John Kelly: Disability Rights Organizations Oppose Assisted Suicide

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[Editor’s note:  In last week’s NDY blog featuring two great letters to the editor – Two Disability Advocates Respond to Two Assisted Suicide Proponents with Disabilities, I said I would post John Kelly’s article on the same subject, the role of people with disabilities in opposing legalization of assisted suicide.  Here it is!]

We are long-time disability rights activists writing to set the record straight about disabled people’s stance on assisted suicide (Myers and Hankinson, “People living with disabilities support death with dignity”). Disability rights advocates and organizations have long opposed legalization of assisted suicide.  In the mid 1990s, Not Dead Yet organized to oppose Jack Kevorkian’s assisted suicides, two thirds of which ended the lives of non-terminal, disabled people. Over the last 20 years, every major national disability rights organization that has taken a position on assisted suicide, firmly opposes it. In recent state level campaigns, disability rights opposition has been a key factor in stopping assisted suicide bills.

The authors base their argument on results from three state polls and quotes from scientist Stephen Hawking. Let’s look at the three states. In Massachusetts, disabled advocates formed the group Second Thoughts during the 2012 assisted suicide ballot campaign. We took the name from our finding that the more people learn about assisted suicide, the more they oppose it. We gathered support from 11 major state-wide disability organizations; no disability organizations came out in favor. And in the most recent legislative session, Second Thoughts joined with the Massachusetts Medical Society and the Hospice & Palliative Care Federation to quash a similar bill.

When Connecticut proponents put forward bills in two consecutive sessions, our sister group Second Thoughts Connecticut organized with the disability protection and advocacy agency and the Connecticut Council on Developmental Disability to stop the bills. Hugh McQuaid wrote in CT News Junkie that “Both this year and last year, people with disabilities and their advocates have been among the bill’s most outspoken opponents. Many testified against the bill during its public hearing.”

Lastly, the authors cited New Jersey, where disability opposition was just credited with stalling an assisted suicide bill. Susan Livio of NJ.com wrote “Disability advocates, fearing the legislation could be manipulated to prematurely end patients’ lives, turned out in force to testify against the bill when it passed the Assembly Health and Senior Citizens Committee earlier this month.”

In reality, assisted suicide is the ultimate denial of choice. Bob Kafka, national leader of ADAPT, points to the enforced poverty, lack of available home care, and terror of nursing homes confronting seniors and disabled people who need assistance.  The lack of choices is reflected in the statistics from Oregon, where 90% of suicides are ascribed to “loss of autonomy,” and 40% to “feelings of being a burden.”  Kafka says, “Society is failing to ensure that seniors and people with disabilities have access to consumer controlled long term services and supports when they need them. The last thing we need is for those in power to make a public policy choice, during this time of vast budget cuts in Medicaid health and long term care, that an early death is the cost saving answer to these very real human needs.”

John B. Kelly is the New England regional director for Not Dead Yet and the director of Second Thoughts Massachusetts. 

Robin Williams and the Hypocrisy of Suicide Prevention Organizations

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The sudden emergence of suicide prevention organizations and their representatives in the media responding to the death of Robin Williams has been mind-blowingly outrageous to me – I track the suicide coverage – assisted and non-assisted – of old, ill and disabled people regularly. It’s part of my job. A near-constant in reading and watching that coverage has been the near-total absence of suicide prevention organizations and professionals in reacting to any suicide of old, ill or elderly people labelled as “right to die,” death with dignity,” “end of life,” “assisted suicide” or any other terminology that seeks to differentiate the suicides of some people from the larger group deemed as “preventable tragedies.”

In the aftermath of Robin Williams’ apparent suicide, suicide prevention experts and the press want to take special care about warning the public and make sure that the coverage of his death doesn’t spark a rise in suicidal behavior.  Here’s a sampling of the reactions, starting with a response to a tweet put out by the Academy of Motion Picture Arts & Sciences as reported in the Washington Post:

On Monday night, as fans around the world began to grieve Robin Williams’s death, the Academy of Motion Picture Arts and Sciences — best known, in many circles, as the people behind the Oscars — sent out what may be the iconic social media image of Williams’s death.

More than 270,000 people have shared the tweet, which means that, per the analytics site Topsy, as many as 69 million people have seen it.

The problem? It violates well-established public health standards for how we talk about suicide.

