Is Illinois next on the list for the multi-state investigation of Final Exit Network?

The recent articles on the multi-state investigation of Final Exit Network (FEN) list nine states in the ongoing investigation:

The GBI is now leading a wide-ranging investigation into the ring, which has led to raids in nine states. Authorities say they have searched 14 sites in Arizona, Georgia, Florida, Maryland, Michigan, Ohio, Missouri, Colorado and Montana.

It seems to me that there should be a tenth state on that list.

That tenth state would be Illinois.

Press reports identify Jerry Dincin as president of FEN. Below is information on Dincin from the FEN website (which I will not link to on this blog):

Jerry Dincin, PhD – President
Highland Park, IL
Joined Network Board 2006
First Responder, Senior Exit Guide and frequent Network speaker
Board member, Hemlock of Illinois (Network Affiliate)

Anyone reading the news stories associated with the FEN investigation should know by now that an "Exit Guide" is a FEN member who steers the person wanting to commit suicide through the process. Here's what they say about "first responders":

A First Responder* in your area will call you, talk you through our procedures, and make arrangements for an Exit Guide to contact you and arrange a personal interview in your home if that is appropriate.

So first responders play a central role in coordinating and directing activities.

In addition to Dincin, FEN advisory board member Rosalie Guttman is listed as a Founding Network Board Member, Exit Guide and President of Hemlock of Illinois (Network Affiliate).

In case you missed it, Hemlock of Illinois is an affiliate of FEN - the two organizations are significantly intertwined.

It's kind of hard to believe that with the president of the organization, an advisory board member and a sister organization, that FEN wasn't busy in Illinois as well.

I'm pretty sure they are - or they were a few years ago, anyway. That's when I received a call from some young woman who identified herself as a journalism student who was doing a story kind of "embedding" herself with a local group of exit guides. She was covering their "assistance" with an eighty-year-old woman - not ill, just normal old-age physical complaints, and kind of socially isolated.

Of course, since she got involved with FEN, she wasn't isolated any more. They were a warm, supportive group of "friends." All being very nonjudgmental about whether she decided to live or die. The young woman on the phone got quite upset when I pointed out that being nonjudgmental about her committing suicide was - in fact - a judgment in and of itself.

She got even more upset when I pointed out that the FEN "friends" would only act as a support circle so long as she kept suicide as her goal. If she decided she wanted to live, they would disappear as would the young journalism student.

I had nothing I could go to the police with that would justify any kind of investigation, so I let the matter drop and filed it away for a day when the story would be appropriate.

Today is that day - and wondering when Illinois gets added to that list. --Stephen Drake

NY Times Columnist Promoted Final Exit Network and Gave Contact Info

In case you're wondering, the Final Exit Network and its "work" was never a secret. In fact, they got a big boost of publicity nearly a year ago, from NY Times Health columnist Jane E. Brody.

The column - and her promotion of Final Exit Network - was addressed in this blog:

After laying out the Oregon law and people's options in terms of limiting life-sustaining treatment, Brody advances down her self-made slope to the advocacy of organizations like the Final Exit Network:

The network’s Exit Guide program accepts members with various incurable diseases that cause intolerable suffering. Members must be “cognitively functional,” “physically strong enough to perform the required tasks” and “able to procure” the needed items. Helium, when inhaled in place of oxygen, results in a loss of consciousness within a minute and heart stoppage in 15 minutes without causing the unpleasant sensation of air hunger, the authors reported.

She gives full contact information.

She didn't however, say anything about Exit "Guides" holding your hands down so you couldn't remove the bag.

Have to wonder how many people ended up finding Final Exit Network as a result of this column and her recommendation.

Follow this link for her column sharing info on Final Exit Network.

AP Story Quotes NDY on Final Exit Network

The latest AP story on the Final Exit Network investigation is out. This link is to SignonSanDiego.com:

Barbara Coombs Lee, president of the national advocacy group Compassion and Choices, said prosecuting assisted suicide only drives it underground.

"It's not the way to make it safe. The plastic bag is sort of the end-of-life equivalent of the coat hanger," she said.

There's only one way to interpret this spin by Coombs Lee. The solution to the "coat hanger" was the legalization of abortion. Since the Final Exit Network openly provides "help" to people who are NOT terminally ill, she has to be testing the waters here - and indicating a new willingness to move to a broader agenda in terms of legalization. After all, the kinds of people that Final Exit Network "helps" wouldn't be eligible in Oregon. It would take a much more expansive law to put them out of business, using Coombs Lee's analogy, wouldn't it?

Here's me:

But Stephen Drake of the group Not Dead Yet, an advocacy group for the disabled that opposes assisted suicide and euthanasia, said he wonders why the Final Exit Network's activities are not classified as murder.

"It's like approaching somebody who is on the ledge of a building and giving them a shove instead of pulling them back," he said.

Unfortunately, this is slightly out of context, since my remarks about "murder" were made in reference to the reports that Final Exit volunteers hold people's hands down to keep them from tearing the "exit bag" off. The remark about the ledge was when I was asked to provide a general characterization of them.

More later. I'm sure this is just beginning. --Stephen Drake

Four in "Final Exit Network" Arrested in Georgia Sting Operation

This story just broke last night, but it keeps growing. I am sure there will be further updates to share in the days ahead:

From the Atlanta-Journal Constitution:

The death had been planned for months, authorities say. Two helium tanks were purchased, along with an “exit bag,” or hood to be placed over the suicidal man’s head.

Thomas “Ted” Goodwin, 63, formerly of Kennesaw, and Claire Blehr, 76, of Atlanta, would observe the death of the man they were told suffered from pancreatic cancer. In truth, the man was a Georgia Bureau of Investigation agent conducting a sting operation at a residence in Dawson County.

On Wednesday, authorities say, Goodwin walked the undercover agent through the steps that would have killed him. He demonstrated how he would hold down the undercover agent’s hands to prohibit him from removing the “exit bag.” (Emphasis added)

At that point, other agents moved in and arrested Goodwin, said GBI spokesman John Bankhead. He, Blehr and two men in Maryland were taken into custody on charges they helped John Celmer, 58, of Cumming, commit suicide by the same method last June.

Celmer’s family found his death to be suspicious. They contacted the Cumming Police Department, which led to the GBI’s involvement.

Bankhead said agents found evidence in Celmer’s house linking him to the Final Exit Network, a Marietta-based volunteer organization —- of which Goodwin is president —- supposedly dedicated to serving individuals who are suffering from an incurable illness or intolerable pain.

The detail about holding the hands down to prohibit a "client" from removing the plastic bag opens up the very real possibility that members of this group have slid - from time to time - from "assisting a suicide" to outright murder.

That's only one of many very good reasons that seems to have sparked a multi-state investigation of the Final Exit Network, who brag about their more or less open-door policy of assisting just about anyone who is old, ill or disabled.

In at least one case, though, they appear to have even crossed that line. Back in 2007, the Phoenix New Times published an investigative report about the suspected involvement of members of the group in the death of Jana Van Voorhis, who struggled with issues related to depression for many years.

Yesterday, the county attorney in charge of the Van Voorhis case announced it is now on the "front burner." Further, that case is now part of a national investigation spanning six states.

This investigation could get to look like kicking over a rock - lots of ugly crawly things squirming to get away from the light. It looks like this investigation includes search warrants, which could include seizure of computer records, examination of bank accounts, etc. They'd better hope no one in their band of zealots got too sloppy or greedy.

