Britain has another terminally ill young child, Alfie Evans, whose parents want to continue the fight for the little boy’s life contrary to medical opinion that life support is only prolonging suffering. The Pope has intervened, offering a place for the child at a hospital run by the Catholic Church in Rome. British courts have nixed the idea, saying the child cannot be removed from the country.
These are wrenching decisions, with no clear agreement on who should make them. In Britain, the courts have the final say. Here in the United States, great deference is often given to families. Jahi McMath, a teenager declared brain dead in California in 2013, is still on life support somewhere, attended to by family. A recent New Yorker article points out that there has been no change in her condition. According to the state of California, she is dead. But respiration, nutrition, and other vital functions are being provided to her, and she remains in some state between life and death.
To me there’s something a bit ghoulish, especially in the case of the teen, about family hovering around painting her nails and fixing her hair and buying new pink bedclothes while she lies unresponsive month after month, year after year. No one knows if she is feeling anything, especially pain.
Care of an unresponsive patient is extremely expensive. Resources going to keep Jahi and Alfie alive could benefit many more children, those with some future to behold. Hard to talk about, but true.
I think these are wrenching decisions. I have young grandchildren, and can’t imagine being the one to say that life support should be withdrawn should something terrible befall either one. But I also think it’s cruel, and a bit of a fetish, to keep a body “alive” when there is no hope of any quality of life. In some ways it feels easier for medical personnel to make the call — and yet that’s what has been fiercely resisted by Alfie’s parents, by the parents of Charlie Gard earlier, and by the family of Jahi McMath.
No easy solutions here.