Not long after the birth of our first child, my husband and I decided we needed a will. It seemed like the responsible adult thing to do. We wanted to make sure we had a plan for our daughter if … God forbid … anything should “happen” to us. Prior to our meeting with the attorney, our discussions centered around guardianship and asset dispersement (if any). Of course, these events were contingent upon something “happening” to us … i.e. our deaths … yet that wasn’t a consideration until we sat side-by-side at a dark mahogany table with advanced directives in front of us.
“What are your wishes should you be faced with a terminal illness or injury?” asked a kindly, gray-haired gentleman in a dark suit, white shirt, and tie.
“Pull the plug,” I immediately said, signed the document, and pushed it across the table to the attorney.
“Whoa! Wait. Really?” my husband looked at me in shock.
While I viewed my decision as brave and unselfish, minimizing the burden on him, he viewed it as weak and inconsiderate of him and our child. Our polar reactions are representatives of the fuel needed to heat up the recent debate on end-of-life decisions sparked by the announcement that Barbara Bush (God now rest her soul) would no longer seek medical treatment for her terminal illness, but instead opt for comfort care.
Was she giving up? Was her family and doctors failing her? Or was she just tired of suffering, and therefore her family saw it as the most humane request to honor?
Quite frankly, it’s none of our business, am I right? Perhaps it makes sense to be more concerned about our own decisions. Because guess what? We all will die. 100% of us. While dying is an experience we all will share, Americans are reluctant to speak of it. We don’t like to face our own mortality. Modern medicine has provided us a shield of protection that we think will guard us from ever needing to address this topic.
We have become so focused on life at all costs that dying can cost us dearly.
During the summer that my mother was in hospice care and actively dying, I read the book Being Mortal by bestselling author and doctor Atul Gawande.
Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.
I had never prayed for death before the summer I watched my mother die. Her well-being was compromised in more ways than one. She had reached the limits of modern medicine. We as a family knew that comfort care was the right decision, yet, even then, it was the most difficult and painful experience to navigate. I can only imagine how many times more the heartache of a family is if there is no end-of-life decision in place.
So, what to do?
- Think about your end-of-life wishes no matter your age or health and share your wishes with someone you trust.
- Honor your loved-one’s decision. You may or may not wholly agree with them, but if they have made their directives under sound mind, then the most loving thing you can do is carry out their requests.
- Finally, please don’t judge others’ decisions. People are completely capable of questioning their own decisions without getting unwanted feedback from those who aren’t intimately involved.
I felt like Dr. Death himself when I prayed for my mother’s death … for something to “happen” to her. In reality, many things “happened” to her. I couldn’t have prevented them if I wanted, but I knew those “happenings” needed to stop. And I knew we had the power to stop them. We could ease her pain and suffering and provide her a dignified death. Choosing comfort care freed up our family to soothe her and console each other, and to prepare for her last breath … so in the end, we wouldn’t be surprised by death.