“If it doesn’t cross the line, it comes very, very close to it,” said Christine Moutier, chief medical officer at the American Foundation for Suicide Prevention. “Suicide should never be presented as an option. That’s a formula for potential contagion.” (Emphasis added.)

Moutier is referring to a well-documented phenomenon, better-known as “copycat suicide,” in which media coverage or publicity around one death encourages other vulnerable people to commit suicide in the same way. Adolescents are most at risk of suicide contagion; in recent years, groups like AFSP have also become particularly attentive to the role the Internet plays in romanticizing notorious or high-profile deaths, something it has long asked both the news and entertainment industries to avoid.

“The potential for online reports, photos/videos and stories to go viral makes it vital that online coverage of suicide follow site or industry safety recommendations,” one media guide reads.

But in the hours since @TheAcademy’s tweet went viral, professionals like Moutier have become concerned that it doesn’t, in fact, follow established safety recommendations. The starry sky from Disney’s Aladdin, and the written implication that suicide is somehow a liberating option, presents suicide in too celebratory a light, Moutier said.

The International Business Times presented this quote from a representative of the American Association of Suicidology:

The American Association of Suicidology has advised journalists to sensitively cover the death because certain types of news coverage are believed to increase the likelihood of suicide in vulnerable individuals. The association noted that the risk of copycat suicides increases when the story specifically describes the suicide method, but covering the suicide carefully can change public misperceptions and prompt those who are vulnerable or at risk to seek help.

Those are just two examples, but they’re typical of the way in which top suicide prevention organizations have been aggressively going after the press and spreading caution about the harm caused by irresponsible journalism.

I, for one, am extremely unimpressed and underwhelmed by the suicide prevention brigade. Even in this latest episode of a publicized suicide, I see nothing in their messaging to indicate that any of the organizations or their reps care at all if old, ill and disabled people kill ourselves (unless, of course, we’re Robin Williams).

Let me offer up one more quote before I talk about the total lack of integrity these organizations have shown in regard to suicides of old, ill and disabled people – deaths I get to read about far too often.  This is from Michelle Cornette, executive director of the American Association of Suicidology, who appeared on Lawrence O’Donnell’s show “The Last Word” on MSNBC:

I think what`s really important to keep in mind with respect to
suicidal thinking and individuals who die by suicide is that they have
essentially reached a cognitive state where they`re not really thinking
about other people. In fact, there`s some interesting research that`s come
out in recent years indicating there`s a very strong association between 
perceptions of burden on others and risk for suicide, meaning the 
individuals come to believe that their death is worth more than their life 
to their loved ones. (Emphasis added.)

Starting with that last point – about the association of being a burden – there’s an elephant in the living room (one of many) in Oregon assisted suicide data. According to information given by prescribing doctors, 49% of people requesting assisted suicide give “being a burden” as a major reason for wanting to commit suicide.  Oregon, btw, has one of the highest overall suicide rates in the country, and the rates for all ages are climbing. The state government (and suicide prevention organizations) aren’t inclined to look at legalized assisted suicide and the promotion of suicide as rational, even brave by both pro-assisted organizations and the press and how they might be influencing the overall suicide rates. One would think that good science would dictate at least considering a contagion effect from the normalization of suicide under the assisted suicide statute.  It’s interesting – and disturbing – that outside of ex-director of the American Foundation for Suicide Prevention (AFSP) Herb Hendin, I’ve never heard or read any suicide prevention professional highlight that the feeling of “being a burden” is a significant risk factor for suicide in general.

All of these suicide prevention organizations have media guidelines on reporting responsibly when covering suicides.  Among those guidelines are:

*Suicide is complex. There are almost always multiple causes,
including psychiatric illnesses, that may not have been
recognized or treated. However, these illnesses are treatable.
• Refer to research findings that mental disorders and/or
substance abuse have been found in 90% of people who
have died by suicide.
• Avoid reporting that death by suicide was preceded by a
single event, such as a recent job loss, divorce or bad grades.
Reporting like this leaves the public with an overly simplistic
and misleading understanding of suicide.
• Consider quoting a suicide prevention expert on causes
and treatments. Avoid putting expert opinions in a
sensationalistic context.
• Use your story to inform readers about the causes of
suicide, its warning signs, trends in rates and recent
treatment advances.
• Add statement(s) about the many treatment options
available, stories of those who overcame a suicidal
crisis and resources for help.
• Include up-to-date local/national resources where
readers/viewers can find treatment, information and
advice that promotes help-seeking. (Source: https://www.afsp.org/content/download/1066/16814/file/recommendations.pdf)

