Food for Thought on End-of-Life Issues

Jul 15, 2011 | 3 comments

In today’s New York Times, David Brooks op-ed column, titled “Death and Budgets,” makes a number of good points about our ability (or inability) to face death and the costs we incur to try avoiding the final deadline.

Brooks starts out referencing a column that was in Sunday’s paper,”The Good Short Life” by Dudley Clendinen, who has amyotrophic lateral sclerosis, or A.L.S. Clendinen described it as “more kindly known as Lou Gehrig’s disease, for the great Yankee hitter and first baseman who was told he had it in 1939, accepted the verdict with such famous grace, and died less than two years later. He was almost 38.”

There’s no treatment or cure for A.L.S. Clendinen refers to the disease as Lou. In Clendinen’s words:

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 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. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.

And that’s the point. This is not about one particular disease or even about Death. It’s about Life, when you know there’s not much left. That is the weird blessing of Lou. There is no escape, and nothing much to do. It’s liberating.

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.

Brooks commentary in today’s paper:

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.

The fiscal crisis is driven largely by health care costs. We have the illusion that in spending so much on health care we are radically improving the quality of our lives. We have the illusion that through advances in medical research we are in the process of eradicating deadly diseases. We have the barely suppressed hope that someday all this spending and innovation will produce something close to immortality.

Years ago, people hoped that science could delay the onset of morbidity. We would live longer, healthier lives and then die quickly. This is not happening. Most of us will still suffer from chronic diseases for years near the end of life, and then die slowly.

Brooks offered links to other essays for other perspectives on why we should accept the finitude of life and the naturalness of death.  “Born Toward Dying,” by Richard John Neuhaus is especially thought-provoking

At the ADEC conference, I heard an MD talk about all the scary, invasive things the doctors in a hospital can do to keep you alive, when the family says, “Do everything possible.” Sure, they can keep your body functioning, but is this version of life worth living?

Hospice can be such a gift to the patient and family to make for the best quality of life when the quantity of days is limited.

I’m all for living as fully and deeply as possible every single day. We as a society need to recognize that our vaunted medical care system cannot enable us to live forever – and would we really want to?

A Good Goodbye