Over the last few decades, advances in medical technology have dramatically changed the way we die. In the good ole days (not always so good), families waited patiently at the bedside of dying loved ones while nature took its course. With the wide array of medical drugs, procedures and devices that are now available, it is possible to keep a person alive long past any discernible quality of life. Dying has become more complicated because sometimes we have to choose death, and often that choice concerns others.
My father died from pneumonia. This is a common way for people with Alzheimer’s to go because as the disease progresses the ability to swallow is compromised. Food gets lodged in the windpipe and pneumonia results. Pneumonia, however, is treatable with antibiotics and death can often be delayed for another time.
My father had an advanced directive requesting no heroic treatment in the event that returning to an acceptable quality of life was unlikely. Who can say what is an acceptable quality of life for another? The quality of my father’s life had drained away over the years of his disease, reduced, it seemed, to an occasional moment of pleasure when my mother popped a piece of chocolate in his mouth. A once brilliant mind that had taught electronics to experts was in tatters. He spoke in gibberish, was bed and chair bound. It was excruciating to seem him so diminished.
When he developed pneumonia, mother decided to say no to antibiotics per his directive. Unfortunately, she was asked to repeat this decision with each change of the nursing staff at the facility where my father resided. Several days of this, reduced my mother to hysterics. She felt she was being asked to sign my father’s death warrant over and over. Of course the nursing facility had its own priorities and one of those was to make sure it did not err on the side of failure to treat. Relief from this demented dance came when a neighbor suggested my mother request hospice. Note that this suggestions came from a neighbor, not from any medical personnel. Once hospice certified that my father had less than six months to live and was hospice appropriate, the phone calls from the nursing home ceased. My father died a few weeks later.
The issue of when to stop treatment of a loved one can be very complicated, so complicated that there are ethical committees to help decide what is legal and what is not. The definitions have changed over time sometimes from legal actions. The name Karen Quinlan comes to mind.
In Katy Butler’s book, Knocking on Heaven’s Door, she describes how her mother agreed to have her father fitted with a heart pacemaker. It was a decision she later came to regret as his dementia — mild after a stroke — was made worse by the operation and the quality of both their lives plummeted. It is now legally possible to have a pacemaker turned off. At the time, it fell into the gray area.
Dr. Ken Murray wrote an essay about physicians’ choices for their own end of their life protocol. He reveals that doctors overwhelmingly chose a more palliative, less treatment aggressive course for themselves than they recommend for their patients. What do they know that they are not telling the rest of us?
To help us consider some of the ramifications of when to say no to medicine, I have invited Monica Wesolowska, author of Holding Silvan: A Brief Life, to be my next guest on the Mystery and Magic of Life and Death, Thursday, November 7th, at 5:30 pm PST. She will share the story of ending the life sustaining treatment of her otherwise healthy son who was severely brain damaged during birth.
With an introduction by Erica Jong, Holding Silvan has been critically acclaimed and internationally published. A public speaker on motherhood, medicine and mortality, Wesolowska has also published her short fiction and nonfiction in many venues including The New York Times, The Carolina Quarterly, Literary Mama, and Best New American Voices. She teaches writing at UC Berkeley Extension.
While Monica’s story is at the other end of the life cycle than many of us will be facing, the choice is the same. How do we decide when to say no to medical treatment? What is quality of life? What is compassionate? What is loving? What is in the best interests of all involved? I am excited to offer this discussion. We need to share our stories so that we can learn from others. We need to know what questions to ask, to know our limits and to make choices based on knowledge and love rather than fear or misguided responsibility. I hope you can join us for this important conversation.
In case you missed it, here’s the link to my interview on BlogTalk Radio with host Uma Girish: http://www.blogtalkradio.com/creatingcalmnetwork1/2013/10/24/the-grammar-of-grief-with-uma-girish
Michelle
WANT TO USE THIS ARTICLE IN YOUR EZINE OR WEB SITE? You can, as long as you include this complete blurb with it: Grief Transformation Coach Michelle Peticolas, Ph.D. helps people transform their grief with a holistic approach to mind, body and spirit that heals trauma, reframes past attachments and releases limiting beliefs while uncovering a true life purpose and direction. If you’re ready to shift into a whole new way of being with death and loss, a new way of living your life, get Michelle’s complimentary guide, Essentials for Grieving Well at www.secretsoflifeanddeath.com
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