THE PLIGHT OF THOSE WITHOUT A VOICE

My heart goes out to Terri Schiavo and her parents. If you have been living in an information vacuum and haven’t watched the news or picked up a newspaper in the past couple of years, the briefest synopsis of this case is: (from AP sources)

15 years ago, Terri Schiavo collapsed from heart failure that resulted in severe brain damage. Lower courts have ruled that she is in a “persistent vegetative state.” Seven years ago, Schiavo’s husband and her parents began a legal tug-of-war over whether to have her feeding tube removed and allow her to die.

The main argument surrounding this case is that Terri’s husband says she stated at some point she would want to die if the choice was to remain in a vegetative state.

I am not going to address all the moral arguments here that include a “husband” who doesn’t want to break his marriage vows with Terri yet has had two children out of wedlock with another woman — which I could rant about for hours — or the right-to-life or right-to-die issues that have been brought to the forefront by this case.

What it boils down to for me is how they are treating this person… she still is a living, breathing human being. Reportedly, she is still responsive to others around her, yet because she cannot speak and say she wants to live she has been deemed expendable. NOBODY really knows what Terri wanted. NOBODY knows what she wants now. Because nobody really knows what she wanted, her spouse has the right to say whether she lives or dies.

They are starving her and I can’t wrap my brain around that. Regardless of whether or not she wanted to be in a vegetative state, ending her life by denying her food is unfathomable. There are no machines keeping her alive. Her body is essentially functioning as it has the last 15 years. I just don’t understand denying her food as a reasonable or humane way to bring her life to an end.

NOBODY KNOWS what Terri’s wishes actually are. If proof existed of her wishes, maybe I’d understand where her husband is coming from. Right now, though, it’s his word against Terri’s and she can’t defend herself. I just don’t understand — if her wishes were to die — why he waited seven years to begin the process of ending her life. It all doesn’t add up and because something is missing (proof of her wishes) I believe her parents should keep fighting for her because she can’t speak for herself.

I keep dwelling on Terri’s wishes. What if she’d thought ahead while she was still young and vibrant and made decisions about her life and then told not only her husband, but her parents. “You know, if this happens to me, this is what I want to do,” and then put it in writing. When we’re young, however, we tend to think that we’re invincible and to ponder “what ifs” like this one is the last thing on our minds.

My brother was 35, athletic, fit, and had his entire life ahead of him when the word, “leukemia” hit him like a ton of bricks. He had one more birthday before he died.

While it was tough to see my brother deteriorate like he did, he made some gut wrenching decisions as he saw the handwriting on the wall. He decided, ahead of time, that if he lay dying and there was no hope of recovery, he said, “I do not want to be resuscitated.” He said it to his wife, he said it to his doctor, and he put it in writing.

Several months after his bone marrow transplant his intestines began to reject the bone marrow. His body was failing. The doctors tried several treatments but nothing worked. My brother did not want his wife to have to make the decision to “pull the plug,” and he knew he wasn’t going to live without a miracle, so he made his wishes known again.

One night his heart was failing and in what was described to me as a blurry whir of activity, the doctor asked my brother if he wanted to be resuscitated and my brother moaned. Moaned. My sister-in-law was told it sounded enough like a “yes” and that verbal “yes” superceded any written or previous verbal agreements, so they resuscitated him. They hooked him up to a machine that did all of his breathing for him. He went into a coma.

At the end of the week, my sister-in-law finally had to give permission to take him off life support. She waited for a few agonizing days, but ultimately we all knew he wasn’t going to recover. My mother objected because she felt that while there was any shred of a chance he might recover (and we were assured repeatedly there wasn’t one) he should stay on the machine (and this was a complete reversal of her support for his “do not resuscitate” order). It was a horrible awful mess and I told my sister-in-law I would stand by her no matter what she decided. She took him off life support that Saturday. He died quickly. But she didn’t starve him to death. He was, for all intents and purposes, already gone.

I still waver back and forth, though, on how I feel about life support and at what point we give up on miracles… but I don’t second guess my sister-in-law’s decision, because it’s what my brother wanted and we know it because he said so. I pray I never have to make those types of decisions, but I know I probably will. The question is or not whether I will be prepared for it.

I guess my point is maybe the young and vibrant should think about the “what ifs” more. I know that when we were kids, we figured that Mr. Fit would be the one who outlived us all. None of us saw leukemia coming to change all our plans. Sometimes it’s easier to make the hard choices, though, if we’ve already thought them through ahead of time. My brother always said. “Live your life in pursuit of plan A but always have a plan B in your pocket.” That’s how he lived and ultimately ended his life.

So think about the tough issues you will face when you are older (or God forbid, sooner than you planned). After you’ve thought about the tough issues, let someone know what you’re thinking. Make your wishes clear not only to your family, but put it in writing so that when the emotions and reality of what’s happening hits your family, your wishes are still honored, whether they agree with them or not.

Ultimately, though, my heart aches for Terri’s parents. They brought her into the world yet hold no right to keep her in it. I can’t wrap my brain around that either.