Aug 07 2008

Schiavo Revisited

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Comments: 33

Terri Schiavo suffered a heart attack in 1990 at age 26. As a result she had cardiac arrest and although she was revived the resultant lack of blood supply to her brain caused significant damage. For the next 15 years Terri remained in a persistent vegetative state (PVS), requiring a feeding tube for hydration and nutrition but able to breath on her own. PVS results from significant damage to both hemispheres of the brain. The more primitive and basic function in the deep parts of the brain and the brain stem may be intact, but the thinking part of the brain is too damaged to allow for consciousness.

Although there is nothing particularly interesting in the Schiavo case from a neurological perspective – PVS is not uncommon – in 2005 the case came to national attention. The story involved her husband, who wanted to remove her feeding tube and allow her to die, and her parents, who sought legal action to prevent the removal of her feeding tube. The conflict surrounding Terri Schiavo became a test case for the religious right’s support for right to life issues, the right of a husband to make life and death decisions for his comatose wife, the right of her family to intervene, and the role of the government in such decisions. Emotions ran high on all sides as the case touched on the right to life vs the right to privacy issue that remains very divisive in this country. A media storm ensued.

Somewhat lost in all the politics, however, were the medical facts underlying the case. Now a new study (the paper is not available without a subscription, so I linked to the press release) published yesterday online in the journal Neurology reviews the media coverage of the Schiavo case, focusing on the completeness and accuracy of the reporting. Not surprisingly, the study authors found the coverage to be wanting.

Dr. Éric Racine of the Institut de recherches cliniques de Montréal (IRCM) and experts from Stanford University, in California, and the University of British Columbia reviewed 1141 articles and over 400 letters to the editor. They found that only 1% of the articles defined persistent vegetative state, a point critical to the story. Dr. Racine also reports:

“In the course of our research, we were surprised by the amount of medical inaccuracies that these newspapers had published. Some journalists even wrote about Mrs. Schiavo’s reactions to specific words or expressions supposedly showing that she was conscious.

“Our observations show that the press capitalized on the controversy to a large extent, and selling copies mattered more than delivering scientific information. Media coverage sustained myths and false hopes.”

They also found that 21% of reports indicated that there was hope of recovery. That was the very crux of the controversy. Someone who has been in a PVS for 15 years has no meaningful chance of recovery. Sixteen separate neurologists examined Terri Schiavo over the course of the court cases about her condition, and they all agreed, after extensive examination, that she was in a PVS. The only exception was Dr. William Hammesfahr. He said that she could recover, and that his special treatment could help her. By coincidence I had previously been asked by the state of Florida to give expert testimony regarding Dr. Hammesfahr’s special treatment, which I found to be completely pseudoscientific and even unethical. This is a separate story, but the end result was that the judge found Dr. Hammesfahr’s treatment to be substandard and ruled against him. But on appeal Hammesfahr’s lawyer argued that his treatment was “alternative” and under a recent Florida statute “alternative” treatments could not be held to a standard of care.

We can suffice to say that Hammesfahr’s opinion was an outlier and there are reasons not to give it any credence whatsoever. This did not stop a major news outlet (Hannity and Colmes on Fox) from choosing him to be the source of neurological opinion in the case.

From a political perspective, the Schiavo case clearly indicated that the majority of Americans favor privacy in such issues over government intrusion. The Congress overstepped their bounds in trying to meddle in the case, and the conventional wisdom is that the affair ended the presidential aspirations of Senator Bill Frist. He heavily supported the right-to-life side of this controversy. But worse, he is also a physician, and he announced that he reviewed a video tape of Terri Schiavo and concluded that she was not in a PVS. It was generally seen as crass political maneuvering to use his status as a physician to bolster his political opinions – especially when his medical opinions turned out to be completely wrong.

From the perspective of the media, this new study supports what many of us subjectively felt – that the media focussed on the controversy and did not adequately give the scientific/medical facts around which the case turned. Many outlets even gave false, inadequate, or misleading information or relied upon cherry-picked experts to support the minority opinion. Sometimes this was just bad journalism, but often the scientific errors supported the politics of the writer or news outlet.

