A glioblastoma brain tumor (yes, the same diagnosis as Senator Kennedy) is what took my mother's life several years ago. The last six months of her life were void of what I consider "quality". She did all the right things such as having a living will to guarantee no feeding tube when she could no longer swallow. She had hospice care which was a blessing to all of us. While the suffering was immeasureable, I don't think she would have done anything differently.
In the years since her death I have pondered what I would do if it were me. While I haven't totally resolved it, I feel quite sure that I would do things differently. Dr. Welsh's article has offered some of the best perspective I've ever read. It's a guideline that I think I could live with. (Die with?) I urge everyone to read the entire article.
http://www.madison.com/...
Martin Welsh: My wishes as a doctor dying of ALS
Welsh — 7/30/2009 4:59 am Martin
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
.
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've lost 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. 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, 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 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."
Martin Welsh grew up in Los Angeles and graduated from medical school at the University of California, Los Angeles. He now resides with his wife in Camino, Calif. This column first appeared in the Los Angeles Times.