When Quality of Life Means Everything
Nov 3rd, 2009 by Mark Stricherz
In the early years of the anti-abortion movement, supporters argued that eliminating the right to life for the unborn wasn’t just bad for those in the womb (and their mothers). It was also bad for those out of the womb. Once society takes away one class of human being’s right to life, they argued, it will take away another class’ right to life. For decades, it was possible to believe that this line of argument was wrong-headed at best or fear mongering at worst.
But the events of the past two decades have shown that the anti-abortionists’ argument was prophetic, if less dramatic than they predicted. More bad criminals were executed by the state. The frailest of the elderly were euthanized. And in Europe at least, brain-damaged infants were taken off of ventilators.
Now another class of humans is being targeted: infants without a high quality of life. That’s the gist of a story from the Daily Telegraph in Britain. Although I don’t like to post stories in full, I think this story gives you the necessary details:
A British hospital wants to remove a 1-year-old boy born with a rare neuromuscular condition from life support, but the child’s father is fighting to keep him alive.
The baby’s mother agrees with hospital officials, who plan to seek High Court permission Monday to remove the boy from the ventilator that allows him to breathe, British newspapers reported Sunday.
The infant, known only as “Baby RB,” was born with congenital myasthenic syndrome, a muscle weakness that limits the movement of his limbs and his ability to breathe on his own. He has been in the hospital since birth.
Lawyers for the father say the baby’s brain is unaffected by the condition, so that he can see, hear and feel and recognises his parents. He is also able to play with toys and enjoy stories and music, they say.
If the hospital’s application is successful, it would be the first time that a UK court has, against the will of a parent, determined that life support may be withdrawn or discontinued from a child who is not suffering brain damage.
A court order prevents identification of anyone connected to the family or the hospital.
Dependent on a ventilator to breathe, the child has been in hospital since birth.
His father, in his twenties and who is amicably separated from the mother, believes a simple tracheostomy procedure, which creates an opening in the neck to deliver oxygen to the lungs, would allow Baby RB to be discharged from hospital to be cared for at home.
But the hospital, backed by the child’s mother, says the baby’s quality of life is so low that it would not be in his best interests to save him.
In an attempt to persuade the court that Baby RB’s quality of life is such that the hospital trust’s application should be refused, the father will submit video footage showing his son playing with his toys and interacting with his parents, who have both been at their son’s side since his birth, living at dedicated family accommodation near the hospital.
Christopher Cuddihee, a solicitor who is acting for the father, said: “This is a tragic case. The father feels very strongly that Baby RB has a quality of life that demands the trust should continue to provide life-sustaining treatment. The father clearly adores his son and hopes to demonstrate to the court that the trust’s application should be rejected.”
Congenital myasthenic syndrome is the result of a gene abnormality affecting the junction between the nerve and the muscle, disrupting the ’signal’ between the two when the nerve wants the muscle to contract – resulting in muscle weakness and ‘floppy’ limbs.
Degrees of severity vary tremendously among the 300 people in the UK with the condition. The most commonly affected – and obvious – muscles are those in the face, resulting in a telltale inability to smile. Those around the eyes are particularly affected, leading to leading to double vision and droopy eyelids.
The premise of the wife’s and hospital’s argument, and the husband’s too to an extent, is that quality of life should determine whether a person lives or dies. The boy can’t breathe on his own, so he should die, one side argues; the boy can play with toys, so he should live, another side argues. What should be obvious to everyone, I think, is that quality of life is an inherently subjective criteria.
It’s also a bad criteria. Quality of life is what some philosophers call a secondary characteristic of humanity, just as race and gender are. It’s not a primary one. All humans are whole, separate, and unique. When society turns its back on this standard, I’m afraid to say, it seems to be only a matter of time before your group will be targeted. Think of it as like the final scene in Peckinpah’s Bring Me the Head of Alfredo Garcia: Sooner or later, the gun will be pointed at you.



