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Finding quality at the end of life

"Finding quality at the end of life" Continued...

Issue: "Profiles in effective compassion," Sept. 26, 2009

Yet, with an estimated 30,000 Americans living with the disease and approximately 5,600 new cases diagnosed each year, the fate of ALS patients touches thousands of average citizens the public rarely hears about.

They include people like Terry Perdue of Huntington, W.Va., a former city council member who remains active 14 years after his diagnosis.

Though his arms are pencil thin, shoulders bony and fingers are twisting up, Perdue is animated, glad to be alive and looking forward to teaching Sunday school as long as he remains mobile.

Still interested in politics, Perdue has followed the news about healthcare and wonders how Congress expects to add millions of people to the insurance system without affecting the delivery of care.

"The people who will suffer will be the elderly," said the youthful-looking Perdue, who turns 70 on Oct. 6. "I believe in my heart that's the way it's going to be. You can't pay for it the way they're proposing. My grandchildren are going to pay through the nose for this."

The prospect of rationed care isn't his only misgiving. After listening to a radio broadcast of a recent town hall meeting, Perdue felt the discussion danced around the specific meaning of end-of-life issues.

Though the intent may be to help people make good decisions about their twilight years, he asked who will decide if open heart surgery or radiation is advisable for an elderly person.

"I think most people in the country agree we need to redo our medical system," Perdue said. "What consumers seem to be scared of is the way they're going about it. Why do we need to make all these radical changes in two months? The issue to me is how are we going to administer that? How are we going to pay for that?"

Unlike Wedemeyer, the costs of his treatment haven't been astronomical. After initial screenings and other tests ran about $10,000, he said the rest has been regular check-ups and prescriptions.

Ironically, in 2007 Medicare approved Perdue for a year of hospice care at $4,000 a month, but after that year dropped him from the program.

Perdue takes six medications, but only one is related to ALS. Riluzole is the first drug to alter its course by fighting a salty acid in the blood that kills motor neurons. It is also the most expensive of his prescriptions, with his monthly share costing $300.

Despite faltering health of late, he calls life "rewarding" and said the principle of letting God decide when life ends must prevail in any healthcare proposal.

"It's tough living this way, but God's got a purpose for it," Perdue said. "There was a guy who started coming to our church and I got him to come to my Sunday school class. About a year ago he accepted Christ; he's dead now. Maybe that was God's whole purpose for me (living this long)-that guy coming to Christ."

Ironically, doctors are much less comfortable making those decisions than public policy makers, said one ethicist.

Ben Mitchell, a professor of moral philosophy at Tennessee's Union University, said even doctors who favor assisted suicide want the patient and family deciding, not physicians.

"I think we should worry about it," Mitchell said of one proposal to fund end-of-life counseling. "At the other end of life, we've undergone a social revolution to preserve the relationship between the doctor and his patient with abortion. Now, we want the government to enter that relationship . . . I find that very schizophrenic."

Aside from the political aspects of healthcare, Mitchell and another ethicist say the situation raises other concerns for the church. Mitchell sees Christians as having dual obligations. One is as citizens who should inform their elected officials of their views, but equally important is their obligation to serve the less fortunate. "We need to be much more engaged in palliative care, hospice work, and be thinking again . . . about the role of charity hospitals and charity hospices in caring for those who may lose their healthcare insurance toward the end of life," Mitchell said.

Christians should embrace consistency, standing up for the right to life in the womb and in the twilight years, the professor said. He also calls for resisting the informal coercion that can arise if public officials or others decide that someone diagnosed with a disease like ALS ought to have limits placed on care.

People without insurance and no access to doctors or medications already face rationing, said David Gushee, a professor of ethics at Mercer University. He called the congressional proposals an attempt to reverse that. "Fourteen thousand people lose their health insurance every day because of job loss, job changes, preexisting conditions, and all of that," Gushee said. "This is a problem that has needed to be addressed for generations.

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