The dialysis dilemma: urgent need vs. overtaxed system

If you follow the link to the article on the Seattle Times web site there are pictures (:

http://seattletimes.com/html/pacificnw/2020139209_pacificpkidneys20.html?prmid=head_main
Pacific NW Magazine Originally published Friday, January 18, 2013 at 12:00 PM

The dialysis dilemma: urgent need vs. overtaxed system
As needs and costs soar, so do questions about what is right.
By Carol M. Ostrom, Seattle Times health reporter

WHEN DR. BELDING Scribner awoke in the middle of a cold January night in 1960, the plight of a patient named Joe Saunders was weighing heavily on his mind.

Saunders, an otherwise healthy young man, had been diagnosed with kidney failure and sent home from the hospital to die.

Hospitals had used dialysis machines as far back as the early 1940s, but only for very short-term, reversible problems, because each use permanently destroyed an artery and a vein.

At 4 a.m., Scribner groped for a scrap of paper to scratch out his vision: two tubes, connected by a shunt, could join a patient's vein and artery for long-term dialysis to clean toxins from the blood.

Over the next months, Scribner worked with Wayne Quinton, a University of Washington mechanical engineer, to perfect the shunt.

In 1962, the nonprofit Seattle Artificial Kidney Center — the world's first outpatient kidneydialysis center and the predecessor of today's Northwest Kidney Centers — opened for business.

The "Scribner shunt" could save the lives of patients who had no other alternative.

But not all of them.

From the beginning, dialysis was engulfed in ethical dilemmas that would shove sleepy Seattle into a national spotlight, spur a new medical field called "bioethics" and spawn troubles that haunt the field today.

Money was always an issue. After the first three patients were saved, officials at University Hospital, where the center was, balked. A year of dialysis cost $20,000 per patient, they calculated, with no funding source in sight. The center had to move.

In Swedish Hospital's basement, three machines could treat up to nine patients.

But which nine?

Because it became agonizingly clear early on there would be many more patients than slots, the local medical society helped appoint an anonymous committee to choose. The rest, everyone knew, would simply be left to die.

First revealed to the world in a 1962 Life magazine article, the committee, its members shown in silhouette, faceless and ominous, was quickly dubbed "The God Committee" and the "Life or Death Committee."

A few of those it snatched from death's grip in those early years are still alive:In 1959, Nancy Spaeth was a tiny, scrappy 12-year-old who had grown up with four athletic brothers and kidneys that were, the doctors grimly informed her family that winter, inexorably failing.

Those ailing organs lasted — barely — until 1966. Her family anxiously waited as the committee deliberated.

"I wouldn't have graduated from college, I wouldn't have gotten married, I wouldn't have had two children, I wouldn't have two grandchildren," says Spaeth, now 65. "They saved my life."

Most who sought help never got that chance.

The committee members — a surgeon, a pastor, a lawyer, a banker, a state government official, a labor leader and a "housewife," plus two physician advisers — were white. All but one were male.

Most patients they picked were well-off, white and male. Patients had to be able to pay for the treatment — $30,000 for three years, about $229,000 in today's dollars. The committee also considered net worth, number of dependents, education and "future potential." Patients less than 25 or older than 45 generally weren't eligible, nor were those with other illnesses.

In one deliberation tallied in the Life article, the committee chose two of five: A businessman active in his church and an aircraft worker with six children. Resigned to death: A chemist, an accountant and a housewife.

As time went on, pressure mounted. The tally of those considered and turned away by the committee has been lost to history, but very early, one estimate calculated there were about 60 ideal candidates in Washington, even given the strict criteria.

In a 1967 UCLA Law Review article, a law professor and a psychiatrist deemed the Seattle process "polluted by prejudices and mindless clichés" — the "bourgeoisie sparing the bourgeoisie."

The committee ruled out "creative nonconformists," David Sanders and Jesse Dukeminier, Jr., wrote, adding: "The Pacific Northwest is no place for a Henry David Thoreau with bad kidneys."

Committee members realized that somehow, someone had to choose. Still, the surgeon confided to Life: "One can never face these situations without feeling a little sick inside."

The committee's distasteful triage and the plight of patients — including one who dramatically dialyzed during testimony to a congressional committee — pushed federal lawmakers in 1972 to grant early Medicare coverage to end-stage kidney patients. For just one disease, it was decided: Medical salvation shouldn't be granted only to well-off, "socially worthwhile" patients.

