Terri Schiavo: R.I.P. CodeBlueBlog Summarizes the Case, Answers Critics, And Offers Further Explanations

After The Deluge

My method for dealing with the thousands of emails, hundreds of posts and far-flung inquiries has been to try to read them all and triage my responses.

Major issues -- regarding my Schiavo posts only --  raised repeatedly on the boards are:

• the method of my blog
• the tenor of my message
• my orientation and biases
• my "interpreting" and "diagnosing" from one single cut of a 1996 CT scan
• my "interpreting" and "diagnosing" a bone scan report done in 4/91; and, two CT reports done on 2/25/90, and 2/27/90
• criticism /questioning of experts
• my credentials and expertise
• my unabashed listing of my credentials and expertise

I am going to encapsulate my coverage of the case -- including the CT scans and bone scan -- while explaining and defending my positions.

This is the first of TWO PARTS:

PART ONE

My Way: The Method

It is important for all readers to understand that this is a personal web log, or blog. This is my personal blog, run for no profit, designed mainly as an outlet for my opinions.

These are opinions. Like all opinions, they may be loud or soft, informed or rash, prescient or foolhardy.

This is neither a newspaper nor a scientific journal. I do not present my ideas as peer-reviewed, double-blinded results.  People frequently -- and harshly --question my qualifications to express the things that I say. In the past I have responded (sometimes pre-emptively) with a discussion of my expertise or experience. This in itself has instigated harsh rebukes from some who claim I am thus being arrogant or supercilious. I have found this "Catch 22" to be impossible to deal with so I am resolved to mostly not defend myself by constantly restating what I know, where I trained, and how my light is spent. Reader are referred to my about page.

My blog represents what I'm thinking as I read the news. I am usually asking questions. It's sort of letting you into my perspective as I read things in the headlines that don't make sense or don't fit correctly or don't add up -- according to my fund of knowledge. If that is useful for people...good; they'll read and benefit. If it is not useful, then people Will move on.

I will continue to ask questions in this blog. Because almost nothing I read or hear-- about health care and specific medical issues-- from MSM makes sense to me.

And, although I am happy to explain the rationale for my thinking, or the process through which I came to my conclusions, I cannot spend endless hours of time involved in circular arguments repeating things I've said in a different way.

So, if you are interested in the questions that occur to me as I read about the medical issues of people in the news;  the health care studies and advice that are generated daily; as well as the medical news, tune in and take a few minutes to see what's going on from my vantage point.

I guarantee you two things. My vantage point is almost always different from what you are hearing and reading. And I can afford you insights to the health care system you may not otherwise be privy to.

The Tenor: or Soprano?

Until the Terri Schiavo posts, my blog has basically been a small circulation letter to regular readers. Sure, during posts about Yasser Arafat and Viktor Yushchenko, I had a lot of visitors from around the blogosphere; however, they were mostly searches and one-time hits.

Regular readers are used to my style, and I am used to their responses. With the Terri Schiavo posts my style of writing in this blog was suddenly broken open to a wide audience, and many had severe stylistic objections, which I understand.

I have taken this under serious consideration. Certainly if there are going to be large numbers of readers who come repetitively to this URL, I cannot expect them all to be my regulars who are familiar with me, what I stand for, and how I express myself; so, this is certainly something I will monitor and adjust as need be.

The Schiavo Issues

None of this changes the observations I have made on the Schiavo case and I stand by every single one of them. I have been grilled -- live -- on the radio twice by neurologists, neuroradiologists, and sundry experts concerning everything I have said, and I have not been knocked off any point.

The problem always seems to come down to people not reading what I said. Because I usually mean exactly what I say and no more. But people cannot help expanding,  changing, and transmuting what I've written.

Orientation

I do not come from the perspectives of what people would consider a strict "right to lifer," the "religious right," or a "radical conservative."

My original issue was the feeding tube.  I did not -- and still do not --understand how food and water came under the rubric of life support in the same category as intubation, forced breathing, and cardiac pacing. The best analogy I can use is the Foley catheter (tube through the urethra into the urinary bladder to allow urine to drain). If you are going to remove food, then why allow patients to urinate?

As a physician, I strongly object to actuating death. That is not what I was trained to do, and if society decides that is what it wants, I would propose some different professionals be assigned the duty to pull these tubes when the law orders it. For me, as a physician, it is an act that is inimical to all the reasons I went into the health care field.

Making terminal patients comfortable during their last days is, to me, is in a different philosophical and ethical cosmos than removing a feeding tube from a severely impaired patient.