The neurology of the case, in the end, was not truly controversial. It was clear that Terri Schiavo was in a PVS and had no hope of recovery. The parents and others made a common error is assessing her condition. In a PVS people will still have sleep-wake cycles, they will open their eyes, have roving eye movements, turn their head and sometimes grimace or move. These actions, however, are random and not accompanied by any detectable conscious thought. It takes careful and trained observation to see that the actions are random and not directed. Casual, untrained, or emotional observation, however, typically will seek out random correlations and then confirmation bias will result in the false conclusion that the actions are conscious or are reacting to the environment.

In the Schiavo case hours of video was reviewed to find a couple of instances when Schiavo happened to turn her head when someone called her name, or when she seemed to be looking toward a visitor. However, the neurologists examined and viewed her for hours and found that her actions did not correlate with any stimulation – they were random. The occasional correlation of an action with a stimulus is just chance.

This is a common experience for neurologists. Family members commonly over-interpret such random movements, or even subconscious reflexes. It is the job of the neurologist to interpret the exam clinically, without emotion, and to explain their findings to the family in order to give them accurate information with which they can make their very difficult decisions.

And that is the final lesson in all this. There were emotional, personal, societal, and political decisions to be made in this case – and the science alone was not enough to resolve these important issues. But such questions should be informed by accurate and unbiased science. What often happened instead was that the science was distorted to suit the politics.

At least in this case there was significant closure. Schiavo’s husband, Michael, ultimately won the court battle and had her feeding tube removed. She passed away on March 31, 2005. The results of her autopsy were reported several months later – it showed that her brain weighed only half of what it should have weighed. She had irreversible catastrophic brain damage compatible with a persistent vegetative state, and incompatible with any conscious awareness or hope of recovery. (In a shocking display of the power of denial, Schiavo’s parents refused to accept the findings of the autopsy.) This was consistent with the consensus of clinical neurological opinion (putting aside the one self-promoting quack).

The entire affair should stand as a cautionary tale. When a public controversy rests upon an empirical scientific claim, it is best to listen to the consensus of scientific opinion so at least the public discussion can be well informed. It is perilous to give equal weight to a dubious minority opinion, to cherry-pick facts and opinions that support one’s politics, or to listen to the scientific opinions of politicians or those with a significant personal or ideological interest.

These lessons apply to many science-based controversies still relevant today.

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33 responses so far

33 Responses to “Schiavo Revisited”

  1. deciuson 07 Aug 2008 at 10:46 am

    to cherry-pick facts and opinions that support one’s politics, or to listen to the scientific opinions of politicians or those with a significant personal or ideological interest.

    I don’t really understand this verbal contortion around the elephant in the room. Religion.

    Nice post, otherwise.

  2. LarryCoonon 07 Aug 2008 at 11:08 am

    Steve, your first sentence said she suffered a heart attack, but the article to which you linked regarding her autopsy clarified that she did not.

  3. Steven Novellaon 07 Aug 2008 at 11:19 am

    decius,

    I disagree. I was not avoiding the elephant in the room. This is NOT about religion – it is about ideology. And ideology can be non-religious. By focusing, for whatever reason, on religion, you miss the more precise point.

    In fact, I think my statements apply well to current controversies that are not religious – such as global warming. Anti-corporate ideology on one side, and anti-government ideology on the other distort the science to their ends. As far as I know, there is no major religious dog in this hunt. And yet the ideological distortion of science is tremendous.

    I specifically did not want to make this post about right vs left, or about any particular ideology. The big picture lesson is that science should not be subverted to and distorted by ideology – whatever that ideology is.

  4. Timmysonon 07 Aug 2008 at 11:27 am

    “[U]nder a recent Florida statute “alternative” treatments could not be held to a standard of care.”

    Perhaps this is representative of the fundamental problem. Large parts of the public seem unwilling to subject their ideas to scientific scrutiny.