This story isn't going away any time soon. Back with more as it somes in. --Stephen Drake

Sunday Night Oscar Protests Against Humanitarian Award for Jerry Lewis

Long-time readers of this blog might remember that Not Dead Yet took part in the blog against the telethon in 2007.

Jerry Lewis and the MDA telethon have been powerful producers and reinforcers of negative stereotypes of people with physical disabilities, all of whom get to be the victim of the negative stereotyping. MDA and Lewis more or less shrug off the criticism with an "end justifies the means" rationale, pointing to the money raised for MDA medical research and clinics. Putting that argument aside, that excuse means absolutely nothing to people with physical disabilities that are affected by the stereotyping but don't fall under MDA's target population, research and clinic-wise.

Needless to say, there was quite a reaction when the announcement came out last year that Jerry Lewis would be given a "special" Oscar - to honor his humanitarian efforts - meaning, of course, the MDA telethon.

For anyone interested in the broader construction of people with disabilities as objects of pity, please check out the following links for information on the long struggle with Lewis and the telethon - and last night's protests:

The Trouble With Jerry gives background and links to news coverage of the backstory and last weekend's protests.

NDY founder and president Diane Coleman gives her account of the Rochester, NY protest, with links to local coverage. --Stephen Drake

Good News: Hawaii legislature shelves assisted suicide legislation - for now

In addition to the situations in Montana and New Hampshire, there's been considerable concern of a renewed effort to reintroduce and pass a bill that would legalize assisted suicide in Hawaii.

According to the Honolulu Advertiser, that isn't going happen - for now, anyway:

HONOLULU — The Hawaii Legislature will not take up a proposal to allow assisted suicides in the state.

House Judiciary chairman Jon Riki Karamatsu said Wednesday he will not hear a bill that would allow terminally ill adults to get a lethal dose of medication to end their lives.

Karamatsu says advocates of the measure haven’t pushed strongly for the bill to be heard this year. He says he’s open to considering it in the future.

Any day we have one less front we have to fight on is a good day. --Stephen Drake

New Hampshire: Testimony Against Assisted Suicide Bill at House Judiciary Committee

Yesterday, the House Judiciary Committee of the New Hampshire legislature held a hearing on a bill that would legalize assisted suicide in that state.

Diane Coleman, founder and President of Not Dead Yet, wrote about it on the Center for Disability Rights blog yesterday:

Many people know that CDR is active in advocacy on the national level, and provides support and technical assistance in other states. That is also true of Not Dead Yet, which now has its national headquarters in CDR’s Rochester offices. Today, February 19, 2009, the House Judiciary Committee in New Hampshire held a hearing on HB 304 (http://www.gencourt.state.nh.us/legislation/2009/HB0304.html), which is titled “AN ACT relative to death with dignity for certain persons suffering from a terminal condition.” In case the wording leaves you in doubt, this is a bill to legalize assisted suicide.

This particular bill is broader in terms of who would be eligible for assisted suicide than any similar bill introduced in the U.S. so far. Other bills limit “eligibility” to people diagnosed to have less than 6 months to live, but the NH bill actually expands the definition of “terminal” in a way that makes virtually anyone with a significant disability or chronic condition “eligible” for legal help in killing themselves. You can find an analysis of this element of the bill at the Not Dead Yet blog at http://notdeadyetnewscommentary.blogspot.com/2009/01/new-hampshire-poised-to-redefine.html.

If pro-assisted suicide advocates were hoping to dominate the testimony today, they are in for disappointment. New Hampshire activists Bunny McLeod and Tom Cagle offered personal testimony. The Disability Rights Education and Defense Fund (DREDF) submitted written testimony by Marilyn Golden. Dr. Ira Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center submitted written testimony in opposition to the bill based on his extensive experience as a palliative care physician. I prepared testimony submitted on behalf of Not Dead Yet (NDY).

Read the rest of the entry, including links to the complete text of the testimony listed above.

Journal: Nurse's research into the ethics of organ donation causes her to reconsider her support

Once in awhile, something comes along that really surprises me. This is one of those times.

The January issue of Nursing2009 not only has an article harshly critical of organ harvesting regulations and protocols, it has made the article available online.

In Speaking up for organ donors (link to html version, with additional link to pdf on the page), Ellen Bridget Linde, RN, BSN explores the values she and other nurses espouse and how they come into conflict with organ harvesting practices.

From the article:

AS NURSES, WE FACE TOUGH ethical dilemmas as we provide end-of-life care, especially when our patients are candidates for organ donation. In this article, I'll explore two basic issues: how death is defined and who makes decisions for potential organ donors who haven't made their wishes known. First, let's look at some basic ethical principles.

Examining your values

Nurses must consider respect for life and bodily integrity in light of the procedure for recovering organs. Nursing is primarily grounded in beneficence (doing good) and nonmaleficence (not doing harm). But nurses interpret these guiding principles in various ways. Some, believing that removing vital organs is what kills the patient, view organ donation performed under current criteria for pronouncing death as an act of killing. Others suggest that organ donation is a “moral duty, an obligation,” considering society's lack of alternative healthcare resources. But not all nurses are comfortable with a value system driven primarily by the needs of transplant recipients rather than by the needs of the potential donor.

The middle of the article details the various ways in which death has been defined and redefined, partly in response to the demand for more availability of organs for transplantation. Since the article is freely accessible, I leave it to others to go read the exploration of the complications surrounding brain death, non-heart-beating donation, and other matters affecting organ harvesting practices.

Bottom line: there are non-trivial conflicts between traditional values espoused in the nursing profession and organ harvesting practices to make a number of practitioners a little queasy:

Studies indicate that although nurses generally report positive attitudes toward the idea of donation, their unwillingness to donate their own organs or the organs of their family members suggests either some uncertainty or other barriers to donation. Perioperative nurses involved in organ procurement experience a variety of feelings as they participate in the removal of organs from a body that physically appears the same as that of any other surgical patient. Perioperative nurses have described their participation in organ procurement as disrespectful, traumatic, and emotionally draining.

Where do I stand on organ donation? When I started researching this article, I was an avid, outspoken advocate for organ donation, but I've since had a change of heart. Shewmon's study of 175 patients who met the full criteria for whole-brain death led me to conclude that it's ethically wrong to recover organs from a person who's still breathing—regardless of whether or not breathing is achieved through mechanical ventilation. Although I'm no longer a potential organ donor, I'm an avid and outspoken supporter of stem cell research because I believe it's a realistic alternative to organ procurement.

The Shewmon study referred to showed that many individuals meeting the full criteria for brain death were still alive in ways that this nurse considered meaningful.

Neither the Shewmon study nor this article come close to talking about some even more disturbing aspects of brain death determination.

More about that next week. --Stephen Drake

(thanks to Nancy Valko for pointing this article out)

NJ: Woman Finds Aneurism + Medicaid = SOL*

*"SOL" is an acronym. If you don't know what it stands for, you can look it up.

From the Hudson Reporter:

After being diagnosed with a medical condition that threatens her life, a Union City woman was forced to spend two critical months searching for a doctor willing to help her.

Peggy Albedhady, 47, learned she had a 6-millimeter brain aneurysm, an abnormal bulging of an artery in her brain, last November. She said that since then, she has been discharged too early from two prominent area hospitals and denied appointments with dozens of doctors.

