Thursday, April 07, 2005

Pondering the void

Back on March 10th, I wrote about my own convictions about end-of-life decisions (check it out here). The last comment posted was by a lady named Amy, who asked some very valid questions:
You said, "If the only way you are keeping me alive is by technology and the intervention of man, then my life is already over. Period."

Steve, have you ever taken an antibiotic?
Does your mother have a pace-maker?
Just wondering.
Keyboard in hand, I crafted a wonderful, sensitive response to her comment, hit "publish"...and all my marvelous thoughts vanished into the cosmic byte-bucket. Lost in the blogosphere's ether. It was one AM anyway, and I should have been in bed, so I said "the hell with it" and did what I should have done 2 hours earlier.

But Amy's questions have been itching at the back of my brain, and tonight, I'd like to explore those a little further. (And "save" far more frequently...)

Have I ever taken an antibiotic? Oh, yes...since I was, oh, age 5 or so. In fact, were it not for sulfa drugs, and progressively stronger antibiotics and decongestants fighting allergic sinus and middle-ear infections, I would have been stone deaf by the time I was 13.

Not only that, but in 1997, on my way to a conference in St. Louis, an insect-bite on my leg got infected and developed a very bad case of cellulitis. By Friday noon, it was red and Saturday morning, my leg was almost aglow with the redness of raging infection. If it weren't for the intervention of a doctor, a home-care nurse, and two other health-care professionals who got me on IV antibiotics while I was at the conference, I was assured that I would have gone into septicemia, toxic shock, and eventual death within 12-18 hours. As it was, I was on IV antibiotics twice-a-day for 30 long days before I was finally rid of the infection. (I joked with folks in AA that I had to be nearly 7 years sober before became an IV drug user...) To top it all off, I am currently on hypertension and diabetic medications without which I would surely have died before now.

As for my mother, she died of a heart attack - one too severe and too sudden for a pacemaker to be implanted. But I know half-a-dozen other folks who have benefitted from things like pacemakers, and balloon angioplasty - including both my brothers-in-law. My sister Sandy is nearly 7 years in remission from Hodgkins' lymphoma because of an aggressive course of radiation and chemotherapy - and I thank God for the marvels of medicine and technology that gave each of them a new lease on life.

So let me be clear - I am not anti-medicine, nor am I anti-technology. Nothing could be further from the truth.

My struggle is with how the medical profession has defined "life," and under what conditions they are bound and determined to preserve that so-called life.

Medicine tells us that so long as there is brain activity - as measured by an EEG machine - then I am alive, and whatever efforts are possible should be taken so that my life can be preserved. My personal experience tells me otherwise.

In 1977-78, my father was dying of lymphatic and brain cancer. He fought it every step of the way - alternating treatment between Roswell Park in Buffalo and Sloan-Kettering in NYC - but it was relentless. In the space of a year, my father went from a vital, alert, technically brilliant man to a vacant, listless skeleton of a man who spent much of the last weeks of his life tranked out on Brompton's cocktail to control the hideous pain. Nonetheless, this was a man who believed he was going to get better. Less than three weeks before he died, he bought a two-year membership to the YMCA - that's how much he believed in the possibility of recovery. And I'm glad he did it - it's not like I begrudged him the money, after all. But I don't think I would have fought that hard.

In fact, when my friend Steve Fellman was diagnosed with esophageal cancer 14 years later, I fully supported his decision not to do chemo or radiation. He made a choice to fully live the last two years of his life, rather than spend them just fighting to stay alive. Steve might very well have existed for a longer period of time if he'd gone through treatment - but I doubt very much that his existence would have been nearly as much joy and blessing as the much shorter life he had.

In 1989 or so, my friend Ron L. - a brilliant avionics technician with the Ohio Air National Guard, an extraordainarily talented craftsman, a devoted husband, father, Scout leader and DeMolay advisor - was diagnosed with with ALS - Lou Gehrig's disease. He quickly deteriorated, and was wheelchair-bound for months. Then he was completely bed-ridden, unable to communicate other than by eyeblinks, unable to feed himself or take care of any bodily function. In what seemed like no time at all (although it probably took a year) all he could do was take in nourishment, and eliminate its byproducts. Everything that made Ron "Ron" was gone. And then, against all reason, he remained in that state for ten long years.

At one point, in what can only be termed a superhuman fit of will, Ron somehow crawled out of bed, and tried to throw himself down the stairs in his house. Even that didn't kill him. In fact, Ron's wife (who was his primary caregiver) developed a rapidly-moving cancer and died before him, 10 years into his paralysis.

