Richard Rudd – Saved by a Blink

advance directives, consciousness, life-ending decisions, media coverage, medical decisionmaking, Our News & Commentary Blog, vegetative state

This past week, news sources in Europe and the US have been telling the story of  Richard Rudd, who was left with spinal cord injuries and in an apparent coma after a motorcycle accident.  As medical staff and family prepared to disconnect Mr. Rudd’s ventilator, a final examination by one of his physicians held open the possibility that Rudd was conscious and could make his life-and-death decisions himself.  Mr. Rudd’s story was the subject of a BBC documentary aired this last week.  Click on the link below for a video promo of the film:

As I mentioned above, Rudd’s story was featured in many outlets.  My sentimental favorite is the article in The Guardian, titled “Blink, and you live – doctors’ message to man in a coma“:

A man who was left paralysed and seemingly unable to communicate following a traffic accident was saved from having his life support machine turned off when he managed to blink three times to tell doctors that he did not want to die.

Richard Rudd’s family had been agonising about turning off life support, his father said, after his son had said he would not want to live in a paralysed state.

But his son’s remarkable response raises questions about when life should end and about how and when a family can decide if their loved one has suffered enough.

If the title of that Guardian article sounds familiar, there’s a reason. In 2004, The Guardian published a story  that discussed the life-and-death consequences related to determination of consciousness in brain-injured patients.  It opened with the story of a Belgian woman who was originally believed to be in a vegetative state:

When a 39-year-old Belgian woman suffered a stroke and fell into a coma, doctors concluded that she was unlikely to regain consciousness and, after a time, diagnosed her condition as persistent vegetative state (PVS). One of the criteria on which they based their decision was her inability to blink or track a moving object with her eyes. It was only when they discovered that the stroke had damaged a cranial nerve, preventing her from opening her eyes, that they realised their error. If they opened her eyes for her, she followed their instructions. Having regained full consciousness soon after her stroke, she revealed she had overheard all the bedside discussions as to whether it was worth keeping her alive. At no point had she wanted to die.

The story was titled “Blink and you live.”

In the immortal words of Yogi Berra – “It’s déjà vu all over again.”  –Stephen Drake

Three recommended reads: Bill Peace on “Ashley and Me,” L Syd M Johnson critque of Jacob Appel on PVS and April Michelle Herndon on the “Magic Pill” Question

Ashley X, bioethics, blog recommendations, cure, glbt, Hastings Center, Our News & Commentary Blog, pvs, william peace

I’m extremely ambivalent about the Hastings Center.  The interactions I have had with this bioethics entity have been both cordial – and very limited.  Periodically, the Center seems to take an interest in hearing something from disability advocates and activists, but after they’ve engaged in a small token effort, move on and appear to be pretty much oblivious until the next time they do a token event/seminar/workshop.

Nevertheless, I go back periodically to the online Bioethics Forum, because I occasionally find articles on that section of the website that are relevant to NDY and/or disability rights.  Right now, the Bioethics Forum is featuring three articles that all have relevance to NDY’s mission and/or to disability rights – even though only one of the articles is written by a disability rights activist.

Going from the oldest to the newest:

Ashley and Me was written by William J. Peace, a name that should be familiar to regular readers of this blog, since we’ve excerpted or pointed to his Bad Cripple blog numerous times.  Bill’s essay on the forum is about Ashley X. – the pseudonym of the young girl who was subjected to surgical interventions to stunt her growth and prevent the changes that come with puberty. Here’s an excerpt from Bill’s essay:

When I first read about the Ashley treatment in 2007 I was stunned and angry. How could parents and doctors implement such a radical intervention? Today my outrage has been replaced by a sense of discomfort and vulnerability. Beyond my personal feelings, I think the Ashley treatment is critically important because two extreme views exist that have become entrenched.

The doctors in Seattle who initiated the Ashley treatment, and its proponents, firmly believe they have helped one child and potentially many more. In contrast, many people with disabilities, like me, consider the Ashley treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require?

Withholding Care from Vegetative Patients: Financial Savings and Social Costs was written by L Syd M Johnson.  Johnson takes on a recent Huntington Post essay be Jacob Appel, who specializes in polemical pieces under the twin titles of “bioeticist” and “medical historian.”  Earlier this year, one of his other Huntington Post pieces was critiqued on this blog.  Excerpts from Johnson’s essay:

In a recent column in the Huffington Post, Jacob M. Appel argues for “rational rationing” of health care resources by withholding and withdrawing life-sustaining medical treatment from patients in a permanent vegetative state. He considers the case of Ruben Betancourt, which will soon be decided by the New Jersey Superior Court in Betancourt v. Trinitas Regional Medical Hospital

***

Appel argues that physicians and hospitals should withhold or withdraw care from permanently vegetative patients, because such care is costly and diverts money and medical resources from more worthwhile patients and endeavors.

