Letter Asks Amer. Psych. Assoc. to Condemn Torture – Against People with Disabilities

advocacy, Our News & Commentary Blog, professional accountability, torture

In August, the American Psychological Association (APA) made some news when it passed a resolution affirming that its members shouldn’t be involved with “Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment” toward those termed “enemy combatants.” Many of us who are familiar with practices that are implicitly sanctioned by the APA took note of the narrowly-defined class of individuals who were affected by this document. So, a lot of us applaud the stand against aiding torture and cruel treatment of state prisoners, but aren’t surprised that the cautions aren’t applied to people with disabilities.

Recently, Mother Jones magazine became the latest member of the media to shine the spotlight on the cruel and inhumane treatment inflicted on students with disabilities at the infamous Judge Rotenberg Center in its feature story “School of Shock.” Here’s an excerpt of what goes on at the school, under “programs” that psychologists sign off on:

Employees shocked him for aggressive behavior, he says, but also for minor misdeeds, like yelling or cursing. Each shock lasts two seconds. “It hurts like hell,” Rob says. (The school’s staff claim it is no more painful than a bee sting; when I tried the shock, it felt like a horde of wasps attacking me all at once. Two seconds never felt so long.) On several occasions, Rob was tied facedown to a four-point restraint board and shocked over and over again by a person he couldn’t see. The constant threat of being zapped did persuade him to act less aggressively, but at a high cost. “I thought of killing myself a few times,” he says.

The reason we’re writing about this is that Derrick Jeffries has written a letter demanding that the prohibitions the APA extend the prohibition on participation in torture and cruel, degrading treatment to everyone, not just state prisoners. Derrick is a person with Asperger’s Syndrome, a parent of a child with Autism, and the brother of a sister with Autism.

His letter is posted in its entirety at disabledsoapbox blog and is titled “A Call for Ethical and Unprejudiced Leadership and Practice in the Field.” He invites organizations and individuals to sign on and provides contact info for those who prefer to contact the APA themselves.

Here is an excerpt:

Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.

Not Dead Yet has signed onto this letter and believe that individuals and organizations opposed to the abuse and mistreatment of people with disabilities should do the same.

Transhumanist Suggests Doctor’s Suicide Was “Wrought” by Disability Activists

activism, bioethics, Our News & Commentary Blog, unethical ethicists

This latest confirms my impression that transhumanists have an overrepresentation of bottom-feeders and generally sleazy characters. The latest blog posting of George Dvorsky brings even his performance to a new low.

Before I get into the latest post of his, a little history is in order. Dvorsky was the source of the quote about “Ashley X” aka the “Pillow Angel” that became really popular with the defenders of the radical surgical alteration of the young girl. One example of the quote can be found in the following news story:

George Dvorsky, a director of the Institute for Ethics and Emerging Technologies, countered: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.

“The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” (emphasis added)


This mantra about matching “mental age” to body size became pretty popular and was even paraphrased by “don’t know squat about developmental disabilities but people will believe me because I’m a TV psychiatrist” Keith Ablow:

It is more appropriate, actually, for her to be in a physical body more the size to kind of match her intellectual abilities, which are so limited and that affords her a higher quality of life.

So what is Dvorky’s latest “contribution” to the “Ashley X” discourse? Unlike people close to Dr. Daniel Gunther, who are struggling to deal with his suicide, Dvorsky’s found a way to exploit the tragedy by throwing out a baseless accusation:

This is particularly upsetting for me, not just because I supported Gunther during the controversy, but because of the possibility that his suicide was wrought by undue pressure exacted on him by overzealous and vocal disability groups. (emphasis added)

As I noted yesterday in this blog, this accusation by Dvorsky would come as news to Gunther’s family who made a specific point of pointing to Gunther’s prolonged struggle with depression as the cause for his suicide – and specifically dismissed the idea that the controversy over “Ashley X” had anything to do with it.

