Sunday, January 19, 2014

Never An Easy Choice

Today Mark's Daily Apple shared an article about 95 year old Emiel Pauwels' choice of euthanasia after having a grand party to celebrate his life. This man was a senior athlete (competing in the Veteran's Games and winning in multiple categories at age 94) and had been diagnosed with cancer.

I don't know why I was surprised by the number of people posting comments about him "giving up" or that he could have "beat cancer". At 95, cancer treatment can be more devastating than the cancer itself. We don't know anything other than his choice after being diagnosed with cancer and I'm saddened by people's judgement when it comes to death with dignity and issues surrounding death in our culture.

Our society on the whole values quantity of life over quality of life. There are no questions about it. We as a whole are so uncomfortable with death and dying that we look at it as "giving up" or "taking the easy way out" or even "cowardly". We keep people hooked to machines to prolong lives for often times selfish reasons. We don't want to deal with the grief and feelings that accompany loss.

Many people form these judgments having never experienced watching a loved one suffer. They have not witnessed the sadness and suffering that terminally and chronically ill people endure on a daily basis.


This is a picture (probably my favorite ever) of my younger brother, Jesse. 

He made the choice at 29 to enter hospice care. He suffered tremendously for 15 years from gastroparesis and the side effects of his treatment over the years. He did not make the decision lightly. It was not rash.

His choice was NOT "cowardly". His choice was NOT "giving up". He did NOT "take the easy way out".

And our family did NOT try to talk him out of his choice for our own selfish reasons. It was terrifying for all of us to consider life without him, but we honored and respected his choice. We also had to fight to have others respect his choice.

The first hospice organization that was treating him had a new medical director start the week after he had been admitted to hospice care. This man pulled the rug from under our feet by saying that Jesse was too young to make this decision and he was not going to help him commit suicide because our family doctor told him there were other options. He discharged my brother immediately from their care. When confronted about "other options", this man told me he couldn't discuss it with either my mother or myself. (Never mind the fact he would not tell Jesse either what these "other options" were.) We confronted our family doctor, who told us he did not do any such thing.

I made a flurry of phone calls that day to try to find someone, anyone who could help us. Being in a rural community, the first organization was "the only game in town". I called countless organizations that day, but no one was able to help us. I called the last group in the Sacramento region that I could find. While they couldn't help us (we were out of their treatment area), the nurse asked if she could pass our information on to a new group, Bristol Hospice, to see if they could help us.

Again, we were outside of their treatment area, but Bristol Hospice took over Jesse's care and helped make the last 6 months of Jesse's life the best he had experienced in years. He was comfortable. He was able to enjoy the time he had left. He got to see the San Francisco Giants win a World Series. He saw one last Winter Classic. One last Christmas with the family.

Most importantly, he passed away peacefully at home surrounded by the people he loved.

There is something to be said about quality over quantity of life. Having watched my brother (and best friend) suffer for so many years, not just physically but emotionally as well due to his illness, I respected his choice. Tomorrow it will be 3 years that he has been gone. I miss him every day, but take comfort knowing he is no longer suffering.

The choice to die with dignity should be just that, a choice. A choice that is respected like any other. We spend so much time talking about not judging others, yet when the topic of dying with dignity comes up, everyone is quick to judge. We talk so much about respecting others, but when a person chooses to end life extending measures that respect seems to fly out the window.

Life is something to be lived to the fullest and celebrated (not everyone gets the chance to have a grand party like Emiel). Each person has to make their own way in this world, let's keep the judgement to ourselves. 






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