Minimally Conscious, Not Minimally Human: Caring for the 'Smallest' of Lives
What gives human life value? How we answer that question will determine who lives and who dies.
In the movie "Monty Python and the Holy Grail," comedian Eric Idle leads a cart full of dead bodies through a plague-ravished medieval village yelling, "Bring out your dead!" Python's John Cleese approaches the cart carrying a very old man on his shoulder. Cleese points to the old man and says "here's one!" whereupon the supposedly-dead man protests, "I'm not dead."
By way of proof, the old man says, "I think I'll go for a walk." But the characters played by Idle and Cleese are busy men who can't be bothered. In the end, the old man ends up on the cart.
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When I saw that scene as a teenager, I thought it was hysterically funny. Now, not so much—especially since the way we decide who lives and who dies these days is getting nightmarishly scary.
What brought the Python skit to mind was a compelling article in the New York Times by physician and bioethicist Joseph J. Fins entitled, "Brain Injury and the Civil Right We Don't Think About."
In it, Dr. Fins tells the story about a young woman named Maggie. While still in college, she had suffered a "complex stroke" involving "areas deep in her brain."
As a result, she was thought to be in a "vegetative state," a state "most of us associate with … the legacies of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo."
Medically speaking, people in a vegetative state are "able to regulate their heartbeat and breathing without assistance," but otherwise don't display "any meaningful responses . . . or show [any] signs of experiencing emotions."
But it turns out Maggie was not in a vegetative state. She was in a "minimally conscious state," or MCS. People in a MCS "demonstrate intention, attention and memory." In Maggie's case, she was even able to communicate through eye blinks.
The problem is that these demonstrations of consciousness often happen intermittently, so when family members tell medical staff about them, these reports are often written off as "wishful thinking."
MCS was not formally recognized until 2002, which prompts a disturbing question: How many people whose food and water were withdrawn were conscious of what was happening to them?
A study Fins cites suggests that the answer could be "a lot." The study "found that 41 percent of patients with traumatic brain injury … and thought to be in the vegetative state were in fact in MCS."
Dr. Fins goes on to point out the human brain is remarkably resilient. His colleagues documented how Maggie's brain rewired itself over the years, enabling her to interact with others. That raises the question of how willing we are to provide folks like Maggie the medical and rehabilitative care they need to live what many among us might consider to be very limited lives.
But as Dr. Fins writes, "What is at stake here is more than a simple insurance question or access to care. It is a more fundamental question of basic civil rights, leaving conscious individuals isolated and abandoned."
Even something as simple as pain control is often denied these people, who are "unable to cry out in pain." This Fins says, "constitutes a disrespect for personhood that should be beyond the pale in any civilized society."
Maggie eventually passed away. But as her mother told Dr. Fins, for her daughter it was "enough to have a life, even a small life," adding, "I think a small life is O.K."
It certainly is. In fact, every life is holy. Not because of what a person can or cannot do, enjoy or not enjoy, but because each and every one of us bears the image of God. And how we treat even the smallest of lives shapes the society in which we live—and our souls as well.
Originally posted at breakpoint.org