***

First, and most importantly, there is a widely acknowledged problem of misdiagnosis in disorders of consciousness, which include the vegetative state. It is estimated that more than 40 percent of patients currently diagnosed in a permanent vegetative state are instead in a minimally conscious state – that is, they may be conscious, albeit to a limited degree. Clinicians and researchers are working to improve diagnosis, but at present it remains extraordinarily difficult, even for experienced neurologists, to distinguish between the vegetative and minimally conscious states.

Given the uncertainty, we should not be so quick to jump to conclusions about the irreversibility of a vegetative state. How quick would we be to terminate life support for patients with other conditions if there was a four in ten chance that they had been misdiagnosed? Regardless of the decision of the Betancourt court, any legal guidelines on withholding and withdrawing treatment from permanently vegetative patients will be meaningless – and potentially unjust – absent the ability to accurately and with medical and legal confidence diagnose patients.

The “Magic Pill” Question was written by April Michelle Herndon.  If you don’t recognize the reference, the “magic pill” question is about one would take a pill that would change that which makes you “different” – people with disabilities get posed this question quite often.  As Herndon points out, so do other marginalized groups in society:

“Would you take a magic pill to make yourself straight?” That question came from an audience member at a recent panel discussion at my university, organized by the GLBT Faculty Committee and the GLBT Student Partnership, which aimed to educate the campus about the lives of GLBT people and their generational struggles. The panel discussion was part of a suite of activities leading up to our campus’s observation of the National Day of Silence. I wasn’t able to attend the panel, but those who did told me everyone on it said that they would take the magic pill, with one person adding that he’d like to take a whole bottle of those pills.

I wish I could have been on that panel to say, “No, I wouldn’t take a magic pill,” and to unpack the question. 
Discussions of GLBT people – even in the mainstream – often use what disability scholars have termed a “medical model” for understanding the struggles we face. The medical model, which presumes that being GLBT is something we “can’t help,” suggests our struggles result primarily from an embodiment rather than from social conditions. Further, the medical model emphasizes notions of choice versus innateness, with little room for frameworks that acknowledge both as possibilities. 

Herndon shares a list of things she would have said if she’d been there, among other things – the “pill” question and its history of being posed to disabled people: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4793&blogid=140#ixzz0tCwKjKS2
These are three very different pieces, but every one of them is worth the time spent reading them.  –Stephen Drake

Associated Press Misreports German “Right to Die” Court Decision – and Issues Very Belated Correction

assisted suicide, Associated Press, Germany, media coverage, media issues, Our News & Commentary Blog, reality check, right to die, Wesley Smith

On June 25th, the Associated Press distributed a story about a “right to die” court decision in Germany.  It ran under the headline of  “Germany: Assisted suicide OK if patient consents.”  The content of the headline alone should have rung some alarm bells, since the headline implies something was done to “the patient” who gave consent for it to be done.  Obviously, suicide – assisted or not – is allegedly an act engaged in by the individual him or herself.  If it’s done to them, with or without consent, it’s something else entirely.

As the short article reveals, the actions and ruling being described have nothing at all to do with assisted suicide, except for the fact that the AP attached the label to the ruling and the story:

BERLIN — Germany’s Supreme Court has issued a landmark ruling that an assisted suicide can not be punished if it is carried out based on a patient’s prior request.

The court on Thursday acquitted a lawyer who had counseled his client in 2007 to cut the tube feeding her mother, who had been in a non-responsive coma for five years. A lower court had handed the lawyer a nine-month suspended sentence.

The high court said the then 71-year-old woman had expressed the wish not to be kept alive under such circumstances in 2002 before falling into the coma.

German Justice Minister Sabine Leutheusser-Schnarrenberger welcomed the ruling as a major step toward respecting an individual’s free will.

Wesley Smith at Secondhand Smoke was up and crying “foul” about this example of “media incompetence” within 24 hours (excerpt):

That isn’t assisted suicide!  The German court allows patients to refuse unwanted medical treatment, a different matter factually, ethically, and in the ultimate cause of the patient’s death.

The Associated Press dominates the framing and phrasing of stories that get printed and broadcast nationally.  Many newspapers have “downsized” their reporting staff and have come to rely even more heavily on the Associated Press for content.