The reason for so many rejections, she said, is her insurance: Medicaid.

Medicaid, a state and federally funded program, provides healthcare coverage for disabled individuals and people with little to no income.

“I don’t have a lot of money,” she said last week. “Does that give me the right to die?”

That's what I'd call a rhetorical question. The answer is obvious, isn't it?

Dying is cheap, doesn't demand much of bureacracies, and no one has to worry about you filing a complaint in regard to the lack of follow-up care - or its quality.

When she collapsed on the way to the bathroom, her daughter told her it was time to go to the hospital. They went to Hoboken University Medical Center’s emergency room, but there was a very long wait, said Albedhady, so her daughter suggested they go somewhere else. They decided to go to a hospital with a great reputation, so they went to Hackensack University Medical Center.

Albedhady was admitted to the hospital. Tests revealed she had a brain aneurysm, as well as Hepatitis A and B. She was scheduled for further testing, but five days later, she said, she was abruptly discharged without the tests or an explanation.

“[They] discharged me like I can’t describe it,” said Albedhady. “Like you got tired of your animal, you got tired of your pet, and you just throw it out in the street.”

Albedhady's description of the treatment of pets is somewhat different than some views we've discussed on the blog recently. Peter Baume, Dr. Gifford-Jones, and Thaddeus Mason Pope all recently embraced the idea that humans would benefit from the "kindness" we humans show our pets.

Albehady's experienced some of the "kindness" firsthand and doesn't seem to think much of it.

To be fair, the article says that there are medical professionals - including specialists - who will take Medicaid patients where Albedhady lives. It would be nice to think that the hospitals who threw her out gave her a list of them, but they didn't. Apparently, they don't think it's their job to make locating the appropriate physician any easier for a patient with a critical condition. When she was finally able to locate an appropriate specialist, the only opening to see her was months away. That will be a relief to her - if she lives that long.

There are a lot of people out there who have concerns about limits to care under plans to get something close to universal health coverage in this country. Some of those concerns may even be justified.

But it's hard to imagine a system in which Peggy Albedhady would fare worse than the one that she's in right now. --Stephen Drake

Texas: David Coronado Breathing on His Own, Off Ventilator

About 3 weeks ago, this blog reported on the case of young David Coronado, a 6-month-old infant allegedly beaten severely by at least one of his parents. Initially, a court-appointed guardian planned to petition for removal of life-support. The scheduled hearing to hear the petition was cancelled due to unspecified "new information." (We received detailed reports of developments thanks to attorney Jerri Ward, who agreed to represent the Texas NDY chapter in any hearings on this matter.)

There's some good news today regarding David Coronado, at least enough to give rise to cautious optimism. David is now breathing on his own - which means that his condition has improved, lessening the threat of moves to end his life by his court-appointed guardian.

From the Dallas Morning News:

Just last month, attorneys were considering whether to withdraw life support from 7-month-old David Coronado Jr., whose parents are accused of inflicting scars too numerous to count.

Now the brain-damaged Dallas boy is breathing on his own, and authorities are looking into who might eventually get custody of David should he survive.

"He is off life support at this time, but the prognosis is still uncertain," Michael Kotwal, an attorney representing Child Protective Services, told a judge Friday morning at a status hearing in Dallas County juvenile district court.

"We're asking for about 90 days to see exactly what's going to happen," Kotwal said. "And possibly if there's any – not that the child is ready to be moved or transferred to any kind of relative placement – but if the child's condition does improve and that becomes an option, we need some time to explore the possibilities."

The court-appointed guardian who originally petitioned for removal of life-support isn't quoted in this article, but she's mentioned:

On Jan. 12, the baby's court-appointed attorney, Holly Schreier, filed a motion asking a judge to allow doctors to remove David from life support. While noting his parents had not consented, she said it would be in his best interest.

But the next week, Schreier withdrew the motion, citing a change in the baby's condition. She did not return a call for comment Friday.

Who knows - perhaps Schreier still feels that dying would have been in David Coronado's best interests. It would be nice to think there might be a day in the future when David himself might be able to venture an opinion on that.

Meanwhile, there's another case sadly similar to David Coronado's. An infant, severely abused, and there are deliberations going on regarding just who gets to make decisions regarding that infant's life-support. We'll see what, if any, lessons have been learned from David Coronado. --Stephen Drake

Reality Vs. Myths of Pet Euthanasia (Part 2)

Last week, there was a small burst of the "we're kinder to animals than to humans" crap in the Australian press, courtesy of Peter Baume, a former Senator and an emeritus professor of Community Health at the University of New South Wales.

Baume was part of a panel discussion on euthanasia in Sydney, Australia. The panelists were covered and quoted in a way that revealed some pretty obvious bias on the part of the Sydney Morning Herald's Matt Buchanan. Here's a relevant example of the less-than-objective wording describing Baume's remarks:

Professor Peter Baume, speaking with quiet authority, said: "Dogs and horses have it better than us. We don't let them suffer but we do let humans suffer."

Just to make sure Baume's points were driven home, the Herald also pubished an essay by him in the same edition, titled "We do not let dogs and horses suffer as we allow humans to suffer." In the essay, he makes the same claim that we don't "allow" dogs and horses to suffer, implying that euthanasia of pets is always an act of relieving the animal's suffering - when in fact, many, if not most, killings of household pets have to do with the animal being old and harder to take care of, having a condition to expensive to treat, peeing indoors - or outside the litterbox, or maybe being more moody and prone to snapping once in awhile.

Baume wouldn't have to ask me for evidence of this, he could have asked fellow panelist Philip Nitschke, affectionately known in Australia as "Dr. Death." He's been leading the public charge for legalization of euthanasia in Australia. As the most prominent pro-euthanasia activist in Australia, Nitschke has been personally involved with most of the figures in the movement - including Max Bell, who comes close to filling the role of a "martyr" for the movement there.

For a short time 1n 1996, voluntary active euthanasia was legalized in Australia's Northern Territory. Max Bell, a taxi driver with stomach cancer, contacted Nitsche. Bell wanted to take advantage of the new law. Bell lived quite a distance from Nitsche and had to drive for 6 days to make the entire trip. Below, from an account by Nitschke, is a summary of Bell's preparation for his travel to the Northern Territory:

So he put his house on the market, had his two dogs put down, organised himself to drive to Darwin and set out.

Given the current context - from Peter Baume, Gifford-Jones, and even Thaddeus Mason Pope - perhaps we should examine that throw-away line from Nitschke regarding Max Bell and his dogs.

How do we evaluate the "mercy killing," "euthanasia," "putting to sleep," etc. of Max Bell's dogs? Was Bell the victim of some ghastly cosmic coincidence so that not only he, but his two dogs were suffering from terminal illnesses?

Nitschke doesn't tell us, but it doesn't seem likely, does it?

Here are some alternative explanations:

• Max Bell was too sick and pressed for time to find a home for his dogs;
• Max Bell couldn't find an alternative home for his dogs;
• Max Bell didn't try to find a home, believing that the dogs would be better of dead than having to live without him.

None of this means that Bell was cold or callous towards his dogs, but, like most people, had different beliefs about his commitments regarding animals than he might (presumably) have toward humans.

