PVS

by Dean Kramer
April, 2005

I love the TV show, South Park. Yes, I know it has animated children using foul language. I don’t care so much for that. But the writers consistently and fearlessly tackle current, controversial topics. Last week’s show was about the Terry Schiavo dilemma. They used their regular cast of pre-adolescent male characters, Cartman, Stanley, Kyle and Kenny. Kenny, a child who gets killed in some bizarre accident every week, had been resuscitated but was in a persistent vegetative state. He’d left a will, but the last page (with his Advance Directive) had been lost. Cartman (the show’s perennial evil child) stood to inherit Kenny’s Play Station 2 upon his death. He was all for removing the feeding tube. Kyle and Stanley, the two “good” boys, wanted him kept alive because he was alive. They loved him and removing the tube (they felt) would be murder.

In the cartoon, the struggle became a nationally televised spectacle with all the pundits and news media chiming in. Cartoon people all over the nation were marching and holding vigils on both sides of the issue. Cartman insisted he was Kenny’s Forever Best Friend which gave him legal guardianship and that his desire to let Kenny go was entirely compassionate. The other two suspected Cartman of an ulterior motive and swore that keeping Kenny alive was the more compassionate response. At the last minute, the lost page of Kenny’s will was found. It said, “If I’m ever in a persistent vegetative state, please don’t put me on national television.” At that point the show’s characters stated this conclusion: Cartman was right (to want the tube removed) but for the wrong reasons (to assert his legal rights and to inherit Kenny’s PS2). The other boys were wrong (to want him kept alive) but for the right reasons (out of love and respect for the value of life at any price).

Two weeks ago Twink was traveling home from New Orleans by airplane when her father (who has lung cancer) had a heart attack back in Baltimore, MD. Because the hospital did not have a DNR, they got his heart going again. But he was in such bad shape he wasn’t expected to survive the night. Twink is his only relative. Due to bad weather and general airport turmoil, it took her 14 hours to get from the airport in New Orleans to his bedside in Baltimore at 3:30 in the morning. He, unconscious and barely breathing, looked the way people do just before they die. She said prayers for him. As it stands, he did have a DNR but her copy of it was at home along with her Power of Attorney. She went home, slept for a few hours, and returned to the hospital with the necessary papers. Approaching the room she fully expected him to be gone. He was sitting up in bed looking in irritation for the TV remote and complaining he wanted his breakfast. He lived for another 2 weeks during which time he and Twink took the opportunity for some healing and forgiving conversation. When he was no longer merely dead but really quite sincerely dead both he and Twink were at peace as they might not have been had the DNR been available initially.

So, who knows?

A poll taken during Schiavo’s final days said that the majority of Americans wouldn’t want to live like that. But the majority of those polled were not disabled. When I was among the TAB I swore that if I “ended up” in a wheelchair I’d cash in my chips because I couldn’t live like that. Well, now I know I can live like this find life enjoyable.

There are people with ALS who become completely unable to communicate.” Locked in” is the term used to describe them. IT science has made strides in allowing such people to begin to express themselves via computer. The technology is nascent and the process both slow and costly. But there are minds in there with thoughts and feelings.

Certainly some people, maybe most, in that situation would choose to die. But given my own opinions while able-bodied and the attitudes of other TABs toward the disabled, how could I trust a majority of able-bodied Americans to assess the quality of my life as a disabled person?

A woman I worked with many years ago was in a coma for several months due to an anesthesiologist’s mistake. When she finally awoke she said that during that time she felt as if she was dreaming. She could see and hear people coming and going but, as if in a dream, she couldn’t get them to hear or respond to her no matter what she did. Of course, everyone thought she was doing nothing at all. Eventually her dream became her new life. She enjoyed the good parts and survived the bad parts. That's what we all do, right?

So, who knows?

I’m trying to write my own Advance Directive. I’m told it must be detailed, but how detailed is that? I can hear people now, “Gosh, that woman is SUCH a control freak! Does she actually expect us to take all this stuff into consideration?”

People get annoyed by details these days “I don’t have time for all this yada-yada, nurse. Just cut to the chase.”

Then, too, many people can’t read very well, “No, no! It says ‘DON’T in front of ‘pull the plug.’ You missed the word ‘don’t’.”

Who can I trust to understand or interpret my wishes? Who will be able to tell the difference between a rictus and a smile? And if I get to that point, will life or death matter to me?

Who knows?

But if ever I do become persistently vegetative, please, do not put me on national TV.