July 4, 2006

"You're beautiful."

A man's first sentence, after 19 years in a coma, spoken to his 19 year-old daughter.
He has a granddaughter now, Amber's child, Victoria, and the 2-year-old does not seem bothered by the pale man with the dark mustache and the inward-turned arms. He does not feel any physical pain, he told his parents, and he has no real sense of time. He also said recently that he was "proud" to be alive.
The man, Terry Wallis, is front-page news because he is the subject of scientific study, and the study may help us make decisions about persons in a persistent vegetative state (where 100,000 to 200,000 Americans exist). It's very rare to emerge from this condition, but if it has ever happened, people have hope that it can happen to their loved one. We all remember the hope Terri Schiavo's parents had for her. Will studying Terry Wallis will make it possible to tell when that hope is justified? Or will images of Wallis's brain be used to point out differences between him and the person you're holding out hope for. If you loved someone and saw signs of consciousness in them, would you give up because they were demonstrably different from one person who did recover?

***

Are you proud to be alive? It is quite an accomplishment.

41 comments:

chuck b. said...

Note: Wallis was not in a persistent vegatative state; that was Terri Schiavo. Wallis woke from a minimally conscious state. It's important not to confuse the two. Schiavo's brain was never going to rewire itself.

Link.

chuck b. said...

Actually, the point shouldn't be not to confuse the two, but to realize that there is a difference.

Tibore said...
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Tim said...

Damn shame they didn't starve him before this happened. Now we've got to rehash the whole Schiavo deal all over again...

Tibore said...

Whoa... Take 2. I unthinkingly used the phrase "no brainer" in my first draft, which was stupid and insensitive to boot. Here's the second attempt at my post:

-----

"Schiavo's brain was never going to rewire itself."

As I recall, chuck b., you're totally right about that: Most of that poor woman's brain actually atrophied:

Link...

So in her case, the base conditions for her brain "rewiring" itself weren't even there. But they were in Mr. Wallis's case. Money quote from the NYTimes link the professor provided:

"Ms. Schiavo suffered more profound brain damage than Mr. Wallis and did not show signs of responsive awareness, according to neurologists who examined her."

Although it is interesting to note that, in that same NYTimes article, Wallis did start out in a persistent vegitative state, then improved, whereas, for the atrophy reasons stated above, Schiavo never did. So that state covers a range of physical injuries, some recoverable, some not. Obvious in hindsight, but I'd never thought about that before.

Here's another interesting thing: Wallis recognized his 19 year old daughter. I wonder if that was an obvious conclusion because he was told she'd be coming, or if he deduced her identity by who she came in with, or (the possibility that intrigues me the most) he actually registered her presence in previous visits, but was simply unable to actually process that info until his brain improved. That's something I wish I could put to a neurologist or neuroscience researcher sometime.

bearing said...

Bear in mind that, though indeed the Schindler family did hold out (an irrational?) hope that their daughter Terri Schiavo would recover some of her abilities with therapy, that wasn't their primary motivation for wanting to supply her with food and water and to spend time by her side.

They believed food and water and companionship to be the minimum decent treatment of a human being who wasn't dead yet.

Disagree with them if you must, but it's important to remember that some people don't believe that the potential for "getting better" is the test of whether someone should receive that minimum level of treatment.

Der Hahn said...

The only essential difference between Wallis and Schiavo is that doctors didn't say it would be more 'humane' to let him starve because he would never recover.

Peter said...

There is something scarey about people who are so eager to justify starving Ms. Schiavo to death that they jump on this miricle to scream about differences, as if they know.
Being as how I am still trying to recover, fully, from a stroke last year I am quite happy that some here were not involved in any part of my care.
Yes indeed, I am proud to be alive.

Ann Althouse said...
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Anonymous said...

I dont recall any effort on my part to claim pride in being alive..Any attention is certainly not deserved.

Ann Althouse said...

Chuck: I was going by this: "Terry Wallis showed no improvement in the first year, and doctors soon pronounced him to be in a persistent vegetative state, and gave him virtually no chance of recovery, his parents said."

But there's also this: "[A]t some point after his accident, probably within months, Mr. Wallis, a mechanic before his injury, entered what is called a minimally conscious state, Dr. Schiff said. The diagnosis, established formally in 2002, is given to people who are severely brain damaged but occasionally responsive. In their good moments, they can track objects with their eyes, respond to commands by blinking, grunting or making small movements. They may spend the rest of their lives in this condition, but it is a necessary intermediate step if they are ever to regain some awareness, neurologists say."

