April 21, 2014

Reliving the Terri Schiavo case.

A 13-minute video — and an article — at the NYT today:


Why revisit this controversy now? Scanning the 13-paragraph article for an answer to my question, I find the NYT variation on my question in Paragraph 7: "What, if anything, is the enduring legacy of this painful episode?" In the middle of the next paragraph, I find a key:
[W]hen she was in the news almost daily, there was a discernible increase in the number of Americans who prepared living wills and comparable directives, according to groups like Aging With Dignity, a nonprofit organization that supports end-of-life wishes.
The Terri Schiavo case was effective, like nothing else we've seen recently, in pushing people to sign those documents that will enable medical personnel to shunt them beyond that resource-consuming hospital bed. In these days of aging Baby Boomers and awareness of how we're all paying for everybody else's medical care, there's a growing interest in attaching "living wills and comparable directives" to all the pre-corpses of America.
Perhaps some politicians have learned a lesson: that these life-or-death decisions are probably best left to families and, should irreconcilable differences surface, to the courts....
Yeah, "perhaps"! I notice the phrase "death panels" does not appear in the article. There isn't even a mention of the Affordable Care Act and the recent congressional foray into the field of health care. The Act made it through Congress on the narrowest possible margin and it nearly died over the question of facilitating death.

And here's a second key to why the NYT is revisiting Terri Schiavo now:
Larger questions remain, affecting an estimated 25,000 Americans deemed by doctors to be in a vegetative state. Complicating matters are studies like those reported last week by a team in Belgium and earlier by Adrian M. Owen, a British neuroscientist working in Canada. They have found through brain-imaging techniques that residual cognitive capacity may exist in some people classified as vegetative.
That's phrased awfully delicately, don't you think? What if people start to disbelieve the story that Terri Schiavo was an unburied corpse, with a liquefied brain, tended over by sentimental parents who resisted the straightforward facts delivered by doctors? What if the scientific consensus breaks down because of actual science and we learn that those 25,000 Americans are still in there, longing — some of them anyway — to return to this life? What are we willing to spend to try to bring them back?

If everyone would sign the relevant documents before entering this state, the rest of us will not be asked these questions, because the assumption will be that whatever longing persists in the persistently vegetative is longing for death.

By the way, the NYT article begins and ends with literary riffs on the name Schiavo, which is Italian for "slave." Paragraph 1 portrays Schiavo as a metaphorical slave — "slave to an atrophied brain... slave to bitter fighting.. slave to... court hearings... to politicians...." And the last paragraph ends:
[T]he woman born Theresa Marie Schindler had no control over the powerful forces that controlled her own fate. Just as if she were a schiavo, a slave.
Is that poignant or maudlin? "Slave" was the name of the man who fought for her death. Schindler was the name of the parents who fought for her life. And slavery is a profound topic unto itself. Should it be repurposed as a metaphor? It's a facile metaphor, the literal meaning of the woman's married name, and it degrades the meaning of the word "slave," because lying inert in bed is not much like slavery, which is forced labor. Slaves are human beings with minds capable of making decisions who are deprived moment-by-moment of the autonomy that belongs by right to the human mind.

Terri Schiavo's freedom and autonomy were accorded profound respect. Her problem was her incapacity to form or communicate her choice. That's terribly sad, but it is not slavery.

47 comments:

campy said...

"Why revisit this controversy now?"

The Times must think doing so help democrats.

Mark O said...

Money and control. Everything in the Times has a Progressive agenda.

traditionalguy said...

She was not in a coma. She was in a vegetative state. What should a Death Panel do?

The answer my vegetative friend is blowing in the Socialized Medicine winds.

jimbino said...

It's great that the NYT has brought up the name Schiavo again. Maybe this time around Amerikans can pronounce it right.

Bill Crawford said...

Seems like the photo may also make this a salvo against Jeb Bush's presidential aspirations.

tim maguire said...

Who didn't think of Terri Schaivo when they read about the over-diagnosis of persistent vegetative state? But still, it is surprising that the New York Times published this story. Do they really think they've memory-holed their own editorial position on the controversy?

RAH said...

The problem with Terri was the question was she brain dead or not? Husband said she was. The hospital said she was. The parents said not.

