Saturday, May 21, 2005

Terry Schiavo
Theresa Schiavo (Schindler Family/AP/Wide World)

I don't know about you, but I got thoroughly sick of the whole Terry Schiavo thing while it was happening --- which is unfortunate as I think I lost sight of the fact that this was about a human being who deserved far more than what was happening while this was in the news. Who was wrong, the parents or the husband, what was the real issue here as the right and left
went to war over this woman's body? My problem with the whole thing was that I was never sure if I had the full picture on this as first I didn't think it was any of my business, and second it was hard trying to get past all the histrionics thrown out by groups who were using Terry's situation as a stump for their particular issue.

Joan Didion has written an excellent article about Terry Schiavo and this circus which has swirled around her, The Case of Theresa Schiavo, which can be found in The New York Review of Books. She tries to sift through all the information that's available regarding Terry Schiavo and the whole sordid mess she was put into, laying out what it seems we did know and what some have guessed (for instance, there's an assumption that Schiavo had heart failure due to excessive dieting, and while this would have caused the heart failure which put her into a coma, it's not clear that this did it.) It also clarifies some of the players on both sides of this issue at the familial level. I'm not nearly so comfortable with the husband and his motives after reading this, and the parents seem to me to be far more reasonable people than I was somehow led to believe while all this was in the news.

If you're interested in trying to find a reasoned discussion of what went on in this circus that was conducted over the body of a woman who deserved better than how this all played out, I don't think you could get much better than what you're provided in this article.


Anonymous Josh Canel said...

I promise to read the whole thing, though I enter into it highly skeptical of the idea that the wrong thing was done. However, early in the article something caught my eye that seemed, well, lacking in insight.

"[Dr. Cheshire] noted that the patient had not had a complete neurological examination in nearly three years, had never had such advanced testing as positron emission tomography (PET) or functional magnetic resonance imaging (fMRI), and that in the absence of such examination and imaging there remained "huge uncertainties" about her neurological status."

Left basically unstated is why PETs or fMRIs may or may not be relevant nearly 3 years after CAT scans.

"An MRI was never recommended because, in this case and other patients in a permanent vegetative state, the CT scans were more than adequate to demonstrate the extremely severe atrophy of the cerebral hemispheres, and an MRI would add nothing of significance to what we see on the CT scans. Plus the MRI is contraindicated because of the intrathalamic stimulators implanted in Terri's brain. A PET scan was never done in this case because it was never needed. The classic clinical signs on examination, the CT scans, and the flat EEG's were more than adequate to diagnose PVS to the highest degree of medical certainty...."

I'll admit, any time someone even vaguely suggests they Terri may have been minimally conscious, I cringe. It's a prejudice, I know, but it shuts things off for me. Dissenters on this point are on about the same level as "Intelligent Design" advocates.

(Note: not that I would claim that this group includes you. I just had to voice my qualms about the article you linked to.)

5:17 PM  
Anonymous Josh Canel said...

Okay, finished with it.

I'll spare you picking it apart piece by piece, but I think Didion grossly misunderstands some of the issues, and part of her conclusion underscores that.

"The question began with the different ways in which we define a life worth living, but it did not stop there. The question had ultimately to do with whether or not there could be occasions when the broad economic and ethical interests of the society at large should outweigh any individual claim to either the most advanced medical attention (which Theresa Schiavo, outside the one procedure at UCSF in 1990, did not have) or indefinite care."

I find the first question, though not unusual, to be basically unrelated to Schiavo case. While there may very well be medical conditions worse than hers, I've seen nothing to convince me that her condition was in some grey area. Comas: grey area. (Although not grey enough for the DeLay family.) Severe, chronic pain associated with terminal illness: grey area. PVS: not grey at all to medical consensus. Indeed, speaking of "quality of life" is a red herring. One could speak of the "quality of life" of a venus fly-trap with as much authority.

The second question involves a debate that's pretty one-sided, and you can guess which side pushed it. "Economic interests?" Maybe I missed something, but did anyone really claim that Schiavo's feeding tube should be pulled because she cost too much? Or that this would be a good way to improve Medicare/Medicaid solvency?

Now, I wouldn't claim to know what Michael's motivations may or may not have been. Maybe he's a terrible guy who would rather kill his wife than accept a $1 million dollar offer to divorce her and move on. Regardless, I'd imagine most married people express their wishes more clearly to their spouses than their parents. In marriages where that is not the case, I'd suggest they get a divorce.

(Okay, I'll try to stop now. This debate gets to me, obviously. I'm more flexible on other end-of-life issues, but Terri's case was so extreme that I find it hard to believe that it became a flash point.)

