Walking a tightrope between life and death

Published in The Idaho Statesman as part of a series on health care costs on Jan. 28, 2007

Robert Mathie lies on a table at St. Luke’s Meridian Medical Center, his knees up and his feet bound together. The hospital’s 4-year-old linear accelerator aims at a target drawn directly onto Mathie’s chest.

The therapists leave Mathie in the room by himself. He can’t move a muscle, or he’ll risk throwing off the beam of radiation about to penetrate his body. He can talk through an intercom, and the therapists watch him on a TV monitor.

It’s uncomfortable, and sometimes Mathie gets nervous on the table.

Radiation therapy works because cancer cells multiply much faster than normal cells. A jolt from the accelerator stunts all cellular growth and can shrink a cancerous tumor.

The slower-moving normal cells recover — most of them, anyway. Doctors try to focus the high- energy rays as tightly as possible to minimize the unintended damage.

Radiation is often used together with chemotherapy and surgery to send cancer into remission. It can get expensive, and new innovations in radiation and other cancer treatments can boost the costs to patients and insurers each year.

But that’s not all — the ever-changing possibilities and new horizons mean there’s always one more chance that science will find a way to fight even the most deadly diseases.

This is Mathie’s 10th and final treatment in Meridian — and the folks at the hospital give him a certificate when it’s done. He thanks them.

This therapy isn’t aimed at curing Mathie, though. It’s not part of any regimen to save his life. A tumor — one of many, unfortunately — had been pressing against Mathie’s sternum as it grew.

The pain grew unbearable, so the doctors agreed to try to shrink it. Mathie has metastatic renal-cell carcinoma — a kind of kidney cancer. While the cancer started in his kidney, by the time he found it, it had spread. To his chest. His shoulder.

“Before they even discovered I had the cancer, this hurt,” he says. “I’d say to my wife, ‘My chest feels a little funny.’ But it didn’t hurt enough to do anything about it.”

Mathie used to jog five miles every morning along the Greenbelt with Ginger, his German shorthaired pointer. His cholesterol was low. He ran the 13.1-mile Race to Robie Creek.

“I was in perfect health,” he says. Short and wiry, Mathie raced 10-speeds as a kid but enjoyed his beer and cigarettes for most of his adult life, his daughter Laura says. He took to Idaho’s outdoor lifestyle, though, and had changed his habits in the years before he was diagnosed with cancer.

He never had any big symptoms.

“I remember I complained to my doctor that I was losing my throwing ability in my arm,” he says.

The shoulder pain sent him back to doctors a few times. Eventually, a CT scan found a tumor, and the kidney cancer was discovered. By then, it had spread through much of his body.

Mathie is 64 years old. He’s retired from an electronics company but not yet eligible for federal retirement benefits. He had to buy his own coverage on the open market .

“I’m right in that gap between insurance and Medicare,” he says. “Even at the point when I wasn’t ill, it was tough.”

Even with decent insurance, the out-of-pocket costs add up.

“We had to take one of our retirement plans and cash it in,” he adds on another day. “I can understand why people have to sell their homes. They’re choosing between life and death. That’s what it comes down to.”

Even when he was healthy, the insurance choices were slim.

“When you’re retired and older, they expect something to go wrong,” he says. “And once you get sick, you’re stuck. No one else is going to take you.”

So Mathie turned his attention to solving his own problem. He had a disease, and he wanted to find the cure.

He searched the Internet. He read medical journals. He still fills notebooks with studies and papers. He found a drug trial being conducted in Seattle, and he persuaded his oncologist to help him try to qualify.

“People have found the clinical study that saved their life,” he says.

Doctors in Seattle said the drug could hold the disease at bay for 10 months, give or take five. He’s made it to 10. So far.

These are months Mathie has spent with his wife, Sharon — the woman whose name was scrawled in tattoo ink on his bicep during a long-ago trip to Tijuana with some buddies.

These are months Mathie has spent with his dog, Ginger, who is facing her own cancer, which veterinarians now say may be terminal.

And these are the months Mathie has spent with his family. Since he started the experimental drugs, both of his daughters have been married. These months have let him walk them both down the aisle.

INEVITABILITY OF DEATH IN THE FACE OF NEW MEDICINE

Mathie knows his disease could be fatal, but he keeps hoping for a breakthrough. He wants to live. He wants to fight. He’s not ready to give in to the illness.

“I don’t really want that, when I’m lying in a bed, you know?” he says. “That’s not the way I want to do things.”

That’s not a surprising or unusual stance, of course, but it’s one that creates one of the most expensive aspects of American medicine.

Studies estimate that 10 to 12 percent of all health-care dollars and more than one in every four Medicare dollars are spent in the last six months of life. One in three Medicare dollars are spent in the last two years of life.

How should doctors, insurance companies and even patients deal with the inevitability of death? How much end-of-life care can society afford to pay?

“I think it’s hard to say — all systems are struggling with it,” says Rep. Margaret Henbest, D-Boise, a nurse practitioner and one of the Legislature’s most respected health-care experts. “Maybe there are no perfect solutions.”

