In 1986 my mother suffered a massive stroke which left her in a vegetative state. But this was at the time when turning off artificial life supports even on people as clearly beyond awareness as my mother was was still not something hospitals were altogether comfortable with. We had no opportunity to discuss with doctors as a family what my mother's condition was, what she might actually be feeling, what options we had. My father, a physician who himself had had one major stroke and a number of minor ones applied to become, at the hospital's request, her guardian. It was simply for legal/bureaucratc reasons. In spite of his somewhat diminished capacity, the court still deemed him competent enough to be made her guardian. The only option we had was to challenge him, something which would have been worse for all of us. We never met to discuss the issue with the treatment team, a social worker, or a chaplain. My father lived the next four years in a kind of delusional fog in which he spent his days reading to her, talking to her, putting perfume on her, telling her how beautiful she looked as she lay in a hospital bed, and briefly in a nursing home bed, attached to a breathing machine and to feeding tubes and medication drips and a catheter. He could not and would not tolerate any suggestion that she wasn't really benefitting from further treatment. Through these years, she had quite a number of opportunistic infections which my father insisted on treating aggressively. She developed sores whch had to be treated, and the ventilator had to be inserted in her throat, something which also led to infecton. If she felt anything at all, she sure didn't feel comfortable. And yes, this was expensive for the insurance companies, for the hospital, for my father.
As his own condition worsened, my father's daily trip to the hospital became increasingly difficult for him: he could barely walk the distance from his car to the hospital entrance; his driving became erratic; his house started to sag from neglect. I made trips east from St. Louis to go through paper bags of bills, to fix the furnace, to get the house cleaned, get him cleaned. Finally, he couldn't go anymore. We got home health care for him. But he still was in charge of my mother's care. Then one day my mother's doctor called me at work. "She's died," the doctor said. "Thank God" were the first words out of my mouth. "I wish I'd known you felt that way," said the doctor. "I never made it a secret," I said.
As I've said, we never had any meetings with a treatment team or anythng where we could all discuss these incredibly difficult issues. The chaplain was very nice, but not someone charged wth such family counseling, and the social worker's job was discharging patients as quickly as she could. As far as I know, there was no such thing as end of life counseling in those days. We sure could have used it.
Today it is definitely more common and people benefit enormously. Having experienced my mother's tragedy without such counseling, I find myself furious with people who would deliberately confuse this with "death panels". Such counseling is vitally important. It can help families BEFORE what happened to my mother happens; it can help families when unexpectedly and without previous discussion, the unthinkable happens. It can ease the last days of the dying and the hard road of those to be left behind. The fake brouhaha stirred up by Palin, et. al. has apparently led the Senate to strip payment for it from the health care reform proposals.
Here is a link to a very good Economix post in the NY Times on end-of-life counseling and the health care bill as intended to increase, not eliminate, persona choice.