Desperately needed organs from anonymous living donors are saving lives but raise ethical concerns

Please take a look at this article from the January 14, 2015 National Post. A video is embedded in this article (which unfortunately I cannot seem to copy into this posting) that is quite touching, about a woman who donates a kidney anonymously. Beyond the video, the article is also very much worth reading as the author, Tom Blackwell, raises some of the ethical issues surrounding organ donation. Click on the title below to go to the original online source and watch the video, or read on for a copy of the article alone.

Desperately needed organs from anonymous living donors are saving lives but raise ethical concerns

The snipping of blood vessels and severing of other appendages complete, Michael Robinette reaches a gloved hand into the gaping incision in Annemieke Vanneste’s back.

He pulls out a glistening, grapefruit-sized object — a kidney that for 53 years has belonged to the patient from Ottawa, but is hers no more. The organ is about to save someone else’s life.

Dr. Robinette places the kidney into a stainless steel bowl of ice “slush” to help slow metabolic activity and keep it primed for the next user. Despite lacking a home for the time being, the little waste-processing body part is already pumping out a dribble of urine.

“OK,” declares Dr. Robinette, a 30-year veteran of transplant surgery at Toronto’s University Health Network. “We have one kidney to go.”

They have the organ thanks largely to a remarkable act of altruism by Ms. Vanneste, who has not just given up a kidney, but donated it to a stranger she likely will never meet, undergoing major surgery and receiving no obvious benefit in return.

Making her story more striking still, the special-education assistant’s sister, Carolyn, donated one of her own kidneys a few months earlier to a friend in dire need.

 

Annemieke Vannest, left, laughs with sister Caroline Vannest and Dr. Michael Robinette as she prepares to head into her anonymous kidney donation operation at Toronto General Hospital. (Photo: Peter J. Thompson/National Post)

Annemieke Vannest, left, laughs with sister Caroline Vannest and Dr. Michael Robinette as she prepares to head into her anonymous kidney donation operation at Toronto General Hospital. (Photo: Peter J. Thompson/National Post)

Ms. Vanneste’s gesture is part of a developing trend in transplant medicine: anonymous donors of kidneys or liver parts who are expanding the pool of desperately needed organs but also generating controversy.

Some critics worry that living donors generally receive too little information about the potential risks, and that the long-term effects have not been properly studied, issues that arguably become more acute when there is no relationship with the recipient.

The promise is alluring, though, given that the alternative — taking organs from recently expired bodies — can never come close to meeting the huge demand.

For Ms. Vanneste, following in her sister’s footsteps was an easy decision.

“I don’t think it’s a big thing, but it’s a big thing for the recipient,” she says. “It’s absolutely incredible to know that something that is actually an extra for me is working in somebody and letting them regain their life.”

Living donation has taken place since 1954, initially restricted to close family members, later expanded to include friends. Then came “chains,” where people who were not a match to a sick relative donated to another patient, and their loved one received an organ from someone else. The number of live donors in Canada now exceeds that of dead people whose organs are used.

The transplant world used to stop short at taking an organ from living people who had no link to the eventual recipient, and some U.S. hospitals still refuse to do so. Yet dozens of volunteers a year have been approaching transplant centres across Canada about donating an organ to people they do not know. The B.C. Transplant Society, which says it started the trend in Canada a decade ago, even encourages anonymous donations on its website, though no centre is aggressively promoting the idea yet.

One man at University Health Network gave up part of his liver to a stranger, then returned later to donate a kidney. A religious-based health organization put out a call for a donor to help a gravely ill child late last year. A “flood” of close to 200 volunteers came forward.

“Many of these people are just remarkable people,” says Gary Levy, head of the UHN’s living-donor liver transplant program. “They work in communities, they work in food banks, help disadvantaged people. … This is just an extension of that.”

On the surface, at least, the practice seems to violate one of health care’s fundamental tenets — the Hippocratic pledge to “do no harm” — because it’s a procedure that, for the donor, is all hazard and no benefit.

Doctors argue, however, that the risk to donors is minimal and the benefit to those suffering end-stage kidney or liver disease enormous, helping chip away at transplant wait lists on which thousands of patients languish — and many die.

Kidneys from living donors also work better and longer than those from people who have died.

Still, surgeons such as Dr. Robinette acknowledge they owe a special duty to people like the Vanneste sisters, unique among OR patients in that they have no medical issues themselves.

“It’s one of the most stressful operations I’m involved with,” he says in a deserted corridor of the UHN’s Toronto General Hospital, moments before beginning the early-morning operation on Ms. Vanneste. “It’s totally elective, totally voluntary, and you just want to make sure everything goes right.”

The National Post was invited to document her procedure but agreed not to disclose when it took place so the recipient could not identify his or her donor, as required by provincial anonymity rules. Not long after Ms. Vanneste was wheeled out of Toronto General’s OR No. 1, the kidney’s recipient was brought in to the same room to be fitted with the donated organ.

Ms. Vanneste’s act of generosity began, in a sense, with her brother-in-law, Dr. Aubrey Goldstein. He underwent a life-saving liver transplant 16 years ago, and became intimately involved in the organ-recipient community.

When the transplanted kidney of a friend they met through that community started to fail, Ms. Vanneste’s sister Carolyn, 47 — who works in health-product regulation at Health Canada — offered to donate one of hers last year.

The recipient, a nutritionist who works with high-level professional athletes, had been on dialysis for seven years, her condition growing particularly desperate in recent months.

