British “Ashley X” – Americans With Disabilities Affirm Katie Thorpe’s Right to Bodily Integrity

bioethics, FRIDA, Our News & Commentary Blog

It had to happen sooner or later. The U.K. has its own “Ashley X” or “Pillow Angel” case making headlines right now. Fortunately, disability advocates and activists are much more prominent than they were in coverage of the “Ashley X” case. Coverage in the U.S. was dominated by transhumanists masquerading as “experts” on developmental disabilities and by the medical professionals involved in the radical surgical alteration of “Ashley X.”

Feminist Response in Disability Activism (F.R.I.D.A) has issued a statement on the U.K case that has been endorsed by Not Dead Yet:

Americans With Disabilities Affirm Katie Thorpe’s Right to Bodily Integrity

For Immediate Release:
October 9, 2007
For Information Contact:
Sharon Lamp (847) 803-3258; (847) 894-4907 cell
Amber Smock: Ambity(a)aol.com

(Chicago) The American disability rights groups Feminist Response in Disability Activism (FRIDA), with the support of Not Dead Yet, today joins United Kingdom disability groups such as Scope in protesting the planned hysterectomy on 15-year-old Katie Thorpe, who has cerebral palsy. Her mother, Alison Thorpe, wants doctors to remove Katie’s uterus to help her avoid the pain, “inconvenience,” and “indignity” of menstruation.

The clinical director for gynecology, Phil Robarts, is seeking legal approval from the UK hospital system NHS to go forward with the procedure. In the United Kingdom, such a procedure without the consent of the party involved is considered assault, so legal approval would be a first. The surgery is not medically necessary and would be painful and traumatic.

This case is reminiscent of the internationally publicized case of Ashley X, whose parents not only subjected her to a hysterectomy but also breast bud removal and growth attenuation therapy. In such cases, the parents believe that “normal” bodily maturation processes will impair their child’s quality of life. However, these cases tend to involve children and adolescents with disabilities who cannot – or are not allowed to – speak for themselves. Surgical intervention, such as hysterectomy, is not required to save the life of the child involved.

Read the rest at the FRIDA Blog…

“End of Life” – Questions and a Suggested Response for Disability Advocates

"end of life", bioethics, life-ending decisions, Our News & Commentary Blog

`That’s a great deal to make one word mean,’ Alice said in a thoughtful tone.

`When I make a word do a lot of work like that,’ said Humpty Dumpty, `I always pay it extra.’ — Lewis Carroll

Bioethicists and other healthcare advocates must be paying a bundle to the term “end of life,” using Humpty Dumpty’s logic. The versatility of the term amazes me.

I suspect that when most of the public hears the term “end of life,” their immediate thoughts are along the lines of the description from this fact sheet from the National Cancer Institute:

When a patient’s health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the patient’s care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.

In the fact sheet above, the term “end of life” is clearly applied to a person at the end-stage of an active, progressive and terminal disease. This usage is probably foremost in the public consciousness, and has a sort of “commonsense” definitional quality to it.

But a great number of dissimilar situations and individuals can be included in this term. The implicit definition of the term simply changes with the situation and the individual. Here are a couple of examples:

End-of-life decisions, that is, decisions that may intentionally or unintentionally hasten death, include decisions to use drugs with possible life-shortening effects and lethal drugs. — from Vrakking, et al. Physicians’ willingness to grant requests for assistance in dying for children: a study of hypothetical cases. J Pediatr. 2005
May;146(5):611-7.

“Important End-of-Life Case in Massachusetts Reaches Critical Point” was the title bioethicist Alicia Ouellette gave her posting on the AJOB bioethics blog – and before any decision had been made on withdrawal of a feeding tube from 11-year-old Haleigh Poutre, whose treatment withdrawal was sought by the state less than two weeks post-injury. Was Ouellette predicting the outcome of the court battle over her life with the title? The judge in the case did rule that Poutre should “pass away with dignity,” but the day after the ruling the news was released that Poutre had clearly recovered some level of consciousness. Poutre was transferred to rehabilitation and we assume is no longer an “end of life” case – for now, anyway.

I’m stopping here, but the range of situations and individuals who have fallen under the “end of life” umbrella is truly remarkable – and probably growing. As a matter of fact, I was unable to find a definition of “end of life” outside of a particular context, with the exception of Wikipedia. I won’t bother quoting it since even Wiki notes the entry lacks references and sources, which means it might be no more than someone else’s best guess as to what the term means.

So, what do we have? A term that covers people at the end stage of a terminal illness, deliberate decisions to end a life, and removal of feeding tubes from people with brain injury. While the first definition might be “commonsense,” the latter two seem to rely on a sort of circular logic. Decisions to “end a life” are “end of life” decisions simply because somebody dies – or someone is making plans to ensure their death. Unless, that is, you’re like Haleigh Poutre, who was an “end of life” case one day and a “rehabilitation case” the next.

