In the weeks since the cardiac arrest and the declaration of death for Jahi McMath and brain death for Marlise Munoz, the media has conducted a discourse with ethicists, an elementary school class, the grieving family, and medical professionals. Maybe I missed it, but nowhere have I heard anyone speak with health care professionals, specifically nurses, assigned to care for either of these patients. In this group of care providers, a continuum of emotions and opinions about what is ethical and humane would abound.
After forty years of nursing, I still find most disturbing the provision of care to those who have no chance of a meaningful recovery. I have cared for a patient who was declared dead. The Harvard criteria for brain death includes: unresponsiveness, apnea (no respiratory effort), absence of movement, no reflexes, a flat electroencephalogram, no central nervous depressants in the body, and a core body temperature greater than 32 degrees. The beside nurse observes more subtleties. There is a vacancy in the eyes, an emptiness, and a lack of recognition of the outer world. Many times I have sensed an absence well before the body declared itself done with this life. No one can verify if the spirit transcends the body, but in my experience it seems that way. And it feels that way. Does this change the type of care I, or any professional, provides? No. I still talk to the person as if I’ll get a response, and I handle the body with the upmost tenderness and respect. This doesn’t change the lack of reciprocity in the human connection between this nurse and the specific patient.
Part of the conundrum with end-of-life decisions stems from the failure to differentiate life from living. In the cases of Ms. McMath and Ms. Munoz, a heartbeat defines life. But when she was alive, Ms. Munoz defined living by her ability to do certain things. She did not want life maintained by mechanical means. Each individual defines living differently. For many people, work and certain activities define who they are. For me, I am a nurse, a fitness nut, a reader, a writer, a wife, a homebody, a thinker. I am not sure which roles I could give up, which things I could stop doing, and still feel life had enough value for me to want to live. For me a heartbeat is not enough of an existence to justify the consumption of finite resources that would better serve another human being. These things I have discussed with my husband, my attorney, and have set down in an Advance Directive.
“What about miracles?” you might ask. Have I seen them? Yes. I still cry when I remember walking down the hall with a patient who suffered a catastrophic brain injury. When I saw his father’s face morph with the recognition it was his son coming down the hall, I knew I had been privy to something divine. I can give you all the scientific rationale for why the boy got better: his youth, perfect timing, a tenacious, committed doctor and team of nurses. I can only speculate about a force present, not prescribed by any medical practice. My question to you is this: “If it truly was a miracle, would it have happened had we done nothing?”
When Jahi McMath’s family prays and talks about God’s miracles, I wonder if they could surrender to their faith, remove all life support, and wait for God’s intervention? At a time when they were most vulnerable, experiencing the worst grief parents can endure, the media spotlighted decisions of the most delicate, private nature. I wonder where the reporters will be six months from now. And I wonder if the family will rethink their decision once they have begun to deal with, not only what they have lost, but also with what they have begun.
You may say: “It’s easy for you to say, you haven’t ever been there.” But then you don’t know me or the kind of nurse I am. I remember the first patient I “lost” on my first Christmas Day on the job. I remember my father, my husband’s son, my neighbor, saying they were ready to go when the quality of their lives became intolerable, all for very different reasons. My mouth went dry and I felt embarrassed and sad when I read an article in the newspaper about my own challenged grand-daughter who suffered a brain injury at age six weeks. She is seventeen years old, requires total care, and has never uttered a word. She receives tube feedings, never to enjoy the delightful taste of chocolate or grapes or a well-cooked steak. She passes urine, stool, and has gone through adolescence. Someone must attend to all of her bodily functions. I believe all of us have “been there” at some time and bear the wound of loss deep within us.
Perhaps that is the point of this discussion. These situations are so personal, so private, that people calling the hospital to get information must have a security code. Then how has it come to pass that the law, bureaucrats, and outsiders, who have no knowledge of the people involved, impose decisions on virtual strangers about life and death.
Each person’s definition of living or quality of life determines the path he chooses to its end. I demand this as a sanctified, inviolate right for myself and exclude input from all other external sources. Life, death, and miracles, all very private concerns.
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