End-of-life costs force painful decisions about death

If Medicaid is really as unsustainable as Republican governors insist, then the Terri Schiavo Life & Hope Network is not helping matters.

The Narberth, Pa.-based foundation is named after the comatose woman whose prolonged life or death, depending on your point of view, became a national flashpoint. The fight between her husband, who said she would not have wanted to live in a vegetative state, and her parents and brother, who wanted to keep her alive with all extraordinary measures, caused countless Americans to prepare their own living wills, spelling out what kind of care they did and did not want for themselves.

Schiavo died eight years ago, but her brother, Bobby Schindler, still maintains she should have been kept breathing at all costs. His foundation, he says, is dedicated to supporting others in similar circumstances.

Never mind that every Medicaid bed holding someone who's not going to get better displaces someone else with a real chance of improvement.

We already know that a disproportionate share of health-care dollars is spent in the last few weeks of life. A recent Wall Street Journal analysis showed that, in 2009, 6.6 percent of those who received hospital care died. Yet those 1.6 million people accounted for 22.3 percent of total hospital expenses.

Meanwhile, the Obama administration's efforts to expand Medicaid in order to cover more uninsured people are not going over well with some Republican governors. They're against government involvement in health care on principle; they don't trust the president's promise to cover the full cost of the first three years and 90 percent of the costs after that; and they say Medicaid is already overburdened without adding more names to the rolls.

The issues remain contentious not just because of the cost, but because of the moral and ethical considerations of life and death. And if ever there were an illustration of them, it was what happened to my elderly cousin.

My nuclear family had kept her in the loop and enjoyed her company -- she was well-informed on the news, loved sports and remembered everything -- so it was sad to see her decline.

She had no estate to speak of, just a small insurance policy and a contract guaranteeing interment next to her mother. A living will seemed to be in order, since nobody wanted to be making decisions for her. So a few of us sat down with her to discuss the options.

The big question was: If you should have a catastrophic event such as heart attack or stroke, do you want to be kept alive by any means necessary even if there is no hope of recovery?

Her reply: "Only if it's absolutely necessary."

"Necessary for what?" we asked. "For getting better?"

"What if you won't get better?"

"That's different," she said.

"So if you're in a vegetative state and aren't going to get better, you don't want to be kept alive by tubes and machinery?"

"Not unless it's absolutely necessary."

We went around like this a few more times. Clearly, this woman did not want to die, period, and who could blame her? We dropped the living-will idea and kept visiting her in her apartment, the hospital and then the nursing home.

I looked at my husband and said, "If I ever get to that state, shoot me."

"Too messy," he said.

"OK, overdose me. Or get me the drugs and I'll overdose myself."

We weren't entirely joking, having thought more than our fair share about the possibilities of my demise. Living with cancer will do that to you. Most of the time, when I'm in remission and feeling good, it's off the radar. But every time it comes back (three so far), I have to consider that it could be the beginning of the end. I don't want to die, but I don't want to suffer either. And while I'm all for prolonging my life, I'd rather my death be a quick one.

Or, as my older brother put it, "The best thing is to go to sleep and wake up dead."

"I'm afraid to go to sleep," she said. Of course she was. It might mean waking up dead.

Which, finally, is what happened. She died overnight; her fear and suffering were over. Extraordinary measures never came into play. But they might have. What would we have done? Could we, in good conscience, have withheld heroic measures, knowing she wanted them, but also that their exorbitant cost would serve no meaningful purpose?

Many of us may have to answer this question at some point. Health-care rationing sounds evil, but the fact is, we're already doing it, based on who's covered and who isn't. Our challenge is finding a way to provide the best care at the lowest cost to the most people by the most efficient means.