6:10 PM  
Blogger James said...

Ok, I think I'm going to have to provide multiple posts to properly respond to this, nuts. Anyway ...

Wow ... ok, I think I may have been a bit misleading here in where I came out on this. I don't think, from a personal perspective, that what was done for Terry Schiavo was the wrong thing. I know were it me that's what I'd want done, and I think Didion's intention was to make the case that this whole thing wasn't as black and white as it was very often portrayed by the players involved.

I'll try and address your points in both posts collectively here as I don't seem to be able to address them individually.

The issue of fMRI (an fMRI is different from an MRI, which is what the quote in your post refers to --- an MRI by itself wouldn't detect brain function) and PET scans come down on what was the state of TS's brain. Was she truly brain dead? For as much as it may make you cringe, and the thought of myself being in such a state would indeed make me cringe, the fact remains we do not understand enough about the nature of brain injuries and how individuals respond to them to say without tools such as the PET and fMRI what's going on. They are the most clear indicators of there being any brain function and can best be correleated to some measure of normal brain function.

The argument that a PET scan was "never needed" stymies me no end. The classic test in the past for brain injury may well have been CT scans, but a CT scan is nothing more than a sophisticated x-ray and doesn't provide any substantive information about brain function. PET scans and fMRIs are specific to brain function and they're the only tools that can indicate what's going on in a brain. Saying that such diagnostic tools were not used merely is to state that the only way to definitively comment on the state of Terry's brain is with those tools. Now having been able to use them the end result may well have made the situation even more horrific, to wit her brain is indeed functioning and is not clinically "brain dead". That raises the question as to what should be done with a person in such a state, and what was done in this case I don't have a problem with but it's easy to write this off with "We tested ten years ago with the tools available to us then, we don't need anything more", and I'm sorry, that's not true and was indeed self-serving to Michael Schiavo.

Now here’s where I disagree with you. That she may have been “minimally” conscious is an important point, and I truly think it’s more than falling in line with the likes of intelligent design folks. Neurologists will tell you that the definition of what brain dead is remains an open question --- the fact is we don’t know, mostly due to the fact that until recently we didn’t have the tools (fMRI and PET scans) to see what was going on in the brain.

9:35 PM  
Blogger James said...

While some of us, especially when considering a situation such as Terri’s, would prefer to live by a general determination of “If I can’t move for myself, and I’m not responding in anything close to a normal, then I’m brain dead and please do me the favor of disconnecting the plug”, I myself believe we owe it to ourselves to be more definitive than that. Unfortunately clarifying the boundaries of something like this complicates how we deal with it, and these are complications that some of us, or our families, may not want to deal with.

Now as for Didion’s question about lives worth living, I think this question underlies a lot of what struck at the core of the whole Schiavo mess. Some of us feel that Terri did not have a life worth living, and what life there was didn’t merit the cost and burden of continuance. I tend to be inclined to feel that I wouldn’t want to live this life. That said, I don’t think that your assurance that a “persistent vegetative state” is a conclusive determination of brain dead in the medical community is correct. To say someone’s vegetative is not necessarily to say that their brains are not functioning, and in the end what is the sum total of whether we’re alive? I think that to have a brain that’s functioning in some high order (however this is defined) way is confer “life” on the person --- not necessarily a good life, but they’re alive. What work there has been in this area suggests that brain dead for people in vegetative states isn’t always quite what we term to be dead --- a PET/fMRI of a Venus flytrap would indeed show dead inasmuch as there’s nothing there to show anything living in the human sense. But when a vegetative brain shows functionality that relates to some measure of higher order processing that we can’t specifically explain in the context of this “vegetable” that we’re testing, how do we define what’s brain dead?

The issue of cost to society I also see as germane for ultimately that is how things are determined in many societies, surely in this one. At what cost do we take someone with a case like Terri’s, what is in fact reasonable? The problem is that better tools to determine the state of a brain makes what 20 years were comfortable choices of brain dead not so comfortable now. Ok, great, the brain is functioning, this person, who shows no signs of responsiveness, no interaction with the world around them, and who is for all intents and purposes in a situation of living death, is listening and a PET scan shows themselves to be functioning on some level in a normal fashion. So do we re-define what is “living”, or do we cut this off at a certain point and allow the person to die? If someone is suddenly turned into a quadriplegic, who’s only able to communicate with their blinking eyes, we would never be able to legally justify pulling a feeding tube, and if they asked for such to be done and we did it we’d be tried for murder, though many of us in this situation would indeed wish to die, and would be incredibly sympathetic to anyone who assisted someone in that situation to their death. How do we draw these lines? We’re still wrestling with that in this country, I think. I’m inclined to the idea of assisted death for those desiring it, and for living wills that support death if one is experiencing what might best be termed a minimum quality of life, but on the whole, as a society, we’re clearly still wrestling with this.

