July 12, 2011

"I Will End My Life by My Own Hand When the Time Is Ripe"

The Sunday New York Times certainly flashes some provocative headlines! Last week, it was "Infidelity Keeps Us Together" -- for its magazine cover story about sex-advice columnist Dan Savage's view that stability, not monogamy, should be the goal of marriage. We explored that article just last Friday (below).

This week, it's the line quoted in the title above which appears with a moving and provocative piece written by Dudley Clendinen, a former national correspondent and editorial writer for the Times. The article concerns his November, 2010 diagnosis of amyotrophic lateral sclerosis (ALS, also know as "Lou Gehrig's Disease").

There's no cure or meaningful treatment for ALS, he notes. One medication, Rilutek, might add a few more months of life but at a cost of about $14,000 a year. But that program just doesn't make sense to Clendinen.

He knows that he'll soon need all the "human, medical, technological and loving support" he can get. Nevertheless, in five... or eight... or 12 more years, he'll be a "conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines."

His reaction to this picture:
"No, thank you. I hate being a drag. I don't think I'll stick around for the back half of Lou.
I think it's important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don't talk about how to die."
Still, he retains a positive outlook on the "front half of Lou." Here's his description (which I love!) of his reaction to the diagnosis:
"The next morning, I realized I did have a way of life. For 22 years, I have been going to therapists and 12-step meetings. They helped me deal with being alcoholic and gay. They taught me how to be sober and sane. They taught me that I could be myself, but that life wasn't just about me. They taught me how to be a father. And perhaps more important, they taught me that I can  do anything one day at a time." 
Clendinen says his readiness to opt out at an appropriate moment comes in part from his experience in recent years dealing with the final years of a cousin, two aunts and his mother. He wrote a book, A Place Called Canterbury, about moving his mother to an assisted-living facility. He writes:
"I spent hundreds of days at Mother's side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have looked at a passing cloud. 
I don't want that experience for Whitney (his 30-year-old daughter -- "the gift of my life") -- nor for anyone who loves me. Lingering would be a colossal waste of love and money."
He says he's found a way for "self-deliverance" (my euphemism, not his) -- "a way that's quiet and calm. Knowing that comforts me."

Finally, he writes:
"I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide -- rationally -- not to."
Apropos of Clendinen: What I Heard on the Street
A neighbor recently attended a funeral for a 91-year-old man who had bravely endured the long descent into dementia. When I met her on the street during one of my morning walks, she shared a few observations with me from her time at the funeral with the man's family:
  • Beyond the grief, they shared most of all a sense of relief that the terrible trauma was over -- for him, and for them.
  • They all seemed to agree that their dearly departed would have wanted to make his final curtain call much sooner than he did.
  • There was a living will in place, but the situation seemed too complicated and muddled for anyone to make the decision they all KNEW he would have preferred (an earlier exit). This dilemma created "agony" for them.
  • One family member apparently said he now felt "haunted" by the image of his beloved uncle in bed -- totally out of it, not aware of anyone or anything, incapable of doing anything for himself, having absolutely no pleasure in life, not really "living" at all.
My Final Exit: A Personal View
I've always told my primary care doctors that quality of life is much more important to me than quantity. I have a living will that makes my wish perfectly clear: if I'm in a terminal condition, I do not want any measures taken to extend my life.

Before my diagnosis with Parkinson's, when I was dealing with the Parkinson's-related depression and the assumption that my deteriorating health was part of the aging process and would get progressively worse, I bought the book The Final Exit, which is subtitled "The Practicalities of Self-Deliverance and Assisted Suicide." I'd always considered this option if my prostate cancer, which has been quiescent for 16 years, accelerated and left me seriously disabled and in pain.

With the Parkinson's diagnosis and treatment, the depression subsided and life seemed not only worth living but actually "as good as it gets." At first, I figured I'd renew my exploration of self-deliverance if the Parkinson's left me seriously disabled. I feel differently now. My Parkinson's support group consists mostly of people much further down the Parkinson's road than I am, and most of them still display remarkable zest, eager to create for themselves the best possible lives.

Cognitive function is something else. I'm sure I'd look for a way out if I received a diagnosis of Alzheimer's or disabling dementia. Then I remember the early 1980's, when so many of my friends heard their own death sentences: the horrible, underlying message of every AIDS diagnosis at that time. Surprisingly, none of them -- as far as I know -- chose self-deliverance. Perhaps the potent medications zapped their will power.

So, we'll see. In the meantime, I applaud Clendinen for his courage and honesty in discussing this subject.

Do you see it as he does? Would you choose an "early out" if you faced the long, difficult slide into a disabling dementia? I'd love to hear your thoughts.


John Martin said...

My maternal grandmother, my mother and more recently my mother's brother were all diagnosed with Alzheimer's at one time or another. While I don't want to minimize what a horrible disease it is, it's also true that both my mom and uncle seemed to me at least at least as happy after their diagnoses as before.  This has led me to think about Alzheimer's like this:

Every human -- regardless of age and mental abilities -- is constantly constructing his or her own private vision of reality based on thoughts, ideas, perceptions, memories and the like... our Truths are all based on some limited swath of the vastness of the larger Truth.  A person with Alzheimer's may have a more limited set of material with which to construct reality, but fundamentally the Alzheimer's patient's job is no different from anyone else's: Put it all together, make sense of it, and make peace with whatever sense you've made of it.  This is a skill we practice and hone throughout our lives.  

Candace said...

Enlightening PBS report on "Frontline."
Wrenching and worth watching.
"At this point, I've got two choices," Ewert reasons. "If I go through with it, I die, as I must at some point. If I don't go through with it, my choice is essentially to suffer and to inflict suffering on my family and then die -- possibly in a way that is considerably more stressful and painful than this way. So I've got death, and I've got suffering and death. You know, this makes a whole lot of sense to me."

John Schappi said...

Thanks, Candace.  I got a chance to watch the Frontline video tonight. You're right. Powerful and wrenching.  I had read that, while a few other countries also have legalized assisted suicide, Switzerland is the only one that makes this available to nonresidents and non-citizens. 

Given our political stalemates on anything the least bir controversial, I'm sure this won't become available in the U.S. for years.  Most likely not in my lifetime

John Schappi said...

I agree John, assuming you would include self-deliverance as one of the "private visions of reality" that should be respected. Whether to go this route or not is probably the most difficult and personal decision there is. Each individual's choice should be respected.

For me, the issue isn't whether I'd be happy or miserable in the fog of dementia. I feel strongly that my generation was the lucky generation for the 20th Century -- too young to have to fight in WWII but just old enough to participate in the postwar Golden Age in the U.S. economy. My son and daughter, my three grandchildren and my two great-granddaughters are growing up in a much more difficult time. I want to share my good fortune with them, not have it wiped out wiped out keeping me alive when I'd rather opt out.