This story is important because it shows a vivid contrast between two approaches dealing with severe human disability–one based on the equality/sanctity of life, and the other a utilitarian “quality of life ethic–currently vying for predominance in the West.
As I see it, the former remains the default approach of “main street,” while the latter is advocated with increasing intensity by our betters in the emerging medical technocracy and ivory tower bioethics.
A man in California has recently died after being cared for by his family for decades in a minimally conscious state resulting from an injury at age 6. From the Seattle PI story:
Mikey, the worst injured, suffered serious brain damage. He was left in a persistent vegetative state, a condition that’s like a coma but lasts much longer. People are able to perform some basic functions, but show only limited, if any, awareness of their surroundings.
Although Mikey would never fully emerge from that state, his father was determined to give him as full a life as possible. When Paul Cortez coached his daughter Angelica and son Tony in soccer, Mikey sat in his wheelchair on the sidelines, cheering them on. When Tony made his high school football and basketball teams, Mikey was at every game.
One year he traveled with his family to the mountain town of Lone Pine, where he sat in his wheelchair, bundled up head to toe against the frigid winter weather while his brother played. At basketball games he’d be at courtside, and at some point in every game his brother would come over and give him a hug.
“He was aware of things going on around him by his eye contact or gestures that he made,” his father said. “He felt pain and he could feel a tickle when we tickled him and he would smile at times.”
Mikey had been injured by a drunk driver, and so he helped convince people not to drink and drive:
Several times a year they took him to schools where his father gave talks aimed at impressing upon teenage drivers the pain that drunken driving exacts on innocent victims. He told them how a man with a blood-alcohol level of .22, nearly three times the legal limit, had gotten behind the wheel of a car with his two young daughters and drove straight into the vehicle carrying an innocent family. The driver and a daughter died too. Then he introduced them to Mikey.
When the talks took Cortez and his family to Florida one year for a Mothers Against Drunk Driving conference, they turned the visit into a cross-country travel adventure, showing Mikey the sites in Texas, Florida, Virginia, Massachusetts and other states.
Caring for such people as long as they lived, either at home or in an institution, used to be the unquestioned norm. But over the last few decades, bioethicists pushed the idea that people with severe cognitive impairments aren’t fully human–“non-persons” in bioethical parlance–and thus, can be abandoned to death–now by dehydration, and eventually to lethal injection.
In this view, such human non-persons possess lower moral worth, meaning they can be killed, mined for organs, or experimented upon as if they were lab rats. (See my book Culture of Death: The Assault on Medical Ethics in America.)
This view of bioethics denies human exceptionalism’s understanding that human life matters simply and merely because it is human, and further, holds that we have to earn our value in each moment by possessing “relevant” attributes. It shatters universal human rights by shrinking the definition of what it means to be human.
This isn’t to say that a sanctity of life culture requires everything that can be done to keep such people living as long as possible, be done. Loving care isn’t the same as an unhealthy vitalism. DNR orders, refusing antibiotics, etc., also can be appropriate ways to treat “the patient as a person,” as the great Paul Ramsey put it.
But I am saying it is wrong to treat our cognitively devastated brothers and sisters worse than we ever would animals or criminals through denied sustenance–or looking upon them avariciously as a corn crop ripe for the harvest.
Currently, either path can be taken. But I worry that the utilitarian approach will soon become the required approach in a society mired in a relativistic view of human life, neurotically obsessed with preventing suffering, and cutting medical costs.
So, I present this wonderful story of a family’s unconditional love for your consideration, and note that it is news only because it cuts against the current cultural grain.