Personally, probably most of the people I've know have had their pets euthananized when they were neither terminally ill nor suffering. They often involved the increased expense and work that can accompany the chronic conditions aging animals develop. Cats that miss the litter box. Dogs that snap at owners when surprised. Expensive medical treatments. Failing hearing and eyesight. Animals, who live in the moment, don't spend time dwelling on the "good old days" when they could run like the wind and mourn the loss. That's a human characteristic - and something we like to project on our pets - so we can tell ourselves and our friends that we had them "put to sleep" because they suffered, avoiding the messier truth.

In the name of thoughtful debate and respect for critical thinking, can we put this issue to sleep? Because when individuals such as the ones addressed in this entry use this argument, only two explanations for the tactic come to mind:

• They're so entrenched into the myths surrounding pet euthanasia, they've set their critical thinking skills aside;
• Their critical thinking skills are indeed intact, but use this argument to exploit the lack of critical thinking in others.

Surely they can do better. --Stephen Drake

Reality Vs. Myths of Pet Euthanasia (Part 1)

Over the years, I've gotten thoroughly sick and tired of the repeated use of the myths surrounding pet euthanasia as an argument in favor of providing the same "service" for humans. The latest of these is from a column by Dr. Gifford-Jones (I guess "Dr." is his or her first name) published in the Edmonton Sun on February 7.

From the column:

Who was Debbie? If you missed her death notice, she was the world's oldest polar bear at Winnipeg's Assiniboine Park Zoo, who died at 41 years of age. Due to a number of strokes, zoo keepers decided Debbie had suffered enough and painlessly ended her life. But unlike the polar bear, a friend of mine recently experienced an agonizing death which has prompted this column.

I've often written that if I were allowed a committee to oversee my final hours, I'd want a veterinarian to be part of that group. I'm hoping they would treat me the same way as Debbie, or a loving pet. (emphasis added)

In the column, Gifford-Jones mentions being moved Sara McLachlan's video to raise funds for the Society for the Prevention of Cruelty to Animals. Unfortunately, the SPCA spot really does help Gifford-Jones make a case, because in its emphasis on "rescue," of abused animals, it avoids telling viewers the ultimate fate of the majority of the animals that end up in shelters. This open letter from a shelter manager paints a very different picture -- one that McLachlan would be hard-pressed to provide vocal background for:

Odds are your pet won't get adopted & how stressful do you think being in a shelter is? Well, let me tell you, your pet has 72 hours to find a new family from the moment you drop it off. Sometimes a little longer if the shelter isn't full and your dog manages to stay completely healthy. If it sniffles, it dies.

Please note that the author is referring to pets that have been abandoned to the shelters by their owners. There's every reason to believe that pets rescued from abuse have even lower chances of being adopted.

This is not a new phenomenon or limited to one particularly undestaffed and underfunded shelter. Last July, Dick Sobsey posted his own critique of the animal vs. human euthanasia argument in "Euthanasia, pets & people." Here's an excerpt, sharing some statistics on animal euthanasia:

• They are abandoned and unwanted. (According to the American Humane Association, “56% of dogs and 71% of cats that enter animal shelters are euthanized,” that was 2.7 million animals in the 1000 shelters who responded to their survey. The total number is likely at least three times as high because another 2500 shelters provided no data.
• They have a personality or behaviour problem. (According to the SPCA, this is the single most common reason for euthanizing dogs accounting for as much as 60% of cases, as many as 6,000,000 in a single year)
• Their caregivers are no longer willing or no longer able able to continue caring for them.
• They are considered to be unattractive.
• They have a treatable health condition but euthanasia is a cheaper alternative.
• They are getting old.
• They have physical traits considered to be undesirable for their breed.
• They have untreatable terminal diseases and are in pain.
• In many cases, there is no single, clear reason.

Please notice that very few of the animals are abandoned or killed because they have painful terminal illnesses.

Note to Gifford-Jones - we kill our pets because we can - the law only requires that we do it humanely and doesn't really care why we do it.

I can already hear objections from Gifford-Jones and people who have approached this argument in a similar fashion. Thaddeus Mason Pope, whose post on this column alerted me to it, might also object, since he agrees with Gifford-Jones.

After all, one might object, people who abandon their pets to shelters don't even care enough about their pets to take them to a vet to have them "put to sleep."

In order to answer those possible objections, I'll discuss at least one case of a person who did go to a vet to have his pets put down - a story taken from the annals of the euthanasia movement itself.

Then let's talk about what a great thing it is to treat humans in the same way we treat animals, even the ones we claim to love. --Stephen Drake

New Blog: "Water on the Brain - And Lots on My Mind"

Over the past month or so, I've been working on a launching a personal blog.

I suspect that I'll still tinker with the settings and formatting, but other than that, it's ready to roll out.

This blog will also be disability-oriented, but will cover (but not necessarily limited to) hydrocephalus, nonverbal learning disabilities, and neurodiversity.

This is something I've wanted to do for awhile now. For over 15 years, my life has intersected repeatedly with the neurodiversity community - even before the term "neurodiversity" was coined.

What to expect from the new blog:

• personal experience of someone in the "nld" club, and views that depart from professional accounts of the label;
• historical bits and pieces regarding hydrocephalus and other conditions - history regarding attempts to exterminate or to explain away unexpected competence in people with this and other conditions;
• stories of adventures and encounters with both "neurotypicals" (that would be the average reader of this blog) and people who share unusual neurological wiring;
• occasional rants when some advocacy group or other starts building its PR work by portraying some of us as "burdens," "monsters," or - in extreme but not rare cases - blaming us for our own murders;
• items, topics, etc. that I can't predict at the moment.

What not to expect:

• Me being inspirational;
• a lot of fussing about what a "correct diagnosis" means;
• medicalization of my life and experiences.

OK, if you've read all that and you're not sure just what the heck I'm going to be doing on this blog, then that probably makes two of us in all honesty. But I intend to have some fun doing it, and hopefully, some of you might find it fun or interesting as well.

Check out: Water on the Brain - And Lots on My Mind

I look forward to seeing some of you both here and there. --Stephen Drake

Pennsylvania: Important Guardianship Ruling -- Strict, Narrow Limits for Refusing Life-Sustaining Treatment

Mark Murphy, Legal Director of the Disability Rights Network of Pennsylvania (DRN), emailed a summary of an important Superior Court decision that lays out a very stringent set of criteria that have to be met in order for a guardian to order refusal of treatment for an incapacitated person who isn't at the end stage of a serious illness or permanently unconscious. The summary is available at this link, but is reproduced below, with permission.

Set forth below is a summary of an important new decision by the Pennsylvania Superior Court regarding whether, and under what circumstances, a guardian has the authority to refuse treatment for an incapacitated person who does not have an end-stage medical condition or is permanently unconscious. In brief, the court held as follows:

1. A court order that appoints a person as a plenary guardian does not authorize that person to refuse life-sustaining treatment for incapacitated persons who do not have end-stage medical conditions or who are not permanently unconscious. In other words, a guardianship order by itself does not authorize the guardian to make such a decision.

2. A guardian must secure a special court order to allow him to refuse life-sustaining treatment for an incapacitated person who does not have an end-stage medical condition or who is not permanently unconscious. The guardian has an “extraordinary burden” to prove by clear and convincing evidence that death would be in the incapacitated person’s best interests, i.e., that extending life would be inhumane under the circumstances. The guardian must present specific medical evidence about the incapacitated person’s diagnosis, prognosis, pain, etc. and, if at all possible, evidence concerning the incapacitated person’s wishes either prior to or during the treatment. The individual’s cognitive disability should generally not be considered.