The Mayo Clinic in Minnesota warns that even more costs are coming as Americans age. Intensive-care units already make up 30 to 40 percent of all hospital expenditures, and statistics show that the older people get, the more likely they are to end their lives in hospital ICU wards.

Henbest remembers thinking about all this when her mother had heart surgery at age 93. But that surgery helped buy seven more years of life.

Idaho and other states are trying to help families work through questions about end-of-life care by making it easier to file durable powers of attorney, which give family members decision-making authority at times of disability, and living wills, which express a patient’s preference when facing tough end-of-life decisions.

These decisions keep getting harder for patients and their families, though, as modern medicine gets more and more innovative.

“Almost indefinitely there’s something you can do,” Henbest says.

MATHIE CAN’T GET CANCER OFF HIS MIND

Born in Rhode Island, Mathie spent most of his adult life in Burbank, Calif. He and his wife raised three children there. He had a good job at an electronics company. The company did aircraft work, making parts for the space shuttle. His wife worked at a preschool.

“We had a house on top of the hill in a cul-de-sac,” he says. “We were doing great.”

Then came the riots of the early 1990s. Shootings. Their children’s friends got into drugs. That’s when they decided to move to Idaho.

The move worked out for the family. Now their children are grown. Two daughters live near here. Their son is in Las Vegas.

For more than a year now, Mathie has been facing this new challenge. He has the ups and downs many cancer patients face.

“Today, I feel really good,” he says on the day of the last radiation treatment in Meridian. “Some days it’s just amazing.”

And even on the best days he’s constantly reminded of the battle.

“I haven’t slept good in a year, since I had this,” he says. “I just haven’t, you know, had that relaxing deep sleep.”

On nights he’s up, he stays in another bedroom so his wife can sleep.

The medications — he’s on several, sometimes too many to remember — don’t always sit well. His feet and fingertips sometimes hurt. His sense of taste changed after he started one drug.

His appetite falters.

“I don’t know what choice I have,” he says. “I don’t want to get to the point where I just give up. They haven’t come to me and said, ‘Robert, there’s nothing we can do.'”

Still, he often feels lucky; other people have it worse, he’ll point out. His wife is with him. His daughter Laura helps figure out the bills.

“I feel much more sympathy for people with my kind of an ongoing sickness,” he says. “It just takes so much out of you mentally. If I could think about something else for one more day. Do they have a pill for that?”

STUDY FINDS COSTS OF END-OF-LIFE CARE DIFFER

In the U.S. health care system, if you have enough money, you can get just about any treatment at any time. If you have good insurance, you can get most of the treatments your doctor may recommend, and you can appeal for the right to try something experimental.

If you’re on Medicaid, the state and federally funded health coverage for the poor and people with disabilities, you’re at the mercy of state bureaucrats, but even then there’s a chance.

If you don’t have insurance or expendable cash, experts say you face the worst chances of beating a tough disease. The uninsured often must put off doctor visits, or they ignore symptoms — often until it’s too late to reverse course.

Mathie found his way onto an experimental test, and the drug company is picking up most of the costs. He still has to pay for the plane trips to Seattle every few weeks.

“Right now, it’s a real individual decision, as long as you’re the individual payer,” Henbest says.

Those decisions differ around the country. Researchers at Dartmouth University in Hanover, N.H., say end-of-life costs differ by as much as 40 percent depending on where you age.

Two of the three regions with the best practices are Idaho neighbors — Salt Lake City and Portland . The third is Rochester, Minn. Dartmouth researchers said if every hospital followed the blend of high-quality and low-cost care offered in Utah’s capital city, Medicare would have spent $40 billion less than the $123 billion spent on patients in the 2000 -2003 life of the study.

Boise’s costs are relatively low. In their last six months of life, Medicare patients facing chronic illnesses spend less time in the hospital here, less time in intensive care and fewer Medicare dollars than the national average.

Still, Idaho experts look to studies like this for ways to keep costs down here.

Insurance companies have to balance the quality of life and health of their sick clients with a fiscal responsibility to the rest of the people who pay premiums into the system, says Dr. Doug Dammrose, medical director for Blue Cross of Idaho.

“If it’s personal preference but (the patient is) spending someone else’s money, that’s a problem,” Dammrose says. “We’re using your money, your premium dollars, and we’re spending them on services we think have the best value.”

But how do you place a value on time? How do you put a price on a father’s presence at his daughter’s wedding?

HOPING THE WEDDING HELPS HIM FORGET

On the day of his last radiation treatment, Mathie is getting ready for his second wedding of the year.

There are some last-minute changes. Some bridesmaid problems.

He’s still concerned about the Seattle treatment, wondering if the decision-makers there — who are primarily concerned with the effects of this new and possibly lucrative new drug — will see enough progress in his health to let him stay on the program.

He’s always thinking about his disease, but he’s looking forward to a day with enough happening that maybe he’ll forget about it for a while.

Right now, though, he has to attend to life. He has to pick up his tuxedo the next day.

“It’s really great that the Lord’s blessed me long enough to be here for this wedding,” he says. “I’m not sad. I was kind of sad before. I want to rejoice.”

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