Still her death was bad. The killed her body with starvation and lack of water. It would have been kinder to kill her with drugs like they do with prisoners

Michael K said...

The reason the case got to be such an issue was the conflict between the husband and the parents. His motives were suspect and that prolonged the controversy. Mot situations like this are solved by family and doctors, as least if lawyers don't get involved. I have had a family vote 5 to 4 to keep using extraordinary measures on a parent.

MadisonMan said...

I don't see the Living Will as a way of shunting people away from a Resource-Consuming Hospital Bed. Rather, it's a way that people can take control so that their care proceeds how they want it to proceed.

Mattman26 said...

You go Ann!

And by the way, Soylent Green is made of people.

tim in vermont said...

"Maybe this time around Amerikans can pronounce it right."

LOL

Wilbur said...

Campy and Mark O. both nailed it.

~ Gordon Pasha said...

Don't sign an advance directive. Hospital employed docs will declare you brain dead and you will be shipped off tout suite when your care cost exceeds the DRG. Have a trusted family member stay with you 24/7 and handcuff you to the bed. Capture the entire event on video and upload to every and all social media sites you can find. Publicity is your only defense.

Drago said...

Tim: "Do they really think they've memory-holed their own editorial position on the controversy?"

For leftists, history starts anew each and every day.

This is why the left never bothers to ponder the results of any of their past positions.

They simply turn to the next hypothetical nirvana and "peoples paradise" they will create.

We see this daily.

Just the other day Ann blogged about researchers and offshore nuclear reactors.

ARM chimed in immediately with his now patented (my paraphrase) 'lefties are building a great future!!!eleventy!!1!' while ignoring completely the near monolithic leftist rejection (in the west, NOT in former Soviet Union) of increasing our dependence on nuclear power.

We then had Robert Cook piping up with a slam at "profit motives" leading to problems such as the Fukushima one while ignoring, steadfastly, the astonishing level of environmental destruction perpetrated by his hero marxist pals.

In the Schiavo case, you had a really strange set of circumstances. The fellow (Terri's former husband) with the life and death power had long since left Terri, remarried with a couple kids by the new wife, and Terri's parents and family were begging to be able to care for her themselves.

Cedarford said...

The Times will bring up Schiavo because it is sort of an historical liberal celebration of a demarcation point...when the Religious extemists within the Republican ranks became more of a liability than an asset.

The recent "blurring" of what is PVS as opposed to profound coma is a distinction few care about, I think, in formulating their own end of life preferences...

Being kept alive as a corpse like Shiavo was is unacceptable to most in the general public. Being kept alive while not vegetative, but only at the level of a paramecium capable of only sensing pain...is equally non-appealing.

Some might even say the worst fate of all would be that of a person in a deep coma. A once living person - now not engaged in normal thinking or dreaming by EEG waves...blind, deaf, unresponsive to all but a few stimulae....but having enough cognition left to think "I am in a void and absence of everything and I am scared and want to die" over and over, hundreds of thousands of times.

madAsHell said...

I'm surprised the author didn't take the riff from the maiden name, and make up something relating to Schindler's list. Perhaps something like.....although she wrote the list, she failed to include her own name.

Ann Althouse said...

"I'm surprised the author didn't take the riff from the maiden name, and make up something relating to Schindler's list."

Well, that was my point. Except I'm absolutely not surprised!

cubanbob said...

Perhaps some politicians have learned a lesson: that these life-or-death decisions are probably best left to families and, should irreconcilable differences surface, to the courts...."

That might work if the decision makers have no financial interest in making the decision. Unlike Schiavo's husband. In the end Terry Schiavo was a slave, a slave to her husband's financial interests.

n.n said...

Absent a reliable statement from the victim, society has a duty to provide aid. With a statement, a person has a right to a natural death. Also, it is known that in some circumstances, a dysfunctional brain has recovered its coherence and function.

CWJ said...

C4,

Except people often recover from prolonged comas, and I don't recall any of them saying "I'm glad that's over. I was scared and wanted to die."

I'm open to any evidence you may have.

Gerrard787 said...

I thought I had exhausted all my anger towards the MY Times. Guess not.

CatherineM said...

Remember this guy you blogged about a few weeks ago?


http://www.news.com.au/lifestyle/health/swedish-man-sues-hospital-for-trying-to-take-his-organs-while-he-lay-paralysed-but-fully-conscious/story-fneuzlbd-1226875851058

jimbino said...

