hypanis.ru November 2018 - Having Your VoiceHaving Your Voice


Being clear about his choices.

B died on November 1st, 2018 in the afternoon after struggling with ALS since the summer of 2017.  I think that he was 81 years old.  He was a quiet, caring, and shy man who had difficulty sharing his emotions.  He was a dear friend and a colleague as we had both been professors at the same university in 1969 when we met.

On numerous occasions as we socialized, the idea of how we would want to die was discussed and he was consistent and resolute that he didn’t want to suffer, to be a burden, or to linger.  He’d seen that with both his parents and two brothers and that was not for him.  His usual refrain was “just take me out in the woods and shoot me”.

When B was diagnosed with ALS, we talked by phone about his options and he declared that he didn’t want a feeding tube which would be necessary because his ALS made it impossible for him to manage swallowing.  In September of 2017, he told me that he’d “done the research” and the feeding procedure was very susceptible to infection at the entry port.   He was very clear that he didn’t want a feeding tube.  However, he was having a great deal of difficulty receiving nutrition and hydration because swallowing difficulties caused gagging and choking.

B had weighed about 190 pounds and by early December he weighed 145.  It was then that he chose to have a feeding tube installed and began a process of 4 daily feedings of liquefied food.  Almost every feeding resulted in violent stomach aches.  Occasionally he would take something by mouth but the consequences of that were usually very unpleasant.  When he died, he weighed 120.

The months since the feeding tube have seen him gradually deteriorate, loosing some of his mental capacities and towards the end being unable to do much of anything other than sleep and receive his feedings.  He was able to communicate up to a few weeks ago when the ALS took his ability to speak.  He used a white board then.

Changing his mind and struggling to live

Of great interest to me is the decision that B made to reverse course when he saw that he was facing death, accept a feeding tube and all the compromises that his illness imposed, and soldier on with trying to live.  It is one more lesson to me about the power of our will to live which is especially energized when we are facing a real death, not one speculated about and discussed over drinks in an intimate setting when we are healthy.

While I’m sure that there have been some good moments spent together with B during the past 13 months as his disease progressed, I have also known that his decision has had consequences for the family.  These include the pain and anguish of seeing him suffer with the ghastly symptoms that ALS brings upon a person, the periodic life threatening crisis which occurred and necessitated worrisome phone calls and quick visits to his bedside.  And especially to his wife of 55 years who has been by his bed side and seen how much suffering he has experienced.

Reflecting on my choices…

I have been teaching about end of life planning and medical directives now for almost 9 years.  I have read widely, heard countless stories of good and bad endings, and I have tried to imagine what I would do if I were confronted with a life threatening illness.

I know what I think I want which is a less prolonged suffering and a more peaceful end.  I do not want to linger in a diminished state and I‘ve often joked that when I no longer care about listening to NPR or watching PBS, then there is not much to live for.

I am even clearer and feel strongly that I don’t want to be a burden to my wife or family with an extended illness. I would like time with each of them, but I don’t want them to be filled with worry and concern that drags on and on.

I underlined think” because I don’t really know what I will feel when I am faced with a possibly fatal illness and leaving this earth.  B has taught me that I can’t count on my thinking when  I am facing death.  The power of that existential moment of facing death is enormous and mysterious to me.   It is only certain that it is a matter of time until we face it.

Some who read this may be clearer but none of us know what will happen until we are faced with our mortality.

What do you think that you would do if you were B?

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