100 things, leading to a single choice
Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009. Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. Dr. Welsh passed peacefully, surrounded by his family at his home in Camino, Calif, on October 28, 2010. He is featured in a PBS documentary, "Consider the Conversation". His amazing philosophy about facing the end of life inspired a film maker to include him in his work about death and dying.
“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? I am not afraid of dying or death, and that is a
wonderfully comforting thing for me right now. I have seen so many
"good" deaths in my time as a physician that I know this passage can
be peaceful, spiritual and even comforting to those left behind. I hope for
such a death.
I have also started to think about how I will 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," some are
pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer
the phone. Drive your car to work. Go 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 many more than 100 things each day, but
for now, just imagine 100 that are essential to the life you live. Now if you
take away one, you can still do 99. 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 23 -- is life still worth living? Of course! But suppose you get to where you've lost, say, 90
things, and now with each thing taken away, a bad thing is added. You can
no longer walk well, and 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 OK to accept moving to the next phase.
I know I will one day reach that point. And that's why
I worry about feeding tubes and ventilators. It has been my experience
that these things are at times started almost automatically, and once they are
started, they are next to impossible to stop. I have 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 other 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 am 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 being
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 the 100 things that make life worth living, the choice of
quality over quantity has to be mine to make.”
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