Helping You Get the Most Out of Your Misery






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Thursday, February 24, 2005


Quality of Life

In care you're unfamiliar with her story, Terri Schiavo has been in a coma for fifteen years. Fifteen years. Her husband, who has lived, essentially, without his wife all that time, has been fighting for a long time now to let her die. Ms. Schiavo's parents have been fighting to keep her on life support. Jeb Bush and others have been right there with them. The whole thing makes me want to puke.

The first thing that bugs me, I guess, is that her husband is the person with whom she was closest at the time of incident that left her in this state. I would guess--I can't know for sure, but I'd guess--that they had conversations like every other couple out there, conversations about how they feel about the world, conversations about what they want and don't want. I'm betting that, at some point in their marriage, they had a conversation about what they'd want in the event that they wound up in a hospital bed in a vegetative state. Maybe after watching a news report on coma patients, maybe after seeing Christopher Walken in The Dead Zone. I know I've had this conversation with my wife. What I'm saying is, I believe that Michael Schiavo is in a better position than anybody in the world to know what Terri would have wanted. How can you strip away the right of the one person who knows you best to make decisions for you when you can't speak?

The thing that bugs me more is the disgusting arrogance of all those people "fighting for Terri's life". She responds to stimuli, they say. So do houseplants. I'm sorry, but people are kept alive for years and years, despite the medical certainty that they will never recover, not because their families are thinking of what's best for them. The families are thinking about what's best for the families. They can't deal with the thought of feeling responsible for their loved one's death. Guilt keeps them from pulling the plug.

We have so stigmatized death in our society, we fear it so much that we put people through hell to avoid it.

Six years I spent working in nursing homes. Can I tell you what I observed about the quality of life of our patients in persistive vegetative states? They are in constant danger of bed sores, which can occur even with a conscientious staff. They frequently lie in their own feces, not because they're in some kind of Dickensian hell-hole, but because the staff hasn't gotten to them on their rotation yet. Many of them receive very infrequent visitors, especially if they've been comatose for a long time. When the family members do come, they don't stay incredibly long. Would you? Could you? Their bodies curl into the fetal position, even if they get regular physical therapy. They have braces put on to try to minimize this, but they're only so effective.

The absolute worst thing, for me, about comatose patients was their hands. Their hands made me cry. When you're comatose, your hands curl up. Your hand is curled up and sweating. The sweat turns your nails soft and cheese-like. The sweat and whatever dirt is in the air mix and over time create a stench of rot and decay. It's the most disgusting smell I've ever experienced.

Now, whatever your feelings on a person's soul, you've got to think about this. If a comatose person has no awareness, if the brain is truly gone and never coming back, why are we bothering with this sack of flesh in the bed? And if a comatose person is still in there, fully aware of what's happening to them, but unable to speak, can you imagine a more torturous existence?

But Jeb Bush isn't concerned with Terri Schiavo. He is concerned with the Religious Right and how he can get them to vote for him. He's concerned with how the people of his state feel about the issue, not with how this woman is suffering. And so Terri Schiavo is slapped back and forth like a hockey puck. One court decides that Michael has the right to remove life support, then the Governor passes an executive order blocking it. Another court upholds the first decision, then another court grants a forty-eight hour "reprieve".

There's not much that you or I can do about Terri Schiavo. But we can do something for ourselves. We all, no matter the likelihood that this sort of thing will ever happen to us, we all need to make sure that our wishes are known. We need to talk with each other. We need to put aside this fear that speaking of something will make it happen and sit down with our parents, our spouses, our partners. We need to make our wishes known. We need to go the extra step and create living wills that lay out exactly what we want and don't want done. Put it on paper. Whatever you believe, put it on paper so that you leave no doubt.

And for the record: I don't want to lie in a bed for years with curled hands.

Well said.
I couldn't agree more.

Living will forms couldn't be easier to find, either. The web has a ton of state-specific "print and sign" docs that cost nothing. You may need to pay for a notarization, but this can be substitueted many times by the signatures of two non-relative witnesses.

There's also a national living will registry that your health care provider may or may not participate in.

Take an hour and get this figured out. I did.
I think you made the point more people need to face. If they are aware, imagine how they are suffering.

I loved this blog.
Well put sir.
Well said. I live here. This is on the news all the time. In fact, there was a news bulletin on television yesterday afternoon taking the viewer to the court room where Ms. Schiavo's lawyers (I call them Ms. Schiavo's lawyers - these are the lawyers who represent her husband who is representing her wishes) stated his case - that these 'stays' the court issues, pending this or that appeal, have been played out and are nothing more than delays. The latest appeal has to do with the recent cessation of a 20 year coma, that patient able to speak. This was a different case, a totally different kind of brain injury, and in no way applicable to Ms. Schiavo's situation. Her parents know this - but want to put Ms. Schiavo through the rigors of testing - another delay. How selfish.

The camera panned over the crowd stationed outside the courthouse and the Hospice facility where Ms. Schiavo has been housed, and I watched these faces, read their signs, and wondered how many of these people had ever gone inside, gone into Ms. Schiavo's room to sit with her, to visit with her, to aid in her therapy, if they believe this will help. A woman on the Today show this morning, who had driven down to Florida from her Midwest home to offer support, certainly did not. Her parents attorneys accused Ms. Schiavo's husband of 'rushing her death.' Good Lord - it has been fifteen years. I hope with all my heart she has not been aware during this time. What enormous torture if she has!

Ms. Schiavo has become - not a person, anymore, but a symbol for the Religious Right. She is one more shrine for them to visit, not unlike the sun-streaked window in Clearwater that resembled the Madonna. But the Religious Right, it its zeal, has disregarded Ms. Schiavo's rights, and in doing so, her human-ness has been lost a second time. My main comment to these people is that, after 15 years, if rehabilitation was possible, why has it not been done?

I was apalled to read of the hands of one so brain damaged. I note that in the video shown on nearly every news show in town that Ms. Schiavo's right hand is gripping a cylindrical object - I hope to minimize such a horrible condition.

I have a living will, and have discussed such things with my own children. We agree that their last memories of me should not be of a shell. They have promised to maintain my dignity and let me go.

Give Ms. Schiavo's dignity back to her.


Well done. More people need to speak out about this issue. Thank you.
I too say well done..And I would like to give my input to this horror..Apalled???Apalled doesn't even touch this hard enough..We should be asking questions to our government ..who gives them the right to make this a part of leading our country..Mr.Schiavo should take his wife to the capitol..for lack of a better understanding by them..a tour if you will..and ask to visit with Mr.Bush "The President" who has now taken over gaurdianship of Ms.Schiavo..If he The President is so able to make this apalling stand in her life then he should accept responsibility of her completly and without hesitation..simply adopt her and take care of her for the rest of her unnatural life...Mr.Shiavo my heart is with you and I truly believe you should sue the government for mal-practice
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