 

Over the last eight years, the activities of the Final Exit Network (FEN) – whose “exit guides” are claimed to have facilitated hundreds of suicides in the U.S. – have received national coverage.  The greatest coverage has come from their role in the death of John Celmer of Georgia, clear of mouth cancer he’d been treated for, but deeply distressed over his post-surgery appearance. The death of Jana Van Voorhis – a woman without serious physical illness but a history of emotional issues – has also received a great deal of attention.  Favorable profiles of FEN and its members have appeared in Time magazine and in the Washington Post.  A  NY Times health columnist recommended FEN as a resource for nonterminally ill people who want to kill themselves.  (FEN openly advocates the “right” of anyone with any kind of illness, condition, etc. to receive assistance and support in committing suicide.)

Virtually every one of these articles broke every single element of “good practice” in terms of reporting about suicide.

  • Percentage of articles detailing means of suicide: ~100%;
  • Percentage of articles sharing contact info for suicide prevention: almost none;
  • Percentage of articles quoting a suicide prevention representative: almost none;

A couple of articles got our hopes up that maybe suicide prevention groups were beginning to wake up and maybe give a crap about the ongoing promotion of suicide as “rational” for old, ill and disabled people.

In 2010, FEN put up a number of billboards across the country with the message “My Life My Death My Choice,” and their URL printed underneath. One of the first appeared in the San Francisco area.  The Bay Citizen, an independent newspaper, published an article with two suicide prevention professionals responding to the billboard:

 “This is irresponsible and downright dangerous; it is the equivalent of handing a gun to someone who is suicidal,” wrote Lanny Berman, president of the International Association of Suicide Prevention, in an email. “This message, communicated to thousands of vulnerable individuals, suffering from psychic and or physical pain that is treatable, invites a tragic and final solution to problems that most often can be solved with proper evaluation and treatment.”

There’s also a quote from a representative of  a local organization:

“Regardless of what someone might feel about assisted suicide, I feel the message behind this billboard is confusing and dangerous,” wrote David Paisley, deputy director of San Francisco Suicide Prevention, in an email.

“It assumes people will understand that it is a billboard about assisted suicide or they will go to the website,” he wrote. “In reality, most people who see the billboard from the street or car will not go to the website, but are left with a message that could be interpreted very tragically by someone in crisis and acting impulsively.”

At the time, I thought these comments were terrific breakthroughs.  To the extent that the reporter managed to get suicide prevention folks to come out of hiding for this story, it was a breakthrough.  But the more I read them, the more troubling the comments became.  Berman and Paisley seemed not so concerned with the general message so much as the possibility it would reach the wrong audience.

Within weeks, that concern would be validated in another story about the billboards – this one from New Jersey, where FEN also paid for a billboard. In July 2010, Judith Springer spelled it out:

Dr. Judith Springer.  Springer is a psychologist and board member of the Society for the Prevention of Teen Suicide.

The first red flag went up on Springer’s comments in her first press quotes that appeared in the Star-Ledger, giving her reaction to the FEN billboard:

Therapists called the billboard “irresponsible,” arguing it could serve as a “tipping point” for troubled teens or others at risk of suicide.“The idea of any of these upset, impressionable kids seeing a billboard like that absolutely horrifies me,” said Judith Springer, a Morristown psychologist and board member of the Society for the Prevention of Teen Suicide. “You can’t filter who sees a publicly displayed sign.”

The quote bothered me a little, since there seemed to be room here that – in her opinion – there is an appropriate audience for the sign and the organization.

Turns out my vague concerns were all too valid.  The good Dr. Springer ended up showing the depth of her concern when it comes to suicide for the elderly – or more accurately, her complete lack of concern.  In a July 16th article written by Fox News religion correspondent Lauren Green, Springer reiterated her previous comments and then expanded on them:

