This all started simply enough. On July 9, the New York Times published an essay by Dudley Clendinen titled The Good Short Life With A.L.S. In the essay, Clendinen, who has previously worked as a correspondent and as an editorial writer for the paper, shared his thoughts on living with A.L.S. – which he calls “Lou,” short for Lou Gehrig’s Disease. He also shared his anticipation of his death.
First, here are some of his thoughts on living with the condition:
I began to slur and mumble in May 2010. When the neurologist gave me the diagnosis that November, he shook my hand with a cracked smile and released me to the chill, empty gray parking lot below.
It was twilight. He had confirmed what I had suspected through six months of tests by other specialists looking for other explanations. But suspicion and certainty are two different things. Standing there, it suddenly hit me that I was going to die. “I’m not prepared for this,” I thought. “I don’t know whether to stand here, get in the car, sit in it, or drive. To where? Why?” The pall lasted about five minutes, and then I remembered that I did have a plan. I had a dinner scheduled in Washington that night with an old friend, a scholar and author who was feeling depressed. We’d been talking about him a lot. Fair enough. Tonight, I’d up the ante. We’d talk about Lou.
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 most important, they taught me that I can do anything, one day at a time.
I think it was this part – and maybe a couple of other lines – that inspired one friend of mine to send me a link and have me take a look, saying that in some ways it ran counter to the Kevorkian message that reran last month in the aftermath of Kevorkian’s death.
I wasn’t so sure. There were many other parts of this essay that troubled me and it made me kind of hope that it wouldn’t get a lot of attention. Here’s an example of what I found troubling:
There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.
No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.
I was close to my old cousin, Florence, who was terminally ill. She wanted to die, not wait. I was legally responsible for two aunts, Bessie and Carolyn, and for Mother, all of whom would have died of natural causes years earlier if not for medical technology, well-meaning systems and loving, caring hands.
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 at a passing cloud.
I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.
If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.
I’d rather die. 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. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways.
I think the problems start to be pretty obvious, even without the suicide plans. Although he respects “the wishes of people who want to live as long as they can,” the consideration regarding just whose money will be used to support that life applies to anyone who isn’t fantastically wealthy.
Turns out I didn’t have to wait long for someone to pick up on the essay and its themes of “quality of life” and “expense” using Clendinen’s essay as a jumping-off point.
On July 14th, the New York Times featured an article by columnist David Brooks, titled Death and Budgets:
I hope you had the chance to read and reread Dudley Clendinen’s splendid essay, “The Good Short Life,” in The Times’s Sunday Review section. Clendinen is dying of amyotrophic lateral sclerosis, or A.L.S. If he uses all the available medical technology, it will leave him, in a few years’ time, “a conscious but motionless, mute, withered, incontinent mummy of my former self.”
Instead of choosing that long, dehumanizing, expensive course, Clendinen has decided to face death as one of life’s “most absorbing thrills and challenges.” He concludes: “When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over. It’s time to be gone.”
Clendinen’s article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do.
But it’s also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death — our willingness to spend our nation into bankruptcy to extend life for a few more sickly months. (Emphasis added.)
You don’t have to be a health care policy analyst to see where Brooks is going with this. In several ways, he elaborates on his theme that too many of us are insisting on living when too sick (or disabled, although he wisely stays away from that term) to do “the activities with others you were put on earth to do.”) He also doesn’t say if he agrees with Clendinen’s list – whether tying a bow tie, walking a dog, or tie a shoe – are essential to a life worth living.
It’s hard to know where to begin with an essay like the one Brooks wrote. Fortunately, I’ve found a couple of essays that overlap with concerns that NDY (and me personally) would share.
David Brooks appears to have made a remarkable leap forward today. He told readers, “the fiscal crisis is driven largely by health care costs.”
Yes, after writing endless columns about out of control government spending and the wild liberals in the Democratic Party, someone apparently got David Brooks to look at the budget numbers. And, he saw what every budget wonk knows. While the current deficits are overwhelmingly the result of the devastation caused by the collapse of the housing bubble, the longer term shortfall is entirely the result of the projected rise in health care costs.
However, it seems that no one told Brooks that the problem is not that people in the United States are getting too much care, the problem is that we are paying too much for the care we get. The United States pays close to twice as much for its drugs, its doctors, its medical equipment as people in other wealthy countries. As a result, our per person health care costs are more than twice the average of other wealthy countries, even though they all enjoy longer life expectancies. If we paid the same amount per person for our health care as people in other wealthy countries, then we would be looking at long-term budget surpluses, not deficits.
This means that Brooks’ discussion of our willingness to die when life loses its joys is beside the point. The choices around the end of life are important and difficult, but that is not our health care cost problem. Our health care cost problem is the cesspool corruption that we rely upon for our health care.
Brooks has made a huge step forward by recognizing that the fiscal problem is not one of government spending generally, but rather spending on health care. Now he has to make another huge step forward to recognize that our health care system is a money pit that is better at transferring money to providers than giving care to the public.
And that’s the type of rationing that conservatives embrace. It was just a little over two months ago that we wrote about Eric Cantor’s unusual candor about his being OK with market-based rationing. I doubt we’ve heard the end of how expensive some of us are and what a drain we are on the public welfare. Not by a longshot. –Stephen Drake
h/t to Gary Presley and Blane Beckwith for alerting me to one or more articles referenced/excerpted in this entry.