The Infamous CT Scan

I saw, and heard neurologists, ethicists, and hospice physicians in media outlets such as NPR,  Fox News, MSNBC, CNN, and all the newspapers, declaring that Terri Schiavo's higher brain functions were nil. To describe this they used terms like: "her brain is: "water," a "bag of water," and "totally without cortex." One medical ethicist on NPR said (paraphrased) that Terri's brain was completely without a functioning cortex and since the cortex is where the complex functions and emotions of life are carried out, she is therefore not alive, but dead.

I, like every one else I assume, took this as it was stated (it didn't change my mind about the feeding tube anyway) until I stumbled on the single mid-ventricular CT image of Terri's brain that was done either in 1996 or 2002 (no matter).

Upon seeing the CT slice I was shocked that, yes there was severe atrophy, yes, there was severe damage, and yes the cortex was markedly thinned, but the CT itself did not reflect the descriptions I'd heard; and worse, I have seen many old and debilitated nursing home/assisted living patients as well as younger patients with chronic brain damage, with similar or worse atrophy. And not all of these patients were nonfunctioning.

That same CT slice was used as a visual graphic on television and in the newspapers -- by the same group of experts -- to demonstrate why Terri Schiavo was suitable for euthanasia. I objected to this strongly as, to me, the implications for all the other patients with similar or worse CT scans was morally and ethically frightening (talk about slippery slopes!).

I've been heavily criticized as unethically interpreting Terri's CT from this single slice, and speculating from the limited data. Let's get something straight. First, this was the only slice available. Second, it was the same and only slice everyone other expert was commenting upon. The University of Miami bioethics webpage thought it was appropriate to use that single slice on their web page as a testament to Terri's brain damage. Third, I made observations, not a diagnosis. Fourth, this was a scan done in the remote past. Looking at that slice and speculating about questions it raises is no more unethical than looking at a fossil and speculating on the size and shape of a dinosaur. It's a fragment of an old map, or a puzzle. And putting puzzles together to try and figure out possibilities is one of the things radiologists do for a living.

I also felt strongly that it was disingenuous for experts to put Terri's CT slice side-by-side with a normal 25 year-old female's CT. To the nontrained eye, the striking disparity nailed the case shut. To me that was unfair journalism and tendentious in the worst way. It would have been far more appropriate to put up the CT of a patient with severe cerebral palsy or chronic atherosclerosis. But this would not have made their case so strong, and one must question why these experts were given a pass for passing judgment on a single slice of a CT and for a deceptive comparison. I certainly was given no similar pass by readers and commentators when I said something different using the same data set.

It is also my contention that if the media are going to  use limited data to solidify important and weighty issues, then there better be someone in the audience who asks these questions. Because the reporters don't The reporters and interviewers often try to probe deeper, but they cannot sidestep trained physicians and academics whose depth of knowledge and familiarity with the issues easily circumvent and obviate any inquiry that might undermine their theory or proposal. I have never seen a medical "expert" exposed, thwarted or seriously undermined by a question from the journalistic audience. I am reminded strongly of press conference at Columbia Presbyterian last month (covered in CodeBlueBlog) where the physicians told the audience that he was undergoing a "routine procedure for a rare complication" when actually he was undergoing a complex operation for a common complication. The statement went unchallenged (and no thanks to all of the mean-spirited bloggists who did not read my pieces on the Clinton case and proceeded to use my analysis of that case to label me as a gadfly, and much worse).

End of Part One.

Part Two will discuss the bone scan, the defense of my observation,  Terri's two CT scans done after initial admission to the hospital; and, my $100,000 challenge.

Comments

[Maggie4life]

CBB

please forgive my arrogant postings on your site. That being said, I understand what you are saying and I recognize that you were doing nothing more than asking questions when things do not add up.

For those who disagree, including the trolls, who cares about them anyway. If they are prepared to condemn one innocent woman then they better be wary of ever finding themselves in the same predicament.

Thank you for being so informative.

[Jimmy Porter]

Nice rebuttal to posts in general. Sorry if I too, question everything I read on the internet. Your blog remains at the top of my list. I'm waiting for part 2.

[Susan Nunes]

There are so many questions about this case, and to bring them up causes far too many people on my side of the political spectrum--liberal--to react in knee-jerk fashion.

It's impossible to look at the case and not come to the conclusion that I did a long, long time ago, that the claims being made on behalf of killing Terri Schiavo were phony, not to mention the credibility of the main person wanting her dead is nonexistent.

[Kathleen]

Why on earth should you have to apologise for wanting to not kill a disabled person as so many wish to do. Their position is uniformed bigotry that terrorizes the disabled and those that love them.