Soon the committee was disbanded — but not forgotten. Scribner, in an account published in "The Courage to Fail" by Renee Fox and Judith Swazey in 1974, recalled that at the outset, he and his colleagues had believed the committee was a reasonable solution.

"In retrospect, of course, we were terribly naive," Scribner wrote. "We did not realize even then the full impact that the existence of this committee would have on the world."

WHAT SCRIBNER also didn't realize then was just how profoundly the entitlement bestowed by Congress would change the landscape.

Today, roughly 600,000 U.S. patients have end-stage kidney disease. The number reflects an epidemic of diabetes, uncontrolled high blood pressure and bad diets.

Elderly patients with diabetes, many with other serious health issues, are the fastest-growing group, and the entitlement has fed the growth of for-profit centers nationwide.

In 2010, for each patient with end-stage renal disease on hemodialysis — the most common dialysis method — Medicare paid $87,561 on average, counting medications and other medical expenses. For those who dialyze at home, it was $66,751 per year, and for those who received a transplant, $32,914.

Medicare pays centers about $230 per hemodialysis treatment, and centers bill private insurance much more.

At $33 billion, Medicare's spending on such patients makes up more than 6 percent of its budget. Medicare's dialysis entitlement is a "cautionary tale" for future coverage of catastrophic health costs, wrote UW assistant law professor Sally Thieme Sanford in a 2010 analysis of dialysis' history.

When Congress granted long-term dialysis Medicare support, many other expensive treatments now available hadn't been invented, she noted. Medical care for undocumented immigrants wasn't a big issue, and few had considered that a deadly flu could require triaging patients for a ventilator.

By inventing the shunt, Sanford wrote, "what Dr. Scribner wrought is a wealth of legal, ethical and policy issues."

In real life, these issues play out daily.

Unlike the rest of the country, where for-profit companies provide about 75 percent of the dialysis, the nonprofit Northwest Kidney Centers, in its 14 locations and 11 hospitals, dialyzes most Puget Sound-area patients.

Seattle Kidney Center, NKC's big, busy place at 15th Avenue and East Cherry Street on Capitol Hill, is a full-service center. It has rooms for patient training and nutrition counseling, a special pharmacy and a long, open room where big recliners are filled with patients being dialyzed.

Many of the patients here are African-American, who are disproportionately vulnerable to the disease. Most snooze or watch TV. This relatively fast dialysis, which moves an unnaturally large amount of fluid through their bodies in a short time, can be hard on patients, particularly older ones.

A few miles north, in the Laurelhurst neighborhood, patients at the other end of life are getting dialyzed in a newly expanded dialysis unit at Seattle Children's.

In the old days, the God Committee didn't even consider children. These days, Children's is packed with kids getting dialyzed.

A toddler wails, a couple of perky young boys laugh during video games, and alarms periodically beep and buzz. Nurses scoot back and forth, soothing and cajoling their young charges hooked to machines.

For adults who often have multiple health issues and are not good candidates for transplant, dialysis is often the last option. But for most kids, who are otherwise healthy, it's a bridge to transplant.

Brooke Nicols, 18, a newbie from Olympia, isn't fond of the catheter plugged into her chest above her armpit.

Like most of us, she took her kidneys for granted. That changed abruptly on her 10th birthday, when a scan revealed she had only one.

Last summer, it began failing. Now, she's getting listed for a transplant. She's quiet, still finding her balance from the sudden tilt in her world, but her mom says she's coping well.

At the other end of the room, Joey Miller, 12, was born with bad kidneys. At 18 months, he began dialysis; at 5, he got a transplant. It failed after five years, attacked by his body's natural defense system.

"We always tell families, 'This is your child's first kidney transplant,' " says Dr. Joseph Flynn, the dialysis center's medical director. "The body's immune system is smarter than we are."

Joey and his mom, Kristen Miller, drive from Puyallup three times a week for his three-hour session. "It's a long time," says Joey, a bright, talkative eighth-grader. During school, a tutor helps him keep up at the center. Between trips, his mother manages a part-time job and caring for her three other kids.

Flynn says kidney failure in children presents unique ethical issues. For one:It's sometimes diagnosed in utero.

Some parents-to-be decide they'll be able to cope. Others, Flynn says, conclude: "I can't do it."

