just about a week ago, a story found its way into my newsfeed that raised a lot of eyebrows:

Dog euthanized to be buried with owner

March 5, 2010 -- One man's last request has animal lovers questioning his state of mind and motives. The Arkansas man asked that his dog be buried alongside him -- a dog that was only 2-years-old and perfectly healthy. 

Fifty-four-year-old Donald Ellis was buried last week at Oakland Cemetary in Monticello, Arkansas. But not before he made an unusual request: that his 2-year-old Yorkie "Tom Tom" be buried alongside him.

Ellis' sister Marilyn McDaniel told reporters the family wanted to fulfill her brother's desire, so they took the Yorkie to the vet and had it euthanized.

According to McDaniel, Ellis said he wanted the dog to go with him because no one would love him like he did. 

BTW, the vet in the story hated putting the dog down, but was afraid that if he refused the dog would be killed in a way that wasn't as humane as the death he could provide.

That's the reality of health care for our pets.  We pay what we feel we can afford for the results that meet our satisfaction.  If it costs too much or we don't like what the outcome would be, we choose a "merciful" death instead.  Not that we tell ourselves and our friends that's how we make those decisions - like Mr. Ellis who made sure his dog didn't outlive him - we tell everyone it's all about love.  --Stephen Drake

Georgia: Grand Jury Indicts Four Members of Final Exit Network on Multiple Counts

I missed this when the news hit yesterday, but things aren't looking great for the members of the Final Exit Network (FEN).

Here's the gist of the news, from the second paragraph of the story from the Atlanta Journal-Constitution:

An indictment returned Tuesday charges the Final Exit Network along with co-founder Thomas "Ted" Goodwin, 64, of Kennesaw and Punta Gorda, Fla.; Claire Blehr, 77, of Atlanta; and Dr. Lawrence Egbert, 82,  and Nicholas Alec Sheridan, 61, of Baltimore with violating Georgia’s RICO Act, assisting a suicide and tampering with evidence. The four are to be arraigned in Forsyth Superior Court on April 1.

More here about the investigation leading to the charges:

Once an investigation was opened, a GBI agent, posing as a Dawson County man dying of pancreatic cancer, applied for the Final Exit Network's help.

According to the charges, Goodwin walked the undercover agent through the steps that would have killed him. Goodwin allegedly demonstrated how he would hold down the agent’s hands to prohibit him from removing the "exit bag." That is when other agents came in and arrested Goodwin, according to the GBI.

As I suggested in the beginning of this entry, 2010 isn't looking to be a great year for the FEN.   It's even mentioned in the AJC article here:

In January, Wye Hale-Row pleaded guilty to assisting a Phoenix woman, who killed herself in 2007. Hale-Row was one of four Final Exit Network members indicted following the death of Jana Van Voorhis. The cases against the three other defendants are still pending.

Van Voorhis was found dead in her home on April 15, 2007 and an autopsy showed she died from helium asphyxiation. However, authorities say Van Voorhis was not terminally ill at the time and suffered from mental-health issues and depression.

This, of course, doesn't tell the whole story.  As reported earlier on this blog, Hale-Rowe - a prominent activist in the Hemlock Society and general assisted suicide advocacy for decades - agreed to testify against the other FEN members in Arizona as part of her plea agreement.

I'm sure the FEN is putting on a good show of bravado right now.  But the plea agreement and promise to testify from Hale-Rowe alone should have them all pretty worried by now.  And then there's the issue of their "training manual," which may be entered into evidence into one or both trials.  I hear there's some stuff in the manual that might not play real well with a jury.  --Stephen Drake

Jacob Appel: Bad Medical Historian, Questionable Ethicist or Just a "Spin Doctor?"

As a left-handed tribute to "bioethicist and medical historian" Jacob M. Appel, I have titled this blog entry as a question, leading uninformed readers to think maybe I will seriously analyze an issue with two or more sides.  In fact, as readers of this blog know, I have a definite viewpoint and people come to this blog reading the content with that in mind.

However, when readers of the Huffington Post come across an entry by "bioethicist and medical historian" Jacob M. Appel, titled in the form of a question, they might be inclined to think they are going to get expert, honest and unbiased analysis.  Since most readers of the Huffington Post aren't any more inclined to critical thinking than attendees at a Tea Party event, most readers might miss that while Appel may be an "expert," they don't get any analysis, let alone unbiased and honest analysis.

The source of this mini-rant is an essay posted by Appel on Huffington Post:

Should Children Have A Right to Die?

First off, the essay is about killing children rather than "letting them die."

Second, the essay is about why we should allow children to be killed, rather than an analysis of the pros and cons.  The title is subterfuge.

The title, to be honest, should read something like "Parents should be able to ask doctors to kill their seriously ill and disabled children."

But the misleading nature of the title only skims the surface of the distortions, omissions and manipulations in the essay by Appel.  They begin with the first sentence:

Advocates for aid-in-dying have largely focused their efforts on the rights of mentally-competent adults to end their lives when and how they wish.

Almost a year ago, this blog featured a post devoted to revealing the history of pro-euthanasia leaders promoting legalized killing of ill and disabled kids in the US and Canada. Maybe "historian" Appel didn't know about that.

The impetus for Appel's essay was the publication of a new study published in Archives of Pediatrics & Adolescent Medicine.  From the AP story on the study:

The study was published Monday in the March edition of Archives of Pediatrics & Adolescent Medicine. It was based on interviews with parents of 141 children who had died of cancer and were treated at three hospitals, in Boston and Minnesota.

Among parents studied, 1 in 8, or 13 percent, said they had considered asking about ending their child's life, and 9 percent said they had that discussion with caregivers. Parents of five children said they explicitly requested euthanasia for their dying children, and parents of three said it was carried out, with morphine.