  5. Steven Novellaon 07 Aug 2008 at 11:29 am

    Larry,

    I interpreted that to mean – she did not have a heart attack immediately prior to her death – but not referring to her original event 15 years earlier. But I could be wrong.

    Other reports refer to her original event as a heart attack. But it is possible she had a cardiac arrest (the heart stopping) but not from a heart attack (death of heart tissue due to lack of blood supply to the heart). She is reported to have had a low potassium, which can cause a cardiac arrest. That is what led to suspicions that she had an eating disorder, which was never proven.

    It looks like there is still some uncertainty about her original event. I will see if I can find another source to comment on whether or not the original event was a heart attack specifically.

  6. jonny_ehon 07 Aug 2008 at 11:36 am

    It’s true that this is not strictly about religion, the lesson from this article can be applied to the current controversy in Canada over safe injection sites.

    Other controversies that keep popping up:
    -Pesticides.
    -Fluoride

    The anti-science luddite post-modernist ideology is just as dangerous as religious ideology, IMO. It also happens to be the more popular ideology here in Canada.

  7. superdaveon 07 Aug 2008 at 1:10 pm

    Another excellent post. I think the Schiavo case represents a good learning example for what skepticism can and cannot do. Good science should have informed Schiavo’s parents that their daughter was irrecoverable, but that does nothing to answer the question over whether or not her husband has more authority than her parents regarding the removal of Terry’s feeding tube. This is purely a social point that science can say nothing about.

  8. deciuson 07 Aug 2008 at 1:35 pm

    Steve,

    I am very grateful for your reply, and I shall try to not abuse your courtesy.

    I am willing to concede most of your points, as I now understand that you were directing your attention to the broader scenario.

    However, you explicitly addressed the Schiavo case in this post of yours, and no other. As far as I can tell, this was a controversy over euthanasia, whose participants are squarely split into two camps. One is informed by science; the other by the metaphysics of the soul, the alleged sacredness of a god-given life, the irrational hope into miraculous events, and religious dogma.
    All of the above undeniably are facets surrounding the elephant.

    It is true that politics soon capitalised on the tragedy that befell the Schiavo family, but please notice that the divide ran through the republican party, too, and not by accident along the line which separates the religious right from the more secular factions.

    Also, the members of the Schiavo family who opposed the decision never failed to mention their faith, or god, in any of their public appearances.

    If I am missing something, here, I am willing to be convinced by evidence, as usual.

    Finally, allow me to point you to two similar cases in Italy, one of which is unfolding as we speak.
    In both instances a court of law ruled in favour of the right of the patient to a dignified death, the catholic church whined and cried foul. Unscrupulous right-wing politicians rode the wave of artificial indignation, the credulous part of the populace went along and the Vatican had it its way.

    Both cases are mentioned in this article.
    http://tinyurl.com/66ygpg

    Thanks again, especially for the enormous amount of knowledge that you daily share with us.

  9. mark7300on 07 Aug 2008 at 3:25 pm

    I would be careful to frame this as a religious/secular issue. I know quite a few people who call themselves agnostic or atheist and who are very much against euthanasia.

    Their arguments are usually about the misuse of power by doctors.

    In this particular case a lot of people did not understand that being in a “coma” is not always the same thing. The way a lot of people see it, loads of people have come out of a coma after many years and so why not this lady? The details were never explained.

    On top of that there is a considerable mistrust in science and doctors.

    Few news outlets now have science writers with a science background. It shows.

  10. Groovydocon 07 Aug 2008 at 3:45 pm

    Not to sound overly callous, but I find it frustrating that there is so much drive to curb medical costs, but we are too cowardly as a society to consider futile and end of life care in the mix. I’m not advocating abandoning our helpless and voiceless, but many of the choices involved in landing people in these situations comes from lack of understanding of the realities, combined with emotion driven decision making. I think our society is in for a heck of a sticker shock when the baby boomers start overflowing hospitals and nursing facilities with family members saying “dad’s a fighter, do everything possible to buy him those last couple of weeks.”