But Springer says she’s not opposed to Final Exit’s mission, just how they’re delivering the message.
“I visited the website and it’s populated by elderly folks who are at the end of a very long life and are in pain,” she said. “That’s a whole different issue to me.”
Let me translate – Springer has just shrugged off any concern about any group that encourages and facilitates the suicides of “elderly folks” because it’s “different” than what she deals with.
As of 2010, neither the American Association of Suicidology nor the International Association of Suicide Prevention had any position on assisted suicide. That’s what they claimed anyway.  It’s a lie. When suicide prevention organizations take “no position” on assisted suicide, they have actually taken a position to maintain silence regarding some types of people who commit suicide while speaking out about how to reduce the risk of suicide in the rest of the population. The no-position is a decision to cede authority to pro-assisted suicide advocates and activists to redefine terminology, gain acceptance and even approval for assisting the suicides of old, ill and disabled people. While suicide prevention organizations hide under their desks and refuse to talk about suicides of old, ill and disabled people as preventable tragedies, assisted suicide organizations are rearranging the playing fields and the laws. Soon, what suicide prevention organizations think about our suicides will be irrelevant.
Suicide prevention organizations probably hope that no one will remember their silence and abandonment in doing what they claim is their job.  So the next time you hear, see or read a suicide  prevention professional, tune out their timely propaganda and self-promotion and remember their silence at times when speaking out might have counted for something.
I promise that disability activists will remember.
We will never forget.

Two Disability Advocates Respond to Two Assisted Suicide Proponents with Disabilities

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On July 25, 2014, two individuals with disabilities had an op ed published in a Montana newspaper, the Missoulian, that called for a strong response from disability rights advocates, which came in the form of two great letters published in the same paper.

On August 7th, a letter by a disability advocate and former wheelchair racing athlete Lucinda Hardy appeared:

Dear Editor:

I have read the guest column,”People living with disabilities support death with dignity” (July 25), which advocates for legalizing assisted suicide and/or euthanasia for the disabled. I could be described as such a person and this opinion does not speak for me. I am strongly against legalizing these practices. 

When I was in high school, I was on track to get a basketball scholarship to college. And then, I was in a car accident. The accident left me in a wheelchair, a quadriplegic. In addition to my paralysis, I had other difficulties. Over the next two or three years, I gave serious thought to suicide. And I had the means to do it, but both times I got close, I stopped myself. 

If instead, my doctor, an authority figure, had told me that ending my life was a rational course, there might have been a different result. If instead, he had given me a lethal dose to ingest or offered to euthanize me, I might have gone along with it. But assisted suicide and euthanasia were not legal in Montana. Such courses were off the table.

So, instead, I went to college to seek a degree in education. While in college, I participated in wheelchair racing at the state, national and international levels. I met my husband and 21 years later the honeymoon is not over. We have three beautiful daughters and a new baby granddaughter. I am also active in my community.

Montana’s law protected me and I hope it will stay in place to continue to protect me and others as we go through the sometimes hard times of life.

Assisted suicide and euthanasia should not be legal.

Lucinda Hardy, Columbia Falls

And on August 4th, the paper also carried the following letter by long time ADAPT and NDY activist Marsha Katz:

While two disabled people have shared personal opinions in favor of legalizing assisted suicide (“People living with disabilities support death with dignity” July 25), readers need to know that all of the major national disability organizations that have taken a position on the issue oppose legalizing assisted suicide.

This includes the National Council on Disability, the National Council on Independent Living, the Disability Rights Education and Defense Fund, the Autistic Self Advocacy Network and several others (see notdeadyet.org/disability-groups-opposed-to-assisted-suicide-laws). These organizations view public policy with a deep historical knowledge of how old, ill and disabled people are devalued by society and, too often, even by our own families. They also have practical experience with our health care and service systems.

The so-called “safeguards” in assisted suicide laws are hollow. For instance, one of the two required witnesses to the form requesting assisted suicide can be an heir who might stand to gain by the person’s death. And worse, neither witness to the person’s signature is required to actually know the person. There is no way to discover, much less prevent, any form of coercion or caregiver abuse in getting people to sign assisted suicide requests. And since no independent witness is required at the time of death, self-administration of the lethal dose is not assured, even though it is required by law. In Oregon, the law includes no investigation or enforcement provisions. Safeguards? I don’t think so.

A major reason people request assisted suicide is the feeling they are a burden to others. I see that as a subtle form of coercion, often resulting from the lack of necessary home care services, or proper pain management and palliative care.

Why are people advocating our “death with dignity” before working first to assure that we have life with dignity?

Marsha Katz, Missoula

The op-ed also made a number of claims, some unsubstantiated, some inaccurate.  In the inaccurate category, two should be mentioned and corrected.  Despite their disabilities, the authors didn’t discern the error in their recap of findings reported in the Journal of Medical Ethics:

A report published in the Journal of Medical Ethics about the Oregon Death With Dignity Act concluded: “Rates of assisted dying in Oregon showed no evidence of heightened risk for … the physically disabled or chronically ill.”