Should a husband know what his wife would want regarding a situation such as the one Terri was in? Yes, I should think he should, but then I have to say that in this situation I feel confident that there never was a substantive discussion about it and frankly, for whatever reason, it was in my head that there was. To a certain degree I feel it’s moot, Michael Schiavo was the husband and he, not Terri’s parents, and not the U.S. congress, should have the final say in the matter.

9:35 PM  
Anonymous Josh Canel said...

Thanks for clarifying, though I didn't think, and I don't believe that I implied, that you were necessarily advocating keeping Terri "alive." I just felt that the NYRoB article was less reasoned than you advertised.

I still maintain that the fact that this specific case was used as a focal point for quite real dilemmas is mystifying. Yes, there may have been some cutting edge technologies that would have given more people pause. However, my general understanding is that this was beyond a long shot.

I'll concede that my medical/neurological knowledge is limited, but I do trust medical consensus. One of my best friends is a first-year intern, probably the period of time when a doctor is most informed (though, he's not a neurology intern, "just" internal medicine), and he thought it was silly, too.

This really is in line with my abortion views, by the way. A six-month-old fetus may have brain activity, but I don't think it's activity that we are morally required to preserve. As a materialist who doesn't believe in things such as souls or spirits, I feel as though I must draw my lines at some level of consciousness, and Terri was far beyond that line.

6:59 PM  
Blogger James said...

A lot in your last comment, again inviting some thought and meriting response.

Indeed, there are modern technologies, which are hardly “cutting edge” (fMRI and PET scans have been used for a number of years now, so neither would merit the term “cutting edge”), that push back or at least potentially push back where we define whether someone’s a viable human being or not. My point with the quadriplegic example (and I’m writing this after my wife and I just finished watching “The Sea Inside”, which was excellent --- how apropos) was that we don’t comfortably allow someone in that limited state to “die with dignity”, or to at least afford them the assistance to do so. This is a state determination, how far may these technologies which are now available to us take this, and at what point do we allow the state to determine who’s “alive” or not? But then this determination is potentially also facilitated by other technologies, to wit: What if we could make it possible for that brain to communicate in some way in the future? Where does all this go, and at what point do we say “stop”? That’s not settled.

Your first year med school friend knows what he needs to to get through the first year, I should hope, and this “might” include the fact that there’s a great deal of controversy over what someone like Terri is, in a persistent vegetative state (PVS), or brain dead? Neurologists can’t very easily draw the line on people in comas or PVS, and the Didion article, I believe, was making that point. We’d like to think there was certainty regarding Terri being brain dead and ergo there was no life to live, but we don’t know that with any certainty. That, I believe, is what has made this controversial. The autopsy is likely to be completed in the next week or so, so we’ll have a pathologist’s determination regarding how viable her brain was. Mind you, regardless of its ability to function on some “higher” level, I personally don’t think the quality of her life was such that she should have been kept alive, but as Didion points out the basis for knowing her wishes in this regard were tenuous at best, i.e. in this case it was an offhand comment to a television show that would hardly seem to instill a sense of serious consideration on her part. Most of us, though, would say we wouldn’t want to live, and that’s what I think is projected onto her.

Now we’re in a totally different realm with abortion, one that also will likely be affected by technology as we learn how to sustain preemies closer and closer to conception. The issue with abortion is viability of the fetus extra-utero, and a six-month child can be sustained outside the mother. In fact as far as I’m aware the only abortions that are technically legal are those within the first trimester, unless the mother is threatened, but where might this line be drawn in the future when we’re able to sustain preemies at that line and potentially sooner? I have no clue where this will go, but I see an eventual controversy. I would think you would agree that there has to be a time frame at which an abortion is not simply a birth control option for a mother but indeed crosses over into murder for most of us would clearly not be comfortable with allowing a mother to abort at any time prior to delivery, so where is that line drawn? Again, it’s been a matter of fetal viability and that makes sense to me.

8:25 PM  
Anonymous Anonymous said...

