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Death and Dying: Thoughts on Terri Schiavo

The following is two separate blog posts I wrote about the Terri Schiavo saga. The first I wrote on Saturday and the second part was written today, to clarify my stance a bit in response to some comments on my blog and some emails.

We’ve been discussing the Terri Schiavo saga in our house all weekend and it’s prompted us to make living wills. I’m of the mind that laying in a vegetative state for fifteen years is not living at all and I would rather my family not try to keep me going in the hopes that one day I’ll suddenly sit up and say “Hi mom and dad!” when in fact, if I did wake up, my first reaction would be to yell at my family for making go through that just so they didn’t have to deal with my death.

Fifteen years of not being able to feed yourself, think for yourself, form a verbal thought, get dressed, tell anyone where it hurts, plead for medication, read a book, sit at a family dinner….that’s not living. That’s being kept alive. There is a difference, in my mind.

Obviously, I’m not a medical expert. This is all my own opinion. But I tend to think that even if Terri is cognizant of any of her surroundings at all (which is something I find rather unlikely), she can’t be too happy at being who and what she is. Is that a way you would want to live? For fifteen years? Would you want to be trapped inside a useless body all that time, watching events unfold around you, knowing that you are a financial and emotional burden to those you love, that your parents and immediate family have lived every minute of the last fifteen years fighting to keep you in this vegetative state? Personally – again, my opinion – I would want to be dead, buried and a memory.

I hope that if it ever came to a situation like this one, the government would choose to stay out of my business. Who is Congress to step in and make rules and regulations about this one particular person, this one particular life? What about six month old Sun Hudson, whose breathing tube was removed this week, against his parents wishes? Well, there was no mass media coverage of little Sun’s death, so why would there be any politicians around?
The political grandstanding going on in the Schiavo case is sickening.

Radley Balko:

Congress? Shamelessly grandstanding? You don’t say. You know, for a bunch of “strict constructionists,” these GOP lawmakers are awfully eager to crap all over the Constitution when it comes to “activist lawmaking.” Laws narrowly tailored to apply to a specific person or a specific case are baldly unconstitutional. As are ex post facto laws. Anything legislation Congress may try to pass to prolong Schiavo’s life would fail both of those tests on its face.

Andy says:

If her brain damage has resulted in her being forever incapable of having a rich inner life, that ability to converse internally and appreciate the now and remember and dream that seems to make us distinctly human, then there is nothing immoral in ending her life now.

If she is capable of having “a life,” as opposed to simply “being alive,” then to end her life would be immoral.

That said, if the goal is to end unnecessary suffering, then to allow her to starve to death strikes me as immoral. If the decision is that her “life” is over, and that she is merely “alive,” then there’s no rational reason not to actively move to end her biological life through lethal injection or the like.

After fifteen years of being not just a vegetable, but a pawn, and, in some instances, a puppet whose strings have been pulled in order for her to perform little “tricks” to show she is alive (again, opinion, I don’t believe any of that), is that living a life?

In Andy’s comments, Mike Ditto says:

She won’t starve to death. She’ll have multiple organ failure culminating in cardiac arrest as a result of dehydration, and during that time the nurses will keep her as comfortable as possible by giving her morphine and likely a sedative such as Ativan, as well as artificial tears, saliva, and a lip moistening gel. A side effect of the morphine will be to suppress her respiration, which will hasten the process. Her body will be comfortable. Her mind won’t know the difference, because she has no capacity to experience anything cognitively. I’ve been through this with five relatives in the past 12 years, including my grandmother last month. It’s the most humane way to go given the doctor’s legal inability to intentionally provide a drug for the purpose of causing someone’s body to shut down. When I go, I want to die instantly; but if I were to suffer an extended illness or be profoundly incapacitated, this is how I would want to go.

Which reiterates everything I’ve read on that very subject in the past few days. Mike also says at his own blog:

…[T]he torture is being perpetrated on both the parents and the husband, and the torture will continue as long as unethical, unqualified, religiously-motivated “experts” (most of whom have never reviewed Terri’s medical records, and none of whom have actually examined her) keep giving patently false advice to the parents that someone with no cerebral cortex is a thinking, interactive human being just waiting to snap out of a light coma.

Again, Radley Balko:

What the hell is wrong with us? Why is it that when it get to the point of letting someone go, we force terimally sick people to die in one of the most agaonizing ways possible? Why is starving someone to death by removing a feeding tube considered humane, but injecting a terminal, pain-ridden patient with a solution designed to let them die painlessly forbidden?

