Saturday, April 02, 2005

Terri's Gift: Disabled Man Makes His Wishes Clear

Terri Schiavo has not died in vain. Her tragedy is creating conversations that will save at least one life. The Associated Press reports that Thor Spencer, 29, has let his family know: "I'd rather be alive than dead."

Despite the fact that the AP headline calls him a "Child," Thor is a man with a strong will. After seeing Terri on TV, he decided he never wanted doctors or the courts to make life-or-death decisions for him.

As a result, the Spencer family held a meeting, designed to help them come to terms with Thor's wishes. The family sees a pressing need for this conversation, because Thor often has health problems due to a brain injury.
In explaining his wishes,he brings up an experience I share, and one I've heard from others with disabilities:

Doctors said his clenched right arm might never relax. It did.

Doctors said he might not learn to talk again. He can.

Doctors said he probably would never walk on his own. He does.

"They were wrong," he says. "They were wrong every time. So, don't make that decision from what they say."


Like Thor, I have begun to tell my family and friends that I want to live, no matter what the doctors say. I am asking them what they want, and suggesting that they file living wills and durable power of attorney documents.

Thank you, Terri.

13 comments:

The Baron said...

I agree with you that no one should make a decision on when to end someone's life other than the person whose life is at stake. However, as in the Terri Schiavo case, the person whose life's at stake is not always able to definitively make a choice, and we may have to rely on someone else to make the decision, like Terri Schiavo's husband. I don't know if you're married or have a partner, but if you do, I would expect that you would share with him/her your desires on a topic as important as this. I fully support someone like the person you quote who does not want his life to be ended by someone else's decision. He made his desires clear, and they should be honored. It seems to me (and several courts) that Terri Schiavo made her desires clear to her husband, and that should've been honored a lot sooner than it finally was.

Of course, there's the additional argument about whether or not a person such as Terri Schiavo can truly be alive, being as extremely disable as she was (not having a cerbral cortex). Was she, the actual person who was Terri Schiavo, truly being kept alive, or was it simply the vessel, her body, that was being kept alive? To me, she died 15 years ago. She was not save-able, not in any sense of bringing her back as a human being with a personality, according to almost every non-politician doctor who ever examined her in person.

But I will grant this: the Schiavo situation has indeed prompted people to make their end of life wishes expressly known, so hopefully the circus that resulted over this will not take place again, or will take place less often.

Anonymous said...

Not to pick a fight but "several courts" did not find that Terri made her wishes clear. One court (that of Judge Greer) made that decision and other courts simply ruled off of his findings.

Our point (I presume to speak for many of Terri's supporters) is that there were more modern tests that Terri could have gone through to determine her EXACT status. Her husband, as her legal guardian, refused those tests. Why?

Terri was not terminal, she was disabled. There are many in our society who need help with day to day survival (eating, eliminating waste, glucose regulation, mobility, etc.) are we going to begin judging their life's worth as well?

I live in the South, a red state, middle class America. There are some in NYC who would probably consider my life subsatandard. Like many suburban Americans I live my life proudly each day, happy in my small accomplishments and being around those that I love. My life is worth no less than someone living in Manhatten, worth no less than someone who can run a marathon, worth no less than someone who can sing or speak or write well.

By allowing state sponsered murder of Terri Schiavo we open ourselves up to the debate of "what life is worth living?"

You, yes YOU, don't live in NYC! You don't make more than $200,000 per year! When IS the last time you were at the opera? When is the last time you had a pedicure? When is the last time you told the maid to skip this week? When is the last time YOU paid each bill when it came in? When is the last time you even thought about how you would spend your end days?

Who makes that judgement? A mother or father? An adulterous husband? An HMO? The Senate? A judge?

I don't believe that I have the moral authority to make a life or death decision (except in cases of self defense), how can I turn that power over to someone else? I don't believe that I can make quality of life judgements for someone else, I certainly don't believe I can delegate those decisions to the judiciary. What gives a judge (some guy with a law degree, good at politics) the moral authority to decide if a life is worth living?

To glibly decide that Terri Schiavo "died 15 years ago" ccompletely discounts the court testimony that I've seen and the video that I've watched.

We keep coming back to this: 15 years later there are scientific break throughs, there are new tests (PET and MRI) and Michael Schiavo refused them all. If you truly loved someone, wouldn't you do everything you could to determine their actual state and help them (if you could) before you "pulled the plug?"

cynthia said...