The dominance of this term really puzzles me. Healthcare advocacy and bioethics are dominated by academics – with healthy representation from both the medical and legal professions. My own experience with medical professionals is that they tend to use very precise terminology – the popularity of this term within their ranks is a break from their standard operating procedures.

Likewise with lawyers. I remember a few years back when I was at a meeting and a law professor spoke proudly of his students who “could find ambiguity in a ‘no smoking’ sign.” Unsurprisingly, he was making a point about the importance of using concise and clear language in anything having to do with policy or regulations. I often wonder what his students would make of the term “end of life.”

This has been on my mind for awhile. I’ve asked a fair number of people in bioethics and medicine why they use this term and how it got to be so dominant. I haven’t gotten anything approaching a coherent answer from anyone so far. As I’ve said before, I’m not a big conspiracy theorist, but the alternative explanation isn’t exactly a kind one – these professionals are engaging in reflexive use of a term that is vaguely defined out of some kind of herd or pack instinct that replaces the critical thinking skills they pride themselves on.

In the animal kingdom, the rule is, eat or be eaten; in the human kingdom, define or be defined. – Thomas Szasz

For over a decade, “end of life care” coalitions in all fifty states worked on many fronts, all related to this expansive use of “end of life.” As part of that advocacy, the statutory powers of guardians and conservators were expanded, even to a degree that called for intervention of the Supreme Court in California, which declared some of those changes unconstitutional. Virtually none of these coalitions included disability advocates in their groups.

Some of us complained. A stock response we would get would be along the lines of “this is about people at the end of life, it isn’t about disabilities.”

So at the very time the term “end of life” expanded to clearly include people with nonterminal disabilities, the term “end of life” was used to justify the exclusion of disability advocates from the policy discussion table.

I don’t have a solution, but I have a suggested response that disability advocates and activists can make:

Stop using the term “end of life.”

Just stop. Don’t use it. Not in conference proposals, articles, everyday conversations. Nowhere, except maybe in an article like this one in which you can put scare quotes around the term.

Instead, insist on precise and accurate terminology. Insist that instead of “end of life,” we specify if we’re talking about surrogate decisionmaking, palliative care, treatment withdrawal, treatment refusal – so we can all know exactly just what the hell we’re talking about. And when we all know what the hell we’re talking about, rationales for excluding disability advocates from the relevant policy discussions become harder.

“End of life” is a term better suited to the realms of marketing than policy discussions. And if we in the disability community collaborate in this endeavor, we risk being collaborators in our own exclusion – and in the worst cases, our own extermination. –Stephen Drake

FDA, Lack of Oversight and Doctors Who Break the Law

FDA, Our News & Commentary Blog, professional accountability, research

As usual, I’m a little late catching up with some of the news.

Last week, Art Caplan emailed me a link to his latest column, describing a disturbing report issued by the Department of Health and Human Services. As usual, when writing on this topic, he is right on target in describing the problem:

A new report from the inspector general of the Department of Health and Human Services paints a very grim picture as to how well the FDA protects Americans who are subjects in human experimentation. The FDA is called on the carpet for not knowing how many experiments are actually being done in the United States. The report also faults the FDA for inadequate audits of research sites and a failure to ensure compliance with its orders when FDA inspectors find something amiss at a research site.

The problems discussed in the report are not new. They have been festering for years.

Caplan doesn’t give a clue as to just how many years this has been in the making, but I’ll add a little more info. At least some of this slide was well-documented during the Clinton administration, during which the FDA inexplicably expanded “nonconsenting” research at a time when it was clear that many researchers weren’t protecting research subjects (the link goes to a page with two articles – the quote is from the second article, written in 1998):

“According to investigative reports from a couple of years ago, the FDA’s own data indicate that about half the medical researchers they have monitored (after the fact) had significant problems in terms of documenting informed consent or giving enough information so that consent could be truly informed,” Drake adds. “It seems we are giving further powers to a group that has a shitty track record of obeying already existing rules.”

It’s obvious that was sliding during the Clinton years is sinking under the Bush administration, and that things have gone from very bad to almost worse than one can imagine.

Like I said, I’m late on this. The Medical Humanities Blog, Pat Bauer, and others wrote on this last week. Bauer’s blog entry was the one that really grabbed my attention, with this:

The New York Times account documents the case of a woman who tried to withdraw from a research study only to be imprisoned against her will and dosed with the experimental drug over her objections. Although federal authorities were notified, an FDA inspector did not arrive at the research facility for more than nine months and the official letter of warning from the FDA did not come until more than two years after the woman’s imprisonment.

