Finding quality at the end of life

Buffalo Bills quarterback Trent Edwards is encouraging NFL football fans to donate between $10 and $50 to the ALS Association for each touchdown drive he directs this fall. "Trent's Touchdowns for ALS" is a tribute to his high-school football coach, Charlie Wedemeyer.

Outlasting the odds that see 80 percent of patients die within five years, Wedemeyer has survived 33 years since his diagnosis with Amyotrophic Lateral Sclerosis-­commonly known as Lou Gehrig's disease, and named for the New York Yankee star who retired from baseball in 1939 after his ALS diagnosis.

Marked initially by muscle weakness or stiffness, ALS is followed by progressive paralysis of limbs, speech, and other functions. Which is why Wedemeyer is such an inspiration to those who know him, including motivational speaker Zig Ziglar, who is urging the California resident to update his 1993 autobiography.

Kidney failure that forced Wedemeyer into dialysis has curtailed his once-frequent travels the past 18 months. Still, in July he attended a high-school all-star football game bearing his name and an ALS charity walk in mid-September.

Most afternoons find the Hawaiian native on the sidelines at Los Gatos High School, where he tutors freshmen and sophomores. Though hooked up to a ventilator and coaching from a wheelchair, Wedemeyer whispers instructions that are relayed to players by Lucy, his wife of 42 years (the same method they use during speaking engagements).

Though not a household name outside of football, Wedemeyer has gathered a flock of sports, community, and other awards, including the President's Trophy for Disabled American of the Year in 1992. His story has been featured in films broadcast on CBS and PBS.

"It has been remarkable," Lucy said of her husband's continuing impact on the public. "We still hear from the actor who portrayed him, his former players and people all over the world. It's encouraging to know you can still be an inspiration."

Despite their cheerful outlook, one issue has dominated the Wedemeyers' thoughts lately: the possibility of a national healthcare plan.

Just as grassroots objections changed key Republican Sen. Charles Grassley's mind about reform efforts, President Barack Obama faces stiff challenges persuading important sections of middle America.

Despite guarantees from Washington such as no lifetime caps on coverage or dropped coverage for the seriously ill-the Wedemeyers are skeptical. They worry about future care for a 63-year-old man who may not fit Uncle Sam's definition of "quality life."

"This seems to be coming down the pike," Lucy said. "Sadly, it's only through the news or someone making a public outcry that things happen."

What concerns the Wedemeyers most is the prospect of a public insurance option. Their son-in-law thinks that could eventually eliminate private insurance and put bureaucrats in charge of deciding who receives treatment. Keith Andry, a board member of the Charlie Wedemeyer Family Foundation, said that if the government requires every employer to offer insurance and also offers a public plan, employers will move in that direction to save money. That would force Wedemeyer into a program Andry believes will control costs via rationing.

Adding more than 40 million people to the system is also a pre­scription for rationing, said Andry, a real estate broker.

"If Charlie were diagnosed with (ALS) and government insurance was in place 30 years ago, I truly believe he would not be alive today," Andry said. "I don't believe they would have sustained the service if he was in a government plan because they just couldn't afford to keep him going."

Granted, it has been an expensive undertaking. Andry said insurance has paid out millions over the past three decades on Wedemeyer's behalf, although that is the way insurance works: The healthy pay for the unhealthy through their premiums.

Whether reducing access to treatment or other measures, he doubts Uncle Sam would guarantee the care his father-in-law has received thus far. Andry also wonders what would happen if a fiscally challenged government plan had to choose between a 16-year-old with cancer and an ALS patient in his 60s.

"Charlie has done more traveling and given more motivation to people's lives in the last 33 years than his first 30 healthy years," Andry said. "Who judges what quality of life is?

"In his case, I don't see the government looking to that as a quality-of-life issue. They (wouldn't) look at the intangibles-the relationships and the inspiration he has given to so many people around the world. I think that's scary."

Charlie Wedemeyer isn't the most famous person with ALS. That title belongs to British scientist Stephen Hawking, who has survived for 45 years, although seriously ill after being hospitalized last April.

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.

"So you don't want to go too slow and you don't want to go too fast; you want to get it right. I think trying to get a bill passed this summer was too fast. I'm hoping, with some careful deliberation the next two months, we can get a good bill passed and signed."

He said Christians should try to be consistent in standing up for certain values, such as for the right to life, and using discernment in making judgments based on hearsay or incomplete information.

"Have principles in mind, keep them clearly in view, and help people understand the moral reasons behind these principles," Gushee said. "Then be a constructive and reasonable voice wherever we can. I think that's the posture we should have."

Despite living with a disease that has no cure, Perdue feels that Christians also should stand against taking end-of-life decisions into their own-or the state's-hands: "Life's a struggle but it's still rewarding," he said. "You have to stay involved. God will do what He wants to do with me, and then kick me to heaven." -Ken Walker is a writer living in Huntington, W.V.