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March 23, 2005

Private grief and public spectacle

I have not posted anything so far on the big story that seems to be consuming the whole country, which is the sad, sad case of Terri Schiavo. This is partly because I intended this blog to be more concerned with reflections on slower-moving themes, and not consist of commentary on current events (which other people have the time to do much better), and partly because I felt that there was nothing that I could say that would add anything of value to the substance of the case. I have no moral or ethical wisdom to offer that would help people decide what should be done with the feeding tube.

But the non-substantive issue that depresses me most about the Schiavo case, and caused me to break my self-imposed silence, is the public circus that it has become. I can completely understand the grief that the immediate members of the family must be experiencing. This is an awful situation and as far as I can see, there is no ‘right’ answer to this problem. Whatever the outcome, there is not going to be a victory or a defeat for anyone, and no right or wrong.

While we can try and wrap this event up in big, overarching issues of national importance or see matters of grand principle, at its core it is just the sad story of a family tragedy. As such it is something that the immediate family has to come to terms with, with whatever help and strength that they can get from their close friends, the medical community and, as a last resort, the law. What surprises me that so many people who have little or no connection to the family have got so passionately involved.

I am fortunate that I have never had to make a decision that directly affected the life or death of a human being, especially someone close to me. Making that kind of decision about my much-loved dog caused me so much grief that I don’t even like to speculate about it happening to people that I care about.

I think that it is very risky to predict what one would do if placed in the kind of situation faced by Terri Schiavo’s family. I think none of us really knows until we are actually in that situation, because it is so extreme, so far removed from what we have experienced before, that hypothetical speculations are useless in such cases. I would like to think that, finding myself in such a situation, I would behave bravely, nobly, and selflessly, but I really cannot know in advance. This is why I refrain from judging the people directly involved in the Schiavo case or other cases like that.

I have only sympathy for the members of families who grapple with end-of-life questions for their loved ones. If any friend of mine had to make such a decision, I would simply stand by them and accept whatever decision they made, without urging them on or trying to tell them what to do, because the last thing that grief-stricken people need is gratuitous advice coming at them all the time from all directions. The rest of us should simply be thankful that we do not have to make the kinds of agonizing decisions that they must make.

If Terri Schiavo’s parents were my friends, I would accept their decision in their time of need. If her husband were my friend, I would accept his decision too, even though what he has decided is the opposite of what his parents have decided. The reason for my apparent indecisiveness is because I cannot know what either of them should do since I am not sure that I know what I would do if I were in their shoes. But since neither are my friends, I would just leave them alone to let them work their way through this with their real friends and their doctors, without the intense media scrutiny they are currently experiencing.

I also have nothing but respect for those doctors (and judges and juries) who are required to be involved in such decisions. It cannot be easy to do so and the fact that they have been put in this unpleasant position should make us refrain from criticizing them just because they make decisions with which we do not agree.

In cases like that of Terri Schiavo, there is enough tragedy and sadness to go around without it also becoming a media circus. The best thing we can do may be to just leave the family alone.

POST SCRIPT

The invaluable Juan Cole has a very interesting post on how the mixing of public advocacy with private lives in the Schiavo case has disturbing parallels with cases that have occurred in the Muslim world, where fundamentalist clerics have used that mixing to interfere in the private lives of private citizens. That posting is a must-read.

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Comments

I think you're much more forgiving/accepting of people than I, Mano. I can't help but think that the parents are thinking of themselves, in the way that Karen Quinlan's parents and Nancy Cruzan's parents did not, but thought only of their daughters and what was the sane thing to do for them. I'm sorry the Schindlers have been hijacked by the right, but don't people have some responsibilty for thinking for themselves and not believing what 15 years of experience has told them is the case - i.e. that their daughter is no longer there? And having read a long rehash of the saga, I have learned that Michael Schiavo worked long and hard and tried many different treatments for Terri before he accepted the inevitable. The demonizing of this man is horrendous. Just my opinion. I wish I could be as understanding of others' positions as you are.

Posted by catherine on March 23, 2005 07:00 PM

Catherine,

I agree that Michael Schiavo should not be demonized but neither should the Schindlers. While we may have our suspicions about each person's motives, we really cannot know. We cannot rely on the media to accurately represent those individuals because the media is after a good story and simplistic good-bad dichotomies make for more riveting one-minute moralizing by pundits than trying to understand and describe the complexities of people's feelings in such extreme situations.

This is why I think that all the rest of us (media, politicians, activist groups, etc.) who have no connection to the case should step aside and let the people directly involved work their way through it.