“You can’t even describe the gratitude — she saved my life,” says the Ottawa woman, who asked not to be named. “It has given me a future. I do not consciously think ‘How sick will I be in six months; will I be here next year?’ I have been given a body that works again.”

Annemieke Vanneste, who had also been tested as a potential donor for the woman, said she still wanted to do her part and couldn’t see why donating to a stranger would be any different.

About two dozen others have done the same at Toronto’s UHN over the past several years. Yet the hospital says it is careful to screen potential anonymous donors, not only for their physical health, but also for psychological issues that might make them inappropriate candidates.

Some, for instance, want to donate because they suffer from depression, and hope the act will somehow make them happier, says Dr. Anand Ghanekar, co-director of UHN’s kidney transplant program.

Others screened out as donors are convinced that giving an organ to a stranger will amend past misdeeds, or repair alienated families, says Dr. David Landsberg of the B.C. Transplant Society. He recalls one volunteer who believed that becoming a donor would earn him the love his parents had always denied him.

Anonymous donors who are accepted tend to have a long history of altruistic behaviour — giving blood, volunteering and otherwise helping their community, physicians say. Some feel a deep-seated need to contribute, like one man who had lost a number of family members to organ failure, says Dr. Levy.

As for the physical risks, specialists call them almost negligible. A 2010 study based on decades of data — only partially reflecting ongoing improvements in surgical technique — suggested just three living kidney donors out of 10,000 die within 90 days of the operation, and long-term mortality is no higher than among non-donors.

“That’s a very tiny risk,” says Dr. Ghanekar. “That’s much less than a lot of other things people do, like getting in a car and driving on the [freeway].”

According to Statistics Canada, the death rate in traffic accidents for the general population in 2011 was actually somewhat lower, about .6 per 10,000, though that would encompass people who rarely travel by road.

Other, recent research suggests that donating a kidney is generally safe, but not completely risk-free. A Johns Hopkins University study last year estimated that the rate of end-stage kidney disease among living donors was 30 per 10,000 — small, yet about eight times the rate among equivalent non-donors. A 2014 study by Ontario’s Institute for Clinical Evaluative Sciences indicated that women who donate a kidney have a one in 10 chance of developing high blood pressure during pregnancy, twice the risk among non-donors.

The equation is somewhat less favourable for those who donate a piece of their liver. Though the organ has a unique ability to regenerate, about one in 300 living donors dies.

“The magnitude of risk is so much greater with [donating] livers than with kidneys, it raises a concern about the ethical soundness of the procedure,” argues Elisa Gordon, a medical anthropologist at Chicago’s Northwestern University who studies the field.

Even for kidney donors, there is a general paucity of long-term data on safety, she says. And Prof. Gordon says interviews she and others have conducted with donors suggest many are not adequately informed before consenting to the procedure.

Risk, for instance, is sometimes not clearly communicated, while some donors complain they received little advice on how to protect their health following the operation, she says.

Help after the fact is generally scant for donors, echoes Cristy Wright, who gave up a kidney for her sister five years ago. When the organ failed in her sister’s body, the Ohio donor suffered an emotional fallout that left her in therapy for two years.

“There’s a lot of things on the back end that people are not prepared for,” says Ms. Wright. “Donors experience depression, they do grieve a lot of times for their lost kidney. … They experience anxiety and anger.”

And beforehand, the pressure some face, coupled with vocabulary that tends to characterize them as “heroes,” makes it difficult to back out if they have doubts, she says. (Her sister eventually got another kidney and is doing fine.)

Annemieke Vanneste says she reviewed all the evidence and concluded she had little to worry about, while taking a sanguine approach to the worst-case scenario.

“I’ve had the comment ‘But you could die.’ Yeah, and I could be crossing the street and get hit by a bus. I don’t believe you can live your life waiting to die,” she says. “If something happens on the operating table, let them harvest everything they can.”

Her gesture is certainly welcomed. Despite the pressure to get more people to agree in advance to have organs harvested if they die suddenly, dead donors are by no means the whole answer. Ontario, for instance, could access at most about 450 a year, says Dr. Levy, far exceeded by the need: 4,000 kidney and 1,400 liver transplants.

As she waited in bed on the morning of her operation, Ms. Vanneste was characteristically chipper, even after discovering that a communication breakdown meant she would not receive the minimally invasive, laparoscopic version of the operation she thought she had requested.

The conventional surgery Ms. Vanneste did undergo was actually faster — and used a “mini incision” of just a few inches long.

Dr. Robinette and Kamel Fadaak, a urology “fellow” in training, sliced into the patient above her right kidney until they reached the organ, then proceeded to sever and seal off the renal vein and artery, smaller blood vessels and the ureter — the tube that takes urine to the bladder.

Less than two hours after they started, the kidney was “mobilized,” allowing Dr. Robinette to fish it out. As the organ lay in its icy slush, the towering urologist flushed the blood vessels with a special solution, packed the kidney into what looked like a plastic ice-cream tub, then deposited the package into a cooler. Just in case, someone had scrawled on top: “Kidney: Do not discard.”

Using a long, U-shaped needle and self-dissolving sutures, Dr. Fadaak then stitched up the incision.

As Ms. Vanneste lay in recovery later, Dr. Robinette came by to report on the operation that grafted her kidney into a severely ill recipient.

“He looked like a kid in a candy store; he said, ‘It went great, the kidney has started to function already,’ ” Ms. Vanneste recalled later. “The fact that you know you’re helping someone get healthy is pretty amazing.”

 

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