When they come to their senses and realize that they assisted a scuzbucket of the lowest order to torture and murder his cuckholded wife, there will be some pretty fast back peddling.

And who is taking bets that the autopsy results show she had no brain at all and no history of fractures. I would bet $100 grand on that one if I had it. Clearwater county knows where to hide its skeletons.

[syd]

I hope that this exercise of explaining yourself *again* will not discourage or fatigue you. This blog is truly unique in that you have the knowledge and the nuts to ask the hard questions. Please continue to do so.

[Maggie4life]

I want to back the comments of those other people who have made a comment. Susan, it is so very heartening to know that there are quite a number of people who see themselves as liberals who have been so willing to seek the truth about what happened, and about the collusion that has taken place. I am on the conservative side of the fence, and this situation has fired me up to see that justice is done.

There is ample evidence of a motive and desire to kill in this case. The evidence, believe it or not is hidden within the truths and half truths of the depositions and interviews that have been done. Why for example is it in the police report that Michael did not know why she would want to commit suicide? This is just one more example of Michael attempting to shift blame elsewhere.

CBB keep up the good work. You are yet another liberal person who has given me a lot of heart. I see the passion within to ensure that what has to be exposed will be exposed.

[Ferry Fey]

Thank you for the work you've put into this blog. It contains by far the most impressive
arguments I've seen for not removing Terri's food and water. I hope that as information continues to be revealed, that this may at least help someone else at some point.

I have a question about Terri's initial condition that I don't recall having seen covered by anyone.

It has been stated that Terri was consuming vast quantities of iced tea in order to lose weight. I would assume that given the weight-loss goal it was probably diet iced tea, and thus very likely sweetened with aspartame.

I have read that some of the symptoms of problems with aspartame can be dizziness, brain damage, and menstrual disorders.

Do you know of any reason to rule in or rule out aspartame as factor in her initial unconsciousness? Would aspartame toxicity lead to any changes in the brain that might have shown up in any of her testing over the years?

[Marty Salo]

As a brain injured individual, I thought that some of the descriptions of Michael Schiavo's active opposition to providing rehabilitation efforts for Terri, were bad. I recognize that the nature vs. nurture argument were part of the story. If someone is not encouraged to progress, then nature will win. It's a bad thing to have someone waste away. I realize that there are probably other factors operating in Michael Schiavo's life.

I believe that when I was first in the hospital, the first Nuerosurgeon predicted that I would be in a persistant vegetative state. There was a pediatric Neurologist who had hope, and I have supportive parents who wanted to help me become a productive member of society.

[Maggie4life]

Just a side issue here. I was speaking to my mother this morning, about the state of one of my sisters (she is dying from cancer) and I brought up this case. My mother mentioned that when my other sister was in a coma in 1959 the doctors did not give her any chance of survival.

That sister is now around 55 years of age, a mother of 4 daughters and grandmother of 10. Of course it would have been 11 but a doctor's bad decision killed Nathan.

So CBB you are doing everyone a big favour with the work that you have put into this case.

[susano]

Love the blog and don't think you should change your approach for anyone.

This case has raised so many important issues - some only pertaining to TS, others with massive implications for this society, in law and in medicine. It's about time these issues are looked at, straight on.

At 50, I'm beginning to think about where I can move to be sure that somebody won't off me, with the consent of the law, before my time has come.

[Nick]

CBB,

Congratulations on the well-deserved attention that your provocative and insightful writing has attracted.

You write "The problem always seems to come down to people not reading what I said. Because I usually mean exactly what I say and no more. But people cannot help expanding, changing, and transmuting what I've written."

I can't help but feel that continues to happen, reading these last few comments on your seemingly clear post today.

In the context of your larger crusade to improve medical reporting, I wonder, would you still have issued your $100k challenge, even if you had no opinion with regard to Schiavo's fate? It would seem consistent with your earlier writings, to issue this challenge. Regardless of whether one wanted the tube removed, neurologists shouldn't be going around interpreting CTs to make diagnoses on the air, and reporters shouldn't be uncritically parroting these experts.

Maybe you'll address this in part two. I don't think a lot of your readers understand your broader goals with this blog, despite your repeatedly stating it.

[Joyce]

Thank you for continuing to write about Terri.
The way you write lends creditability to your message.

The MSM does not go out of it's way to find the real facts. That would take real work. For years the MSM parroted the "Terri is in a coma" till finally the advocates partially got through.

However, many folks truly lack a discerning mind, and unfortunately, people who claim to be liberal actually demonize those who would have saved Terri's life and given her the chance for improved circumstances.

