Shots Across the Bow

A Reality Based Blog


Terri Schiavo:  Why do I Care?

UPDATE 3/28 After I wrote the post below, I found this article written by a young man with cerebral palsy who was almost euthanized as an infant. My fears are not far fetched or for the future; they're real and they're happening right now.

When I talk about this whole mess, that's one of the more common responses I get.

"Rich, why do you care so much? Why are you so emotionally involved with somebody you've never met?"

Now I could lie and say this is all about the principles involved, that life should be favored over death whenever there's doubt, that the state should not be involved in determining who lives and dies, but all of that, while intellectually compelling, is not the whole story.

I have some personal experience.

In the early 1940's a baby girl was born. The labor was very difficult, and eventually, the doctor had to use forceps to assist in the delivery. She stayed with her mother in the hospital for a few days, as was the practice back then before accountants and lawyers took over the practice of medicine, then went home.

She appeared to be a normal baby, crankier than most, but it wasn't too long before her family realized that all was not well. She was their second child, and she wasn't progressing lke her older sister did before her. As her parents concerns grew, they took her back to the doctor for tests and exams to find out just what was wrong.

The diagnosis was severe spastic cerebral palsy, a virtual death sentence at the time. They were told that children with CP invariably were also mentally retarded, and had a very short life expectancy. They were told that she would take 24 hour a day care, would likely never be able to care for herself, walk, or even talk. They were told that their best course of action was to put her into an institution and forget they ever had her.

Now they were a wealthy family, and they went to the best doctors and specialists money could buy, but the advice was generally the same, albeit delivered less brutally.

"Put her away, and forget you ever had her."

And at the time, everything they said was true. Babies with CP were routinely institutionalized, and did have a short life span, and did show signs of mental retardation. Of course, we know today that many of those symptoms were caused by the institutionalization, and not the CP.

The family rejected the prevailing medical opinion, and brought their baby girl back home. There were very few physical therapists dealing with CP cases like the little girl's so her mother invented exercises for her, like constantly chewing gum to strengthen her jaws and teach her coordination. Her mother constantly urged her on towards independence, accepting nothing less than her daughter's very best efforts. Her baby may have been born handicapped, but nobody was ever going to call her a cripple.

It was a long hard road, filled with setbacks and crises, and hospitalizations as the family fought to keep their little girl alive. There are many today who with a similar prognosis would say to let the child die, let her suffering end. Her quality of life will always be too low; she'll never be happy.

The little girl grew up and quickly demonstrated that prognosis was wildly inaccurate. She learned to talk and to walk, and to be a contributing part of the household. She did chores, went to school, and pretty much did everything other girls her age did, although slower, and with tremendous difficulty. There were no signs of retardation, or any other mental defect of any kind.

Her mother died of cancer when the girl was in her 20's, but her daughter had already learned to be fiercely independent. She moved away from home across the state, to live her own life. She made adjustments and accommodations as needed to make it work, but she did make it work.

And the prediction of a short life span? Also wrong. She's still going strong, in her 60's and still living on her own, although she does need some assistance now as she's gotten older and complications from the CP have begun to creep up on her, but she is still as feisty and stubborn as always.

The girl I talking about is my aunt, and it's because my grandmother utterly rejected the advice of the medical establishment that she lived to baby-sit my brother. sister and I as we grew up. Doctors, particularly when they're being influenced by lawyers and accountants aren't always right.


Last year, my father died.

He died from kidney and liver failure brought on by advanced cirrhosis caused by hard living and hemochromatosis.

I sat with him in the hospital on his last day. He was doped up on Ativan and barely aware of who was there, but he woke up enough to know when I spoke to him, even though he could barely speak back. His skin was yellow with jaundice as he lay there in the hospital bed, his mouth wide open. The doctor was wanting to take a scan of his abdomen, so the nurses wanted him to drink some contrasting fluid. He wasn't really awake enough to drink, so my mom and I had to keep trying to wake him up and get him to sip at the cup, but he was so far out of it he would start choking.

I don't know how aware he was of what was going on around him; the Ativan had him pretty out of it, but you could get him to respond if you spoke loudly and slowly. I'll never know if he was really out of it, or fully aware, but unable to speak, and that question will haunt me for the rest of my life.

There was no dignity in his final hours; he was completely incontinent, so the nurses had to catheterize him. He still messed the bed, so they had to come in and clean him up hourly. My mom and I would help them roll him over so they could change the sheets, or help clean him up while they got a new gown or diaper.

As the day passed and we sat there with him, he kept trying to get out of bed, to go to the bathroom on his own. We would tell him that he had a catheter in, but he'd try to get up anyway. He wouldn't say anything, and I'll never know if he heard us, or knew what was going on, but I would have to take his feet and put them back into the bed as he tried to climb out.

The doctors gave us conflicting information. The attending said he was improving; that we didn't need to worry. But Dad's internist told a completely different story. Even if Dad pulled through this crisis, it was a matter of months at most before he would be gone.

Dad didn't pull through. I went home about 9PM, and got a call from the hospital a few hours later. It was Mom, and she told me to get there soon. She said he was having a crisis and that the doctor's wanted to know if she wanted to put him on life support or not. Dad had a living will that specified that he didn't want heroic measures taken if he was terminal, but since there was some disagreement between the doctors about how terminal would be defined, they went to my mother for clarification.

Mom asked me what I thought she should do.

I sat and thought for at least a couple of hours or so; at least it felt that way although in truth it was only a few seconds.

"We know what he would have wanted," I said. "He wrote it down."

I heard the doubt and the tension leave her voice as she said I was right, we did know. I hung up the phone, took a quick shower, and left the house but by the time I got to the hospital, it was all over.

In a way, I had just helped kill my father.

Except he had a living will. He left clear instructions on what he wanted done in just this kind of situation. Without that piece of paper, would I have had the strength to make the same call, even if he had told us that was what he wanted? And if I did have the strength, would I have been able to handle the guilt involved with allowing my father to die?

I don't know.

I do know that the existence of that piece of paper lets me go back to sleep at night when I wake up staring at the ceiling, wondering of I gave the right answer to my mom on that early morning last year.


So why do I care so much about a woman I never met, and will never know? Because I do know her. She’s my aunt, written off by the doctors and the lawyers struggling to survive despite their pessimism. She’s my dad, trapped inside a body that has failed her, unable to speak for herself, and without that precious piece of paper telling us what she wanted to happen. We have the word of her husband, but because of his actions and statements, his word is suspect, and cannot be relied on.

So that leaves us with a terrible choice, and no clear guidance other than our consciences. And my conscience tells me that if a person has left clear instructions that they do not wish to live under certain conditions, then those instructions must be honored. If they haven’t left those clear instructions, then it is our duty as a society, as a nation, as courts and hospitals and doctors and caregivers, to favor life over death.

It’s the only right answer.
Posted by Rich
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