Wow. No one else that I read mentioned that. I went to the NY Times article “Report Assails F.D.A. Oversight of Clinical Trials” to get the full account:

The case of Audine Graybill demonstrates the flaws in the system. According to the F.D.A., in the spring of 2005, she decided to try an experimental drug to treat mania associated with bipolar disorder. The consent form that she signed on May 29 stated that she could change her mind at any point in the study.

She checked into High Pointe Healthcare in Oklahoma City, a psychiatric center owned by a psychiatrist, Dr. David Linden. On June 3, Ms. Graybill changed her mind and asked to leave.

Dr. Linden refused to let her go.

On June 6, she was given the experimental medicine. Ms. Graybill’s lawyer, Anthony Sykes, obtained a writ of habeas corpus for her to appear in court and took the writ to the hospital, where the staff refused to honor it and said it would not give it to Dr. Linden, Mr. Sykes said.

Mr. Sykes tracked Dr. Linden to another office and had him served with the writ, Mr. Sykes said. Within hours, Dr. Linden’s lawyer called Mr. Sykes and said Ms. Graybill was free to go. Mr. Sykes took her home on June 7.

Ms. Graybill could not be reached.

More than nine months later, an F.D.A. inspector appeared at Dr. Linden’s research center and uncovered myriad other problems.

The agency sent its warning letter more than two years after Ms. Graybill’s experience.

Last November, the Oklahoma Board of Medical Licensure and Supervision suspended Dr. Linden’s license for three months because he had sex with two patients and gave them genital herpes infections, according to board records. Dr. Linden, who also owns a psychiatric center in Las Vegas, did not return repeated telephone messages.

Dr. Linden has conducted clinical trials for most major pharmaceutical companies and continues to do research, according to his Web site.

OK, I concede that the FDA has to increase its oversight and that it needs to investigate complaints quickly. If the complaints are valid, there should be actual consequences.

But what happened to Ms. Graybill isn’t just a “regulatory” matter. It seems to me that there should have been a criminal investigation – possibly for kidnapping (depending on the Oklahoma definition for that crime), assault (for the injection of experimental drug she’d refused) and possibly other charges.

After all, it doesn’t look like the Oklahoma Board dealt with these allegations. And the discipline he received for other misconduct was only a temporary suspension – in that one state. We can safely assume the Oklahoma suspension didn’t affect his practice in Las Vegas.

While we wait for Congress to adequately fund the FDA, for medical researchers to show uniformly ethical behavior, for the Bush administration to decide some regulations should be enforced, and some other things that might not happen any time soon…

Maybe when a doctor does something as was allegedly done to Ms. Graybill, we shouldn’t bother calling the government inspectors. Maybe it’s time to call the police.

The publicity accompanying a kidnapping charge against a researcher just might have a “chilling effect” on similar unethical and illegal behavior. Sometimes, a chilling effect can be a good thing. –Stephen Drake

The Problem of For-Profit Health Care Includes Long Term Care Services

ADAPT, long term care, nursing homes, Our News & Commentary Blog

Some who agree with Not Dead Yet on assisted suicide and euthanasia issues question and even criticize our orientation toward the health care system. This isn’t a forum for exploring overall health care policy in depth, but a few basics are worth mentioning.

The simple truth is that the primary mission of our nation’s for-profit health care system is to maximize profits, or income minus expenses, for shareholders and other types of owners by only spending as much on actual health care as the health care providers can get away with. This simple maxim was affirmed in a recent letter to the editor written by the former head of the national nursing home lobby (deceptively named the American Health Care Association), Paul Willging, in response to a September 23rd New York Times article, “At Many Homes, More Profit and Less Nursing.” In his letter, Willging, now associate director of program applications, division of geriatric medicine, Johns Hopkins University, wrote:

Your article confirmed an opinion I have held for some time. Even as past chief executive of the American Health Care Association, I began to suspect a possibly inherent contradiction between publicly traded and other large investor-operated nursing home companies and the prerequisites for quality care.

Can the investor’s focus (short-term profitability) simultaneously allow a comparable focus on the patient? I think the answer has to do with time frames.

Unfortunately, for many investors, those time frames are short. Earnings growth, quarter after quarter, is often paramount. Long-term investments in quality can work at cross purposes with a mandate for an unending progression of favorable earnings reports.

This is not to deny the existence of quality-oriented corporations. I see in many of them an increasing recognition that the value of the product is indispensable, if only for legislative and regulatory success. Your article suggests, however, that many of them still “don’t get it.”


Unfortunately, back when we in ADAPT began protesting AHCA and Willging in 1990, he used his business knowledge to oppose our civil rights and human rights mission.