I think in the Schiavo case, the parents were trying to asset that she was in that condition. But it didn't matter because the husband spoke for her and decided that she wanted to refuse nutrition (which she could do even if she were fully conscious).

I don't really understand what neurologists know here, since we're told they've never studied the recovered patients, and there are very few such persons. We're told they say what is "a necessary intermediate step," but I assume they haven't been too motivated to preserve hope about these patients. There's a huge number of patients, and if the chances of getting out of the state are slim, the doctors, thinking pragmatically, are going to lean toward moving them toward death.

Anyway, why does the article say that Wallis "showed no improvement in the first year" and that "at some point after his accident, probably within months, Mr. Wallis... entered what is called a minimally conscious state." Isn't that inconsistent? It suggests to me that the doctors weren't paying much attention, but the family -- as the Schiavo -- noticed things that in retrospect were identified as minimal awareness. Once the doctors saw recovery, then they say "probably within months" he was in a minimally conscious state. I'm suspicious of doctors, especially when they are dealing with the disabled. In retrospect, knowing he's recovered, they say he probably got to minimal consciousness "within months," but it doesn't seem that they gave the diagnosis "within months." You can't tell from the article, but I wonder whether he didn't have the label "persistent vegetative state" until his recovery -- at which point they say he must have gone through that necessary stage.

4:52 PM, July 04, 2006
Ann Althouse said...
And Chuck, now that I'm reading the article you linked to, I feel reinforced in what I just wrote:

"Knowing the mechanism will be important for identifying whether a particular unconscious patient could improve, says Schiff, potentially allowing doctors to target their rehabilitation efforts.

"But improvements in the care of patients could be made without putting every patient into a brain scanner, says Schiff. There is currently no system for even a bedside re-examination from 8 weeks after an initial diagnosis, despite the fact that “their whole prognosis might change”, he says.

"Wallis was frequently classified as being in a permanent vegetative state. Though his family fought for a re-evaluation after seeing many promising signs that he was trying to communicate, their requests were turned down.

“A careful bedside examination at 6 months [after the accident] would have unequivocally said he was not in a vegetative state,” says Schiff. There is a much greater chance of a late recovery from a minimally conscious state, he adds, although such recoveries are still rare. “The Wallis case will force the issue,” he believes."

So, right? He was classified, like Schiavo, as being in a persistent vegetative state, the parents wanted more evaluation, and the doctors did not do things that way. If there are 100,000 to 200,000 in this condition -- funny that the number is so fuzzy! -- it's not surprising that medical care is minimal and demands for MRIs are rejected. It's not even surprising that no one's studied the recoveries before. If you know what to look for in the brain, it would give more weight to the demand for treatment.

The medical industry has to manage our demands. And it's no surprise that they saw the Schiavo case as an important occasion for managing our expectations and making the parents seem unscientific and deluded.

Now, Schiff comes along and is shaking things up. I would guess that the medical business wishes he wouldn't. How much care do they want to give to those 100,000 patients to find the few who have hope?

chuck b. said...

Ann, you're right about the inconsistencies, which I started noticing as well after I posted.

I read this in the article I linked: "Within a few weeks [Wallis] had stabilised in a minimally conscious state, which his doctors thought would last indefinitely." Sounds like a diagnosis (of minimally conscious state) to me. That is, the doctors knew "within a few weeks [of his injury]" that Wallis entered that state. If they didn't have the diagnosis then, how could they apply it retroactively?

It would indeed be interesting to know more about the process of Mr. Wallis' recovery and perhaps we will hear more in the coming weeks.

Also, I don't have a good link handy, but I understand it is somewhat "common" for people to wake up from these extended periods of coma (or whatever), and die in a few days or weeks. Let's hope that won't be the case with Mr. Wallis.

Whether these people who've woken up and died had Mr. Wallis' ostensibly unprecedented cerebral re-wiring I don't know.

So I'm very curious about this diffusion tensor imaging, which I haven't heard of before (tho' I thought I knew quite a bit about cerebral imaging). We can easily assume the technology wasn't known 19 years ago.

I don't know what the competing medical interests are wrt/ PVS patients, but I imagine it's something they don't spend a lot of time on in medical school.

