Map of life expectancy at birth from Global Education Project.

Tuesday, November 06, 2007

This time it's personal

Nobody close to my family reads this blog -- hell, my mother doesn't know your Intertubes from the Pony Express -- so I feel okay about posting this here. It's private, but it's nothing to be ashamed of anyway.

My father has advanced frontotemporal dementia. It happens to be of the variety called primary progressive aphasia, not that it matters. It isn't the same as Alzheimer's disease but it ends up in the same place, for all practical purposes. He is in a nursing home. He has long been incontinent of urine and feces, has been unable to carry on a meaningful conversation for a long time, and is now unable to speak, does not appear to recognize my mother, barely responds to stimuli, is essentially unable to walk, and recently he became unable to feed himself, so they have to spoon feed him. There is some concern that he has difficulty swallowing.

Unfortunately, there basically isn't anything else wrong with him. I say unfortunately because that means he could live forever, without a functional frontal cortex, if they just put in a feeding tube when he finally becomes unable to eat. By that time, he will also undoubtedly be permanently bedridden and unaware of his surroundings. Remind you of any prominent public issue of the past couple of years?

I had a conversation with my mother, who has his health care proxy and is legally entitled to make decisions about his care, about what the goals of care should be and what ought to be done in certain contingencies. She agrees with me that the goals of his care should be comfort and dignity. She does not want any procedures that would conflict with those goals solely for the purpose of extending his biological functioning, what "Christians" call his "life."

However, my mother does not believe it is up to her after all. Among the practical considerations is what to do if he acquires an infection, such as pneumonia or a urinary tract infection, and it can't be managed at the nursing home with oral or intramuscular antibiotics. The alternative would be to send him to a hospital for IV antibiotics. In the hospital, they aren't interested in spoon feeding him so they would put in a feeding tube, also a urinary catheter, no doubt. Once it goes in, it's a major deal to take it out. Jamming a tube up his nose and down his throat is not consistent with his comfort and his dignity. Since he is unable to consent to it, and undoubtedly would not want it, it is a violation of his rights.

But, the staff at the nursing home told my mother that he recently became agitated and started flailing his arms. They found this disturbing and had difficulty calming him down. The next time it happens, they said, they will call 911 and have him transported to a hospital. They did not ask my mother, they told her. The reason, although they did not say so, is that the ambulance crew will strap him to a board and at the hospital, they will have no qualms about tying his limbs to the bed. That's before they jam the tube down his throat. She doesn't think she can refuse this. I told her yes she can too, but she doesn't believe me. She has a meeting scheduled with the nursing home staff tomorrow, so we'll see what comes of it.

Oh, did I mention that the home has been purchased by a large, for-profit chain? Recently she got a Medicare statement showing the services they had billed. They included five sessions with a psych nurse from something-or-other behavioral health associates. A psych nurse? He can't talk, and he isn't taking any psych meds. They also billed for a podiatrist to drain a hematoma on his foot, even though he has never had a hematoma on his foot or anywhere else.

Now, let's get back to Bill Frist and the rest of the Republicans in congress, George W. Bush, Jeb Bush, the Catholic Bishops, the evangelical preacherscon artists and the rest of the raging mob who tried to turn Michael Schiavo into a criminal for doing what was right for his wife, in the process forcing the taxpayers of Florida to squander more than $100,000 a year to indulge their sanctimonious hypocrisy and their hatred of human life. They do not have "moral values." They only way they care about the weak and vulnerable among us is as a resource to exploit for their own enrichment and aggrandizement.

I love my father. When his disease finally kills him, it will do it by stopping him from eating, just as Terry Schiavo's disease killed her, and that will be right for him, as it was for her. It's too bad that we have to die, but we do. When the time comes, it comes. Anybody who truly respects human life respects that. James Dobson, George W. Bush, and the Cardinals in their silk robes and fat gold rings despise human life, they despise the dupes who enrich them, and they despise me and you. They are vile, foul, and profoundly evil.

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