Wednesday, February 3, 2010

Terri Schiavo And A New Study That Looks at the Vegetative State.

One study, three sources. I'll spend more time analyzing the study tomorrow but in the meanwhile, let's use the case of Terri Schiavo and see how each publication addresses the study. I'll also track down commentary at pro-life blogs tomorrow to see how the study is discussed.

The research inevitably raised questions about patients such as Terri Schiavo, the Florida woman in a persistent vegetative state whose family dispute over whether to discontinue her care ignited a national debate over the right-to-die issue that eventually led to congressional intervention. Schiavo's brother, Bobby Schindler, said the new study highlights the limits of medicine to provide an accurate diagnosis.

"They are completely unreliable," Schindler said in a telephone interview. "I wish this could have been used on my sister to see what could have been done to help her."

But Owen, Schiff and other experts stressed the research does not indicate that may patients in vegetative states are necessarily aware or have any hope of recovery. Many, including Schiavo, have suffered much more massive brain danger for far longer than the patients in this study.

"In some cases, the damage to the brain is so severe that it is simply inconceivable they could produce any responses," Owen said.

As many as 20,000 Americans are in a vegetative state -- meaning they are alive and awake, but without any sense of awareness, while 100,000 to 300,000 are in a related condition known as a minimally conscious state, in which they exhibit impaired or intermittent awareness.

Seattle Post Intelligencer:

They also noted that the positive signals appeared only in people with traumatic brain injury - not in patients whose brains had been deprived of oxygen, as can happen when the heart stops. Terri Schiavo, the vegetative woman at the center of a national controversy before her feeding tube was removed and she was allowed to die in 2005, suffered oxygen deprivation.

The new work, published online Wednesday by the New England Journal of Medicine, came from researchers in Britain and Belgium. One author is Dr. Steven Laureys at the University of Liege in Belgium. He made headlines in November by showing awareness in Rom Houben, a 46-year-old man who had been diagnosed as being vegetative for 23 years. (Houben was excluded from the new study because he could not keep his head still enough in the brain scanner to produce a usable scan; his awareness was revealed by bedside behavioral tests).

The New York Times:

Nor does the finding apply to victims of severe oxygen depletion, like Terri Schiavo, the Florida woman who became unresponsive after her heart stopped and was taken off life support in 2005 during an explosive controversy over patients’ rights.

Moreover, experts said the new test was not ready for wide use as a diagnostic tool; serious technical challenges remain to be worked out.

Still, the experts agreed that the new study exposed the limits of the current bedside test for diagnosing mental state: checking whether patients’ eyes can track objects, and carefully looking for any signs — eye blinks, finger twitches — in response to questions or commands.

“I’m convinced as an observer that in these few cases, the M.R.I. technique, in these researchers’ hands, gives us a window into human consciousness that we have not had and that potentially adds to the clinical exam we currently use,” said Dr. James L. Bernat, a neurologist at Dartmouth-Hitchcock Medical Center in New Hampshire.

Labels: , , ,

Lancet Retracts Study That Started Autism-Vaccine Movement.

At Science Progress, Chris Mooney writes that the British medical journal Lancethas retracted a 1998 study it published that kicked off a movement against vaccinations for children. The paper showed that MMR (measels, mumps, rubella) vaccine could cause intestinal problems. This finding was extrapolated into conjecture that the vaccine (and others) could also cause other behavioral disorders. Mooney writes:

The 1998 paper hit the British public like a thunderclap, triggering a decline in use of the MMR vaccine as well as a resurgence of the measles. It was the opening shot in the vaccine-autism controversy that still rages today (albeit in varied forms, not all of which still focus on the MMR vaccine). But the credibility of Wakefield’s work has since taken a steady stream of hits, culminating in this last devastating blow.

That steady stream includes a number of studies that undermined Wakefield’s findings, including a debunking series in The Times of London, and 10 of the 12 co-authors of the original study backing away from it in 2004. Mooney explains why systematically disproving Wakefield’s study has done nothing to quell the anti-vaccine fury:

Let’s pause for a moment here. We’re talking about a single, small study—on just 12 children—that stirred a mass anti-vaccine movement and a trend away from vaccination that threatens public health in some wealthy counties. Already, you should be wondering how it could be possible to build so much upon such a slender reed. But if you then consider the subsequent fate of the study, and the scandal that has attended it, a reasonable person would surely conclude that the original scare about the MMR vaccine and autism had no serious foundation whatsoever.