Interesting supposition about Schiff's position in the medical community (you said "business")... You may be right, but I would think if there's a useful, new technology available for indentifying and clarifying the cerebral state of PVS patients, most doctors would strongly advocate for its use. Good for Schiff for drumming up interest.

***

I just want to say (in case it was thought otherwise) that I am not necessarily opposed to feeding or hydrating someone in PVS. The pain of Mrs. Shiavo's personal and public tragedy has not abated with time. Let's be very happy for Mr. Wallis and hope for the best.

chuck b. said...

Note: Diffusion Tensor Imaging wiki.

Eli Blake said...

Why is everyone focused on the 'what was' and Terri Schiavo?

Not one person here has said what this really brings up. Scientists can study Mr. Wallis and maybe figure out HOW and WHY his brain rewired itself, and if so it is a realistic scenario that in some future day they may be able to control, stimulate and direct this process. Can you imagine the potential this represents for the future of humanity?

And a secondary thing that no one has commented on is how wonderful this is for the Wallis family, and how his daughter can now talk to him, and he to her, and how his granddaughter will know her grandfather.

And yet, people would rather focus on myopic arguments, that were rendered moot over a year ago, about a case that may or may not have been in any way comparable to this one.

I'm just shaking my head in disbelief at the direction this thread has taken.

word verification: kqren. [Karen] (Ann Quinlen?) How many of you out there arguing about the Schiavo case even recognize that name?

Eli Blake said...

Actually I take back something I said. Chuck b. in his last post did comment on how great this is for the Wallis family.

Palladian said...

How improbable is your existence! What a miracle it is to be alive!

I'm glad Mr Wallis is able to enjoy it once again.

Ann Althouse said...

Eli: Reread the first paragraphs of the post!!

Unknown said...

Cost has to come into play here.

If only 1 out of 100,000 recover, it is not worth the medical care to keep them alive.

Better to spend the money on other sick people, who actually have a chance. Like the millions of people dying in the third world who actually can be saved for hundreds of dollars worth of care.

SippicanCottage said...
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Eli Blake said...

You're right, Ann.

I was more referring to the direction the discussion had taken. You did refer to the family first, and at least touched on some of the possible medical implications of this.

Besides, I'm a little annoyed right now, and may have vented some of the frustration on your blog. My daughter won a small plastic American flag in a contest this morning, and emblazoned right there on the flag were the words, 'Made in China.' I've spent a good part of the day contemplating the irony of it.

chuck b. said...

Much more here:

Although Wallis had been in an MCS for almost two decades, the condition was only formally classified in 2002.

Doctors are often tempted to assume that the brain can only recover during the first few days or months after injury, leading them to give up on long-term patients. "They are thought to be hopeless cases," says Laureys. "But this forces us to revise the old dogma. Although this is clearly an exceptional patient, it shows that it is worth studying further." Patients with limited consciousness should not be denied care and therapy that could help them, Laureys argues.

Although the new discovery does not suggest any way to assist or accelerate the brain's recovery, it should remind doctors that such recoveries are possible, Laureys adds. "There's too much therapeutic nihilism," he says. "It's hard to find centres that are willing to accept patients and give them rehabilitation and aggressive therapy."

Eli Blake said...

downtownlad:

Cost has to come into play here.

If only 1 out of 100,000 recover, it is not worth the medical care to keep them alive.


I understand where you are coming from, but I disagree with your premise. Were cost to determine our basis for who lives and who dies, then it could certainly be argued that it is not cost effective to keep, for example, retirees alive (those who draw from Social Security rather than paying into it.) And killing people with disabilities which cost more than they will earn becomes feasible in a bottom-line driven world. For that matter, one of the biggest problem with our health care system is that in a number of cases HMO's have refused to pay for treatment of persons who have died, when they might have lived with the treatment (but they can't be sued for making that decision). For all of these reasons, I reject the idea that cost should be any consideration at all in determining who lives and who dies. Medical opinion, yes. The wishes of those involved (both the individual, so far as those wishes can be determined, and family members as established by law), yes. But cost, no.

I would much rather 1) look at ways to contain costs (such as a larger centrally located facility where more patients can be treated with the same equipment) and 2) studying cases like this so that maybe we can improve the odds over 1 in 100,000.

Does that mean that we should condemn children in Africa to die?