In sum, this decision will make it extremely difficult, if not impossible, for a guardian to secure an order that would allow him to refuse life-sustaining treatment when an incapacitated person does not have an end-stage medical condition or is not permanently unconscious.

SUMMARY

D.L.H., an individual with mental retardation and a resident of Ebensburg Center, was admitted to the hospital with aspiration pneumonia. At the time, he did not have any terminal illness and was not in a permanent vegetative state. At the hospital, the doctors determined that he needed a ventilator to assist him to breathe. His parents, who had previously been appointed as his plenary guardians, objected and sought to decline treatment. The hospital refused to obey the guardians’ direction and placed D.L.H. on a ventilator. He used the ventilator for three weeks, at which time the pneumonia subsided to the point where it was no longer required and he could breathe on his own.

Prior to his recovery, the parents filed a petition that sought permission to refuse treatment, arguing that they should have the same powers to refuse treatment as a “health care agent” designated by a competent individual under an advance health care directive under Act 2006-169 (Act 169). DPW objected to the petition. The trial court refused the guardians’ petition, and they appealed to Superior Court.

On appeal, the Superior Court initially decided that, although the case was technically moot since D.L.H had improved enough that the ventilator was not necessary, it raised an issue that was capable of repetition yet evading review and presented important public policy questions. Accordingly, the court decided to address the merits.

Initially, the Court rejected the guardians’ assertion that their status as plenary guardians was itself sufficient to give them authority to refuse any treatment for D.L.H. The Court compared the guardianship statute to Act 169’s provisions regarding health care agents, noting that the former has nothing specific concerning when a guardian can make the type of decisions requested in this case while the latter expressly authorizes health care agents to refuse medical treatment if that is consistent with the instructions in a health care advance directive. The Court also distinguished guardians from agents under common law, finding that agents are subject to the power of the principal and are obligated to carry out the principal’s expressed wishes. In contrast, guardians act as officers of the court and are subject to the court’s control. Moreover, while guardians are charged with acting in the best interests of the individual, they are not required to honor their wards’ stated wishes. The Court further noted that guardianship creates an opportunity for abuse and that allowing guardians – merely based on their appointment as plenary guardians – to refuse life-sustaining treatment would be problematic because any judicial review would come too late. Accordingly, the Court held that the Legislature vested authority only in health care agents appointed under advance health care directives to object to life sustaining medical procedures when the principal does not have an end-stage medical condition or is not permanently unconscious and that the Legislature did not vest similar authority in guardians – even plenary guardians.

The Court also rejected the guardians’ alternative argument that, under the facts of the case, the trial court should have granted their petition to authorize them to refuse treatment on behalf of D.L.H. The Court assumed (without deciding) that a court could grant a guardian authority to decline medical treatment for someone who does not have an end-stage medical condition or is not permanently unconscious. However, the Court noted that such a decision would be even more compelling that sterilization, which also requires court approval before a guardian can authorize the procedure. Accordingly, the Court held that guardians who seek to decline life-sustaining treatment must petition the court and prove by clear and convincing evidence that refusing such treatment (i.e., causing the incapacitated person’s death) would be in the incapacitated person’s best interest.

The Court discussed at length the type of proof that would be required. The Court emphasized that the guardian in such a petition would have an “ extraordinary burden” to prove that death is in the best interest of the incapacitated person. In making the decision, a court must “consider only the best interest of the incompetent – not the interest or convenience of the parents, guardians or society in general.” “[A]t minimum,” the guardian “must provide reliable medical expert testimony documenting the incompetent’s severe, permanent medical condition (or severe, permanent medical condition with progressive features) and current state of physical/psychological deterioration and pain.” It would also be “wise (although not absolutely necessary depending on the severity of the medical condition) for a guardian to adduce additional evidence of the incompetent’s expressions, either through demeanor or conduct, which could reasonably be interpreted as evincing the incompetent’s wants, needs, and/or feelings during the course of medical treatment.”

In the absence of any evidence of an incompetent’s expressions during or prior to treatment, the quality of the medical evidence should be of such a character that a court is definitively convinced that the benefits of prolonging life, as a result of medical treatment, is markedly outweighed by the incurable nature of the incompetent’s medical condition and the consistent, recurring degree of pain. That is, based upon medical facts, diagnosis and prognosis of the particular case, a court should be able to conclude, without hesitation, that extending life would amount to an inhumane act that runs so contrary to basic notations of fundamental decency that death furthers the best interest of the incompetent. (citation omitted) Otherwise, in assessing the benefits of a prolonged life, a court should not place any emphasis on the fact that a life-long incompetent, prior to receiving medical treatment, suffers from a mental disability or other cognitive deficiency, because this is the incompetent’s natural state of being.
(citation omitted). A court may, however, consider the incompetent’s cognitive abilities as a starting point to analyze whether the current medical condition or proposed medical treatment has resulted, or would result, in a reduction in those abilities.

The Court, however, concluded that D.L.H.’s guardians failed to present any evidence that the refusal of mechanical ventilation would further D.L.H.’s best interests. They did not provide evidence that the aspiration pneumonia was a severe, permanent medical condition, that he suffered a remarkable amount of pain due to the ventilator, that he expressed any objection to the ventilator treatment, or that he ever expressed any intent to decline life preserving medical treatment through a written document or clear oral declaration.

Given that he recovered within three weeks, “the evidence was clearly inadequate” to show that refusing the treatment was in D.L.H.’s best interests.

mjm

Full court decision (in pdf format) can be found here.

Thanks for Judy Gran of the Public Interest Law Center of Philadelphia (PILCOP) for sharing this news with me and many others outside of Pennsylvania. --Stephen Drake

Italy: Eluana Englaro is Dead - Questions Remain

A couple of people have contacted me to point out the Eluana Englaro tragedy in Italy - a tragedy that has played out over the past few weeks. Englaro, who died yesterday, was at a center of a life-and-death dispute that involved her father, the Italian courts, Italian legislators, Italy's president and prime minister, and the Vatican.

Englaro has been described in the media reports as being in a vegetative state for 17 years. Her parents fought in court to have her feeding tube removed - and won. Legislative efforts were underway to prohibit the dehydration death of Englaro when she died after only 4 days after having her feeding tube removed.

Instead of providing a bunch of different links, I'd suggest that anyone who wants to know more can perform a search on "Eluana Englaro" and come up with hundreds of articles to choose from for more information.

Having said that, however, one news agency deserves special mention for outstandingly inaccurate and outrageous coverage of the Englaro tragedy.

Flavia Krause-Jackson and Steve Scherer of Bloomberg News both deserve "credit" (discredit would be more accurate) for filing news stories that inaccurately referred to Englaro as "brain-dead" and "force-fed."

To be fair, it's possible that maybe Krause-Jackson and Scherer weren't personally responsible for the repeated use of the term "brain-dead" in article headlines.

However, they clearly chose to use the term "force-fed" to describe the delivery of nutritional supplements to Englaro through a feeding tube.

Wikipedia describes "force-feeding" this way:

Force-feeding, which in some circumstances is also called gavage, is the practice of feeding a person or an animal against their will.

The image that the term "force-feeding" conjures is a violent act inflicted against an unwilling and resisting "victim."