Here’s the thing, though. It seems obvious to all recent commentators—myself included—that the latest Wakefield news will have virtually no impact on Wakefield’s passionate followers, the anti-vaccine ideologues in the UK and United States who have long cheered him on, and will continue to do so. If anything, it will probably only make them still stronger in their convictions.

Following its original efflorescence in 1998, modern vaccine skepticism has taken many other forms than a focus on the MMR vaccine. In the United States, there has probably been much more concern about the mercury-containing preservative thimerosal, which used to be in many vaccines (however, thimerosal has long since been removed from most vaccines, and autism rates have not dropped). The movement is much bigger than Wakefield; but the continuing allegiance to Wakefield, despite all that has occurred, shows that we’re really dealing with something very irrational here, what Michael Specter calls “denialism.”

Mooney, co-author of the book Unscientific America: How Unscientific Theory Threatens Our Future, cites the primary causes of “denialism” as the “remote and haughty” medical industry and “conspiracy theory thinking.”

To this list I would also add our inability as a society to discern sound scientific reasoning from junk or pseudo-science. As we’ve struggled to keep intelligent design out of schools, to promote scientific education and the teaching of critical thought, and work to curtail the media’s overzealous touting of the outrageous, our foundational knowledge of scientific practice has woefully suffered.

The mother of an autistic child understandably needs someone to blame. Unfortunately, the anti-vaccine movement has curtailed search for the real cause of autism in order to promote purveyors of junk science.

Labels: , , ,

The Death Cat: Predicting The End.

From the Globe and Mail:

“A cat with an uncanny ability to detect when nursing home patients are about to die has proven itself in around 50 cases by curling up with them in their final hours, according to a new book,” The Daily Telegraph reports. “Dr. David Dosa, a geriatrician and assistant professor at Brown University, said that five years of records showed Oscar rarely erring, sometimes proving medical staff at the New England nursing home wrong in their predictions over which patients were close to death.” Oscar, now five and generally unsociable, was adopted as a kitten. The cat spends its days pacing from room to room, rarely spending any time with patients except those with just hours to live. If kept outside the room of a dying patient, Oscar will scratch on the door trying to get in. In his book, Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat, Dr. Dosa suggests Oscar is able – like dogs, which can reportedly smell cancer – to detect ketones, the distinctly odoured biochemicals given off by dying cells.

Labels: , ,

Rebutting Pratchett's Reasonableness.

Changing the law would enshrine the idea that we can and should choose the time and place and manner of our death. Death would come under our control. Inevitably, we would use that new power in such a way as to avoid the pain and suffering which dying often entails; and we would soon be persuaded that it was a generous thing to do, because it would free up NHS budgets.

And this new cultural norm would gradually dispense with the whole object of dying, which is precisely that it is out of our control. Those who accompany the dying – as I did recently, at the bedside of my father – know that it is an incredibly profound process, the crystallisation of human life and meaning.


A good death is only one kind of death: it's when God – or Nature, if you don't believe – remains in charge of the moment, and a person surrenders to that invitation, hopefully borne lovingly by family and carers, after a gruelling journey of renunciation. That's why killing – whether in war, murder, suicide, or assisted death – can never result in a good death. God doesn't kill.

And that's why the chilly reasonableness of a planned death must never be allowed in law. Precisely because it is reasonable to jump to avoid the gruelling business of dying, a good death would soon be seen as unreasonable – and services and budgets adjusted accordingly. It is an appalling prospect.

From Austen Ivereigh in today's Guardian.

Labels: , , ,

Writer Terry Pratchett Calls for Legalization of Aid in Dying in Britain.

As Britain has struggled with the legalization of aid in dying since the summer's decision in the Debbie Purdy case, numerous notables have weighed in on subject, most recently Martin Amis. Another writer jumps in, Sir Terry Pratchett, who was diagnosed with Alzheimers two years ago. He's written an article for the Guardian that lays out his stance and challenges some of the current oppositional arguments against aid in dying.

On Suicide:

As a pallid and nervous young journalist, I got to know about suicide. It was part of my regular tasks to sit in at the coroner's court, where I learned the manifold ways the disturbed human brain can devise to die. Coroners never used the word "insanity". They preferred the more compassionate verdict that the subject had "taken his life while the balance of his mind was disturbed". There was ambivalence to the phrase, a suggestion of the winds of fate and overwhelming circumstance. In fact, by now, I have reached the conclusion that a person may make a decision to die because the balance of their mind is level, realistic, pragmatic, stoic and sharp.