No, it does not, and that is where I might disagree with a conservative. Instead of the current paradigm of 'spend as little as you can to get adequate government services,' (i.e. establish the budget first) I would prefer to establish the needs first, then determine what resources are needed to meet those needs, and if necessary adjust the rates of taxation to meet those needs.

Sara (Pal2Pal) said...

The Wallis case was documented on the Discovery Channel many months ago. His mother had kept him at home in the living room and even though he was in a coma, they acted around him as if he could see and hear and participate in all family affairs. The mother had to fight the stupid social services types the whole time because, of course, they always think they know best and thought he should be locked up in a hell hole, oops I mean nursing home. Once he showed some signs of consciousness, the mother got the big wig high paid neurologists in New Jersy/New York to take an interest and he was flown to a state-of-the-art research medical facility. Just goes to show that sometimes backwoods, no education Moms who are ruled by love rather than books by high-priced, over educated pseudo experts know best.

Randy said...
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Randy said...

Eli said:

emblazoned right there on the flag were the words, 'Made in China.' I've spent a good part of the day contemplating the irony of it.

Yes, it is ironic that most plastic flag are now made in China (and that probably holds true for the past decade's production). For more than a decade before that, most were made in Taiwan. And for more than a decade before that most were probably made in Japan. ;-)

Kathy said...

If only 1 out of 100,000 recover, it is not worth the medical care to keep them alive.

Let's let the consumer make the choice about what costs are worth bearing. We don't do that now because the consumer doesn't often pay the actual cost. If this man's mom was willing to keep him in her living room for years, and didn't subject him to inhumane treatment, why is that anyone's business? Why couldn't Terri Schiavo's parents have done the same thing? Terri very likely would eventually have died without regaining consciousness, perhaps, but she would have been well cared for in the meantime and the money to pay for it was available.

Better to spend the money on other sick people, who actually have a chance. Like the millions of people dying in the third world who actually can be saved for hundreds of dollars worth of care.

Perhaps, if it were really an either/or situation. The third world has many problems that contribute to the lack of medical care issue, problems not solvable by grants of money alone. Spending money on medical care for a person in a (as far as we know) non-recoverable state doesn't take anything away from the money available for third world medical care, not when it's private parties paying.

Eli Blake said...

seven machos:

It's not so much that it bugs me, it's the irony of it. The flag, with 'made in China' actually emblazoned where it can't be missed, could represent our whole country. It's symbolic of where all of the manufacturing jobs seem to be headed.

And as for the unemployment rate being 'four percent,' that's crap.

My mother in law and my wife are both counted as 'employed.' My mother in law was forced to retire at 58 last year due to downsizing in her job, has been unable to find a job, and had to sell her home and move in with one of her kids. The only 'work' she found was substitute teaching at an elementary school (irregular, seasonal, low pay and no benefits).

My wife is 41, has four associate degrees with high honors, has worked as a temporary registration advisor and also as a substitute teacher (from both jobs she earned less than a thousand dollars last year). Because she spent twenty years as a 'homemaker' she has no recent experience, which is apparently expected if you are over forty. She has applied for dozens of jobs, including fast food, convenience store and hotel clerk, but has only gotten what I mentioned earlier. But she is also counted as 'employed' by the government, in fact she has two jobs according to them.

So if you want to claim that the unemployment rate is four percent, you can do so, if the delusion makes you feel better. But based on my family's personal experience, that's like claiming that people are eating well in Cuba, because Castro does.

Disraeli is credited with saying: There are three kinds of lies; lies, damned lies, and statistics.

Jennifer said...

This just warms my heart. Mom gets her son back, daughter gets her daddy, baby gets her grandpa.

Good for all of them that Mom made the sacrifices she did.

Eli - you're anecdotal evidence is that two people who can hardly be considered highly employable are still able to find some work? I'm sorry how is this depressing?

Eli Blake said...

seven machos:

Actually, it was redone in 1983 (and on paper unemployment dropped sharply that year, but in fact it was a slower decline). But it has periodically been redone for decades. During the depression, it peaked at about 16%, but at that time people who found odd (not steady) work were not considered employed. Neither were members of the military. Now both are. The point is, that whatever administration did it, the unemployment rate has been fudged to now where it is a highly misleading statistic.

Jennifer: You try living on one thousand dollars a year before you pass judgement and say it's not 'depressing.' Your arrogance is unbelievable.