Posted by Mano Singham on March 24, 2005 08:33 AM

While I am not, in general, in favor of demonizing anyone, I feel strongly that the removal of Mrs. Schiavo's PEG tube was a great injustice to her. In the beginning, it is quite correct that Mr. Schiavo was a very devoted husband, fighting with doctors and attempting to obtain every possible treatment for his wife. However, at about the same time as he won a large malpractice judgment against her doctors, his views suddenly changed, and he then wanted to cease all treatment. Her parents, the Schindlers who, at first, worked very well with Mr. Schiavo, did not have his change of heart, and have been fighting with him ever since.

The desire of her parents is for Mrs. Schiavo to be transfered to their custody - and, because of actions taken by Mr. Schiavo since circa 1994, it seems to me that they should be given that custody. According to a sworn statement by a nurse who worked at the facility at which Mrs. Schiavo was living circa 1996, Mr. Schiavo asked her "when the (expletive deleted) [was] going to die already". Additionally, as he has never divorced his wife, he lives in an adulterous relationship with a long-term girlfriend, with whom he has children. This other relationship presents him with a major conflict of interest. Finally, though Mrs. Schiavo supposedly informed Mr. Schiavo that she would not want to be connected to any sort of feeding tube, it is known that the incident of cardiac arrest that Mrs. Schiavo suffered in 1990 was due to an electrolyte imbalance that is typical of persons suffering from a combination of anorexia and bulimia. Therefore, whether or not Mrs. Schiavo was competent to make a decision not to receive food - which she was trying to avoid and purging when she did not - is questionable.

Since the malpractice decision, Mrs. Schiavo has been deprived of sensory input as much as possible: curtains block the light coming into her room, and therapies are not permitted, much to the chagrin of her parents. When initial tests were done, back in the early 1990s, many of the newer diagnostic tests that now exist, such as PET scans and functional MRI, had not yet been developed. In 2003, after Gov. Jeb Bush signed "Terri's Law", a guardian ad litum was appointed to attempt to find a solution between the two parties. He almost succeded in obtaining a compromise in which a new group of doctors would be brought on to the case and would perform new swallowing tests and diagnostic tests, like those mentioned above, and the recommendations of those doctors would be followed. Both sides agreed. Ten minutes before the deadline on his report, the appointed guardian was telephoned by George Felos, attorney for Mr. Schiavo. He said that he could not consent to the proposition, as he was challenging the constitutionality of Terri's Law, and as the guardian was appointed by Terri's Law, his case would be hurt by agreeing to a compromise. So, the attorney felt that his case was more important than the person whose interests and wishes he was purporting to advocate.

There have recently been doctors who have said that, from reviewing medical evidence and records, Mrs. Schiavo may be in a state of minimal consciousness rather than in a persistant vegetative state. In either case, while the so-called ethicists insists that she, and others like her, feel no pain as they are being starved to death (which is exactly the same as "being deprived of nutrition", no matter how this is spun), has anyone been interviewed in this state to know for certain? How do they know that such patients feel euphoria rather than hunger and thirst? Can they really know? If a person makes this decision of his own volition, that is his business; however, to make this decision for someone whom everyone agrees is alive is presumptuous at best.

While I am a conservative who identifies more with the Republican Party than with the Democratic Party, I do not hesitate to take issue with members of either party when I feel that they have crossed the line. In this case, because "no state shall ... deprive any person of life, liberty, or property without due process of law," and because Judge Greer (among others) seems to have ignored many facts in this case, some of them mentioned above, I support fully the actions of the Congress and of the President. In case anyone would ever misconstrue my wishes otherwise (which could be forged easily by a group of people to whom one is close - though I doubt this would happen to me), let me state that under no circumstances would I give any permission for anyone to cease nutrition - or any other treatments that are needed to keep me alive - so long as I am alive.

We need to have more respect for life in this country, especially the lives of those who are helpless and unable to express their explicit wishes. If a person's life is prolonged, and the person recovers, the person has a new lease on life. If a person's life is terminated, and that person wanted to live, then those responsible have committed murder - and we have a responsibility, as a moral society, to keep blood off of all of our collective hands.

Posted by William Sherwin on March 25, 2005 12:41 AM

Mr. Sherwin:

Not to sound overly skeptical, but what is your source for all of the above? And I mean specific sources, not "Oh, lots of stuff I've read."

Posted by CanadianCynic on March 29, 2005 09:52 AM

All of my information comes from articles published either in the Plain Dealer or on CNN.com, or television news programs, among them, NBC News, ABC News, and ABC's Nightline. I cannot recall specific dates for articles, nor can I parse the information into the different source articles. However, the aforementioned sources are generally reputable; therefore, I stand by the information and my conclusions derived therefrom.

Posted by William Sherwin on March 31, 2005 11:32 PM

In other words, lots of stuff you've read. I thought as much.

Posted by CanadianCynic on April 27, 2005 06:52 AM