Monday, January 12, 2015

Martin Pistorius case has disturbing implications

Martin Pistorius and his wife Joanna, via the Daily Mail
NPR has the story of Martin Pistorius, who lost all motor function and was diagnosed a "vegetable" but was in fact fully aware of everything that happened around him... for over a decade:
His parents, Rodney and Joan Pistorius, were told that he was as good as not there, a vegetable. The hospital told them to take him home and keep him comfortable until he died.
But he didn't die. "Martin just kept going, just kept going," his mother says.
His father would get up at 5 o'clock in the morning, get him dressed, load him in the car, take him to the special care center where he'd leave him. "Eight hours later, I'd pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I'd wake up to turn him so that he didn't get bedsores," Rodney says.
That was their lives, for 12 years.
Joan vividly remembers looking at Martin one day and saying: " 'I hope you die.' I know that's a horrible thing to say," she says now. "I just wanted some sort of relief."
And she didn't think her son was there to hear it.
But he was.*
"Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up," says Martin, now age 39 and living in Harlow, England.
He thinks he began to wake up when he was 14 or 15 years old. "I was aware of everything, just like any normal person," Martin says.
But although he could see and understand everything, he couldn't move his body.
"Everyone was so used to me not being there that they didn't notice when I began to be present again," he says. "The stark reality hit me that I was going to spend the rest of my life like that — totally alone."
Mr. Pistorius' story ends well, but I cannot begin to imagine what he went through.

I can think of only one thing worse than hearing "I hope you die," and that is hearing "We are withdrawing your hydration and nutrition."

Mr. Pistorius is not the first person to be misdiagnosed as a hopeless case. But the fact that it took twelve years to obtain a correct diagnosis has disturbing implications — how many families have the strength to wait that long? How many doctors would be supportive for that long? How many would instead urge the family to "let go" and end their loved one's life prematurely?

It's been said a million times, but it bears repeating: have the end-of-life conversation with your loved ones. Let them know what care you want, and put it in writing.

* He says he coped with his mother's statement "I hope you die" by contemplating how she must have felt: "As time passed, I gradually learned to understand my mother's desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much." Now that he is able to communicate, he and his mother appear to have a good relationship.

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