Nevertheless, I think it’s worth pointing out that some prominent news outlets/services – that don’t rely on the AP – got the story right.  The New York Times headline for their story read “German Court Liberalizes Rules for Right to Die Cases.”  Even UPI got it right with its story “German court decides right-to-die case.”

Readers of this blog might remember that the Associated Press has had multiple problems with accuracy covering “right to die,” “assisted suicide,” and other related topics of interest to NDY.  The organization’s track record of correcting mistakes of substance is abyssmal.

To be fair the AP did issue a correction for this story.  How long was that correction in coming?  A day?  Two days?  Try a week.

On July 2nd – one week after the original misreported story was distributed to tv and radio newsdesks along with newspaper desks – the AP issued a “correction,”  and taking a week to do that falls into the “too little, too late” category.  FWIW, here is the correction, which probably hasn’t been read or reported in every venue that the original article was featured:

Correction: Germany right-to-die story

The Associated Press
Friday, July 2, 2010; 2:17 PM

BERLIN — In a story June 25 about a right-to-die case, The Associated Press reported erroneously that Germany’s top criminal court legalized assisted suicide. The court didn’t rule on the issue of assisted suicide. The case involved a woman in a vegetative coma who was being kept alive through an intravenous feeding tube, though not terminally ill. The court overturned the attempted manslaughter conviction of a lawyer who had told the woman’s daughter she could remove the tube from her mother. The woman had previously said she did not want to be kept alive under such circumstances.

Maybe I’m being too hard on the AP.  Given the fact that they generally don’t acknowledge errors of substance at all in my experience, maybe we should be grateful.

Just kidding.  The organization claims to operate according to ethical standards.  This doesn’t cut it.  –Stephen Drake

Using and Promoting Change of Language to Make the Objectionable Acceptable

aid in dying, alex schadenberg, assisted suicide, Compassion & Choices, Conflation and Con jobs, euthanasia prevention coalition, marketing, media coverage, media issues, Our News & Commentary Blog, reality check, torture

Last week, I happened to be watching The Ed Show on MSNBC.  Thankfully, the host – who I think is trying to be a liberal imitation of Sean Hannity – was on vacation.  Christopher Hayes, Washington editor of  The Nation, was subbing for the regular host.

I was kind of paying half-attention, getting ready for a road trip the next day, when my attention focused sharply during the start of a commentary by Hayes (starts about halfway through the transcript of the show):

Imagine for a moment our country elected a bunch of people who thought that rape should be legal.  Now, these pro-rape politicians knew that simply coming out and proposing that we legalize rape would be toxic and odious and rightly inspire moral revulsion among the populace.  So they say this instead.  Look, we don‘t support rape, but we want to legalize unilateral physical intimacy.  And after they say that, they set out to make sure that no one ever called rape, rape but instead in every instance called it unilateral physical intimacy.

It‘s pretty clear that if supposedly objective news sources, say, for instance “The New York Times”, adopted that same language, they would be granting the pro-rape camp a monumental political victory.  Unilateral physical intimacy is not a neutral phrase in our little thought experiment.  It is propaganda, as ideologically phrased as the term welfare queen or Islamo-fascist.

Well, the same is true for the pro-torture euphemism enhanced interrogation techniques.

This immediately reminded me of Conflation and Con Job‘s (aka Compassion & Choices) recent maneuvers to get the Connecticut Superior Court to recognize the term “aid in dying” as separate and distinct from “assisted suicide.” This was just the highest profile tactic in a long-term campaign by C&C to replace the term “assisted suicide” with “aid in dying.”  More commonly, the campaign is carried out with the same talking points in op-eds written by C&C members, like this one that appeared in the July 3 edition of the Bozemon Daily Chronicle.

Why is it important to them?  Why spend so much effort and energy on a simple phrase?

Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, attended the World Federation of Right to Die Societies Conference in Toronto in 2006.  Here is what he says about what he learned at a session conducted by C&C:

One of the speakers at that conference spoke about the focus groups and polling data that had been done by Compassion & Choices. This data found that the term “Aid in Dying” improved the acceptance of the political agenda of their group by 15% over the term assisted suicide. The speaker explained that once the public accepted the term “Aid in Dying” they would be able to win the debate in the public square. The same speaker also explained how the terms assisted death and assisted dying were better than assisted suicide, but then the speaker strongly advised the participants of the conference to stop using the term assisted suicide and always use the term “aid in dying.” (emphasis added.)
The term “aid in dying” is a type of soft euphemism. Everyone wants aid in dying, whether that be pain control, symptom management, good care, but most people have no intention of dying by assisted suicide. But if you ask a person, do you support aid in dying, they will more likely say YES, without ever thinking that they are supporting assisted suicide.
The speaker then explained how Compassion & Choices had tried to get the Editorial Boards of the newspapers in California,   where an assisted suicide bill had been presented, to change their language use from assisted suicide to “aid in dying”. The speaker also explained how they were working to get professional organizations to adopt the term “aid in dying”.