The lead author of the study is quoted as doubting the interpretation of parents who believe the lives of their children were ended, saying they were probably given sufficient morphine to quell symptoms and that timing of death (imminent anyway) was "coincidental."

None of those nuances are explored by Appel.  He reasons that since a small percentage of the parents wanted the lives of their kids ended, it should have been legal for doctors to do it. 

What else does Appel do in the course of his essay?

• Fails to mention that the Netherlands - after lobbying from some medical professionals - has accepted infant euthanasia as a practice.  The first known "beneficiaries" were infants with (nonterminal) spina bifida and hydrocephalus.Where's a "medical historian" when you need one?
• Sets up a "straw man" argument citing fears of "nefarious parents," ignoring the historical reality of the willingness of some doctors in the US to manipulate parents to accepting "nontreatment" leading to death as the best thing to do with infants with spina bifida and hydrocephalus.  It's an important episode in US medical history - to disability advocates and activists, anyway.  To bioethicists and "medical historians," - not so much.
• Engages in his own rhetorical "slippery slope" as he glides through the essay discussing the euthanasia of "terminally ill" kids with cancer, then moves on without effort to include "chronically ill."  All of it falls under "end of life."
• Finally, and probably most egregiously, Appel really should have told his readers that he took a public position on this matter in an article published last year.  And to be totally honest, his position is that the potential suffering of a child or infant should be the determining factor in deciding to kill them - not the consent of parents.

I already knew that intellectual honesty and rigor weren't required to gain prominence in bioethics circles.  Apparently these traits aren't held in esteem in the field of medical history, either.  --Stephen Drake

Illinois: Kangaroo Hearing on "Presumed Consent" Organ Donation Bill Scheduled Today

From the Peoria Journal Star:

Public can weigh in on organ donation bill

Excerpt:

PEORIA —A public hearing is scheduled for 3 p.m. Tuesday in Springfield to receive comment on state Sen. Dale Risinger's bill to establish a presumed consent policy for organ donation in Illinois.

Sometimes called the opt-out policy, presumed consent has been adopted by many countries and has significantly reduced shortages and waiting time for donated organs. Rather than requiring people to sign up to be a potential organ donor, everyone is considered a potential donor except those who specifically opt out of the program.

Risinger's bill proposes a presumed consent policy applies for people 18 and older.

"This is an important first step to getting a law in Illinois that helps us have more organ donors. This is just the first step. To get it right, we need public input. The current bill is not in its final form," said Risinger, R-Peoria.

Risinger's stated commitment to soliciting public input seems pretty disingenuous.  Outside of a few careful readers of today's edition of the PJ Star, it's a pretty good bet that the only people who know about today's hearing are supporters of the bill. Predictably, the "public input" will reflect overwhelming support for a radical change in organ donation policy, simply because Risinger and his supporters have carefully stage-managed the coming show.  Look how well the PJ Star article is managed - no voice of caution or dissent.  A few phone calls to various bioethics departments would have yielded some.  If you want to know just how radical this change would be, consider that Illinois would be the only state in the country with such a policy.

So why would anyone have a problem with this?  I can only speak for myself - a former Illinois resident, but I'll give a few basic objections.

First, the term "presumed consent" is deceptive - as is the term "opt-out."  In fact, you can't really talk about "consent" at all with a bill like this, unless you think "imposed consent" makes any kind of sense as a term.

Second, some of us refrain from registering as organ donors because we don't trust some of the lesser-known, but worrying realities regarding organ donation and attempts to expand the donor pool.

I'll start off with brain death.  Most people assume that since the state they live in considers them a corpse if they're declared "brain dead," then the state also imposes some sort of uniform standards regarding how that determination should be made.

That's a comforting thought, but it's not the reality.  In fact, a 2008 article published in the Journal Neurology found wide disparities in how hospitals made determinations of brain death. It's not surprising considering how the statutes relating to brain death were written (from the article):

In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.

Notice that the autonomy of individual hospitals is treated with a great deal more deference in the UDDA than Risinger and his colleagues believe Illinois citizens should have over their own organs.

In case you're wondering, there have been a handful of cases made public in which people declared brain dead "miraculously" recovered.  Zack Dunlap's "miraculous" recovery is the most well-known.  Not so miraculous when you know that some institutions aren't as rigorous as others at making those determinations.

Maybe medical professionals aren't all that hung up on whether or not the determination of brain death is accurate or not, anyway.  Over the past several years adoption of the Donation after Cardiac Death protocol has allowed harvesting of organs from individuals within a short (a very short time) after their heart stops beating, usually through removal of a ventilator.  The issues here are too long and complicated to get into, but there are already some pretty troubling stories associated with the protocol that should give any reasonable person pause.  For more information on that, I recommend reading  this link on Ruben Navarro, this one on Kaylee Wallace, and this article by Dick Sobsey on "Schrödinger's Ethics."

Does that mean I would never be an organ donor?  No, it doesn't.  What it does mean is that my family knows that if I am declared "brain dead," they will demand to know exactly how the determination was made and how that stands up to the standards determined by the American Academy of Neurology.  If the "gold standard" has been met, they can get the organs.

I am not OK with the donation after cardiac death protocol and my family knows this.

See how much there is to discuss?  Wouldn't it be a great idea if Risinger decided to actually open this bill up to a real debate?  Isn't the public entitled to something better than what looks like a stacked deck masquerading as an open public dialog?

For more info on this bill, please check out the following link:

Bill status for SB3613 (includes link to full text of legislation)

According to the PJ Star article, testimony can be emailed to Sen. Risinger here.  He says he wants to hear from the public.  --Stephen Drake

Addendum: In my haste, I forgot to thank Nancy Valko for alerting me and others to this bill.  I doubt I would have heard about it without her digging out the information and sending it on.