    Ouch, maybe I need a vacation :)

  11. Steven Novellaon 07 Aug 2008 at 4:43 pm

    decious, I agree that in this case the ideology was right-to-life, and that is an issue central to the religious right, and I did mention that. But I did want to then broaden the post to the more basic principles.

    Groovydoc – you are absolutely right. maybe I will right a post about that some day. A tremendous amount of money is spent keeping people alive for another week or two (and in some cases for months or years), even when the case is medically futile. The problem is that families, and sometimes an individual, can hijack the health care system and demand extraordinary care beyond all reason.

    What we need is an efficient, fair, and cost-effective mechanism for such end-of-life controversies to be quickly resolved.

    The fact is we are rationing health care, and we will increasingly do so. We cannot afford medically futile care.

  12. Groovydocon 07 Aug 2008 at 5:14 pm

    Oh, as an addendum to my above post, there is an article about “Too Much Care” in the July Consumer Reports magazine some might find interesting. (I have no affiliation, but if this violates some policy, feel free to delete this post.)

  13. superdaveon 07 Aug 2008 at 6:11 pm

    Not to be a religious apologist, but the right to life issue is not necessarily religious. There are humanitarian reasons to feel that preserving life at all costs is the right thing to do. For example, one might feel that in the future a therapy or treatment may become viable. I know this was unlikely in Terry’s case but perhaps not in others.

  14. b_calderon 07 Aug 2008 at 8:12 pm

    Steve;

    You said Terry’s brain weighed half of what a normal brain weighs.

    How much of that loss was the result of the method of her death? Not that the real figure would be meaningful to me, but I was thinking about Gould’s remarks on weighing brains from asylums when they might have been in the asylum for reasons that included tissue abnormality or a wasting disease.

    Could you put it in perspective?

    I always thought that Jeb Bush’s real contribution to society was pushing for legal adoption of blastulas. (joke)

  15. clgoodon 08 Aug 2008 at 12:17 am

    I consider myself pro-life, but no longer religious. I’d have to say that doctors (the good ones, at least) are by definition pro-life. But I understand the warning about ideology.

    I really appreciate this post, and wish I had seen something so level-headed and informative at the time. I know not to trust what journalists write, but back then I hadn’t discovered this source. So thanks for the info. It is actually quite comforting.

    NB: Things were complicated by the fact that Schiavo’s husband was a first-class a– I mean “jerk”.

  16. varkamon 08 Aug 2008 at 2:00 am

    @superdave:

    I understand your point that there are non-religious reasons for being “pro-life”, but from a humanitarian standpoint I think that the primary point is one of autonomy; or rather respect for the autonomy of others. In other words, I’m not sure that one can come from anywhere but from a religious perspective and attempt to dictate to others what they should or should not do with matters that are primarily of consequence to that individual.

  17. Carpe Vitaeon 08 Aug 2008 at 7:44 am

    “There are humanitarian reasons to feel that preserving life at all costs is the right thing to do”

    As long as it’s your life to decide, fine.

    I personally think arguing that “preserving life at all cost” is a ridiculous statement because there is no clear cut boundary when life begins or ends. As PZ Myers aptly wrote, “When does life begin … everyone knows the correct answer is approximately 4 billion years ago. There is no dead stage in the cycle of life!”
    Life is a continuum. The “beginning” never ceased and its end is not a discrete event.

    What it comes down to is ending life (abortion, birth control, euthanasia, etc) is a value judgment, and thus outside the realm of science. I believe in individual liberty, so I think such value judgments should be made by the individual or family. That is my personal choice. I respect others decisions as long as they don’t affect me.

    “For example, one might feel that in the future a therapy or treatment may become viable.”

    Take this to the extreme and freeze everyone forever until a cure is found. You did say “at all cost”, right?

    The unfortunate reality is there are trade-offs for everything, even preserving life.

  18. daedalus2uon 08 Aug 2008 at 9:41 am

    Weight is not the property of a brain that determines its function, Dr Novella was using weight as a shorthand for demonstrating that large fractions of Ms Schiavo’s brain were irreversibly destroyed. Her brain weighed less because parts of it were missing, parts that are known to be essential in functions such as communication, reasoning and other “higher” (though that is a bad term) neuronal functions. She was in a PVS because her brain was missing the parts required to be in other than a PVS.

