100 Things Leading to a Single Choice

100 Things Leading to a Single Choice                          By Dr. Martin Welsh

July 26, 2009:  As his health fades, a doctor’s acceptance of death over excessive medical intervention illuminates the difference between life and living. Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, California.

 I am a fifty-five-year-old retired family doctor with a large, loving family, innumerable friends, and former patients whom I see often. I am an extraordinarily lucky man. For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness where a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Throughout my career, I tried to honor my patients’ end-of-life wishes. But after a quarter century as a firsthand witness to death, I’ve developed my own perspective. It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.”

That said, there will come a limit. I have made it very clear to my wife, my family, and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheostomy when the time comes that I can no longer eat, drink, or breathe for myself.

Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine’s increasing ability to prolong life near its end.

I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful—for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs, and my speech.

But as much as I have stayed focused on what I’m still able to do, it has become harder to ignore the things I’m losing. Today, my guitars sit idle and I haven’t used my stethoscope in years. My jogging shoes gather dust in a closet, as I watch my belly grow from lack of exercise. I remember the last time I tried to shoot a free throw with a basketball, and I was five feet short of the rim.

Today, I find myself facing the kind of quality-of-life issues I discussed innumerable times with my patients. Answers vary from person to person. But the fundamental question is always this: At what point is quality of life no longer worth the emotional and physical costs of maintaining it?

I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. As a physician, I have seen so many good deaths in my time, so I know this passage can be peaceful, spiritual, and even comforting to those left behind. I hope for such a death.

I’ve also started to think about how I’ll know when I am ready for it. To that end, I often think about what I call the “100 Things.” Here’s how it works. Imagine a list of 100 things you do most days. Some are routine, some are chores, and some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed, and put a stamp on it. Hug your child.

Of course, we do much more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. If you take one away, you can still do ninety-nine. Is life worth living without being able to smell the rose in the garden? Of course, it is! How about losing two or seven, or twenty-three—is life still worth living? Of course.

But suppose you get to where you’ve lost, say, ninety things, and now with each thing taken away, a bad thing is added. You can no longer walk well, you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can’t turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you’re getting tired.

At some point, no matter who you are or how strong, you can lose enough things that matter—and acquire enough negatives—that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight, and it was now okay to accept moving to the next phase.

I know that one day I will reach that point, which is why I worry about feeding tubes and ventilators. It’s been my experience that there are times where these things start almost automatically, and once they start, they are next to impossible to stop.

I’ve seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in—as if they had a right to do so.

I worry that at some point, a feeding tube or another artificial substitute for a basic body function, will be medically indicated in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I’m forced to live well past where I would want to say “Enough.”

I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don’t want to go. I am determined not to start down that path, even if others think I’m premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of 100 hundred things that make life worth living—the choice of quality over quantity has to be mine to make.