How can a person described as permanently unconscious resist? How can she be "force-fed?"

Answer - she can't. The use of the term is the work of dramatists - it's certainly not journalism.

Speaking of answers, many would like an explanation for the unexpectedly swift death of Englaro - dehydration generally takes much longer than four days to kill a person. --Stephen Drake

Dick Sobsey: Blog Entry on Recent Studies Re: Abuse and Disability

This will probably be of interest to readers - at least some of our readers.

Dick Sobsey's latest post on ICAD concerns recent research on Abuse & Disability:

This post lists 15 studies on the relationship between abuse and disability that were published in 2008 and 2009. A brief description of each study is reported.

Read the complete entry at Violence & Disability: 15 Recent Studies.

Germany: Oops! Man Allegedly Kills Friend Who Was Misdiagnosed as Terminally Ill

In case anyone wonders what the unintended consequences of lowered criminal penalties for "mercy killings" or "compassionate homicides" can look like, one only needs to look to Germany. (This is aside from the obviously discrimatory standard in officially labeling the murders of old, ill and disabled people as less serious crimes than the murders of nondisabled ones)

In 2002, the uproar and outrage over the murder and cannibalization of Bernd Jürgen Brandes by Armin Meiwes was increased when it was announced that Meiwes would be charged with manslaughter instead of murder. The reason for this is that Brandes had consented to his own murder, a situation that triggered a lesser charge. The outrage, of course, was that the use of the charge against Meiwes was a misuse of the law, which was meant to apply to the killing of old, ill and disabled people who wanted to be killed. Eventually, German authorities found a rationale to retry Meiwes for murder instead of manslaughter and he received a life sentence. The whole saga is chronicled in the Wikipedia entry on Meiwes.

The latest case that will no doubt spark some degree of misdirected outrage - or maybe just discomfort - is the alleged murder of a man who - because of a misdiagnosis - believed he was terminally ill.

Here's the story:

Bochum man demands mercy killing over false cancer diagnosis

Published: 6 Feb 09 19:40 CET
Online: http://www.thelocal.de/society/20090206-17287.html

A Bochum man who thought he was terminally ill with cancer convinced a friend to stab him to death but authorities later tragically confirmed he was not sick at all, according to daily Bild.

Police discovered the body of the man, identified as 40-year-old Achim K., in his apartment at his parents’ house on Thursday morning after his alleged killer called the fire brigade regarding the incident. Following his arrest, the 32-year-old suspect indicated his friend had asked him to commit the murder, Bild reported on Friday.

The Public Attorney’s Office in Bochum has collected six witness accounts confirming the suspect’s statement, although a suicide note has yet to be found. Several witnesses – including the parents of the deceased – confirmed that Achim K. had spoken of being seriously ill with cancer in the weeks leading up to the event.

Toxicology tests should reveal in coming weeks whether the man was completely sober at the time of the event. Should the suspect be convicted of a mercy killing, he could face anywhere from six months to five years in jail, according to Bild .

The Local (news@thelocal.de)

It's hard to predict the outcome here. The fact that the murder was done through a multiple stabbing tends to make people less sympathetic to murderers and less inclined to think "mercy" was a motive. OTOH, the German public and courts could just shrug and decide that an honest belief that someone is dying and suffering is a good enough reason to evade a murder charge and qualify for a lesser one. --Stephen Drake

Two Highly Recommended Blog Reads Today

Part of my daily routine involves checking news and blogs for material relevant to NDY issues. Most often I excerpt and link to relevant pieces - critiquing ones that kind of demand a response of some kind. Then there are those happy times I find bloggers who have written some things that are so on-target to NDY issues, all I can do is post a brief excerpt, provide a link and tell people to go read them.

This morning, I found two. In order of discovery, then:

Dick Sobsey has written a really good analysis of the concepts of "mercy killing" and the proposed statutes of alleged "compassionate homicides":

5 February 2009 - The notion of mercy killing or compassionate homicide periodically reappears in the news, editorials, or legislative agendae. For example, here in Canada in 1994, a Senate Committee recommended legislation that would create a third category of murder, classified as “compassionate homicide.” This new category would apply to cases where an individual killed another person when the motivation was compassion rather than malice. In other words, it would differ from other forms of murder, not in the actions of the killer or the outcome of those actions. It would differ from other murders only in the motivation behind the action and by the fact that there would be a lesser penalty, with no minimum sentence. Some have even suggested that compassionate homicide should not be considered a crime at all.

There are many problems related to this idea, and I am only going to discuss two closely related ones here: (1) Criminalizing motivation, and (2) equal protection of the law.

Please read the rest of No Mercy - In My Opinion

At the same time, William Peace at Bad Cripple has also written a very thoughtful essay on the intersections of disability, illness and assisted suicide:

It is frigid in New York. When I woke up it was 4 f. and I measure this sort of cold by the creeks and cranks that materialize in my wheelchair when the temperature dips near zero. Since it is too cold to spend much time outdoors I have been doing a lot of reading. Last night I finished Edwin Black's searing War Against the Weak, one of the best books I have ever read about the Eugenics movement in the United States. This morning I read too much about California's Terminal Patients' Right to Know End-of-Life Options Act that was signed into law recently. My reading choices have made me cranky. The assisted death movement has gained tremendous momentum in the last year and I am deeply worried about the implications of recent legal changes in Washington, Montana and California. When I expressed these reservations to a friend they thought I was being reactionary. "Come on", this person said, "you live in the burbs and have nothing to worry about. Hospitals and doctors would never treat you poorly." This assessment is wrong and indicates why the assisted suicide movement has been so successful.

Please read the rest of Framing the Debate: Assisted Suicide and Disability

BTW, I've referred readers to both of these blogs before. I've bookmarked them both and it might not be a bad idea for others to do the same. --Stephen Drake

Barbara Coombs-Lee and "Compassion" Join "Last Goodnights" Book Promotion

Yesterday, I wrote about Good Morning America's fawning rollout of John West and his memoir, "The Last Goodnights." In the book, he claims to have facilitated/aided the suicides of both his father and mother about ten years ago.

It turns out that West's lone publicity tour is looking more like a bandwagon. Today, I found out that the site "medicalnewstoday.com" published an "article" that looks an awful lot like a press release from Compassion & Choices, the largest U.S. organization devoted to promoting legalization of assisted suicide.

Given the claims of Mr. West regarding his parents' deaths, there are some "interesting" statements by C & C's President, Barbara Coombs-Lee:

"Society must address the need for expanded end of life choice," said Compassion & Choices President Barbara Coombs Lee. "No family member should have to risk prosecution, as Mr. West has. Aid in dying should be the final option on a continuum of legal medical decisions. Failing to legalize and regulate aid in dying only encourages an unsafe, underground practice. State legislatures should step up to their responsibility and meet the needs of their citizens. This family's difficult situation arises directly from California's failure to enact a Death with Dignity law."

"As a wealthy, resourceful lawyer Mr. West was able to obtain potent medication and help his parents die well. Most families are not so lucky, and the law in 47 states discriminates against them. Legalization offers equal access and the protection of skilled clinicians and an open procedure. Only an open, transparent and legal practice gives people the equal opportunity to explore all options and die on their own terms," said Lee.

Let's unpack the claims here. Coombs-Lee is implying that the laws in Oregon and the recently passed Washington referendum would have prevented the "need" for the private suicides claimed in West's memoir.