    What does her husband being an a$$$$$ or a jerk have to do with anything about this case?

    “At any cost” is not something that can rationally be applied to life extension without ending up in a contradiction. Ultimately the only thing that has a “cost” is human labor. Ultimately the cost of all material goods ends up as being due to labor or to capital (which is simply paying for labor of the past with interest).

    “At any cost” then means spending any amount of labor to extend life. Does it make sense to spend a years worth of labor to extend life for a day? That exchange cannot be provided to everyone.

    Making the decision of who has to work a year and who gets to have that years worth of labor spent to extend their life by one day is the essence of the problem of the cost of medical care. From a utilitarian point of view it makes no sense to spend a years worth of labor extending a life by one day while at the same time not spending a days worth of labor to extend life for a year.

  19. jedischooldropouton 08 Aug 2008 at 2:26 pm

    Thanks Steve,

    This was one of the earliest subjects I ever blogged about.
    The entire case made my head explode.

    The positive thing about it – and I hope that it had the same effect for other families on both sides of the issue – is that my family had a very clear discussion about our own desires and intentions under similar circumstances.
    My Mother even went to her doctor (who is a theist) and made sure he was in the loop, though he didn’t want to hear it, or that she wanted a DNR. (I quit using him at that time for that same resistance. While I’m sure he’d honour it, I just don’t want to have to bash heads with my doctor over WWJCD issues.)

    While an ugly issue at the time, I think the controversy actually helped a lot of other people become clear on their own stand points.

    Nice to see your cool and rational response in the light of a few years distance. It’s so rare that these things get re-examined after cooler heads have a chance to prevail… not that I think that many people on either side of the debate would change their minds on this particular case.

  20. weingon 09 Aug 2008 at 12:21 am

    I agree with groovydoc here too. This case serves to explain why we as a nation are outspending the rest of the world but our outcomes are mediocre by comparison. Just think of how much money was wasted in this case. In my view rationing is exacerbating the problem. The rationing is being done by insurers to cut costs with the result that patients don’t get the preventative services or treatment that would prevent disease progression. I do not see rationing being done in cases like the Schiavo case, where it would make sense. I wouldn’t deny them care, but let the families and Hannites know if they want those services, then they should mortgage their houses to pay for it. Sorry for the rant.

  21. Fifion 09 Aug 2008 at 11:32 am

    Jedischooldropout – If you want to be really sure your wishes are followed regarding DNR, life support in a case of brain death and other life and death related choices that one may not be in a position to choose/enforce at the time, then a living will is the best way. If it’s on paper there can be no disputes (as in the case of the Schiavo family, where it was reported that the wife told her husband that she didn’t want to be kept alive in the case of coma and brain death). If you know you can trust your immediate family to respect your wishes and have been clear about what they are, then there’s no need.

    There are also very real ethical considerations for doctors (and family members) regarding keeping someone alive purely for the emotional benefit of the family. This is a relatively recent case of this issue arising in Canada.

    http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080625/Golubchuk_dies_080625/20080625?hub=CTVNewsAt11

    “We won,” family lawyer Neil Kravetsky told CTV Winnipeg. “He got to die without some doctor pulling the plug; he got to die when God was ready for him.”

    One can only assume that God was originally “ready for him” when God pulled the plug the first time! I always find this kind of religious logic weird – clearly if God wanted someone alive then that person wouldn’t need all kinds of mechanical help. By their own logic, they should really have refused medical treatment when God called for their relative the first time!

  22. Carpe Vitaeon 09 Aug 2008 at 11:49 am

    “One can only assume that God was originally “ready for him” when God pulled the plug the first time!”

    Not exactly. God is omnipotent. Whatever the outcome, god was ready for him.