Returning now – and hoping people follow me – to the commentary by Christopher Hayes.  He went on to relate the findings of a recent study of major newspapers and the terms used to describe “waterboarding” in years before the Bush administration and what terms were used during the Bush years:

The results are eye opening.  From the 1930s to the last decade, “The New York Times” called or characterized waterboarding as torture 82 percent of the time.  But from 2002 to 2008, that number dropped to 1 percent of the time.  From 82 percent to 1 percent.

“The Los Angeles Times” called or characterized waterboarding as torture 96 percent of the time before the last decade, and after 2002, it dropped to 5 percent.  And the number of times “USA Today” called waterboarding torture or implied it was torture, zero.

Of course, private organizations can influence terminology to affect public attitudes as well, although that wasn’t the subject of Hayes’ commentary that night.  But I think these words apply to the consequences of C&C winning this war in the same way that the efforts to define away “torture” do:

The phrase “enhanced interrogation technique” was designed from the beginning to defuse our moral circuitry.  It‘s the job of the independent press to trigger our moral alarms.  “The New York Times” and “L.A. Times”” failed this basic test of duty and they could begin to atone now with a simple, clear policy.  Just call torture what it is.

I would only add that this applies equally to “aid in dying” and that any public policy or professional organization that embraces the term has also failed its basic duty to the public and to society.  –Stephen Drake

Addendum July 26, 2014: At this juncture, i would add the terms “assisted death” and “hastened death” as relevant to the post above.  Additionally, I changed the word “diffuse” and replaced it with “defuse” – I believe that the latter term was the one Hayes actually used and it makes more sense in context.

Final Exit Network Billboard “Improved” by Billboard Liberation Front

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(Note – The image above is of the Final Exit Network (FEN) billboard in San Francisco that says “My Life  My Death  My Choice.”  Below those words the old website address has been replaced by the web address for Phillip Morris, manufacturer of Marlboro cigarettes and other tobacco products.)

Some things are just too good to be true.

Once in a while, though, you get pleasantly surprised.

A few days ago, I heard that the Final Exit billboard in San Francisco had been the victim of some “creative vandalism” from a group called the “Billboard Liberation Front.”  I held off, just in case this was a hoax.

Well, it’s a hoax, all right, but it’s FEN and Phillip Morris, leading manufacturers of cigarettes, who are the victims.

Up above is a picture of the new and greatly improved billboard.

Here is the press release from the Billboard Liberation Front:

FOR IMMEDIATE RELEASE

June 27, 2010
San Francisco

The Billboard Liberation Front (BLF) is honored to announce a new marketing partnership with Philip Morris (PM) that finally brings together the rugged sense of American independence with your most important choice as a consumer: your death. The message of “My Life. My Death. My Choice.” informs and empowers the consumer to choose, as their god given right, how they want to die. Philip Morris brings this message to the consumer to remind them that some rights are inalienable in life as they are in death.

“We’ve always said that the only two things in life that are unavoidable are death and taxes,” commented Michael E. Szymanczyk, Chairman and Chief Executive Officer, Philip Morris. “This campaign drives home that message where, if you are gonna die, might as well do it on your terms. Just like our Marlboro Men did.”

According to Patrick B. Smelt, Chief of Marketing, “This bold message of independence and demanding life and death on your terms fits with the current zeitgeist of anti-establishmentarianism and post-post-modern rage at the repressive state demanding a healthier you and your environment.”

The BLF was honored to accept this exciting challenge. “We have no comment on President Obama’s health care reform, but many consumer of Philip Morris’s products do. We felt that this campaign picks up on a widespread rage that some nameless, faceless bureaucrat might give them cheaper health care, preventative treatment, and maybe deny them the sweet release we are all seeking,” said Rico T. Spoons, BLF Director of Offense as he idly drew a razorblade across his wrists. “This oppressive political climate and fascist approach towards health raises the comforting question of ‘how will you end it all?’ I like to think that we are just giving some poor folks a reminder that Philip Morris will always be there to help kill you.”

All former Marlboro Men, Wayne McLaren, David McLean and Dick Hammer, were unavailable for comment due to their rugged, manly choice of death by lung cancer.

The improvement can be viewed on Howard at Van Ness.

It’s nice to see some creative anarchy alive and well – and we especially appreciate the choice of targets this time around.