And that is why I dislike the term "assisted suicide" applied to the carefully thought-out and weighed-up process of having one's life ended by gentle medical means.

The people who thus far have made the harrowing trip to Dignitas in Switzerland to die seemed to me to be very firm and methodical of purpose, with a clear prima-face case for wanting their death to be on their own terms. In short, their mind may well be in better balance than the world around them.

On Giving Up:

And so I have vowed that rather than let Alzheimer's take me, I would take it. I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the Brompton Cocktail some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with Death.

This seems to me quite a reasonable and sensible decision for someone with a serious, incurable and debilitating disease to elect for a medically assisted death by appointment.

On Coercion:

The Care not Killing Alliance assures us that no one need consider a voluntary death of any sort since care is always available. This is questionable. Medicine is keeping more and more people alive, all requiring more and more care. Alzheimer's and other dementias place a huge care burden on the country. A burden that falls initially on the next of kin who may even be elderly and, indeed, be in need of some sort of care themselves.

A major objection frequently flourished by opponents of "assisted dying" is that elderly people might be illegally persuaded into "asking" for assisted death. Could be, but the Journal of Medical Ethics reported in 2007 that there was no evidence of the abuse of vulnerable patients inOregon where assisted dying is currently legal. I don't see why things should be any different here.

On Proper Regulation:

That's why I and others have suggested some kind of strictly non-aggressive tribunal that would establish the facts of the case well before the assisted death takes place. The members of the tribunal would be acting for the good of society, as well as that of applicants, to ensure they are of sound and informed mind, firm in their purpose, suffering from a life-threatening and incurable disease and not under the influence of a third party. I would suggest there should be a lawyer, one with expertise in dynastic family affairs who has become good at recognising whether there is outside pressure. And a medical practitioner experienced in dealing with the complexities of serious long-term illnesses.

I would also suggest that all those on the tribunal are over 45, by which time they may have acquired the gift of wisdom, because wisdom and compassion should in this tribunal stand side-by-side with the law. The tribunal would also have to be a check on those seeking death for reasons that reasonable people may consider trivial or transient distress. If we are to live in a world where a socially acceptable "early death" can be allowed, it must be allowed as a result of careful consideration.

Labels: , ,

"Faith Healers" Convicted in Oregon.

Jeff and Marci Beagley were convicted today in an Oregon court for their failure to seek medical care for their 16 year old son, Neil, who died of a urinary tract blockage in 2008. The Beagley's are members of the Followers of Christ Church which prohibits medical treatment for ailments in lieu of prayer.

The case of medical neglect is not the first in the family. The Examiner reports:

The Beagleys are also the parents of Raylene Worthington, whose 15-month-old daughter, Ava Worthington, the Beagleys' granddaughter, died in 2008 of pneumonia and a blood infection that would have been easily treatable. Ava's father, Carl Worthington, was convicted of second-degree criminal mistreatment, yet spent less than two months in jail for her death.

The Beagley's defense in the case of Neil's death was based on his right as a 16 year old to deny care. Yet, the courts found that Neil was unable to make such a decision.

An unusually high number of childhood deaths among members of Followers of Christ Church recently caused Oregon to pass a law that restricts "negligent" parents from using faith healing as a defense against such deaths.

Labels: , ,

Baby Isaiah: Is Futile Care for the Living or the Dying?

Medical advancements have pushed us into a climate where anything that can be done for a dying patient often is done, and just as often without the patient's consent. What specific care a patient may wish is often not documented properly - all care scenarios are difficult to anticipate - or family members or hospitals may disagree with that wish. Grief is a powerful force; our desire to hold onto the beloved sometimes supplants what is best for the beloved.

The result is what is called "futile care": medical treatments that do nothing to improve a patient's condition and often inflict undue stress and suffering on the patient but that offer hope to the family and those involved in the process.

Alex Schadenberg at Canada's Euthanasia Prevention Coalition summarizes a recent case in that country that addresses futile care and - I think - asks us to consider whom that futile care benefits:

Baby Isaiah was born with the umbilical cord around his neck after a 40 labour in Alberta. He was not breathing when he was born but was revived and sent to the Stollery Children's hospital in Edmonton Alberta.

After approximately 90 days of receiving care, the parents of Baby Isaiah - Rebecca and Isaac May, were told that the hospital would withdraw the ventilator from Baby Isaiah.