I guess Dvorsky couldn’t resist an attempt to exploit this tragedy in an attempt to smear and possibly silence critics of the so-called “Ashley Treatment.” I guess it would be irresistible if you lack principles and any sense of shame. –Stephen Drake

Bob Kafka Replies to Robert Fine’s Defense of Texas “Futility”

activism, bioethics, futile care, Our News & Commentary Blog

The current issue of the New England Journal of Medicine features a letter from Robert L. Fine, M.D. in response to a harsh critique of the Texas Advance Directives Act by Robert T. Truog, M.D. Truog’s Tackling Medical Futility in Texas is freely available (although it might require free registration). Here is an excerpt from Truog’s critique:

On the other hand, the Texas law’s effectiveness as a mechanism for reaching closure in difficult cases is also what makes it most problematic. It relies on a due-process approach that is more illusory than real and that risks becoming a rubber-stamp mechanism for systematically overriding families’ requests that seem unreasonable to the clinicians involved. During a 2-year period at Baylor Health Care System, for example, the ethics committee agreed with the clinical team’s futility assessment in 43 of 47 cases.

This week, Fine, a major proponent of the “futility” statute in Texas, published his response:

These disputes occur not between physicians and patients but between physicians and families. Some families are trapped in normal psychological responses to bad news, and others are divided. Some have dubious motives, and some engage in magical thinking. Ultimately, physicians must choose between the easy path of acceding to the family’s medically inappropriate request and the hard path of undertaking further committee review and possible unilateral action. We should respect the family’s preference when possible, but we should never use a patient as a means to the family’s end if the patient does not benefit.

This problem will not go away, but after 8 years of practice, the Texas process remains the best approach when family requests conflict with professional obligations at the end of life.

As much as we appreciate Truog’s criticisms of the Texas Advance Directives Act, we thought it would be more interesting and useful to get the reaction of Bob Kafka, who has been leading efforts of disability advocates and activists in Texas to get the law in that state changed. Here’s what he said:

Dr Fine illustrates the arrogant “god like” attitude that unfortunately many in the medical community have about anyone or any consumer involved process that questions their decision to withdraw treatment that results in the death of the individual.

Though each individual case is different and presents many complicated medical issues the underlying reality is that the Texas law allows doctors to overide the stated wishes of the individual and/or the family. The ethics committee have no outside public member and is composed of the doctors peers who work at the hospital. All advocates were asking was to have adequate protections in the law. Dr Fine led the political juggernaut that killed legislation last Texas legislative session. The fact is when a person’s life is at stake there should be a presumption for survival. In Texas however you get more protections and appeals if you are on death row than you do under the Texas Futility Law.

Bob Kafka
NOT DEAD YET of Texas
Don’t Mourn – Organize!

New Yorker: “Silent Minds” – article on PVS research and consciousness

life-ending decisions, Our News & Commentary Blog, research

(Thanks to Denise Karuth for the heads up on this)

“Silent Minds” by Jerome Groopman is in the latest edition of the New Yorker magazine. It’s a summary of the research into the consciousness of people labeled with persistent vegetative state (PVS) and minimally conscious state (MCS). Much of it will be familiar to readers of the NDY blog and our old website. Groopman provides a pretty comprehensive overview of the research over the past ten years, but the way he states the research is odd. The way in which he states the research in the late 1990s suggests that the problem at the time was misdiagnosis of consciousness when there was none, rather than misdiagnosis of PVS in a person who was conscious:

According to several American and British studies completed in the late nineties, patients suffering from what is known as “disorders of consciousness” are misdiagnosed between fifteen and forty-three per cent of the time. Physicians, who have traditionally relied on bedside evaluations to make diagnoses, sometimes misinterpret patients’ behavior, mistaking smiling, grunting, grimacing, crying, or moaning as evidence of consciousness.

