The Song That Is Sung at Final Exit Network Meetings (Or Should Be)

About two weeks ago, an interview with a member of the group "Fear Factory" included the news that the group's new album includes a cut titled "Final Exit." Below is an excerpt from the interview with group member Burton Bell:

KNAC.COM: "Final Exit" is a suitably grim note to end the album on, is that Jack Kevorkian's voice in the talking snippets?

BELL: That's actually Derek Humphry, the writer of the book Final Exit and a member of the Final Exit Network. It's some dialogue from his Web site. The statement for "Final Exit," it's not a negative comment on the organization, it's a statement about society and how it's gotten to the point in the world of medicine where instead of trying to find cures they're just not helping people at all. And this is a resort people have to take, assisted suicide to end their suffering.

Final exit is supposed to be an answer for people to relieve the pain. The organization is there to help people who are in extreme pain, debilitating pain, pain that they cannot bear to live with and that there is no cure for. To quote Chris Rock, "there's no money in the cure." The money's in letting people linger, not matter how bad their quality of life has gotten. The message of the Final Exit Network is "we will help you. You have a choice."

Well, no one ever said that an ability to engage in critical thinking - or even coherent thinking - was a quality necessary for success in the entertainment field.  No one trying to find cures?  Evidently Bell has managed to miss the Labor Day Telethon during his lifetime - probably hasn't heard of "Autism Speaks" either.  He also doesn't seem to know a lot about the Final Exit Network  (FEN) itself and just how broad the the group's eligibility criteria is in terms of who it will "help."

But that isn't really the song I want to talk about.  Since the FEN surfaced, with its helium-based suicide guidance and assistance, I have believed they already had an organizational song. 

OK, maybe not - but I found the perfect song for a bunch of whacky, goofy, "special" folks like the ones who make up the membership of the FEN.  This song would be perfect - and would require the FEN members to sing while taking tokes off of their own helium tanks - led by Derek Humphry, looking something like the hookah-toking caterpillar in "Alice in Wonderland."  (I'm not usually this visual - but the cinematic picture I get of this is like something out of one of the movies by Mel Brooks.)

So I'd like to share my selection for the theme song for the whimsical folks at FEN, with a link to an mp3 recording of the song "Helium" by John Forster:

Click to access mp3 of "Helium."

For those who cannot access the mp3 for whatever reason, here are the lyrics from Forster's website:

Cocaine Bill & Morphine Sue--
Get out the way. Here comes Helium Hugh.
Helium [inhale]...runnin' round my brain.

A ten buck bottle on the street
Gets you about a hundred fifty cubic feet
Of helium...running round my brain.

I'm all through with blow and boo,
Bourbon, cigarettes and airplane glue.
I no longer waste my breath
Crying "Give me Librium or Give me Meth."

Breathe it in/ Up ya go.
Nice and slow/ When you're done
And down ya come/ Cause helium
Is really um-believable stuff.

Float in space, your mind's a blank.
The only pressure is in the tank.
Nothing can upset this tranquil mood.

[Break: Kazoo on helium]

Father James says all the monks
Got helium hoses in their bunks.
"Et com spiritu tuo helium"

Crack is bad and smack is bad
And so is LSD.
And I vaguely recall that pot
Does...something bad to your memory.

So when I die, Oh please don't skinp.
Bury my body in the Goodyear blimp
I got to got to have that helium...runnin' round my brain.

Yeah, it's a little sick - but let's get real.  What's really sick is a bunch of folks who devote themselves to arranging and managing the suicides of total strangers. 

I believe in treating them with all the respect and dignity they deserve.  ;-)  --Stephen Drake

NBC Dateline: "A Matter Of Time" (Ruben Navarro)

When checking the blog stats this morning, I noticed a huge jump in hits yesterday.  It took me a bit to figure out why, since it's been a few days since I've posted anything.

It turns out that NBC Dateline broadcast a story on the death of Ruben Navarro and the trial of Dr. Hootan Roozrokh last night.  A bunch of folks found this blog using their search engines.  (Ruben Navarro died after an aborted attempt at Donation after Cardiac Death - DCD - in a nightmarish scenario that has been described in this blog and elsewhere.)

The story contains some important updates and leaves many important questions just hanging.

First, though, it's probably most important to share the news that not only was Dr. Roozrokh exonerated by a jury, but Ruben Navarro's mother now sees him as someone who did the best he could in a bad situation.