I know the answer. But it isn’t acceptable. The answer is that removing a feeding tube isn’t proactive. Whereas injecting someone with lethal, but merciful drugs is. That’s asinine

Yes, it is. I wish I could make a living will that says, please do not let me suffer, do not let me linger in some horrible half-living, half-dead state. Shoot me full of some drug that will allow me to die a peaceful, painless death. Just let me go. Would that we could do that for everyone. Have you ever watched someone die? I watched both my grandparents die long, lingering deaths. Painful, dragged out deaths that made me think at many points it would just be so much more humane to give them a nice drug that would put them into a deep sleep from which they would never wake. It would be over. The pain, the suffering, the agony – and yes, those things apply to both the patient and the patient’s family – would be over.

I mention this to people and they say, only God has the right to say when a life is over. Let God do his work. So is it God’s design that my grandmother was to spend months in a hospital, floating between consciousness and unconsciousness, breathing on her own and then not breathing on her own, unable to recognize her children, her family called to the hospital time and time again to say good-bye, only to have it stretched out again when she was brought back to life, just to spend another couple of weeks dying? What kind of life is that?

For fifteen years Terri Schiavo has been dying. And these politicians, who don’t know Terri, who don’t know her family, are clamoring to claim that she not be allowed to die? And our government overall wants to tell us that – all of us – when we are in a similar situation that involves us laying in a hospital in pain, in agony, inches away from death, our families tortured by their constant bedside vigil, our eyes unfocused, our brain not functioning, our limbs not moving on their own, our children watching us die a slow, terrible death, that our loved ones cannot gently put a needle into our arms and end it for us, even though that’s what we would desire, that we have no right to honor the wishes of someone who knows that enough is enough, that doesn’t want their family to go through this, that doesn’t want to go through this themselves, they – our lawmakers, our leaders, have the audacity to determine that there should be no such thing as mercy killing, that we must suffer until some mysterious man in the sky lets our suffering ends, or until our bodies run out of steam and finally shut down, no matter how long it takes – I find that all abhorrent. I would hope that should I ever find myself in a situation like this, one of my family members would have enough guts and enough sense to come into my hospital room in the middle of the night and put a pillow over my face.

Make a living will, people. Today.

Part II

One of my greatest fears is of being buried alive. The dark side of my imagination has created a scenario in which this happens and it appears in my dreams every once in while: Imagine being held down, underneath layers of dirt or stone or maybe in a wooden box. You see a pinpoint of light above. Just out of reach. You can hear muted voices above you; there are people out there. Living, breathing people who are going about their daily lives while you are trying to claw your way out of your trap, while you are trying to shout to them. But no one hears you. No one knows you are in there.

When people tell me that Terri Schiavo is aware, that’s what I imagine. That’s how I envision her every cognizant moment to be. I don’t know that this is true. I’m no medical expert. But no one knows what’s going on inside Terri’s mind, do they? If anything is going on in there. The fact that she has no working cerebral vortex makes me inclined to believe that she isn’t aware of anything. But I try to put myself in that place. Is that a way I would want to exist for fifteen years? Hell, I wouldn’t want to live that life for fifteen days.

My post yesterday was not one based on expert witness testimony or facts and figures and data. It was based on emotion and I assumed it obvious that it was a personal view of what I would want if I were in that situation as well as an admonition to make a living will so this never happens to you.

To say – as some other bloggers as well as emailers did – that it would stand to reason then that I would advocate the killing of the retarded, the meek and the disabled is absolutely ridiculous. You may call my desire to see Terri die peacefully a slippery slope, but you’re creating that slope out of fallacies. When I advocate mercy killings, I don’t mean that people should just run rampant through hospitals jabbing all the sick and elderly with needles full of morphine. I would expect that if euthanasia was ever made legal, it would be used only on people who have expressly and legally made provisions for such a thing to be done to them, in specific situations.

A few people asked why I didn’t mention Michael Schiavo. I purposely didn’t write anything about Terri’s husband simply because he wasn’t a factor in what I felt yesterday after reading countless news stories and blog posts about the case. I was looking at it from the point of view as someone who has watched loved ones die and as someone who would not want to linger inside a shell of myself for 15 years while my parents and husband fought over whether I may some day recover. My impression of her husband are not favorable, but I don’t see why that matters.

And now I’m wondering why the Schiavo case is as famous, for lack of a better word, as it is. Why the lights and cameras? Why the politicians and reporters?

I mentioned yesterday the case of Sun Hudson.

The child was apparently certain to die, but was conscious. The hospital simply decided that it had better things to do than keeping the child alive, and the Texas courts upheld that decision after the penniless mother failed, during the 10-day window provided for by Texas law, to find another institution willing to take the child.

