Pulling the feeding tube

One lesson from the tragedy of Terri Schiavo: give your loved ones clear instructions early on about what to do in case you have the misfortune of lapsing into a "persistent vegetative state."

It’s macabre, but it could save your loved ones a lot of grief. We all have to go one day, some unexpectedly much sooner than others. Seeing what has happened to Schiavo and her family, I now consider such instructions as important as getting funeral and cremation insurance (which I already have).

In my case, I have given instructions not to put me on life support if ever I lapse into a persistent vegetative state. If doctors pronounce me brain damaged, do not resuscitate. I am told that I may have to put this down in writing, just to avoid legal complications, and that it would be best to write the instructions in longhand, in two original copies, to make it really binding.

I may have to add that under no circumstances can my living will be overruled by the courts or an act of Congress.

If such instructions still do not bind those I may leave behind, I have threatened to haunt the person who disobeys my instructions. For every day that my wretched, helpless existence is prolonged against my wishes, I have threatened a similar period of ghoulish mischief.

Day One: my music box will play by itself, over and over. Day Two: the scent of my favorite flowers will fill the house although the garden is not in bloom. Day Three: the massage chair where I sit to watch DVDs will start moving by itself.

In a land where seeing dead people is not considered odd, I’m presuming that this threat is more binding than any legal document.

It’s not that I’m avoiding suffering; I’ve had my share in this lifetime and survived. What I want is to spare my loved ones from prolonged grief and save them from being conscience-stricken over my fate.

There could be some confusion over medical terms, especially in this country. Minimally conscious, vegetative state, persistent vegetative state, brain damage, coma, brain death — what exactly are these conditions? Lawyers will simply make money arguing the nuances to death.

So I’ll make it clear: the moment doctors declare that there is no hope of my ever regaining the ability to communicate and feed or clean myself, I’m ready to go. Pull the plug, pull the feeding tube, ASAP, please.

* * *

It’s unfair to compare Schiavo’s case with that of Pope John Paul II.

Until his final moments the Pope was lucid; until his final days he could wave to his flock, even if only from a window. He could tell his aides that he wanted to spend his final hours at the Vatican instead of in a hospital.

Obviously there was life there – life that you would do everything to prolong.

Some critically ill people clearly rage, rage against the dying of the light, to borrow a phrase from Dylan Thomas. Such ill people you put on life support for as long as possible.

In Schiavo’s case, we didn’t see any rage. In fact we didn’t see anything at all in the empty stare and the mouth agape.

I am vowing triple-strength haunting of anyone who will put me on video looking like that, and especially if the video is released to the public. I may be in a vegetative state, but I am entitled to my dignity and privacy.

Even if the release of the video is meant to fight for my right to life.

I am not the only one who doesn’t want pity when I am dying or dead. I know someone who has instructed her relatives to replace her eyeballs with artificial ones when she dies, and to keep her eyes open during her wake, so that when people peer into her coffin, the glass eyes can stare back at them, and no one will say, "The poor dear… "

* * *

Schiavo’s case has rekindled debates about the meaning of life, and not just at the philosophical level. When you’re brain dead, is there still life worth saving?

The case has also rekindled discussions about the soul, which is supposed to live on long after the body used as a vessel is gone. Belief in a soul is a matter of faith, since no matter how science and Hollywood try, no soul (or spirit, or ghost) has ever been captured conclusively on film, video or phone camera. If it can’t be documented, does it exist? And if there is no soul, what’s the fuss about pulling the feeding tube?

For the Church, life is a divine gift that must be cherished and nurtured at all costs. Against this "culture of life," there are those who emphasize the quality of life. If you are fed through your stomach, pass water through your waist and breathe through a tube running down your throat, and if you are condemned to a lifetime of total paralysis, would you still want to live?

The answer must be a personal choice, and I cannot pass judgment on the case of Terri Schiavo. Women aren’t supposed to suffer strokes at 26 years old, so she understandably had not left a living will and "DNR" or "do not resuscitate" instructions.

It was her husband’s word against her parents, who understandably wanted their daughter’s life prolonged as long as possible. Parents, as I have written in the past, are not supposed to bury their children.

* * *

For many people in this country – even among devout Catholic families – the debate often boils down to something less philosophical than the meaning of life: Can we pay for this?

If the answer is no, they pull the plug. End of story. End of life.

Unfortunately, not all life-and-death decisions can be made so simply.