From the transcript to "A Matter of Time":

After the trial, the California medical board, which had also launched an investigation of Dr. Roozrokh, quietly withdrew it. And Rosa withdrew her lawsuit. And this is rare.  Her lawyer attached a letter of apology: "We believe you acted ethically and in good faith society will be best served if you are allowed to apply... your talents as a transplant surgeon and continue saving lives. "

That doesn't mean that what happened with Ruben Navarro was acceptable or that there aren't important questions left hanging that will now never be answered:

• Rosa Navarro claimed that she was told that Ruben could only be on a ventilator for five days and then would be taken off; Who told her this?  Was it hospital policy?  No hospital representative in coverage has confirmed or denied this claim.
• What happened to the medical chart containing the minute by minute recording of Ruben Navarro's vital signs that night?  Why was nurse Carla Albright, the transplant coordinator who had a heavy hand in this mess, never called as a witness?
• Was Ruben Navarro really dying?  Dr. Roozrokh himself noted how hard his body rallied to continue to live even after ventilator removal and the administration of morphine and ativan.  Was Rosa Navarro misled in some way?

It's frustrating that as I read the transcript over, almost everyone involved in the story seems more concerned with this story's negative impact on organ donation than the particulars of Ruben Navarro's death.  It would be nice to see some indication that some of the professionals felt a little worse about that.  --Stephen Drake

The Guardian (UK) - Charlotte Raven: Should I take my own life?

Honestly, a lot of what I get to read for my work is pretty dreary stuff.  Disabled people who want to kill themselves, family members who want to kill incapacitated "loved ones," and elderly guys getting a pass from the legal system when they kill their ill wives are just some of the fun things that come through my news feed in the course of a month or particularly bad week.

Once in awhile, I'm pleasantly surprised - astonished really - at a breath of fresh air in what often seems like a steady tide of "better dead" than disabled propaganda coming at me through various media.

Last week, The Guardian published one of those blasts of fresh air.

Below are a few excerpts from "Should I take my own life?" by Guardian writer Charlotte Raven:

In 2006, 18 months after the birth of my baby, I tested positive for Huntington's disease. The nurse who delivered the news hugged me consolingly and left me with my husband and a mug of sweet tea to cry. In the days that followed, I began to realise why so few of the people at risk of inheriting this ­incurable neurodegenerative ­disorder chose to find out.

This incuriosity had seemed to me irresponsible. Having discovered the previous year that my ­father had the disease, I had been offered a test that would tell me for certain if I, too, had i­nherited the gene. In the months of debate I'd had with my husband about whether to take the test, I'd always been on the side of enlightenment. I calculated that the trauma of finding out would be offset by the satisfaction of being able to make informed decisions about my life.

I thought taking the test would be like finding out the weather before you go on holiday. If the outlook was gloomy, at least I'd know what to pack. In reality, it was more like finding out there was a bomb on the plane when you were already airborne. I felt impotent and envious of the ­uninformed majority. I wished I didn't know.

Thoughts of suicide offer relief, at first:

My first suicidal thought was a kind of epiphany – like Batman figuring out his escape from the Joker's death trap. It seemed very "me" to choose death over self-delusion. Ah ha, I thought. For the first time since the diagnosis, I slept through the night.

I was shocked to read the figures for HD-related suicide. One in four people with the illness tries to kill themself. I was surprised it wasn't more. Rationally, you would have thought that everyone with the condition would realise the futility of continuing. Yet three-quarters of sufferers ­carried on. Why? Had they been duped by family members into believing they were not as far gone as they felt? Or were they falling for some ­misplaced belief in the sanctity of life? Their ­decision to cast the destruction of their ­identity and descent into madness as a challenge rather than a disaster seemed irrational, yet weirdly threatening.

Raven is familiar with the euthanasia/assisted suicide movement, listing their rationales for helping people like herself (or the one she will become) kill themselves.  Eventually she analyzes them to the point of dissection, which paints a less than pretty picture of the arguments.

While Raven's thoughts centered on suicide, her husband was of a different mind.  Mulling on that barrier and the fact that her own father's late-onset condition is the only experience she's had with the disease, she goes on a journey:

Apart from my dad, I'd never seen anyone with HD. His affected relatives were all kept under wraps. I became fascinated by Wexler's report of a ­community of HD sufferers in Venezuela where, through an accident of history, HD has ­become endemic. Her account of the inhabitants of the fishing villages on the shores of Lake ­Maracaibo was shocking and compelling, and eventually I decided to go there myself. En route to Barranquitas, I worried my curiosity might prove ill-­advised. An article in Business Week said the town was "like something out of the Twilight Zone".

What she found in the community around Lake Maracaibo affected her profoundly.  It also changed the way she envisions her own future.

It's a long article about a long journey - both literally and figuratively. 

