Prolonging life: the ethics of suffering

I"ve shared with you Mitchell's Journey on facebook. This young boy and his family are facing his impending death from a terminal illness. I watch this kind of heart wrenching experience regularly at the bedsides of children in the Intensive Care Unit. It is agonizing and never gets easier.

On the other hand, I also see, and participate in, prolonging the life of a child at any cost and with all available life support and technology. In most situations this is the appropriate and right thing to do. Other times, my soul feels pummeled as we continue to provide everything to a frail and battered body that has fought for as long and as hard as it can. After each treatment, with each setback and failure to improve, we ignore the message the child is sending, "I can't fight anymore, please, let me go."

As I followed Mitchell's Journey, I was in awe of his family's love and devotion to him. Through the pictures and stories I saw their desire to give him any experience to bring a smile to his face, to celebrate happy moments, to spend all the minutes of all the days with him before his death.

Then came the announcement of an LVAD to prolong his life and everything inside of me screamed NO! In my mind this was wrong. It would mean separating and splitting his family to travel hundreds of miles away, to surgically implant an extremely invasive machine into his heart, to attach his body to a large and cumbersome machine forever. It would mean forcing his weak, fragile body to undergo anesthesia, fight to recover and regain what little strength he had before, wait for his body to accept this foreign device. It would mean balancing blood thinners and preventing an infection that could be deadly. He would have to spend weeks in a hospital far away from his home and his family and friends that he loves. In the best case scenario, it would prolong his life. But it is not a cure. He would still die and his parents would still grieve.

Mitchell's family decided not to pursue the LVAD. I felt vindicated for my opinion then disappointed in myself for judging his parents about a decision that was not mine to make.

Tell me: why does this cause me such distress and anguish? He's not my son or nephew or neighbor. He is a boy I have come to know through a blog his father shares with the world. The naked emotions his father exhibits bring back my own experiences. Author and physician Samuel M. Brown put it best:

               
                There is something like a community of people who have suffered the death of a 
                loved one. Those of us who have lost a parent or a lover or a friend or a child know
                something that no one else does. It is not a language, really, but a shared awareness 
                that is difficult to communicate to someone who has not experienced such grief.

This is a tragic situation of loss and one that will repeat itself hundreds of time a day in our country alone.
This is what my blog is about: to open dialog, to explore suffering, to have discussions about dying. As an Intensive Care nurse, I am uniquely positioned to see the duality of technology,  saving lives and prolonging suffering. I firmly believe that our American society fears death - that inevitable experience we all will have and cannot escape. Only through knowledge and discussion can we accept severe illness and approaching death as a place to gather friends and family, lean on the strength of community, and celebrate that life, that soul, who is most precious to us.