Well said, Anonymous. I agree that the availability of new tests and procedures changes the picture. I also agree that everyone should have access to compassionate "help with day to day survival" when they need it; the dying needn't fear-- with true compassion even a limited life need not be dismal.

People like George Felos are hoping we who fought for Terri's life will lose heart now that She's passed on. I am still fighting, still finding a public voice.

Baron, I think we are mostly in agreement, except that I do not accept the courts as adequate decision makers in these situations. Judges are for the most part able-bodied middle aged people, who haven't experienced physical or cognitive disability. It's only natural that these unknowns hold horror for judges, the same horror it holds for many people in the world today, not least George Felos, Michael Schiavo, Jack Kavorkian, and all the folks who've been shaking their heads at the screen, saying "I don't want to live like that!! Pull the plug! Pull the tube! I'd rather be dead!"
World-acclaimed physicist Stephen Hawking can't move as much as Terri could. Thank the Lord for computers, or his brilliant mind might have been lost to us long before he stops thinking up theories to explain the universe.
Despite the calm, self-assured manner of the neurologists on TV, it remains that we don't understand the brain.
People with disabilities are often untrustworthy of medical diagnoses and prognoses-- not because we're desperate PollyAnnas, but because we've _lived_ the improbable, or the impossible. Every disabled person I have asked has shared with me something they can do that a doctor somewhere said would "never happen."

The arguments for ending lives like Terri's only hold up if you accept the "proof" of what her life is like for _her._

I don't.

Janette said...

Sorry Cynthia, I'm anonymous. I don't know why it didn't accept my name when I posted.

The Baron said...

Janette, you can try to obscure the issue all you want with the red-state/blue-state stereotypical nonsense (which has absolutely nothing to do with the Schiavo case and is simply a diversion, one that works well for conservatives' purposes), but the simple fact is that whatever state you live in, not having a cerbral cortex is not a "disability;" it's not something you can recover from. How can a person's personality, their essence, be replaced, even with the most advanced medical technology? And this wasn't about Ms. Schiavo's "status," it was about her wishes, which, by using her as a symbol for your various causes, you conveniently ignore.

Cynthia, I found your post to be far more thoughtful and thought-provoking. Your point on able-bodied people making decisions regarding other, non-able-bodied people, is a good one, and well taken. But it seems to me, in the Schiavo situation, the courts weren't making a determination of her life's worth, they were determining whether or not her husband was adequately expressing her wishes, and whether or not he had ulterior motives. They found he did not, and that he seemed to be acting on her behalf.

I just don't think that in this situation anybody, even somebody like yourself, can presume to know what Terri Schiavo's situation was -- how can anybody with consciousness know what it's like to be unconscious? -- or what her wishes were. Her husband, the person closest to her when she went into the hospital, is in a much better position than anybody else to know what she wanted, and this was tested again and again by our admittedly imperfect courts. While I agree that I don't want to live in a society where judges or (even worse) politicians make determinations of whose life is worth living, I'm equally frightened by a society that ignores an individual's wishes, even if that's expressed through a spouse.

This is such an unnecessarily divisive issue (especially the whole red-state/blue-state aspect of it); surely we can agree that life is precious, that doctors can be wrong, and that life is worth living with a variety of disabilities, but we can also allow individuals the right to define their own lives and how they want to live, perhaps through a spouse or partner, if absolutely necessary. There has been such a hardline stance taken on this, "if you're don't agree with me, you're crazy." It doesn't have to be this way.

cynthia said...
This comment has been removed by a blog administrator.
cynthia said...

Hi Baron,

The rhetoric surrounding Terri's life and death concerns me, too. We can't hear each other if we're all screaming at the top of our lungs.

I assure you, I understand and share your interest in making sure people's wishes are respected. I can see a possibility that I would be willing to fight for that, in cases where the wishes are clear, and where I felt that the person understood their options well enough that they would be unlikely to change their mind, after seeing life from a new perspective.

However, I believe that we have miles to go, as a society, before the average person truly understands their options. We need change on three fronts:

1)We need to understand that physical and cognitive limitations do not intrinsically lower someone's quality of life. (i.e. a person CAN be physically or cognitively disabled, old, or ill, and HAPPY at the same time.)