I now no longer consider myself to be a liberal any more, because of this issue. I do not know what I am anymore. Terri should have been allowed to live. Members of "liberal" groups seemed to assume that I was a republican, or a Bush supporter etc, if I supported allowing Terri Schiavo to live. I received many emails about Bush and his various pieces of legislation, initiation of the war, etc. When I cited Nat Hentoff's writings (for the Village Voice, no less) I still was demonized, and his writings were deemed a dubvious source.

Now I see how Hitler did it.

It takes guts to wrtie about this issue, and also
it demands brains - I see that you have both.

Please continue on, if only to continue to inspire the rest of us. Thank you thank you for your work.

[jack caffey]

CBB

Don't change. Reading your blog is like sitting down for a good chin wag with a spirited friend. Rock on.

Dear CBB,

I too thank you for your straight shooting opinion.

When I saw Terri‘s situation I did not think, “Oh boy!” This will be useful to advance my view of politics, religion, law, medicine, philosophy, human rights or whatever. I was half paying attention to a Larry King interview while doing dishes when to my astonishment I heard someone’s daughter had been denied food and water for over six days. I stopped and looked. What I saw was a woman the news had said was in a “coma” fix her eyes on her mom while her expression of stupefacation changed into a beautiful smile. I was stunned. But what really got me was when her dad teased her— she LAUGHED! I was absolutely floored that she had already been put through six days without water against her parents wishes and authorities were trying to do so again. I don’t usually burst into tears while watching the news.

Setting aside this grotesque affront to parental instinct, you do end up in the aforementioned areas of thought and action. Having a place to go that focuses on the medical aspects is invaluable. I still have opinions and questions on the differences between legal and medical definitions and methods of diagnosing PVS, but the blog has become so big, I have not been able to sort through it yet. Unfortunately, I still have to earn a living!

Meanwhile thanks to the others especially the link to the Fieger / Healy / etc. interview and more. I hope to continue this discussion especially if more medical information comes in.

Oh! Before I forget— right after you posted your challenge, I saw the two scans you talk about while Sonjay Gupta commented. Though the short statement he said qualified what was shown, the words were lost on the average Joe. Meanwhile the pictures spoke otherwise, especially when they put “Normal” under one and “PVS” under the other.

JT

Dear CBB,

I too thank you for your straight shooting opinion.

When I saw Terri‘s situation I did not think, “Oh boy!” This will be useful to advance my view of politics, religion, law, medicine, philosophy, human rights or whatever. I was half paying attention to a Larry King interview while doing dishes when to my astonishment I heard someone’s daughter had been denied food and water for over six days. I stopped and looked. What I saw was a woman the news had said was in a “coma” fix her eyes on her mom while her expression of stupefacation changed into a beautiful smile. I was stunned. But what really got me was when her dad teased her— she LAUGHED! I was absolutely floored that she had already been put through six days without water against her parents wishes and authorities were trying to do so again. I don’t usually burst into tears while watching the news.

Setting aside this grotesque affront to parental instinct, you do end up in the aforementioned areas of thought and action. Having a place to go that focuses on the medical aspects is invaluable. I still have opinions and questions on the differences between legal and medical definitions and methods of diagnosing PVS, but the blog has become so big, I have not been able to sort through it yet. Unfortunately, I still have to earn a living!

Meanwhile thanks to the others especially the link to the Fieger / Healy / etc. interview and more. I hope to continue this discussion especially if more medical information comes in.

Oh! Before I forget— right after you posted your challenge, I saw the two scans you talk about while Sonjay Gupta commented. Though the short statement he said qualified what was shown, the words were lost on the average Joe. Meanwhile the pictures spoke otherwise, especially when they put “Normal” under one and “PVS” under the other.

JT

Dear CBB,

I too thank you for your straight shooting opinion.

When I saw Terri‘s situation I did not think, “Oh boy!” This will be useful to advance my view of politics, religion, law, medicine, philosophy, human rights or whatever. I was half paying attention to a Larry King interview while doing dishes when to my astonishment I heard someone’s daughter had been denied food and water for over six days. I stopped and looked. What I saw was a woman the news had said was in a “coma” fix her eyes on her mom while her expression of stupefacation changed into a beautiful smile. I was stunned. But what really got me was when her dad teased her— she LAUGHED! I was absolutely floored that she had already been put through six days without water against her parents wishes and authorities were trying to do so again. I don’t usually burst into tears while watching the news.