MOST PEOPLE never think about kidneys. But these bean-shaped blobs, big as a fist and a color you'd never paint your walls, can cause a lot of trouble when they run amok.

Dr. Michael R. Kelly, chairman of the kidney center's Ethics Committee, a clinical professor at the UW based at Harborview Medical Center — and long regarded as one of the sages of nephrology — tells his students that after the brain, the kidney is the smartest organ in the body.

"The heart is just a dumb pump," he says.

Kidneys, on the other hand, balance fluid and electrolytes, filter out toxins, regulate blood pressure and help create red blood cells.

Physiologist Homer Smith, in "Fish to Philosopher," calls kidneys the foundation of our "physiological freedom" by creating the internal milieu that allowed humans to leave our ancient saltwater homes.

"Superficially, it might be said that the function of the kidneys is to make urine," Smith says, but in fact, they shaped human existence.

That's not news to Bill Peckham.

Peckham was 22, fresh out of college and looking for his first job in the mid-1980s when kidney disease hit.

In denial, he left for an around-the-world adventure, cut short by a medical evacuation from Thailand.

A 1988 transplant from his brother failed, and by 1990 he began dialysis at NKC.

Peckham, a sign maker for trade shows, hasn't given up his wanderlust. He's dialyzed in 22 countries, and in July, plans to raft the Grand Canyon with a portable machine.

More than a decade ago, he began overnight home dialysis. The slow process keeps him healthier, says Peckham, who blogs at "The Sharp End of the Needle."

Home dialysis is also, ultimately, less expensive. But training patients takes time and upfront costs, mostly not reimbursed, says Joyce F. Jackson, CEO of the kidney center, where 16 percent of patients dialyze at home, a higher rate than at most centers.

Home dialysis isn't for everyone. Patients who live alone, or are too frail or sick, often find it too intimidating.

In the old days, home dialysis was the norm. But higher Medicare payments for in-center dialysis spun incentives, particularly for the for-profit centers.

With kidneys, it seems, the trouble has always been about the numbers.

A HALF CENTURY ago, nobody predicted so many people would have end-stage kidney disease. Or that treating it, per patient, would be one of government's most expensive entitlements.

Now, nephrologist Kelly says, the problem isn't picking which patients should get dialysis; it's that doctors, patients and families seem unable to pick which patients shouldn't.

A few months ago, at a NKC celebration, he called for reconstituting "The Committee" — albeit with a 180-degree change in its mission. It was a moment to pause.

Kelly fervently believes that health care is a right. But he also thinks dialysis has gone too far.

In the old days, Kelly says, choosing whom to save was hard. "Now, what we do is much harder."

In the beginning, the committee didn't take patients with advanced heart disease, diabetes or other serious health issues. They said no to patients they thought lacked motivation or ability to comply with treatment.

Today, they all get dialysis.

He ticks off real-life cases:
A 40-ish heroin user who injects heroin into her dialysis catheter, causing serious infections, and skips dialysis sessions. She says: "I want to dialyze. I want to take heroin."

A 60-year-old patient who has been receiving dialysis for nearly two years in a locked hospital psych unit, despite violent outbursts in which he hits his nurses. No other facility will take him.

A dying patient, unable to make decisions for herself, whose daughter, armed with a power-of-attorney, insists.

He thinks about how exhausting dialysis is on elderly patients and says he believes doctors must weigh in when dialysis is futile. But he knows, from long experience, how difficult that is.

"Entitlement means 'I deserve it, and you're paying for it,' " he says. "You can keep treatment going and there will be no phone calls. But if you stop, there's a lot of phone calls."

Kelly sees himself as a steward of medical resources. "We have to function as responsible people in society."

Today, with the door to dialysis swung wide open, Kelly argues, doctors, families and patients need a committee because someone, somehow, has to say no.

He battles with himself out loud. "I think, 'Am I some kinda Hitlerian guy, that I want to stop all these treatments?' "

Then he recalls "Scrib," Scribner himself, fearlessly insisting that uncomfortable, tough issues be aired. "I frequently say, when I'm dealing with a case, 'What would Scrib do?' " Kelly says.

"I'm trying to do the right thing — what I think is the right thing."

Carol M. Ostrom is The Seattle Times health reporter. She can be reached at 206-464-2249 or costrom@seattletimes.com. On Twitter@costrom. Alan Berner is a Times staff photographer.