The parents went to court to request another 90 days of care to give Baby Isaiah a chance to further improve. When speaking with Rebecca May, she made it very clear that they hoped to be able to bring Isaiah home and care for him. She understood that Isaiah may not survive very long and if he survived, that he may be profoundly disabled, but she was willing to care for him and love him, no matter what happened.

The Euthanasia Prevention Coalition has supported the wish of the May family to give Baby Isaiah a chance to improve to the point where they could bring him home.
While Schadenberg has properly and adequately explained that removing Isaiah from artificial life support would not be "euthanasia," he and his organization have strongly backed the May family in their fight against the hospital, citing the "precedent" that the case sets.

Like many other organizations around the world, Schadenberg and others have highly publicized Baby Isaiah's "struggle" as a "pro-life" cause. Schadenberg explains why:

Modern bioethics has bought into futile care theory. Futile care theory originally focussed on withdrawing treatment when it became futile, burdensome and ineffective. Over the past decade, and more, futile care theory now focusses on withdrawing effective treatment from patients that are deemed to be futile.

The ventilator is effectively providing oxygen for Baby Isaiah, who is growing and physiologically thriving with the care. The hospital and the physician view Baby Isaiah as being futile and believe that they are wasting the resource of the ventilator on a futile patient.

If the May family loses this court case consider where the issue may go next. People with alzheimers or dementia, people with profound disabilities, and more.

Next consider how such a legal precedent could be used if euthanasia ever became legal in Canada.
Schadenberg and others have tacked the term "theory" onto the end of futile care, a rhetorical calculation that has effectively been used to conflat the definition of scientific theory (set of principles that explain natural phenomena) with a theory in everyday life (a guess) - made popular in regards to evolution.

As Susan Jacoby writes, "The popular 'just a theory' argument rests not only on religious faith but on our national indifference to the specific meanings of words in specific contexts."

With this distortion, "pro-life" groups can debunk medical (and any other) science when they like in lieu of hope for a miracle from God. And indeed, medical science is not foolproof any more than the human body is uncomplicated. (Schadenberg's explanation is fraught with other exaggerations and assumptions as well: futile care is really necessary care, viable patients are removed from necessary care, Baby Isaiah is "thriving," removing one patient from artificial life support threatens other patients....)

But the real point of this post is this: Whom does futile care serve?

A clue may reside in a recent quote by Bobby Schindler, brother of Terri Schiavo and founder, with his parents, of the Terri Schindler Schiavo Foundation, dedicated to a Catholic, "pro-life" agenda of "protecting" those who have suffered severe disabilities from removal of artificial life support. Schindler stated regarding caring for those like his sister:

"They allow us to show our compassion, our love. I believe that they are blessings.

“And if you talk to families that are caring for people like my sister, they look at their loved one as a blessing – to be in this position of having to care for them – because they are completely vulnerable to us."

There's something inherently subversive about loving someone because they are completely vulnerable to you, about prolonging the life of a body for one's own redemptive sacrifice and subsequent "blessing." Schindler slips in "having to care" as an indication that the choice is not ours but presumably God's.

The foundation of this desire to love the vulnerable is, of course, compassion. But also, as medical ethics works to guide us through questions of artificial life support, I believe, it is also one of theological purpose. The "pro-life" stance that all life is sacred is on the face very noble and just. Not until applied to real life examples does the protection of that "sanctity" at all costs exemplify discrimination: opposition to contraception, women's and patient's rights, and to the wishes of the dying. It is in that opposition that the suffering of the other is imposed for the sake of one's own redemption. When "having to care" for a vulnerable person, God teaches us the benefits of unrequited love, of suffering, of patience.

I'm not able to speak specifically to the May's decision. I don't know their purpose. But when the private struggle of an infant is prolonged and made an example of vulnerability, an example of God's plan, a cause for hope of miracles and a case against some hypothetical "slippery slope" preying on the terminal, the disabled, the elderly, the compassion for a brain-dead child and their family is lost and subverted. They've become a cause, an argument against science and a justification for futile care.

That our lives are redeemed by suffering, that we are made better, indeed won to the bossom of Christ, by our pain, grief, and abject self-sacrifice is strongly entrenched in fundamental religious ideas - those currently and strongly espoused by the Catholic and Fundamentalist organizations that comprise the current "pro-life" movement.

Caring for the "least of these" should not demand prolonging their lives at all cost so that we can love unconditionally, so that we can suffer in that caring process in order to be closer to God. Somewhere in the argument the ability to accept death and the innate course of human life must figure. Our redemption must not feed on the suffering of others.

Labels: , , , , ,