The problem with this statement is that the Oregon assisted suicide reports tell us that the reasons people ask for assisted suicide are loss of autonomy (93%), loss of ability to engage in enjoyable activities (89%) and feelings of being a burden on family, friends/caregivers (49%), all indications of physical impairment and the need for physical assistance in basic daily activities.  In fact, it looks like the vast majority of the Oregon assisted suicides involved people with physical disabilities, whether the cause was life long, chronic or recent.

The authors also stated that, “Since Oregon’s law went into effect in 1997, four other U.S. states have allowed the medical practice of aid in dying: Washington, Montana, Vermont and New Mexico.”  That really overstates the case in Montana and New Mexico.  The Montana Supreme Court ruled that a physician may raise the defense of the victim’s consent to assisted suicide if he or she is charged with homicide in the death of a patient.  This is far from legalizing the practice and does not guarantee that the defense would be successful, which would depend on the facts of the case.  In New Mexico, the ruling was at the district court level, affecting only part of the state, and is under appeal by the state Attorney General.

Later this week, we’ll post an article by NDY’s New England Regional Director John Kelly responding to the same op-ed and giving a shout out to the role of disability activists in defeating assisted suicide legislation in the Northeast.  In fact, maybe those real successes are the main reason for the op ed, a transparent effort at redirection.

My Favorite Robin Williams Movie – Awakenings – The One That Always Makes Me Cry

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I’m not usually emotionally affected by the passing of a well-known person.  For a number of reasons, the death of Robin Williams has hit me emotionally like no other celebrity. Like many people, I’m a fan of his wild, off-the-wall humor that just seemed to pour out non-stop, but I’ll be darned if I can quote a single line of his comedy.

Last night, I read that Williams gave a Reddit interview recently and that his favorite role in a movie was playing Dr. Sayers in Awakenings. Last night, I found myself really longing to see the movie for the umptieth time, and Diane watched it – again – with me. I was teared up and/or crying through most of the movie, which is what I usually do when I watch it.

After much thought today, I decided to share this edited article I wrote about ten years ago, posted to an online forum I used to participate in – the forum had nothing to do with disability rights, euthanasia or anything else work-related – just a lot of smart and interesting people.  Those familiar with my writing style will recognize my habit of drawing several threads together into a hopefully coherent whole. It’s also a little more personal than what I usually write here.  I won’t feel offended if no one wants to read biographical info. 😉

Here – mostly – is what I wrote ten years ago:

My stories tend to reflect both my life and my thought processes. Linearity is not one of the major themes in my life. Peter Knoblock, my advisor as a masters student, gifted me with the term “divergent thinker” – “divergent” tends to characterize my life and stories like this as well.

In 1990, the movie Awakenings came out. I was on break between semesters in the Special Ed masters program at Syracuse University and staying with my parents. I talked my mom into going to see the movie with me.

(FIRST SPOILER WARNING – Awakenings is a fictional retelling of the dramatic, but short-lived response of a group of patients to a drug. After having contracted encephalitis lethargica in the late 1920s, many patients like these fell ill years after they apparently recovered. All were very severely limited in movement and the ability to express themselves – some gave little sign they were aware of what was going on most of the time.)

My mom and I go and settle into seats toward the back of the theater. Within a few minutes a group of people comes in. Looking over my shoulder, it’s obvious the group is a bunch of people with developmental disabilities. Nothing about the appearance of the people with disabilities causes me to come to this conclusion. No – it’s the behavior of the person who is clearly the staff person. He’s into “shepherding behavior,” attempting to control the movements of the adults he’s with. At the end of the line of “clients,” or whatever the staff person is calling them these days, is one guy, middle-aged, who is hanging back a bit. As the rest of the people with him file into the row behind us, he makes a break and sits himself down into the seat beside me.

I smile. I appreciate acts of resistance, especially skilled acts of resistance. [Smile]

The staff person tries to get him to move back with the group, but talking won’t do it. I figure one thing he might be worried about is how I feel about it. It’s not like everyone rolls out the welcome mat for people with developmental disabilities. I look at the staff guy and shrug, saying “he’s cool.”

Staff person gives up and sits back with the rest of his charges.

I get ready for the movie. My mom is on my right and the escape artist is on my left.