Please go read the entire article - now.  --Stephen Drake

Activist and Friend Judi Chamberlin Died This Weekend

Late last Saturday night (January 16, 2010), Judi Chamberlin died at home, with family at her side.  This was not unexpected.  Judi has been receiving hospice services for over a year as a chronic lung condition worsened to the point where she decided to enroll in hospice services.  She shared her thoughts and experiences as a hospice patient on her blog, "Life as a Hospice Patient."

Judi is best known as a pioneer in the psychiatric survivors' movement - or "Mad Pride."  Judi and and a handful of others grew a movement that challenged the notion that a psychiatric label was a justification for denial of basic human rights, and leaving individuals at the often not-so-tender mercies of mental health professionals.

Readers of this blog - especially outside of the disability community - might have noticed that NDY doesn't devote a lot of discussion or recognition to psychiatric terminology.  We also (I hope successfully) steer clear of sanctioning forced psychiatric treatment as our answer to people with disabilities who want to kill themselves or want help doing it.

Judi Chamberlin had a lot to do with that approach.  Early on, she challenged those of us working in NDY to be careful not to answer one perceived injustice by advocating another.  She was right and I hope we've done our best to avoid those traps.

Like many people in and out of the movement, I will miss her.  It's not that we talked that much, but I often felt her looking over my shoulder, making sure I didn't screw it up.

For more information on Judi, including links to recent coverage about her, please visit the The National Empowerment Center.

There is a page devoted to all things Judi Chamberlin.  --Stephen Drake

Breaking News: NH Hampshire House Rejects Assisted Suicide Bill

This was expected, but it's still feels good to see it happen.  The vote was 242-113.

You can read the AP report here.

A Disability Perspective on the Issue of Physician Assisted Suicide - Disability and Health Journal

Several blogs wrote about this issue late last month when a press release announced the publication of an issue of the Disability and Health Journal dedicated to articles on assisted suicide and disability.  I held back from announcing the issue on this blog for one very important reason: A snafu resulted in the press release being issued before the journal in question was available online.

I've mentioned before that I love it when people save me time and work when it comes to writing.  Writer and editor Michael Cook has just published a summary of the contents of the journal issue on Mercatornet.com - along with some interesting commentary - in "Is Death Better than Disability?":

When assisted suicide is legalised most of the people who will die are disabled. And American disability advocates take a very dim view of it. This is the theme of a hard-hitting series of articles in the latest issue of the Disability and Health Journal.

The editor, Suzanne McDermott, of the University of South Carolina School of Medicine, writes that she changed her own mind after studying the issue. At first she believed that assisted suicide was solely a personal autonomy issue. But eventually she was persuaded that it is at the heart of the movement for disability rights: "Almost all people at the end of life can be included in the definition of ‘disability’. Thus, the practice of assisted suicide results in death for people with disabilities."

The special issue is a response to a controversial 2008 decision by the American Public Health Association (APHA) to back "aid in dying" (ie, assisted suicide). This slipped almost completely under the media’s radar, but it means that the official policy of the "oldest, largest and most diverse organization of public health professionals in the world" – 30,000 of them – is to support assisted suicide to the hilt. Or, as they prefer to call it in Oregon, "patient-directed dying" or "physician aid-in-dying".

Rather than worrying about some ambiguous language in the Obama administration’s health reform legislation or scrutinising the publications of his health advisors for a few indiscreet phrases, the elderly and their relatives ought to be worried about the 30,000 members of the APHA. They are the ones who could be sitting on the "death panels". The authors of the articles in the Disability and Health Journal certainly are worried.

The journal issue has articles by authors familiar to readers of this blog.  Marilyn Golden, writing with Tyler Zoanni, provides a public policy analysis of assisted suicide and its impact on people with disabilities; Carol Gill deconstructs and rebuts some of the favorite "straw man" arguments used against disability activists who oppose legalization of assisted suicide; and NDY founder and president Diane Coleman, who gives a point-by-point rebuttal to the "Autonomy, Inc." brief in Baxter vs. State of Montana. "Autonomy" is a pro-assisted suicide group. Its board is mostly people with disabilities. The group only seems to surface only when called upon to sign onto legal briefs or make a statement to the press related to assisted suicide legislation.

All of these articles are well worth reading.  The authors bring a wide range of experience and viewpoints in their explorations of the issues surrounding assisted suicide and euthanasia.

On a cautionary note, I would hope that academics, scholars and other professionals connected to disability take the lesson of the American Public Health Association to heart.  Most of the members of of the disability group within APHA had paid little attention to the intricacies of the assisted suicide debate until it was shoved on their plate.  This is likely to be a scenario that gets played out time and time again unless there is renewed interest in the debate from disability advocates.

