I am a 55-year-old retired family doctor with a large, loving family and 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 in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.
Through 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 tracheotomy 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 am still able to do, it has become harder to ignore the things I am losing. Today, my guitars sit idle. 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 the quality of life no longer worth the emotional and physical costs of maintaining it?