Tim McGuire misspells the name Schiavo, trading the e and i, probably to correspond to his lousy pronunciation.

I don't know about the rest of you, but I deliberately tune out Amerikans who can't even speak standard Amerikan.

jimbino said...

Yo CWJ,

There's a great time difference between entering into a coma and emerging from it. Can you imagine that a person might change his mind, and, if so, which of his wishes would you favor?

Robert Cook said...

My mother was a nurse and, by her understanding of the medical diagnosis of Ms. Schiavo, there was no chance she would ever recover consciousness, and the parents' efforts to keep her alive were purely selfish--not economically so, but emotionally so, as they could not accept their daughter was dead, and all that remained was her respiring physical form.

Anonymous said...

"Despite the tragedy, unnamed sources say perhaps if Terry Schiavo (slave in Italian), could have remained a Schindler (her maiden name) she just might been put on a life-saving list of some kind.

'Lists are good' said Janice Anglo-Saxon-Jones, an activist-analyst at the Institute for Social Change.

'Lists are important across all happiness indexes and in each race/class voting zone. We have the graph to prove it.'

'How can you be against a list if it achieves more democracy?' said Dr. Ricardo Lunch at the Center For The People's Health & Advocacy.

'Lists and pure democracy...what's not to like?'

While some evil, undemocratic opponents of Obamacare point to the possibility of an ex-con coming to your door to put your name on a list, even if you live on the Upper West Side or in Greenwich, this is far-fetched.

'A bunch of bored, partisan bureaucrats will never misuse any list even under times of great political stress' said Professor Hans Von Klingenhoff at the Newest School. 'Democracy is achievable in our lifetimes. Like a Macy's Day balloon rounding the corner, the people's effort secures the balloon'

'But that street is Wall Street unfortunately, so you do the math.'

Some skeptics have cautioned the list will probably be waved and carried about by politicians slapping each other with the list and overseen by an increasingly powerful executive branch with access to more technology.

'There are real concerns here' said some racist, classist, homophobic, coal-fired fat-cat throwback, waiting around in the heartland for the second-coming of Jesus and a heart-attack ...

Ann Althouse said...

"My mother was a nurse and…"

So long-distanced diagnosis of the sort that Bill Frist was ridiculed for engaging in… because he reached the wrong answer?

Ann Althouse said...

"the parents' efforts to keep her alive were purely selfish--not economically so, but emotionally so"

Let's talk about how emotion and economics influence people's preferences, but then talk about all of them. The husband and the hospital, the insurance companies, the govt, etc etc.

Be consistent and coherent. That's what I want to see.

Ann Althouse said...

The husband wanted to move on with his life, perhaps. Maybe he had some rejection of her in her extreme disability.

That's emotional too.

Who was not "selfish"?

tim in vermont said...

"but having enough cognition left to think "I am in a void and absence of everything and I am scared and want to die" over and over, hundreds of thousands of times."

Thanks for clearing up that our life is a novel and you are the omniscient narrator. I don't suppose you would be forthcoming with any stock tips or lottery numbers to be?

Cedarford said...

CWJ said...
C4,

Except people often recover from prolonged comas, and I don't recall any of them saying "I'm glad that's over. I was scared and wanted to die."

=====================
Medical articles suggest that recovery from long-term coma is exceedingly rare. It has some chance up to about a week for some conditions, and 6 months for a young person impacted by trauma...but after that, the stats are grim.

There is also a public misconception that the body and mind are in some stasis and not progressively deteriorating in a coma. Truth is that the body does waste away, even with tubes. Limbs become contracted and misshapen, muscle wastes past the point of recovery. Bones spongify or actually dissolve away in whole or part.
The autopsy on the Schiavo husk showed only partial hand, rib, facial, wrist, foot bones were left, same with spinal and neck vertebrae. While major larger bones like femurs had spongified and could no longer bear weight.
Typically, the PVS or long term Coma cases or complete dementia Alzheimers ones don't last more than a few years before they succumb to aspiration pneumonia, sepsis, bedsore infections leading to sepsis..

The changes are profound and irreversable.