In the end, these highly talented, committed and caring people lost the battle after an initial victory of stalling a vote on the decision to endorse assisted suicide for a year.  They had to learn everything about the debate from scratch while their opponents were unified, well organized and well-connected.

The consequences of that disadvantage can be seen even now in Gloria Krahn's description of the struggle within the organization.  Among other things, she describes a "compromise" that was reached over terminology.  At the insistence of the Disability  Section members, "Death with Dignity" was rejected as a term for assisted suicide, but "aid in dying" was put in its place.

Those of us familiar with the marketing efforts of pro-assisted suicide advocates know that "aid in dying" is the preferred term promoted by the groups like Compassion & Choices.  Rather than being a "compromise," this was just one aspect of the overall victory.  (Obviously, though, the rejection of "death with dignity" was a victory of sorts since the term has a direct bearing on people with disabilities, who get to be viewed as "undignified.")

I don't want that last word to get taken wrongly.  These individuals in the Disability Section of APHA did the best that could be expected under the circumstances.  Like everyone else connected to disability, they're confronted with critical issues commanding a great deal of attention, especially in the current economic meltdown.

It's time to recognize though, that this is one more critical issue for disability advocates, and maybe moreso because of the economic meltdown when people are looking for guilt-free ways to eliminate society's "financial burdens."

To access the journal issue, and its articles, go to this site.  For this issue only, there is no registration required.  It's fitting, I think, to make a disability-themed journal issue so easily accessible.  --Stephen Drake.

Big News: Final Exit Network Activist Enters Guilty Plea in Arizona - Agrees to Testify Against Other Defendants

This could be very important news.  Wye Hale-Rowe, a long time assisted suicide activist and advocate, has entered a guilty plea in Arizona to a charge of "facilitation to commit manslaughter."

The longest and most detailed coverage of Hale-Rowe's plea is in the Phoenix New Times, an independent paper that originally broke the story of the investigation that led to the arrests of Hale-Rowe and three other individuals, all "exit guides" in the Final Exit Network.  The rest of the media in Arizona has treated this as almost a non-story.

From the New Times blog:

Readers may remember our story on the so-called "assisted case" of Jana Van Voorhis, a 58-year-old Phoenix woman who died mysteriously in her bed in the spring of 2007.


It was a particularly sad and bizarre yarn (even by our standards), and had a slew of dicey legal and ethical issues wrapped inside of it.

One of our key interviews in the piece was with Wye Hale-Rowe, then 79, a retired family therapist and great-grandmother who now lives in Michigan. She was then was a volunteer for the Final Exit Network, an offshoot of the now-defunct Hemlock Society.

Earlier today, Hale-Rowe pleaded guilty in Maricopa County Superior Court to facilitation to commit manslaughter, a felony.

In striking a plea deal with county prosecutors, Hale-Rowe agreed to testify against the three remaining defendants in the case, an aged Scottsdale man who allegedly also assisted Van Voorhis in killing herself, and two senior Final Exit officials from out of state.  (emphasis added.)

 The other defendants are facing charges of manslaughter and conspiracy to commit manslaughter.  This already had the potential of being a very interesting and revealing trial in regard to the Final Exit Network.  Van Voorhis had no significant health issues or physical disabilities.  I also was looking forward to how the "training manual" would be used as evidence in the trial - the manual allegedly tells "exit guides" they are "special people" and should work to reduce the ambivalence of people who want to commit suicide - and any family members involved.

Now we have Hale-Rowe copping a plea and agreeing to testify against her accomplices. 

Question: Will anyone besides the folks from the Phoenix New Times cover this trial?  --Stephen Drake

Montana Supreme Court Decision: A Non-Lawyer's First Reaction

First, the Supreme Court Opinion in its entirety can be found at this site in PDF format.

As to a "constitutional right" and assisted suicide - the court avoided giving a ruling on that at all (but in doing so voided the lower court finding in that regard).  Instead, through some strange permutations in finding that there is nothing currently barring doctors from giving lethal prescriptions to "terminal" patients.

For a full understanding, you'll have to read the opinion - opinions, actually.  There are two concurring opinions and one dissent.  Even then, if you're not a lawyer, it will be a struggle.

Nevertheless, there are a few things that I can say about the court's reasoning.  According to the court, Montana has a fairly broad application of the "consent" defense in questions of criminal activity.  Additionally, they totally dismantle any distinction between withholding/withdrawal of treatment and the giving of lethal medication.  (the dissent points out that the Supreme Court cases on assisted suicide in 1997 reaffirmed a significant distinction between omission and comission).