(SPOILER WARNINGS – ELEMENTS OF THE MOVIE ARE INTEGRAL PARTS OF WHAT FOLLOWS)

It’s not too long into the movie before I’m not as amused by the person on my left as I was when he first sat down. He mutters a little at points, but I am pretty good at tuning that out. Actually, some of his friends in the row behind me are muttering, too. Some of them seem to be distressed over the scenes of large-scale institutional living. I wonder how many of them lived in one at some point. It’s a safe bet it’s not a pleasant memory for anyone who did.

But at one point, a printed form held by one of the characters appears on the screen and the guy in my row asks me what it says. Annoyed, I tell him to be quiet and listen to the movie.

He says, in a very small voice, “I can’t read.”

I am suddenly very deeply ashamed. I’m reminded once again what a turd I can be. It’s a small thing this man needs and my tone obviously didn’t help him feel any better about the need for asking.

I decide I’m in need of an attitude adjustment. I summarize what’s on the form in question. Any time there’s print involved, I lean over and quietly give him an explanation. He, in turn, becomes a very quiet spectator of the film.

(My mom has caught some of this and threw me a questioning look. I signal things are fine and that I’ll explain later.)

I already know the basic outline of the story when I watch it. I read “The Man Who Mistook His Wife For a Hat” by Oliver Sacks years before this, and the events in the movie were alluded to there.

There are other things I wasn’t prepared for.

I wasn’t prepared for how familiar Leonard, played by Robert DeNiro, would feel. It’s not that I have Parkinson’s, but I have enough common ground in my nervous system with the issues that I can physically and emotionally identify with the “patients” depicted in the movie. The same isn’t true of other conditions. At different phases of Leonard’s emergence and decline, I get to witness parts of my present and strong possibilities of my future. (I was prepared for it intellectually. By virtue of one of many coincidences in my life, the preceding 3 months had been spent – in part – developing an understanding of what neuromotor issues were and how they mine were different from those of most people.)

I wasn’t prepared for how familiar Robin Williams’ character would be on a personal level. (Important note – at this point in my life, I’d been working as a staff person in one setting or another that allegedly helped people with developmental disabilities for over ten years.) At the moment, I was living comfortably, happily and monkishly in the masters program in Special Ed at Syracuse University. I was great with students, clients, and in a structured setting. Anywhere else I was at a total loss.

Where am I going with that? Let me put it this way. The teacher who supervised my student teaching had this to say after seeing the movie: “No wonder you liked it. The doctor in it is you.”

He means it – he’s seen me, for example, come to the realization that one of our labeled students has a reading vocabulary far more extensive than the 10-20 his records say. This is based on watching the student doodle, much of it words. Making my own flash cards, testing for five minutes at a time over a week, I determine the kid has at least 150 words he can read – probably more, since I only mark as “correct” the first thing that comes out of his mouth. (He makes errors that are very interesting as well.)Further, I can use that vocabulary, give him written sentences, and have him answer questions about them. (I’d learn a few years later, that all this ability would be ignored again. When it’s my turn to supervise student teachers at a middle school, I run into the student again. Somehow, the potential for working with his reading got lost in the intervening years.)

But the my own supervising teacher also notices something similar about the social ineptitude of both the Robin Williams character and myself – outside of anything task oriented. (He doesn’t say this, but it’s too painfully clear for me to miss.)

And the memories! Too many to recount, so I’ll stick to one. A few years previously, I worked in a “day treatment center.” One of the people in my room was an Italian man in his 60s, who I’ll call Dom. Most of the day, he did little but leaf through magaziness, although we tried to get him interested in other stuff. One day a coworker brought in a record with Italian Opera on it. At some point, Dom dropped his book, got a huge smile on his face, and scooted himself and his wheelchair over to the record player, arms outstretched. We were all stunned. The music ended soon after he got there. He returned to his normal stern expression and magazine leafing. No new interest in the record when we started it again. We brought in other Italian music. Nothing. But we couldn’t forget the flash of something else we saw for a fleeting minute – and knew that it was there all the time, and waiting to be reached again. Not that we were successful.

Back to the movie…

By the end of the movie, as anyone who is seen it knows, the “awakening” of the patients in Sacks’s story is as short as it is dramatic. A lot of people in the theater are in tears.

I am, too. But maybe not for the same reason that most of the others are.

Most watching the movie, I think, are stuck on the failed miracle – the images of the awakened sleepers returned to expressionless, stiff, nonresponsive entities.