Again, if what West has written is true, it's possible his father could have gone to a physician in Oregon and obtained his own prescription, legally.

But West also claims to have assisted in the suicide of his mother, who had been recently diagnosed with alzheimer's. His mother would be ineligible for a legal prescription in Oregon and would be under the statute that will be in effect in Washington State?

I guess there are several ways to interpret Coombs-Lee's statements here. She could simply be deliberately misleading a largely misinformed public and press about the actual impact of an Oregon-type law for people such as West's mother. Maybe she's signalling that doctors aren't really that rigourous about adhering to the "strict guidelines" for eligibility.

Or maybe she's signalling the next step in assisted suicide advocacy by her organization - opening up "eligibility" for lethal prescriptions to a wider spectrum of old, ill and disabled people.

Come to think of it, maybe all three explanations are correct. --Stephen Drake

News on Minna Mettinen-Kekalainen: Home Care Resumed, But Problems Remain

Like many bloggers/advocates/activists, I have been awaiting word that Minna Mettinen-Kekalainen's home care had actually resumed. The last news story about her situation was published when the first day of resumed care was still several days away.

Northern Life.ca has an update on Minna, a mixed bag of good news and progress still to be made:

A Sudbury woman facing a losing battle with Lou Gehrig's Disease started receiving care once again Feb. 2 from the North East Community Care Access Centre (CCAC), but it was not the level of care she had been expecting.

In mid-November, Minna Mettinen-Kekalainen stopped receiving care from the local Community Care Access Centre after she refused to sign a contract that would prevent her from contacting the proper authorities if she wasn't being given proper care.

When her care was reinstated Mettinen-Kekalainen had been expecting a nurse to provide care in the morning and afternoon. However, a nurse didn't come until the evening.

She has written a letter to the CCAC about this. A representative of the CCAC said the organization cannot discuss issues with individual clients because of privacy legislation.

The print story has a link to longer video coverage, which can be viewed here.

Among other things (and I am paraphrasing/summarizing here), the nurse that arrived seemed to be doing the best that she could, but was operating from incomplete/incorrect medical orders. And the nurse, of course, is limited to what she can do - according to the instructions/orders she's been given.

Hopefully, this is something that can be worked out fairly simply. Getting medical instructions corrected can't be that big a deal - can it? Let's hope not, anyway. --Stephen Drake

ABC's GMA Helps Author Promote Memoir and Assisted Suicide

ABC's Good Morning America appears to have pulled out all the stops in helping attorney John West promote his recently-published book, "The Last Goodnights." The book is a memoir detailing how he "assisted" the suicides of both his parents about ten years ago.

Before I get into the specifics of the coverage, I'd like to offer several caveats in regard to memoirs. First, there have been several high-profile memoirs over the past few years that were revealed to contain significant fabrications - events that never happened, but that made better reading. A Million Little Pieces, by James Frey, is probable the most notorious example. "Angel at the Fence: The True Story of a Love That Survived" by Herman Rosenblat was another memoir whose central plot point was a total fabrication - making national news last December.

So it's probably wise to be a little cautious in accepting the total veracity of any memoir that is as totally unverifiable as John West's account of his role in his parents' deaths. The only people who could verify his account - his mother and father - are dead. I doubt that it would be possible to verify they died through anything other than natural means, even with exhumation and autopsies. Ten years is a long time.

Today, GMA has done its best to make West's memoir financially rewarding. The site has video, a written story and a book excerpt. Makes me wonder if ABC is already in negotiation for film rights.

From the story:

For attorney and author John West, his parents were lifelong sources of comfort, wisdom and pride.

But West has been keeping a 10-year-old secret about his parents from everyone, including his two sisters, which he is revealing for the first time in a memoir called "The Last Goodnights."

West helped his terminally ill parents commit suicide, a crime in the state of California, where the deaths took place. In revealing his actions, West acknowledges he could face prosecution.

"I'm hopeful that that won't occur, but there is the possibility," West said in an interview that aired on "Good Morning America" today. "The statute of limitations for assisted suicide has run [out] but the prosecutors can charge you with just about anything. There is no statute of limitation for murder, for manslaughter, probably certain drug offenses."

Nice drama, there, but as I noted before, it's doubtful that anyone could prove these deaths were suicides or homicides at this stage, even if law enforcement was inclined to do more than yawn about the allegations he's leveled against himself. Michael Phelps stands a far more significant chance of dealing with the wrong end of law enforcement than West does.

According to the book excerpt on the site, Wells' relationship with his father was strained, due to his father's long-term philandering, culminating with introducing an illegitimate son at gatherings of friends and family over the last two years or so of his life. Wells' father had been diagnosed with cancer - according to Wells it was in an advanced state and he'd been given a prognosis of less than six months to live. Neither the story nor the excerpt make clear the nature or the extent of the "help" he rendered his father. According to Wells, the alleged suicide has been kept a secret - even from Wells' mother.

In the same timeframe, Wells' mother had been diagnosed with alzheimers. Admittedly depressed over the loss of her husband and the road ahead of her, she asked Wells for the same "assistance" given the father - assistance she knew nothing about.

Here's one place the GMA brainiacs obviously glossed over the obvious. As someone recently diagnosed with alzheimer's, Wells' mother's death was years away - far from a conventional definition of "terminally ill."

They blow it here, too:

Assisted suicide, even if intended as an act of mercy, is still considered a crime in most states. Oregon and Washington have legalized it, and a Montana judge's decision to do so is under appeal.

But even in those states, physicians, not family members, are authorized to help carry out the act, by prescribing a dose of lethal pills to terminally ill patients who have been counseled and who have, in some cases, undergone psychiatric evaluations.

First, Oregon is the only state in which legal assisted suicides have actually occurred. Second, as readers of this blog know, psychiatric evaluations in Oregon have become nonexistent and a major study indicates that people with clinical depression have been given lethal doses.

Finally, West gives this as the motivation for writing his book (nothing about money, notoriety or speaking gigs, oddly enough):

West said he wrote "The Last Goodnights" hoping that it will spur debate about assisted suicide laws.

"I'm saying I don't want you to ever have to do what I did and don't break the law but change the law," he said. "The law needs to be changed."

Again, the ABC robots fail to challenge an obvious flaw in his logic here. His mother, even by his own account, wouldn't have been "eligible" for assisted suicide in either Oregon or Washington. What will happen in Montana is anyone's guess. Maybe the law West is advocating for is the one that's been introduced in New Hampshire, that defines "terminally ill" so widely that his mother or anyone else with a serious disability or condition would "qualify" for assistance in offing themselves.

Maybe they'll clarify some of this when ABC does the made-for-TV-movie. --Stephen Drake

New Mobility: NDY quoted in story on U.K. Airing of Ewert Suicide

Back in December, Roxanne Furlong called me. Roxanne is the Associate Editor of New Mobility, a magazine focused on the interests of wheelchair users. It covers the gamut of disability concerns - the arts, lifestyle, leisure, politics and advocacy.

Roxanne called me for comments on the airing of a documentary that featured the suicide and actual death of a "suicide tourist" - the name given to U.K. citizens who travel to Switzerland for the express purpose of killing themselves, using the somewhat expensive services of the organization Dignitas.