1. People do not recover from long-term comas. It is most unusual, certainly not "often".
2. The rare few that do are likely to be quadriplegics.




Cedarford said...

Ann Althouse said...
"My mother was a nurse and…"

So long-distanced diagnosis of the sort that Bill Frist was ridiculed for engaging in… because he reached the wrong answer?

========================
Ann, Ann! There is a difference between a diagnosis that depends on a doctor, APRN, or qualified tech examining the patient or test results....and Frist's lame diagnosis by videotape.

Once diagnosis has been made, qualified medical people like Cookie's mother are in an absolutely valid position to tell others what the official medical diagnosis made means to recovery, or if it is non-reversable, if it is a terminal diagnosis, and so on.

Big Mike said...

Terri Schiavo's freedom and autonomy were accorded profound respect.

I'm not certain what this means. Her husband and hospital wanted to starve her to death and her parents turned her into a political statement of sorts. Did you mean your sentence to be read that she was free to lie in her bed and slowly die if she couldn't grasp a spoon and feed herself? I'm with RAH.

I do like your comments between 12:20 and 12:21. It's hard to find anyone unsullied by this case. Terri's parents deluded themselves into finding cause for hope (or did they?!?) and edited a video clip to make it seem the woman was at least marginally responsive to external stimuli.

The husband and hosital came across motivated purely by financial considerations. If Terri was in a persistent vegitative state, why wait until the insurance money ran out? Awfully suspicious timing.

No glory there. None at all.

Nathan Alexander said...

Everyone who sided with Mr. Schiavo against Terri's family, everyone who claimed that religious people were illogical to want to let Terri live cited one major point: her brain damage was such that her brain was half the size of a normal brain, and this was not only irreversible, but precluded any consciousness at all

To the best of my knowledge, not one person who said Terri should be euthanized addressed the example of the 44-year-old French civil servant who's skull was filled with fluid to the point that his brain was only about 4 mm thick. Or the boy who virtually had no brain could have an IQ of 126 and be a math honor student.

http://flatrock.org.nz/topics/science/is_the_brain_really_necessary.htm

The boy's story is in the first article. The civil servant's in the 3rd.

If they were able to have normal lives with such extreme hydrocephaly, there is no scientific reason to insist there was no possibility of Terri Schiavo retaining any consciousness at all.

But the blood lust was high: a step forward for forced euthanasia and a chance to deride religious people at the same time! People just couldn't resist. They wouldn't allow her family to care for her while we spent more time investigating and testing.

Yay, progress.

CWJ said...

C4,

I'll gladly retract the word "often." Read it again without the "often," or substitute "rarely" if you prefer. Now if you have anything to say in reply to my actual comment, I'm all "ears."

CWJ said...

Yo jimbino,

I'm sure you're responding to something, but what you wrote had nothing to do with what I meant.

What did you think I was trying to say?

Big Mike said...

Medical articles suggest that recovery from long-term coma is exceedingly rare.
...
The rare few that do are likely to be quadriplegics
.

Rare ≠ never. Likely to be ≠ always. These are common mistakes made by the mathematically undertrained.

Helenhightops said...

Her parents were willing to take her back, to take her off the husband's hands. She needed to be fed, cleaned, and turned in the bed. She must have been able to protect her airway, because she'd been alive for years, off a ventilator, without dying of massive aspiration. She wasn't brain dead.

It's important to call a thing by the right name. She was deliberatedly dehydrated to death. We were always taught that thirst is the very last drive to go. Is it humane to cause death that way? No, it's not. If it's OK to make her thirst to death, then call it euthanasia, and do it painlessly. But you can't call the thing by its name.

Lydia said...

Joan Didion wrote the best article I've seen on Schiavo, in which she examined all the questions surrounding the case, and without prejudice. Very surprising for a NY Review of Books piece.

Two things in particular that she discussed are the most disturbing to me: The first is that Michael Schiavo fought (and won against) her parents' efforts to have a functional magnetic resonance imaging (fMRI) done on Theresa to determine whether she might be in a "minimally conscious state" rather than in a "persistent vegetative" one.