I worked for a year with a Neurologist, who has specialized for over 30 years in care and treatment of children with chronic, long term disabilities (brain damage). Once, as I was gathering materials for him to consult with a family with 5 month old baby. I looked at the EEG results and and the scan, which showed some kind of huge, dense mass where the brain should have been. There were a few curlicues of brain tissue around the edges, but basically, the baby's brain was just a stem. The baby himself, as is often the case, didn't look that bad. He smiled and reached, coo-d and ahhh-d and looked around. The only unusual thing was the fact that he made no attempts to sit up, or raise his head, which he should have been doing by then. The mother had been told not to expect him to live very long, and she asked the doctor about this. His answer was in part, " Be careful when they tell you you HAVE to do things, like you HAVE to put him on a feeding tube. You don't HAVE to. You might want to keep in mind for the future, though, if that day ever comes, where they start talking about respirators and feeding tubes, and so forth, that if a creature isn't strong enough to feed itself, or breathe for itself, it may very well be better to let nature take its course."
As for me, I'm all for using medical technology to preserve, and even enhance life, but keeping someone alive artificially, with no prognosis of any kind of autonomous function is wrong. 15 years was way too long. You have to ask yourself, who's needs were being met?

12:37 AM  
Blogger James said...

Atmika, I agree with you, that maintaining a life for the simple fact of being able to is a wasted effort, certainly I would feel that way. But this whole thing isn't codified in our society, at what point do we say, "This is too much?" Which brings us to situations like Terri Schiavo's --- with a reasonably objective standard regarding where the line on extraordinary measures of life support is drawn, something like this wouldn't have gone on for as long as it did.

Schiavo's situation, as I believe Didion makes clear in her piece, is that there were all sorts of trip wires that were being snapped along the way in making her situation a clean one, one that wouldn't roil the controversy that it did. The mistake here, I believe, is to make the whole thing out to be simply a case of unreasonble parents vs. righteous husband --- as far as I'm concerned the parents in this situation raised legitimate questions, and the husband's basis for his actions, and for things that he did (I'm sorry, but he dropped out of that marriage a long time ago by any objective measure of whether he was married, and I am left wondering why he took this down the road he did, whereas before I "thought" it was far more clearcut) raise questions in my mind that likely will not be answered.

As I see it, the echo of the entire situation comes down to that we're still left unresolved at what point we can comfortably pull the plug on someone, when we can say that supporting a life that's not living in any substantive way is not in the interest of the person affected, and the interests of those who feel differently don't trump what should be the final decision.

9:31 AM  
Anonymous Josh Canel said...

Not to nitpick, but the friend isn't a first year medical student, but a first year intern. He's already got that M.D. at the end of his name.

I would think you would agree that there has to be a time frame at which an abortion is not simply a birth control option for a mother but indeed crosses over into murder

Actually, I'm not sure if I do. Having "qualms" about late-term abortions is a bit of a concession on my part, and one that I'll admit I haven't entirely come to grips with. I'm not sure that I find infanticide that morally abhorrant. Why? Prior to gaining any, at least minimal, linguistic ability, I'm not so sure that a brain can "think" in any meaningful way. I accept the line of birth as a division between fetus and child as a workable distinction. A workable distinction, but not necessarily a reasonable one. But that furthers the debate beyond the original compass...

8:54 PM  
Anonymous Josh Canel said...

Please keep in mind that I'm certainly not advocating infanticide. There is a visceral reaction to it on my part, but that's what it is: visceral. Whether or not it is based upon secure principles and reason is at issue.

8:56 PM  
Blogger James said...

I stand corrected regarding the intern vs. the first year medical student, but then the caveat indeed still bears weight --- should he complete a neurology residency and have been practicing for a bit (how one defines that, I'm not quite sure, alas), I'm sure he'll be well qualified to pass judgement knowledgeably on the state of the brain, and my guess is that he'll be just as frustrated with the grey areas as many are now.

I don't believe it's at all reasonable in my eyes that a mother should be given an option to terminate a fetus within days, or even a few months of its delivery. There needs to be a time line when we can comfortably say that we deem this to be a choice, not the killing of a viable human being and I think this determination is a concern, indeed should be a concern. There's a certain point at which we would in fact be indulging infanticide if a fetus were aborted for non-medical reasons only days or a few weeks shy of delivery. I mean otherwise how do you define what's living or not? Does the child have to be delivered of its mother before it's a viable human being? No, of course not, as preemies are brought to full health all the time now through technological intervention.

But you highlight a particular and important point. I do not concede to those who support abortion rights the latitude to allow a woman to terminate a pregnancy whenever she wants. At some point I believe a line needs to be drawn, when we say that what's growing here isn't simply a mass of cells that can potentially constitute a human being, but indeed is now a human being. Given the medical knowledge of the day we earlier assigned that time at three months, but then when should this line be drawn? What does it mean to be alive, and at what point does confering such bring on the full protection of the law? We've not comprehensively worked any of that out at this point, and I think it begs resolution.

9:26 PM  

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