The short article, unavailable online, summarizes the situation concisely and also includes my own quotes on the issue. This is from the February 2009 issue of New Mobility, page 14:

Assisted Suicide Aired on Television

Britain's Sky Real Lives broadcast station took reality TV to new lows by airing "Right to Die: The Suicide Tourist," the assisted suicide of Craig Ewert, from England. The wife of the retired professor, who had ALS, told The Times that her husband wanted "to show that a terminal illness does not have to result in a painful death."

"Only individuals who are old, ill and disabled get encouragement, affirmation, and 'assistance' in killing themselves when they express such feelings," says Stephen Drake of Not Dead Yet. "If suicide is really about autonomy, then maybe we shouldn't interfere with anyone who is serious about killing themselves. Coverage such as this establishes a double standard - in which the lives of old, ill and disabled people are held to be of less value than the lives of younger, healthier, nondisabled individuals. That's not autonomy, but something somewhat uglier."

My thanks to Roxanne and New Mobility for keeping readers of the magazine informed of the latest developments in the euthanasia/assisted suicide debates. --Stephen Drake

More on Brignell Column From William Peace at Bad Cripple

Just today, William Peace at Bad Cripple wrote his own thoughts in regard to Victoria Brignell's column on assisted suicide, which I responded to yesterday.

Peace takes on a different part of the essay by Brignell and provides a long analysis of some issues that triggered his own thought processes. Here's the introduction:

What I want to address is the questions Brignell posed with regard to assisted suicide and social change. Brignell points out that social practices evolve quickly and wonders "Could we reach a point where it is regarded as normal for a tetraplegic [quadriplegia] person to commit suicide? And as the population ages and pressure on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget? It seems unlikely such a dystopian vision will turn into reality in the near future". Brignell's assessment may be correct in the UK but I think we have already arrived at this dystopian vision in the United States and elsewhere.

That's just the intro. There's a lot more and it's well worth anyone's time to read - anyone who cares about these topics. --Stephen Drake

U.K.: Brignell Column on Disability and Assisted Suicide Misses Several Points

Last week, New Statesman, a U.K. based magazine covering current affairs, published an essay by disability columnist Victoria Brignell. Unfortunately, "Assisted Death," indicates she shares a lot of confusion with the very public she's trying to educate about disability rights and "assisted death:"

In recent years the media spotlight has fallen on a number of disabled individuals who have expressed a wish for an assisted death - people like Diane Pretty, Debbie Purdy and Craig Ewart (whose death provoked controversy when it was shown on national television). What the Daniel James differs is that he was not terminally ill. He was only 23 and if he had not killed himself, he might have lived a normal lifespan.

Daniel chose to take that deadly concoction of chemicals not because he wanted to avoid a long, painful and distressing death but because he simply didn't want to carry on living.

It's vital, when discussing assisted death, that we distinguish between those disabled people who are terminally ill and those whose disability is not life-threatening. The ethics involved are very different.

Brignell seems to think there's a clear bright line here that should be obvious to everyone and that no on is trying to erase, if it actually exists. Perhaps it would be clearer to her if she had the benefit of our experience with Jack Kevorkian in the U.S. Several studies have documented that only a minority of the people who died at his hands were terminally ill. In spite of that documentation, there is a new wave of surprise on the parts of the public and the press when the information surfaces in the news again. In fact, most of Kevorkian's body count consisted of people with chronic conditions and disabilities - and the nonterminal "clients" were more likely to be women. The muted - to put it kindly - tone of public outrage in reaction to the facilitation of Daniel James's suicide by his own parents means that there is no real cause for optimism for more accurate and thoughtful analyses across the pond.

As we've pointed out before, the worldwide euthanasia movement doesn't have an interest in limiting "eligibility" for euthanasia or assisted suicide to people who are "terminally ill," but typically introduce legislation as a "door-opening" strategy. In fact, here in the U.S. the latest move - in New Hampshire - is an attempt to redefine "terminal condition" to encompass any "incurable" condition that will result in "premature death."

According to the Foundation for Spinal Cord Injury Prevention, Care & Cure, having any degree of tetraplegia does, in fact, reduce one's life-expectancy (see chart below):

Life Expectancy for Persons who survive at least 1 year post-injury

Age at Injury	No SCl	Motor Functional at any Level	Para	Low Tetra (C5-C8)	High Tetra (C1-C4)	Ventilator Dependent at any Level
20 yrs	58.4	53.3	46.3	41.7	37.9	23.3
40 yrs	39.5	34.8	28.6	24.7	21.6	11.1
60 yrs	22.2	18.3	13.5	10.8	8.8	3.1

Brignell's biggest failure in analysis occurs here, IMO:

An able-bodied person can take their own life without anyone else's assistance but it is almost physically impossible for someone who is completely paralysed to die by suicide. If a tetraplegic person wants to end their life and society denies that person an assisted death then society is forcing that disabled person to go on living against their will.

This seems to undermine a disabled person's independence - their right to make choices for themselves. So according to this argument, the professionals who helped Daniel to die were correct in supporting his right to self-determination. As Daniel James's mother wrote so movingly: "Our son could not have been more loved... This was his right as a human being. Nobody but nobody should judge him or anyone else."

These two paragraphs buy into some of the biggest lies/myths perpetrated by the euthanasia movement and others who argue for a "right" for assistance in suicides for people with disabilities.

The claim that "it is almost physically impossible for someone who is completely paralysed to die by suicide" is false. Several disability activists with quadriplegia have told me they can come up with a long list of ways they can commit suicide without assistance - and have shared some of them.

I won't share them here. This isn't a "how to do it" site.

What supporters of the so-called "right" of Daniel James and others with physical disabilities are calling for is access to a specific means to commit suicide. In fact, the controlled substances used by Dignitas or used in other instances of euthanasia or assisted suicide aren't available to the general public - except through a licensed medical professional.

So this isn't about the right to commit suicide, but commit it in a certain way - a way that is unavailable to the vast majority of nondisabled people.

I'll digress for a moment to talk about the choices of two people who committed suicide by different means. Gonzo journalist Hunter S. Thompson took his own life using a gun in 2005. Thompson was well-known for his ability to obtain drugs - without a doctor - that are generally unavailable to more law-abiding citizens. A gun, though, was what he chose as a means of suicide. Daniel F. Gunther, one of the "Ashley X" physicians, committed suicide by asphyxiation in his garage. As a physician, he could presumably have used controlled substances to end his life.

This points up the largely ignored importance of talking about what the debate about "assisted suicide" is really about. Is it about access to suicide or access to a certain means to that end? (no pun intended)

Suppose, for example, that a person with quadriplegia wanted to end her life by hanging. Does that mean she is entitled to have someone set up the rope and noose, put it around her neck, and then strangle her with it?

Suppose someone with tetraplegia wants to use a gun. Is he entitled to have a chosen "friend" hold a gun to his head and pull the trigger.

Sound absurd? Not if the assisted suicide debate is really about suicide itself.

But it's not about suicide, is it? It's not about autonomy, either. If it was about autonomy, it assistance would be offered to anyone who wanted to commit suicide by whatever means he or she chose.

Maybe we should all try to figure out exactly what this debate is about. It sure doesn't look like autonomy from where I sit.

But the first step to figuring out the debate is to reject some of the absurd slogans, mantras, myths and outright lies coming out of the euthanasia proponents - and reframe these issues in our own way and on our own terms. --Stephen Drake