And the second are all the "unknowns" in the neurological sciences:

Much is unknown here. A change in diagnosis might or might not lead to a change in treatment, and a change in treatment might or might not lead to improved response. Any response in such states will be at best intermittent, fitful, like the occasional sparking produced by a lighter with a bad flint. No one who has had even a passing exposure to brain injury can think of neurology as a field in which all questions are answerable. The “prognosis” is arrived at only clinically, after the fact, by observation of what happens. Vegetative patients whose brain injury was traumatic (a fall, an accident, an external mechanical event) are more likely to recover response than those, like Theresa Schiavo, whose injury resulted from a lack of oxygen to the brain. No one knows why. Patients who emerge from coma and show some response can later drop into a less responsive state.

Again, no one knows why. Neurologists can pinpoint the precise location of injured areas, know exactly what the functions of those areas are supposed to be, and still have no idea what actual deficits the patient will or will not experience: every brain, I was told by a neuroscientist at UCLA, is wired differently. The injured brain, moreover, can rewire itself. Neuroplasticity, to a greater or lesser but in each case unpredictable extent, can allow the construction of new circuits, new synapses. Undamaged areas of the brain can assume some of the functions of injured neurons. Whether or not this will occur can be known, again, only by observation of whether or not it does occur. Jean-Dominique Bauby, in The Diving Bell and the Butterfly, wrote that “the evolution of the disease is not well understood. All that is known is that if the nervous system makes up its mind to start working again, it does so at the speed of a hair growing from the base of the brain.”

In fact we do not even know that. The brain remains perhaps the last medical frontier. In the case of Theresa Schiavo, all that seemed clear was that a significant amount of neurological damage had occurred during however many minutes she lacked oxygen to the brain.

The Godfather said...

What bothered me about this case was that the husband had a self-interested reason to want her to die, and her parents were willing to take responsibility for keeping her alive, or "alive", if you prefer. Why not let them?

Like a lot of people, I've signed a document that gives my wife the power to decide to pull the plug on me. It's my decision that she should make that decision, so even in a vegetative state, I'm in control of my destiny.

Now, I do understand that there's a possibility, no matter how good medical science is, that I could still be conscious and still capable of being resuscitated, but the experts wouldn't know, and would recommend that the plug be pulled. As a Christian, I don't see that as such an awful thing. For me, it would mean that I enter into eternal life a little earlier than is strictly necessary. For those I leave behind, if they've made their best judgments about my care, they need feel no guilt, only sadness to lose me.

Starving the helpless to death, however, is stupid, cruel, and unnecessary and should be excluded.

Ann Althouse said...

".but having enough cognition left to think "I am in a void and absence of everything and I am scared and want to die" over and over, hundreds of thousands of times."

What if the only possible thought is I am alive and I am loved?

richardsson said...

I'm thinking about the Swedish man who had a stroke that knocked out everything but his hearing. So, he heard the doctors discussing harvesting his organs with his girl friend and was completely helpless to do anything about it. Another doctor came along and said the others had misread his x-rays.
Makes me wonder about Terri Schiavo. The Schiavo matter as a legal case ended when the Federal Appeals Judge eloquently wrote that the lower courts had correctly decided the case based on the best evidence.
But, the rest of the Schiavo matter was the nightmare to end all nightmares.
I had a little taste of that when my mother died. Two sets of doctors got into a squabbling match over a botched open heart surgery on her. They blamed me for it when I had told my mother that I would abide by her decision whether or not to have the surgery. It failed. Things didn't get settled until I went for an appointment with one of the doctors. As I approached the nurses station, he was facing away from me when he said, "...well, yes, right now, I'm waiting for the asshole to arrive." Now, I'm the gentlest person you'll ever meet, but I guess I sometimes look pretty scary. I tapped him on the shoulder and said, "The asshole has arrived." I thought he was going to jump out of his socks and shoes. After that, he quietly and politely explained that my mother's kidneys had failed and they would never work again, that the stitches in her open heart surgery had come apart, that she needed by pass surgery, a heart transplant, and on and on it went. Yet, she was still able to talk! She told me she wanted to die. I would have too. Those three months were the worst three months of my life.
Do the regime enablers really want to remind us of these things as their pet "achievement" flounders and flails?

Helenhightops said...

http://www.freerepublic.com/focus/news/1421335/posts

Finally found a copy of Dr Paul McHugh's "Annihilating Terri Schiavo" that was not behind a paywall.