I’m crying over something else. In the final scenes, Robin Williams’ character is giving an address to staff in which he summarizes the experience and talks about adjusting to “the reality of miracles.” At this point, the visual images shift to the patients, who, though nonresponsive, are being read to, fussed over, and treated as the same people they were when the drug was working.

The voiceover, from Robin Williams:

What we do know is that as the chemical window closed, another awakening took place. That the human spirit is more powerful than any drug and that is what needs to be nourished. With work, play,  friendship,  family. These are the things that matter. This is what we’ve forgotten. The simplest things.

I’m crying for a world that doesn’t exist. I don’t know how things went in the real-life hospital where Oliver Sacks worked, but in most of the places I’ve been, this isn’t how it works. Nonresponsiveness is seen as “no one home,” and the treatment of such people starts to follow accordingly. They don’t get talked to. They get talked about in their presence. People hold discussions with each other while ignoring them. For all intents and purposes, they cease to exist. How do I know? I’ve seen people do it. Worse, I’ve been one of those people treating a person as some kind of object.

At the end of the film, the guy on my left gets up and goes. Meanwhile, there is more, while the last of Randy Newman’s beautiful score plays. A little about what happened to the patients and to the “real life” Doctor Sayers. Just before the credits start to roll, there is a replay of a scene of Robin Williams with DeNiro, before the drug intervention. Williams’ hands are poised over DeNiro’s as they sit on a pointer on a ouija board. Williams says: “Let’s begin.” The picture fades and the credits roll.

Haleigh Poutre’s New Life and the Flawed Lessons People are Taking Away From Her Story

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Readers of this blog will hopefully remember the story of Haleigh Poutre, a child in Massachusetts who was abused and then neglected, failed and abandoned by just about every professional whose job it was to act to safeguard her welfare and safety.  She became the subject of a life and death* court battle that sanctioned her death but rallied just one day after the ruling was made. (*- The press and bioethicists used and continue to use “end of life” to characterize the court battle, evidently drawing inspiration from Lewis Carrol in terms of using ludicrously flexible terminology.) Here’s a summary I wrote back in 2008:

Haleigh Poutre narrowly escaped the death planned for her by medical professionals at Baystate Medical Center and publicly-appointed guardians from Massachussets DSS. These professionals all signed off and went to court to seek removal of both ventilator and feeding tube from Haleigh Poutre just 8 days after her admission to the hospital. Poutre was in a coma, the result of injuries allegedly inflicted on her by her adoptive mother and stepfather, Jason Strickland. (NDY issued a press release calling for a larger investigation than actually happened)

Poutre’s adoptive mother committed suicide. Strickland, quite probably to avoid being charged with murder, fought the DHS in court, seeking to have Poutre’s life-support maintained.

In a case of incredible irony, the case took enough time to allow Haleigh to improve. In fact, news reports that she was awake and responsive emerged just one day after a judge approved the removal of Haleigh Poutre’s feeding tube.

If you’re looking for a hero in this story, you can stop now. There aren’t any.

I’m happy to say that there are now “heroes” in Haleigh’s life.  By “heroes” I mean people who love her, care for her, and look out for her interests. That’s not really a “hero,” but her earlier life had no one who fit that description.  The news was shared with the public on August 3rd when the Boston Globe published an update on Haleigh Poutre and her life now.

The minister winds up his welcome to some 400 people, and soon lyrics flash karaoke-like on a large screen. A spirited Christian pop song, “Blessed be Your Name,” fills the Westfield Evangelical Free Church.

In the back row, a young woman, sitting in a wheelchair next to her adoptive parents, lights up.

Though she can’t read all the words, she sways to the music and claps her hands, the nails painted pink with white polka dots. She loves cheerful tunes and a crowd, and on this Sunday, she has both.

Keith and Becky Arnett could have predicted that Haleigh, 20, would brighten at this part of the service.

She entered their lives as a 14-year-old foster child, then known as Haleigh Poutre, who had been at the center of a passionate end-of-life court battle. Her singular story of abuse, compounded by government lapses, drew national media attention. It remains one of the darkest chapters in the state’s child-protection system. (Emphasis added.)