True, I am one individual with a limited number of family members (others of whom are doing quite well), but I know of other people-- my job often causes me to meet people who are unemployed or underemployed. And maybe here is a more depressed area (in fact, I know it is-- on the reservation even the official unemployment rate is over 50% in some communities) but the idea that a person is 'unemployable' is both insulting and creates a division where there is none-- the unemployment rate is for all people, not just those with job skills that you consider 'employable.' And further, my mother in law was eminently employable-- a decades long career with the same company-- until they downsized. My wife is fortunate in that I have a full time job, although we are also helping to support my daughter who does not.

So I guess you can go from 'highly employable' to 'unemployable' in the instant it takes to sign a pink slip.

Unknown said...

Cost already comes into play. We know for a fact that certain medical screenings will save lives, thousands of them in fact, but we don't do them because of cost.

For example, screenings for anyeurisms. Very straightforward and if you find it in advance you will certainly save people's lives.

But we don't do it, because it's too expensive.

I'm not advocating killing people. But I am advocating removing life support when the cause is hopeless. Before modern medicine these people would have been dead anyway.

It's not natural to keep people on feeding tubes.

Ann Althouse said...

Downtownlad: So we're supposed to make arguments based on what's "natural" now?

altoids1306 said...

downtownlad:Cost has to come into play here.

If only 1 out of 100,000 recover, it is not worth the medical care to keep them alive.


I never thought I'd hear a liberal say this. I wish they would remember this argument when arguing about stricter safety codes in coal mines, more FDA regulations, unionizing Walmart, and free prescription drugs for everyone.

If Terri Schiavo was being kept alive on the taxpayer dollar, I would wholeheartedly agree with you. However, there were plenty of people who were donating money to her medical care - therefore the efficent use of money argument is irrelevant.

Regardless, this thread is quite instructive on how an originally heartwarming story can be so easily perverted for political points. I'll leave it to the reader to decide which side in this thread has been more reasonable.

Peder said...

Two things. 100,000 to 200,000 Americans are in some kind of vegatative state??? Seriously? That seems incredibly high to me.
And responding to seven macho's matrix, I can understand choice two even though I'm closer to choice three. My own personal fear of being in a vegatative state is that I'd be trapped in some state of awareness. For years and ever more dreary years. Irrational on my part? Probably, but that's my fear. Also, it might interfere with reincarnation.

Jennifer said...

Eli - I didn't call anyone unemployable.

The fact of the matter is that someone nearing the end of their working life and someone with no recent job experience are not going to outqualify many people in a job search. The fact that they are able to get any work at all is a testament to the strength of our economy. Even if they aren't bringing in as much money as you would like.

If you want to use your family members' experiences to extrapolate larger judgments, its a little silly to expect everyone else to address those experiences as only relevant to your family members.

Eli Blake said...

seven machos (10:31):

The point is that employment conditions are very good in this country right now.

I don't see that. Not at all. And the math doesn't add up on that either, given that about 20 million jobs were added in the 1990's and we've had about 3 million added over the past six years-- technically a loss of two million followed by a gain of five million-- (and no that's not partisan, the economy was already slowing down under the Clinton administration.) Three million net jobs created (that's according to the Bush administration figures, BTW) isn't even enough to keep up with the growth in the workforce due to population growth, and that's even assuming that none of the new jobs were being filled by means of illegal employment of undocumented workers (and we both know that isn't the case).

Eli Blake said...

downtownlad:

It's not natural to keep people on feeding tubes, but that is seperate from your original argument on cost. I have no problem if people (or their spouses, if they are unable to decide, or their parents if they are unmarried and unable to decide, etc.) choose not to live that way.

But my contention earlier is that cost should not be the REASON such a decision is made.

As far as screening for aneurisms, I'd just as soon that it be done. I suspect that if it was done on a large scale, it would be profitable for people to develop cheaper ways to do it, and even if not the economy of scale would drive the cost down (i.e. once you break down and by a nuclear magnetic imaging device, you can use it on many people.)

Ruth Anne Adams said...

To answer your question: YES!

It is better to be than not to be. But if you are not to be anymore, it is good to have been.

Icepick said...

So am I the only person who thought (based on the title) that this post would be about beer? Yes? Well, okay then, never mind....

Unknown said...

I don't believe in natural law.

But the right to life propents do. So it's fair to throw this back in their face.

SippicanCottage said...
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Randy said...

Me too, SC. Me too.