The NYT article to which Willging responded focused on a growing trend involving the purchase of nursing homes by large private investment groups which are not subject to the disclosure requirements of publicly traded companies. After examining data available from the federal Centers for Medicare and Medicaid Services, the NYT analysis showed that these homes “have cut expenses and staff, sometimes below minimum legal requirements” and that these homes “scored worse than national rates in 12 of 14 indicators that regulators use to track ailments of long-term care residents, . . . include[ing] bedsores and easily preventable infections . . ..” The article included examples of resulting resident deaths.

So what about the regulators’ response to all this data? It seems that these private investment companies are very clever about using complex layers of corporate structure to both siphon profits and evade accountability. The owners create separate companies to collect their loot in rents and fees, leaving the company that operates the nursing home on a daily basis “holding the bag.” One private investment company executive defended this industry strategy as follows: “Lawyers were suing nursing homes because they knew the companies were worth billions of dollars, so we made the companies smaller and poorer, and the lawsuits have diminished.”

The health care system’s lack of accountability, and never-ending pursuit of ways to further insulate individuals and companies from responsibility for their actions, is perhaps the most significant recurring theme of this blog/web-site. One other way the nursing home industry pursues its interests with policy makers is through political contributions. On these and all nursing home related issues, I highly recommend the work of Steve Gold, an attorney who represents both ADAPT and Not Dead Yet.

No version of the health care system treats people with disabilities well [yet], but we’d rather pursue the goal of full disability respect and inclusion in the context of the fight for health care justice for all. In many health care justice rallies that focus on acute care, I’ve joined the chant, “People Not Profits,” but not all have recognized that this applies equally to long term care. The disability rights movement is sounding the alarm, but for us reform does not mean throwing more money at nursing homes. It means implementing our civil and human right to home and community based services that maximize consumer control while meeting individual needs. This is the solution to the “problem” of the coming wave of aging baby boomers, by the way, not euthanasia.—-Diane Coleman

Time for a Little Humor

humor, Our News & Commentary Blog, satire

It sometimes surprises people that we value humor here, but we’re grassroots activists who thrive on irreverance and an appreciation of the absurd. As we say in the introduction to the “Humor” section of our website:

…we maintain that humor is a great defense in terms of our stress level, and it can be used offensively as well. We’re fans of the famous — or infamous — community organizer Saul Alinsky. It’s no accident that he considered “irreverence” and “a sense of humor” as two extremely important qualities in activists and organizers. The ability to ridicule and laugh at the bigotry and “better dead than disabled” rhetoric that pervades our world keeps us fresh and ready for the new day and the next step in the struggle.

Finding topical things that cause those of us around here to laugh are a cause for celebration. This latest is from The Onion – “America’s Finest News Source:”

Suicide Note Makes Convincing Case

(excerpt)
SHERMAN OAKS, CA—Though friends and family of Michael Swinton, 15, were initially devastasted upon hearing the news of his recent suicide, many agreed Thursday that the explanatory note he penned prior to his death made surprisingly compelling points supporting his decision to take his own life.

“At first, all I could think was what a tragedy it was that he’d thrown away his life like this,” said Swinton’s mother, Debra. “But I was ultimately swayed by the part in which he talked about how he no longer wanted to be an emotional burden on everyone, and how everything would be easier if he were gone. It’s hard to argue with that kind of logic.”

What struck me is how skillfully the Onion staff combined the traditional coverage of the suicide of a teenager with the increasingly popular story that validates the suicides of old, ill and disabled people. The result is painful – because we have seen these quotes and sentiments before – but they’ve been put into an unexpected context.

This isn’t the first time that the staff at the Onion has shown it’s skill at satirizing stock coverage of one of our issues. For example, their 1997 article, ‘Vehicular Manslaughter Doctor’ Assists In 23rd Doctor-Assisted Vehicular Manslaughter, perfectly captures a typical maintream media treatment of Kevorkian, down to the “experts” quoted and the types of things they say:

(excerpt)
GRAND RAPIDS, MI—Dr. James Munson, known to millions as the infamous “vehicular manslaughter doctor,” participated in his 23rd doctor-assisted vehicular manslaughter Monday, running over an 81-year-old Michigan woman.

Munson, who was arrested and charged with first-degree vehicular manslaughter in the incident, hit Mildred Peters of Portage, MI, with his 1994 Ford Escort in a supermarket parking lot, killing her instantly.

“She was clearly in terrible pain,” said Munson, who did not know the woman. “She was moving very slowly, and it was a struggle for her just to push the shopping cart to her car. I don’t even think she would have been able to lift her groceries into the trunk without help. All this woman wanted was to die in a dignified, painless manner. Thank God I was able to give her that chance.”

So read, enjoy and laugh a little. We’ll get back to being serious tomorrow. –Stephen Drake