2)We need to create services for people with physical and cognitive limitations that do not lower someone's quality of life. (i.e. in-home services, inclusion of the elderly and people with disabilities into society, and personal empowerment that includes the right to control one's treatment, not just the right to refuse treatment.)

3)We need to correct the balance between the cost of care and the quality of care. (i.e. support for people facing medical changes and the attendant decisions, to ensure that all avenues are explored, resources accessed, and that no person's emotional trauma is exploited.)

What we have today is devastated people being advised that the future looks bleak, and being offered a chance to avoid suffering. Many people see doctors, especially specialists, as authority figures. Yet, a typical American hospital in 2005 is first and foremost a business. The doctors want to provide the best reasonable care, but they are pressured by their administrators to stick to protocols designed to keep costs down. They are liable for malpractice if a patient or family believes treatment outcomes are negative, so they've learned to focus on worst-case scenarios. Add that to the fact that our MSM is still stuck in the 50s when it comes to disability, only able to describe people with limitations as "Tragic," "Suffering," "Inspiring" or "Amazing." How can anyone accurately project how they will adjust to something that is not recognized as part of a normal, happy life?

trampoline said...
This comment has been removed by a blog administrator.
trampoline said...

I love this conversation so much that I had to jump in. Let me first say, though, by way of conciliation, that I made some comments in another blog, which Cynthia found and responded to. Those comments were reactions to the media frenzy (and the general populace's missing-of-the-point) surrounding the Terri debacle. My comments took an acerbic and sarcastic tone that was probably a little too incendiary. I apologize.

But what really excites me about this whole conversation is the common ground Cyntha and The Baron seem to have -- especially when the topic turns to that of health care. Cynthia is absolutely right that the ability to walk, talk, write, communicate in conventional ways does not determine a person's value. And when the quality of care that person receives is determined by their geographical location or their economic status, then we, as a society, have failed that person; and in turn, ourselves.

THIS is where Terri's case really sheds some light on the issue. We have politicians in office who have rushed into the spotlight because of the high visibility of this case, when in every other way, they've abandoned the needs of average Americans. They've blatantly lied to us about their stance on the "sanctity of life."

Here's where I take Janette's bait:
I am the son of Southern parents. I have relatives who still refer to that area above the Mason-Dixon as "The North." I was raised in Red-State Missouri by Republican parents. I am fiercely religious. And I'm a Democrat living in New York City. In my travels through 46 states and my associations with several different groups of people, I've learned that you are exactly right, Janette: your life is certainly worth no less than mine. It's worth no more and no less than the dyslexic Brooklyn kids I tutor on Wednesdays. It's worth no more or less than Governor Schwarzenegger's.

And this reasoning is exactly what led me -- a Blue voter -- to New York, a Blue State. I strongly believe that you, I, the dyslexic kids, Governor Schwarzenegger, all deserve healthcare. I believe that the dyslexic kids deserve an education that is just as nurturing and unyielding as the one I received (in the Red States) and I believe that their parents deserve a job with a minimum wage that is above the poverty level. In short, I believe in the value of the individual -- the basic tenet of Conservatism. And I believe in the responsibility of each person to look out for, be considerate of, pass laws that benefit, their neighbor. (Incidentally, I also believe in God Bless America -- and Canada and Indonesia and Syria and Ghana, etc.)

So, here's the disconnect that the Baron referred to: our elected officials are lying to us. Those same able-bodied rich white men who jumped at the chance to seize a spotlight in the past month were cruelly using Terri's case for their own benefit. This hypocrisy is what I find the most apalling. Consider President Bush, who killed Sun Hudson with the stroke of a pen because the cost of keeping her alive was too high. Tom DeLay, in fact, dealt with this scenario 16 years ago when he made the decision disconnect his own father's life-support. And don't get me started on healthcare or poverty. Given these public servants' track record when it comes to standing up for the nation's poorest, weakest citizens, it takes great gall for them to champion this cause and then dub themselves "sanctity of lifers."

But that's all politics. The experts at FoxNews can discuss that. What I'm most interested in is the fact that Cynthia, The Baron, Janette and I all agree on very basic, very important facts about the value of the lives of all of our citizens. What we disagree on is how to go about honoring and protecting that value.

Seems like a good place to start, doesn't it?

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Christmas gift for a baby said...

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Chevalier Blanc