End of Life

Last summer most of my brothers and sisters rafted the Colorado River through the Grand Canyon. Like all Sargent adventures, conversations ranged far and wide and deep. Yesterday, my brother Wayne emailed the siblings an article, "I Know You Love Me--Now Let Me Die," by a Dr. Louis M. Profeta, with this heading, "A little follow-up on our Grand Canyon conversation." 

Here's my response.

I just finished a book Suzanne recommended on the same topic, “When Breath Becomes Air,” and with the one we read last summer, “Being Mortal,” we certainly have a lot to think about. When Jay and I updated our family trust recently, we were advised to name those to whom we give power to relay our desires concerning end of life care—rather than relying on written directives. The reason for this would be these individuals would know our latest wishes rather than forcing the medical staff to abide by what we put in writing and perhaps have changed our minds about. I can’t imagine changing my mind on the basics: no extraordinary means when it’s clear the outcome is being in a "vegetative state,” do not resuscitate if I’m 99 years old and so on; but what if I’m on my way to the hospital in a coma after a serious fall (knock on wood) next week?! Or in ten years? Twenty? (do, do, don’t). Annie and JuliaAnne are our plug pullers, just so you know.

Of course, my visiting teachers were here last night. One is a nurse in cardiac care and she says that if a patient’s children are there and even one says “keep mom alive,” they will follow that one, regardless of paperwork or medical power of attorney status. I’ll be eager to hear Saundra on this one. 

Another thought—in keeping with Jerry, or was it Wayne, who said in our discussion at high altitude in Colorado after a long bike riding day, “Anyone who needs to call Dr. Kavorkian simply has no imagination,”—I have a friend in the last stages of ALS, now on a feeding tube and with breathing support at night. At lunch yesterday with friends, I was told of another woman with ALS who did not want to be helpless, or even in a wheelchair and simply stopped eating. Watching my own friend’s beautiful and spiritual journey “home,” I think ending it prematurely wouldn’t be my choice, but get Hospice so I don’t burden my kin TOO much! And if it’s Alzheimers, don’t insist that I eat. Better yet, take me on a dangerous hike. When the trail is icy.