Amid organ shortage, altruistic kidney donations increase but bring forth ethica

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http://www.oregonlive.com/environment/index.ssf/2013/07/amid_organ_shortage_altruistic.html

Amid organ shortage, altruistic kidney donations increase but bring forth ethical debate
By Soumya Karlamangla

Last spring, just months before his luck turned, Gene Baker accepted that his time was running out. The Portland clinical psychologist's kidneys were failing.

Though he was on a transplant list, the 61-year old realized he might soon become one of the thousands who die each year waiting for a kidney. "I have a very limited number of springtimes left," he remembers telling his wife, Regina Brody.

Despite the odds, Baker got a new kidney last December. Not from a loved one or from someone who had died, but from a stranger who decided to donate one of hers. An increasing number of Americans, like Baker's donor, are giving their spare kidney to someone they don't know. With organ waiting lists getting longer and donations dropping since 2009, these altruistic donations are rare signs of optimism in the face of a growing shortage.

It's difficult to pinpoint a single reason for the uptick, but more than 50 percent of altruistic donations ever performed -- 1,374 as of April -- came after 2009, when numbers of traditional living donors started falling.

That increase, however, has put medical professionals in a tricky position. Doctors must decide whether to perform a surgery that has no benefit for the donor, pushing the limits of a physician's oath to "do no harm." Donors get no compensation, though their medical costs are covered. They typically don't even find out whom their organs save. "It's a different kind of moral framework that physicians have been running up against," said Courtney Campbell, a philosophy professor at Oregon State University.

A related ethical debate about organ distribution erupted earlier this summer when a judge allowed a child to receive adult lungs, generally forbidden by the transplant system.

The court's decision to bend the rules together with the complicated ethics of altruistic donations -- which challenge a system not created, or equipped, to handle them -- signal the country's transplant system may be buckling, with no solution of consensus in sight. People toss around ideas for fundamental changes, like a free market for organs, incentives for donations, such as tax breaks, or changing the default registration to presumed consent. But nothing has stuck.
So for now, altruistic donors might be the only stopgap until science progresses enough to grow organs in labs -- at least a generation away.

Severe shortage
Last year, polycystic kidney disease had reduced Baker's kidney function to less than 15 percent. He had stopped traveling; even leaving the house was exhausting. His mind was foggy, and he could barely stomach a full meal. Baker had been waiting a year and half for an urgent call to rush to the hospital. But no call came.

In Oregon, the average wait time for a kidney is two years. About 700 Oregonians are on the list, and more than 96,000 across the country. Each year, the lists get longer.
Though deceased donations haven't dropped, the numbers of living donors have. Since altruistic donations constitute less than 3 percent of total organ donations, they can't make up for the drop in total living donors. One theory is the drag of the recession has made people reluctant to donate because they would have to take time off work. "Nobody quite understands why living donation is going down," said Dr. William Bennett, medical director of kidney transplantation at Legacy Transplant Services in Portland.

This year, more than 4,500 people in the United States will likely die waiting for a kidney.

Ethical balance
Traditionally, organs are harvested in the minutes after death. However, kidneys -- because we can live with just one -- can be donated while people are still alive. But in the 60 years since the first living kidney transplant between identical twins, doctors have had to navigate the ethical minefield living donations create. "A mother may want to give her heart to her child, but medicine would not let that happen," said Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health & Science University.

Most doctors allow living kidney donations for loved ones, valuing the emotional benefit over what has become the minimal risk of the surgery. The equation becomes murkier when donating to strangers.

"It's not like giving blood," Tolle said. "A kidney is deep in your body."

Most of the surgeries are laparoscopic, removing a kidney through a couple of small incisions. It's less painful, patients can leave the hospital within days and fully recover within months, with only a small scar as a reminder. Still, there's a 3 in 10,000 chance of dying. And kidney function deteriorates with age, so it's safer to have two.

At least 320 people who donated a kidney have eventually gone into kidney failure, said Dr. Lainie Freidman Ross, associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago.

And since there is little long-term data about the effects of donating a kidney, potential donors can't really know what their future risks would be when considering the procedure, she said.
 
The transplant
Lori Anderson, who lives in Corvallis, is well aware of the desperate need for organs. Her brother needed a kidney, but she wasn't a match. So Anderson, 52, decided to donate a kidney to the next person on the waiting list -- while her brother eventually was matched to a non-relative.
"You take an organ out of somebody and you put it in somebody else and it starts working immediately," Anderson said.

Some donors, like Anderson, get the idea to donate from their family or friends who need organs but who they can't help. Others are inspired by billboards, religious convictions, documentaries or even TV shows.

"There might be someone out there that's just praying day and night, and you're the match for them," said Elizabeth Willard, a Portland police officer who donated a kidney this year after an episode of "Grey's Anatomy" about transplants.

Donor candidates undergo extensive physical and psychological screening. They learn all the risks. They are given plenty of time and opportunity to back out but rarely do.

Last fall, Baker finally got the call from the transplant team. But he didn't have to rush to the hospital. Doctors wanted to know if he would accept a kidney from an altruistic donor and if he would be free to have the surgery in a month. Baker, slightly stunned, agreed immediately.

"It's an extraordinarily rare thing," he said, "so it's not something that they even tell you about or prepare you for."

Though uncommon, receiving a kidney from a living donor is the best option for someone waiting for a kidney.

Kidneys from living donors last an average of 18 years, while those from deceased donors last 13. Patients who get any kidney transplant, however, live longer on average than dialysis patients.

In December, Anderson's kidney was transplanted to Baker without a hitch.

"I was sitting up in bed talking and eating food within a few hours," Baker said.

Although most donors never meet their recipients, both Baker and Anderson waived anonymity and Baker invited her to Passover Seder dinner with his family in March.

Each person lit a candle and shared something they were grateful for that year.

It was spring again. Brody and Baker knew it wouldn't be their last together. The couple had plans to go hiking and to visit Mount Hood. She thanked Anderson for her kidney, for making her husband's prediction not come true.

"I'd do it again in a heartbeat," Anderson said.