In doing these things, the court was able to ignore the existing statutes against assisting suicides, at least as it pertains to prescriptions of lethal medications given to patients by their doctors.  (For other reasons, I think they've also left the door open to a "consent" defense for elderly men who kill ailing wives - a growing phenomenon.)

The most disturbing part of the opinion is the "specially concurring" opinion by Justice James C. Nelson.  Nelson declares openly that he sees a constitutional right for assisted suicide, so that we all know at least one vote in any future challenges.  But he doesn't stop there.  Nelson writes more like an unusually eloquent member of the Final Exit Network than a Supreme Court Justice:

Thus noted, the Patients and the class of individuals they represent are persons who suffer from an illness or disease, who cannot be cured of their illness or disease by and reasonably available medical treatment, who therefore expect death within a relatively short period of time, and who demand the right to preserve their personal autonomy and their individual dignity in facing this destiny.

In choosing this language, I purposely eschew bright-line tests or rigid timeframes.

What Nelson is signaling here, I believe, is that any challenge to a law that limits the practice of physician assisted suicide will find a friend in this Justice.

Justice Jim Rice wrote the dissent, which refutes most of the arguments in the Opinion itself - including the negation of long-standing statutory prohibitions on aiding suicides.  Perhaps most importantly, though, Rice thoroughly discusses the intent of elements of the Montana Constitution.  Among other things, he points out the significance of a "right to die" proposal being discussed and rejected for inclusion in the Montana constitution.  He argues it is hard to read an intent for the practice to be legalized when one knows the subject was discussed and rejected.

I'll be writing more later.  There's a lot of material in this decision and I still haven't wrapped my head around it all.  For the most part, lawyers and judges are really really painful to read.

Needless to say, when once in awhile, someone says I "think like a lawyer" I guess that's OK.  Just never accuse me of writing like one.  --Stephen Drake

Montana - What Others Are Saying

I've been struggling through the decision by the Montana Supreme Court in Baxter v. Montana.  I'm still trying to get my head around the implications of the specific wording used in the decision - a decision which states there is nothing that currently prohibits physician-assisted suicide in Montana law right now (in the court's interpretation).  As a result, the court declined to evaluate any arguments regarding a "constitutional right" to an assisted suicide.

I'm paying extra attention to the "specially concurring" opinion written by Justice Nelson.  His concurrence is almost as long as the court opinion - and is alarming in just how far this justice would like to see the practice and the "right" of assisted suicide advance in Montana.

But I still need a little time to process this.  Here's a sample of what others are saying:

The Euthanasia Prevention Coalition issued a press release on the day of the decision titled Baxter v. Montana: Assisted-Suicide Lobby Group does not get What it Wanted: The Montana Supreme Court Denies Constitutional Right to "Aid-in-Dying".

True Compassion Advocates, a group based in Washington state, also issued a press release, titled Baxter v. Montana: The Montana Supreme Court Declines to rule on Constitutional Right to Assisted Suicide; Legislature needs to "step up to the plate" to protect Montana citizens.

Bill Peace, writing at Bad Cripple, gives a pretty blunt assessment of the decision as he sees it in a blog entry titled Assisted Suicide: Legal in Montana. 

Stay tuned, more soon.  --Stephen Drake 

It's a New Year - A Little Housecleaning and a Word from Ben Mattlin

This latest gap in posts was a little longer than planned.  The holiday weeks were filled with several crises, all of which turned out OK, but took away time, attention and energy.

I did a little housecleaning here.  I deleted some comments waiting in the queue - they were both tiresome extensions of exchanges that were already pretty pointless.

There's a lot happening and I'll be playing "catch-up" over the next days and weeks.  Right now, I figured I'd share something that seems very appropriate as a kick-off for the New Year.

(Note: yes, I do know about the court decision in Montana and I'll be writing about it soon.)

Yesterday, NPR's Morning Edition featured a commentary by friend and ally Ben Mattlin.  You can read or listen to the commentary by going to To One Of the Lucky Ones, The New Year Means More.

Excerpt:

I've used a wheelchair my whole life. I no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. So, why do so many people feel sorry for me?

They don't know me, of course. They don't know that I grew up in a great family, graduated from Harvard, get my writing published, got married and fathered two terrific little girls. There are a lot of reasons why I consider myself lucky.

Still, people have said to me, "If I were like you, I'd kill myself."

This is supposed to be a compliment, I think. They mean to commend my perseverance. So how come I want to say back, "If I were like you, I'd want to kill myself, too!"

Ben has posted the longer original version of his commentary on his blog, titled Adventures in Modern Life.  Check it out.  --Stephen Drake