As I understand it, from the moment of his wife's death, Ron refused nourishment, and gave up all will to live. He died a week or two after his wife.

Now I am absolutely sure that if the family had agreed, they could have tied Ron down to his bed and immobilized him, inserted a feeding tube, and kept Ron alive. His heart and lungs were strong, strangely. In fact, I'd bet that the medical community could have preserved Ron's biological existence for yet another 10 years.

But for what?

Yes, I know about Joni Eareckson Tada, Christopher Reeves, Stephen Hawking, and folks like them. But even though each of them had grave physical impairments which severely constricted their lives, they were still able to coherently communicate who they were and what they believed with the world around them. Absent the ability to communicate, I believe I'd be nothing more than a lump of autonomically-driven protoplasm. For me, life would be over - regardless of what the medical community says. Notice that I'm not dictating what should happen to you - or the Terri Schiavos of the world, or anybody else. I'm just begging you not to apply those standards to me.

I'll say it again, with a slightly different emphasis: If I have lost the ability to feed and hydrate myself...more importantly, if I have lost the ability to communicate, and share my God-given blessings with my family, friends, and the world...then I don't care what my EEG or EKG or any-other-G tests say. If the only way you are keeping me alive is by technology and the intervention of man, then my life is already over. Period.

The important words are in bold: only and keeping me alive.

If I go to bed tonight and have a severe heart attack or stroke, then I'll be glad to have you use clot-buster drugs, or a crash-cart, or angioplasty to help me recover. But if you've subsequently done all there is to do, and I'm not getting better - if what you are doing is forcibly extending an empty, purposeless existence because it still falls within some arbitrary definition of "life" - then you are standing between me and my destiny, and it's time to get you the hell out of my way, and out of God's way. For me, it's the difference between "this is all there is" and "there is so much more to life than this."

If there is a reasonable chance that you are truly improving, healing or restoring my life, then do so with my blessing. But if you are simply extending life because you are afraid for it to end, then please love me enough to let me go into the arms of God. Allowing that surrender will be the last gift anyone on earth gives me in this life - and it will be a welcome gift.

I suspect that Amy and I will not agree on this topic. And I'm more than happy to treat her with honor and respect for her beliefs.


Anonymous said...

Steve, I largely agree with you - except that with the rapid advances in medical technology, the next "miracle" cure may be just around the corner, close enough for there to be a "reasonable chance that you are truly improving, healing or restoring my life". Maybe, just maybe...

Michael Dodd said...

Back in 1968 as a high schol, senior, I went to Michigan State University to take a scholarship exam. We heard a lecture about coming biomedical developments and were challenged to ask ourselves how we would make decisions once things became possible, many things only imagined at the time that are realities now. The title of the talk was "Come, Let Us Play God." Part of the problem is that, once a procedure becomes possible, we cannot pretend there are no questions about using it. Yet we still need some criteria for deciding how, when and so forth. There will always be gray areas, and many of us prefer not to live with that.

I sometimes think the struggle to maintain life-as-we-know-it at any cost is like insisting that we keep eating the appetizers when the chef is waiting in the kitchen to give us the main course. It's all moving, folks! Don't waste more time on cheese and crackers when the time has come for steak.

Anonymous said...

I totally agree with you on this one. It is a touchy subject that is polarizing this country. Everyone has an opinion and yet none of them are wrong. This is an individual choice, much as hair style or cloths. It is maybe a wee bit more important then appearance, but none the less individual. Without true definitions of what makes up the soul (physically), what is the meaning of every life and how does that translate into your current state, there is no standard the world to follow.
I have a few questions that I am pondering on this subject:

Is this just another example of man getting in the way of God’s will on this earth?
Is medicine, the life enhancing and God given blessing, being used to go against God’s will?

Without knowing God’s will for Teri, you or me, can we ever answer these questions?

Life is precious and should be preserved. Man taking a man’s life is wrong. This we know. But what about man extending a man’s life past God’s will? Would this also not be wrong?

Lots of questions, no easy answers.

Take care my friend, I hope all is well.

Faust said...

His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him.

Sometimes I wonder if God uses our infirmities to draw people toward one another. If we are in a persistent vegetative state without a terminal illness, what if God just wanted to use us to draw people together in caring for us. Sometimes I wonder if this motive doesn't lie behind a wide array of human illness and disability.

Whatsoever you do unto the least of them...