Setting aside this grotesque affront to parental instinct, you do end up in the aforementioned areas of thought and action. Having a place to go that focuses on the medical aspects is invaluable. I still have opinions and questions on the differences between legal and medical definitions and methods of diagnosing PVS, but the blog has become so big, I have not been able to sort through it yet. Unfortunately, I still have to earn a living!

Meanwhile thanks to the others especially the link to the Fieger / Healy / etc. interview and more. I hope to continue this discussion especially if more medical information comes in.

Oh! Before I forget— right after you posted your challenge, I saw the two scans you talk about while Sonjay Gupta commented. Though the short statement he said qualified what was shown, the words were lost on the average Joe. Meanwhile the pictures spoke otherwise, especially when they put “Normal” under one and “PVS” under the other.

JT

[Maggie4life]

CBB,

I have to comment again because I feel that I am in such good company with the people here today.

There is a new case in Georgia and I have just heard about it. This is very different from Terri's case because the woman is not brain damaged. Her grand daughter has gotten control as guardian and she is trying to kill her grandmother because she is "old". She has ordered the pulling of her tube. The action started on March 28.

I continue to applaud your efforts in speaking out. It is not easy when people are not willing to listen or believe what you are saying. I was attacked personally by someone because I gave a group of friends the facts about this case. That person did not believe that MS has done anything wrong.

I have a question. If an examining doctor wrote that Terri was awake, how could anyone state with absolute confidence that this woman had always been "comatose" and had not responded at all? If unsure about this question, please read the notes from Bayfront hospital.

[CodeBlueBlogMD]

I don't consider this an apology, at all.

One of the problems with blogging is that the central thread of an issue is frequently sewn through posts over several days. A message that is coherent in my mind is actually broken into fragments over days (and weeks)and needs, sometimes, a recapitulation that puts it all together in one place. One of the reasons for people's misinterpretation of certain concepts brought forth in a given post is that they jump into the blog --on a link, or search -- and with no preface, take a portion of the overall message and interpret it out of context. This was rampant in the Schiavo posts and lead to much of the conflict on the message boards and in my email. I did a similar summary of my many posts on the controversial case of Viktor Yushenko, the recently elected president of the Ukraine. That summary was printed in the ultra-libertarian journal "Antiwar" (http://www.antiwar.com/orig/boyle.php?articleid=4217)

Insofar as the style, or tone, I only meant to imply that if there is a large amount of traffic to the site, I don't want to chase away readers who might not get the shtick, because the basic idea is to try and initiate change by educating and informing. You can't do that if readers run from what, on the surface, may seem outlandish to them.

That being said, I don't plan any purposeful, or planned change in styles. I'm just accepting criticisms and suggestions of readers and keeping that under consideration.

Because a blog is written on the fly there is no way one can change the emotional element of reacting to events and translating that quickly into print. That's how blogs are -- good or bad. Blogs that are too carefully written, or overly edited, run the danger of coming across stilted and look more like MSM.

So, writing in the heat of events "live" leaves little room for a leopard to consider some better pattern for his hide's coloration.

[Russell E. Wilson]

I am now a regular reader.

Thank you,

Rusty

[Graham Lester]

One of the things that disturbs me about all this is the way these media neurologists act as if the brain is an intricate machine every part of which serves a specific and known function. It reminds me of phrenology.

Their argument is that if you take out parts a, b and c, then functions x, y and z become impossible, as if the purposes of the various brain parts were as sure as metal cogs.

That seems highly presumptuous. As a parent of a child with a severe brain dysfunction, my experience from visiting neurologists in the real world is that they know very little indeed about where to look to find the biological bases for abnormalities.

It seems to me that to justify withdrawing a feeding tube, we would at minimum have to first prove that the patient is at all times incapable of rational thought, no longer experiences human emotion, and has no sense of pain.

It just doesn't seem to me that we know enough about the brain in general (let alone Terri's brain in particular) to make those judgments with any degree of certainty.

[purple_kangaroo]

Maggie4life, I'd like to look up the case you mentioned where the daughter is trying to withdraw her mother's feeding because she is "old". Can you give a name or other information about this case that would allow me to find more information about it?

[susano]

Maggi-4Life, Do you have a link regarding the case you've mentioned in Georgia?

[Maggie4life]

Go to Blogs for Terri for information

[CodeBlueBlogMD]

It may be this:

http://www.blogsforterri.com/archives/2005/04/shiavo_case_red_1.php#trackbacks

[Maggie4life]

Anyone interested in Mae's case please go here:

http://www.blogsforterri.com/archives/2005/04/shiavo_case_red_1.php#trackbacks