The term “end of life” is emphasized here for a reason. It’s also used in the subtitle of the article. Haleigh has the dubious distinction of being the only person I know of who has had a battle over whether or not she’d be allowed to live described as “end of life” before, during and after the court battle to determine whether or not she would live or die. It was presumptuous and inappropriate to characterize her publicized court case as “end of life” before the verdict, and it’s absolutely ludicrous to describe anything about her as “end of life” now – unless, of course, you want to gloss over the messy realities and avoid truly difficult discussions.

Haleigh, btw, should no longer be referred as “Haleigh Poutre;” After years of being foster parents, Keith and Becky Arnett adopted Haleigh, whose name is now Haleigh Arnett.

Lessons Mislearned?

Wesley Smith and Thaddeus Pope, both familiar to readers of this blog, have written in response to the Globe’s update on Haleigh.  I don’t agree with some of the analyses they offer. In Wesley’s case, it’s more a matter of emphasis or perspective. My differences with Pope are more substantive.

  • Like the Globe, Pope refers to cases like Poutre’s as “end of life” which clouds the actual nature of such cases, which are ones that are – to put it bluntly – cases to decide whether or not to end a life.  When Pope and other bioethicists promote an array of disparate situations to which to apply a term like this, it’s hard not to suspect that bioethicists, assisted suicide advocates, etc. actually want the public to be confused about a number of life and death topics in order to avoid informed discourse. The press, of course, just parrot the professional jargon they’re fed.
  • Thaddeus Pope claims that “her (Haleigh’s) story powerfully illustrates the limits of prognostication for some critically ill patients.” That’s not accurate at all.  Her story illustrates what can happen when doctors ignore long-established guidelines regarding wait periods for comas in making a determination of persistent vegetative state. Eight days doesn’t come close.
  • The Globe, Wesley and Pope all praise legal “reforms” enacted in the wake of Haleigh’s near-death experience. I’m not familiar with the final form of the second reform passed, regarding outside opinion on life and death decisions. The first version (and for all I know the final version) only called for a second outside opinion for wards of the state. I never understood why it was limited to wards of the state. Did they think individuals with biological or adopted families don’t get bad medical advice of the life or death type?

I do know more about the first “reform” passed in Massachusetts, ironically named “Haleigh’s Amendment,” sponsored by then-state Senator Scott Brown (yes, that Scott Brown).

Here’s what I wrote back in 2008:

Back in March, for example, almost no coverage was given to the inaptly named “Haleigh’s Amendment” that was introduced – and passed into law:

‘Haleigh’s Amendment’

 During debate last week on legislation pertaining to the abuse and neglect of children, which is intended to strengthen the Commonwealth’s oversight of children under the charge of the State, an amendment written by Sen. Scott Brown, R-Wrentham, was passed unanimously. The amendment protects victims from those who have been charged with their abuse or neglect.

Brown filed “Haleigh’s Amendment” in response to the tragedy of the Haleigh Poutre case in Westfield in 2005. Haleigh had been hospitalized as the result of alleged abuse at the hands of her adoptive mother and stepfather who had burned and beaten her into a coma with a baseball bat. While on life support, Haleigh’s stepfather attempted to obtain guardianship of her even though he was suspected of the abuse.

This amendment would prohibit an individual from being appointed a guardian or medical proxy if they have been charged with assault and battery, or neglect of the incapacitated child. In this case, the amendment would have removed any ambiguity as soon as the stepfather was charged.

Currently, the court may appoint a guardian for a person who is unable to make or communicate informed decisions due to physical incapacity or illness.

Please re-read the above with the circumstances of Haleigh Poutre’s near-brush with death in mind.

If this law had existed when she was admitted to the hospital, she’d be dead now.

That’s right. She’d be dead. Jason Strickland, motives aside, would have had no standing to challenge the DSS-appointed guardians in court. Haleigh Poutre’s death would have proceeded smoothly, efficiently and – most important of all – quietly.

It’s easy to see how this prevents the State from being embarrassed in a similar way in the future. It’s less easy to see – using Haleigh Poutre’s story as the rationale – how this is seen as furthering the “best interests” of children.

And, while the abuse of Haleigh was especially horrific, this bill strips all rights in medical decisionmaking from parents who haven’t actually been convicted of anything – and the bill strips those rights even from those charged with any level of neglect.

Please read the entire article at the Globe. As usual, I’ve devoted so much time to the bad stuff, that I have no room for the good stuff. And there’s plenty of that in the article. Beyond her family, she lives and engages in a larger and accepting world, collected some unexpected supporters along the way, and made some amazing progress. For some happy reading, go check out “A new life for Haleigh.”