You have here another parent looking to keep their child alive. Where was the outrage? Where were the tv cameras, the Congressmen, the advocates? Sun Hudson’s mother had to let her baby die even though she wanted to keep him alive. He would have died soon, anyhow, as do most babies born with Sun’s defect. But should that matter? Shouldn’t we err on the side of life? Aren’t all lives worth keeping until nature runs its course? Then why weren’t the same people who have been advocating for keeping Terri Schiavo alive doing the same for Sun Hudson? Why was the hospital able to kill him without a fight?

Honestly, I don’t think anyone involved in this case any longer has the benefit of Terri Schiavo in mind. It’s way past that. It’s all about pushing agendas now. If people really, truly cared about making sure all lives are equal, whether brain dead or not, why weren’t they rallying at the bedside of Sun Hudson?

Michael Totten:

I’m not at all impressed with either the White House or Congress right now. This is so obviously not the federal government’s business that I’m embarrassed to even point it out. Whether Terri Schiavo lives or dies is of supreme maximum importance to her friends and family. It’s only important in a symbolic and voyeuristic way to anyone else – and that’s only because the media refuse to let go of it and political activists refuse to stay out of it.

As far as starving Terri to death goes (I’m trying to respond to all comments and emails here), some of you make it sound as if I’m sitting here gleefully rubbing my hands together, mumbling kill, kill, torture, kill! I’ve tried to read up on what happens when you remove the feeding tube of someone whose cerebral cortex is not functioning. I quoted such a thing yesterday. And if it were me – read again, if it were me, that’s how I would want it done if there were no other legal recourse. Obviously, I’d prefer a nice shot in the arm of something that will let me die peacefully, but we only offer that resolution to animals in this country.

Does anyone remember Karen Ann Quinlan?

After three and a half months that Karen had been in a coma, the family decided to authorize the discontinuance of extraordinary procedures. The next day, the doctor decided that he would not take Karen off the respirator due to moral reasons.

Another reason to make a living will.

Karen lived for ten years after they took her off the respirator. Ten years in a persistent vegetative state. Ten years of laying in a hospital bed, unable to communicate. When I say I wouldn’t want to live like this, that I advocate the mercy killing of people who would request such a measure be taken in such a circumstance, that is not the same as saying I want to kill the meek, the retarded or the disabled. There is no slippery slope here, people.

It’s a complex issue. And an emotional one. It’s easy to get caught up on either side of it and it’s just as easy to sway from one side to the other. On the one hand, I imagine Terri suffering. On the other hand, I think of the suffering her family is going through in watching her die and I understand – though not necessarily agree with – their desire to not hasten that death.

I’m not touting myself as a medical expert, a legal expert or as someone who speaks for any specific group. If I were in Terri’s place, I’d want to die. It’s as simple and as complicated as that.

About Michele Catalano

  • jadester

    i couldn’t have put it better myself.
    I either want to be cremated when i die, or have my body donated to science. And i’d much rather go into the unknown 15 years early than hang on to “life” in a vegetative state.

  • Tom Johnson

    Imagine being held down, underneath layers of dirt or stone or maybe in a wooden box. You see a pinpoint of light above. Just out of reach. You can hear muted voices above you; there are people out there. Living, breathing people who are going about their daily lives while you are trying to claw your way out of your trap, while you are trying to shout to them. But no one hears you. No one knows you are in there.

    Beautifully put. This is exactly my feelings on this – if you’re laying there for 15 years, and you happen to actually be somehow able to grasp what’s going on, those 15 years are pure torture.

    However, in Terry’s case, she doesn’t even have cerebral cortex – it deteriorated to nothing long ago and its space has been filled up with spinal fluid. All that’s left is the most basic of “animal brain” components – the very basic control over some body functions like the heart and lungs. She’s experiencing and knowing nothing because she has no ability to do so anymore. There’s no coming back for Terry, outside of an absolute, confirmed miracle that somehow not only replaces the majority of her brain, but also brings back all her memories. Let this poor woman die. Or at least let her body die – she, her “self,” died long ago.

  • Joel Caris

    Meant to comment on your blog, Michele, but here will work just as well. Just wanted to say that I agree with most everything you say here and thought you did a great job of summing up your thoughts on this case.

    Oh, and I really hate it when people take personal thoughts like this and then extrapolate them out to completely unrelated situations and make judgements in regards to those situations. Sometimes people are really stupid.

  • e

    Terri should be allowed to die!

  • Eric Olsen

    do you mean she should be allowed to stay dead?

  • Mark Saleski

    only with her parents’ consent.