"The neurologists who coined the diagnostic category PVS did so out of the best of clinical motives. In particular, they wanted to distinguish it from the “brain-dead” state, where no functional capacities—to breathe, to swallow, or to respond—remain. With “brain death,” a patient evinces no response to any stimulus. Brain monitors show no activity. Heart and viscera can carry on their automatic activity only with the aid of mechanical, ventilator-driven respiration, and will cease when it is discontinued.

By definition, then, PVS is not death hidden by machinery. It is human life under altered neurological circumstances. And this distinction makes all the difference in how doctors and nurses think about it and treat its sufferers."

CWJ said...

richardsson,

I also had difficult times during my mother's last months. And that was in spite of her having done everything she could to both informally and legally make her wishes known. Yet, whenever something happened outside of my immediate pressence, the professionals did whatever was necessary to cya, avoid responsibility, and kick the can down the road. And each time I questioned them about their behaviour, they circled the wagons tighter than any wagon train in the old west.

FWIW, I understand your experience, and share your concern. I'm sorry for your loss.

Cedarford said...

Big Mike said...
"Medical articles suggest that recovery from long-term coma is exceedingly rare.
...
The rare few that do are likely to be quadriplegics."

Rare ≠ never. Likely to be ≠ always. These are common mistakes made by the mathematically undertrained.
==================
Those untrained in the tough decisions of real life, think most are arrived at with mathematical certainty.
Nope, especially in matters involving great complication and reasonably long prognosis needing to be made for patient, relatives, insurers, the State, perhaps legal authorities.

There are always exceptions.
In medicine there are spontaneous remissions of stage 4 cancer, even cures. Exceptionally rare. But they happen. But the probabilities are such that it would be irresponsible to base decisions on false hope, do heroic and painful things simply because "just a chance may exist of a rare miracle" always justifies any pain, any cost, any suffering...

Nope, it doesn't.

Peter said...

"Death Panels" is unreasonably harsh terminology. But there will be some hardcore"nudging."

You will be reminded each time you see a physician that you have not yet provided a directive for end-of-life care, and standard forms will be provided to patients which encourage a quicker transition into that good night.

Medical ethicists will broaden the definition of "futile care," which few insurance policies will pay for.

And all this will go down easily, with little public objection. For most of it is just "nudging," and the actual denial of service (when it's defined as futile) will take place where few see it. It's difficult to know if even physician-assisted suicide would get the public's attention, so long as it's voluntary. Even if some receive increasingly hard "nudges" to check out.

The real stickiness will come in rationing medical care for the aged. If you're 85 years old, perhaps you could live with cortisone injections instead of a hip replacement? If you've lost sight in both eyes and you're life expectancy is low, perhaps we could fix just one of them? And at some point, perhaps you should be satisfied with palliative-only care? After all, a huge amount of money is spent on the geriatric, and most of them take their costly artificial hips, etc., into the grave just a few years later.

The transitions to these will be gradual, but they are also inevitable if costs are to be contained. Which means, they're probably coming.


Belbury Review said...

Brava! Thanks for dicing and slicing the disinformation article on Terri Schiavo's death.

Responding to Robert Cook: "My mother was a nurse and, by her understanding of the medical diagnosis of Ms. Schiavo, there was no chance she would ever recover consciousness"
Please watch the video of Terri Schiavo: http://www.youtube.com/watch?v=P7fulbiC7Co Sorry, but she was not unconscious.

As to why the Times is running a story on it now? Just a guess: National Healthcare Decisions Day (NHDD) was 4/16. NHDD is the project of a machine: Donald Berwick's Institute for Healthcare Improvement, Hospice Foundation of America (see also lobbyists Hospice Action Network), and Ellen Goodman's "The Conversation Project" (funded by Cambia Health Foundation, formerly Blue Cross Blue Shield, and the left-leaning Nathan Cummings Foundation). The list of resources at the NHDD site (http://www.nhdd.org/public-resources/ ) are, with a couple of exceptions, relics of the old Choice in Dying and Partnership for Caring death-with-dignity projects of the 1990s and early 2000s. A number of the principals are also on the board of C-TAC http://advancedcarecoalition.org/governance/who-we-are/ and more about C-TAC at http://belburyreview.com/wp/c-tac-hosts-dc-conference/ )