  23. Fifion 09 Aug 2008 at 12:07 pm

    Carpe Vitae – God seems to have different rules for people of different denominations – and I’m certainly no authority on those rules! The issue in the case I linked to also has to do with forcing physicians to engage in behavior that is to them unethical. There are no easy answers here but a factor that has to come into consideration regarding universal healthcare is the allocation of limited resources (a crisis that all healthcare systems will face, not just universal ones, due to the bulge in aging population and lack of planning for it). Clearly if someone wants to spend their own money and isn’t denying another person to access to resources, then it becomes a slightly different issue.

  24. Puppet_Masteron 11 Aug 2008 at 4:16 pm

    Steve,

    I know this post if a few days old, but I’d like to address something that may have been a factual error on your part. I’ve heard that Terri would respond to certain stimulus and her responses weren’t entirely random, but they just correlate to brain stem activity and did not require neocortical activity. Is this true or would you need a fully functioning cortex to have a brain respond to any stimulus?

  25. ncbillon 13 Aug 2008 at 11:02 am

    A 1990 Florida Supreme Court decision (In Re: Browning) found that orally expressed end-of-life wishes MUST be considered.

    But in that same case also noted oral wishes would not automatically rise to the “clear and convincing” standard, so a bench trial would probably be needed, exactly what happened in the Schiavo case.

    Please note that it is very easy to practice in Florida as an alternative practitioner, outside of any medical supervision from the state medical board (as treatments are considered experimental)

    Many alternative practitioners filed affidavits that hyperbaric therapy could essentially cure Ms. Schiavo.

    There is of course, no independent evidence confirming these claims, but we can hardly blame the Schindler family for grasping at straws like hyperbaric therapy and Hammesfahr’s experimental vasodilator regimen in hopes those could help their daughter.

  26. Steven Novellaon 13 Aug 2008 at 11:15 am

    Not all responses are cortical – there are many brain stem reflexes and spinal reflexes. These would be largely intact in someone who is persistent vegetative. It is important to distinguish such reflexes from evidence of cortical activity. I frequently see this mistake made by non-neurologist health care professionals, which means it is not always easy to do and requires some expertise.

    I never personally examined Schiavo – I am relying upon the testimony of those neurologists who did.

  27. Fifion 13 Aug 2008 at 12:23 pm

    For me the most grotesque aspect of the Schiavo case was that according to her husband they’d discussed what her wishes were in this kind of scenario and it wasn’t to be kept alive in a comatose state (this situation highlights the importance of making a living will not just telling the person closest to you if you may have other family members who may not agree with your choice). It’s a small mercy that she actually was brain dead.

  28. Steven Novellaon 15 Aug 2008 at 9:33 am

    Fifi – to be technically accurate – she was not brain dead. If she were brain dead, then she would have been legally dead, and there would be no controversy. She was in a persistent vegetative state, which means there was some brain activity, i.e. not brain dead.

    What you mean is that she was not consciously aware of her existence.

  29. Fifion 15 Aug 2008 at 10:10 am

    Dr Novella, thanks for the correction. It’s appreciated and that is indeed what I meant.

  30. [...] week I wrote an entry about the Terri Schiavo case, discussing a new published study criticizing the news reporting of this controversial case. The [...]

  31. [...] the issue of persistent vegetative state and Terri Schiavo. Actually it’s the third – the first was a review of a newly published study of the poor coverage of the Schiavo case. In response Dr. Egnor wrote a [...]

  32. [...] part one, part two and part three. The CT scan in the last part is most [...]

  33. mhowieon 19 Aug 2008 at 11:19 pm

    Though I agree there is a need to avoid ideological stances to influence decisions, it is important to INCLUDE them in decisions. We elect our politicians, form our lives and live our days based on our ideological views.

    Also, it is frustrating to watch the debate of religious/ideological folks and the science folks. Both ends do need to be considered.

    The ideological side has a right to state their views, as previously written, as we base so much of our lives on ideologies.

    However, to question science is also important. The earth ain’t flat, you know. And if you don’t understand that statement, I really don’t want to hear from you.

    Science, of course, needs to conduct itself regardless of ideological views, otherwise every test will be influenced one way or another.

    There is a balance, and it must always be sought. If we attempt to say either side is unnecessary or impeachable, we are already lost.

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