That is really misleading. One of the studies he’s referring to here is the 1996 study by Andrews et al published in BMJ. Here are the results from the study:

Of the 40 patients referred as being in the vegetative state, 17 (43%) were considered as having been misdiagnosed; seven of these had been presumed to be vegetative for longer than one year, including three for over four years. Most of the misdiagnosed patients were blind or severely visually impaired. All patients remained severely physically disabled, but nearly all were able to communicate their preference in quality of life issues–some to a high level.

But that’s not all. The article makes reference to Terri Schiavo, a debate in which her life or death was on the line:

A neuroscientist showed me a video on the Internet of Terri Schiavo, the Florida woman who spent fifteen years in what most doctors agree was a vegetative state—tests revealed almost no activity in her cortex—and whose death, in 2005, provoked fierce debate over the rights of severely brain-damaged patients. (Schiavo died after the Supreme Court rejected her parents’ appeal of a judge’s decision approving her husband’s request that her feeding tube be removed. An autopsy showed extensive brain damage.)

In spite of the reference to Schiavo and the life-and-death nature of the debate that surrounded her, Groopman proves the “elephant is still in the living room.”:

“These people with brain trauma are out of our view,” Joseph Fins, an internist and medical ethicist at Weill Cornell Medical College, in Manhattan, and a member of the Mohonk group, told me. “We ignore them, and we sequester them in places where we can’t see them, usually in nursing homes.”

If you’re thinking that maybe Fins or Groopman might get to the issue of people with brain trauma who end dead after having been “written off” and get their feeding tubes withdrawn, you’ll be disappointed. The article maintains the careful and consistent avoidance of the implications this research could have in terms of “pulling the plug.”

Given the publicized “rush to judgment” cases of Haleigh Poutre, Jesse Ramirez and Jill Finley, isn’t it about time we started having that discussion? –Stephen Drake

“Ashley X” Doctor Commits Suicide

bioethics, depression, Our News & Commentary Blog, suicide

Early reports on the death of Dr. Daniel F. Gunther didn’t have any information regarding his reasons for killing himself on September 30. The stories did spend some time talking about the controversy and his role in the “Ashley X” debate, even flirting with the idea that somehow the controversy might have played a role in his death (see end of entry).

It looks like the family of Dr. Gunther wants to put that speculation to rest. Here’s an excerpt from the latest story on Dr. Gunther’s death, in today’s edition of the Seattle Times:

Depression cited in doctor’s suicide

By Carol M. Ostrom, Seattle Times health reporter

Dr. Daniel F. Gunther, a respected physician at Children’s Hospital & Regional Medical Center whose support for a hysterectomy performed on a 6-year-old disabled girl in order to keep her small became a national controversy, committed suicide last week.

But Gunther’s colleagues and family members said Wednesday they don’t believe his suicide was fueled in any way by the case, in which he was both sharply criticized and graciously praised.

The King County Medical Examiner said Gunther, 49, died by inhaling automobile exhaust at his Seattle home on Sept. 30.

Gunther had experienced periods of depression in the past, said his brother-in-law, Michael Gunther Maher of Fair Oaks, Calif. “The family believes his history of depression is the reason” for his suicide, he said.

The article that comes closest to dancing with the idea that the “Ashley X” controversy might have played a role in Gunther’s actions is the one on MNSBC, titled “Doctor at center of stunting debate kills himself.”

chickscholar, at The Fox in the Henhouse blog, has already written some thoughts on the MSNBC story:

(responding to a quote by Art Caplan in which he says “You just can’t know what leads people to suicide.”)

What would happen if we actually opened up the whole question to discussion, rather than closing it down? If Arthur Caplan had asked simply, “What do we know about suicide?” rather than “You just can’t know what leads people to suicide,” we might actually have given ourselves space to consider how institutions of all kinds (press, bioethics, pediatrics, parenthood, the law) let something crucial escape their deliberative machines. And perhaps we would be able to step outside the tidy institutional structure of the dominant model of bioethics, whose procedures risk framing situations with such linear clarity that all the disturbing ambiguity escapes.

Read the rest of what she has to say here. –Stephen Drake