Desperate patients campaigning publicly for living donor organs

Interesting debate in Canada this week. The short version is this: reportedly wealthy, well-liked owner of Ottawa Senators needs urgently a liver transplant. He (well, his friends, but that's beside the point) uses his means (access to mass media) to campaign publicly for a living donor organ donation. Within a few days there's hundreds potential donors, reportedly money isn't changing hands, but who knows. The hospital where he is being prepared for surgery says that he's likely to receive his - hopefully - life preserving transplant some time this week. The transplant success rate is anywhere between 85%-90%.

Naturally the media and the usual-suspect ethicists got all fired up about rich folks 'jumping the queue' of people waiting for transplant organs, and the ethics of it all.

I thought it might be good to sort thru some of the issues here.

The Canadian Liver Foundation published an instructive background report in 2013 that I do recommend to your attention. Reportedly, in Canada, about 5,000 patients die annually while waiting for liver transplants, tendency: numbers rising. About 400 patients receive successful transplants, roughly every third patient waiting for a liver transplant dies because there are insufficient numbers of donors. Importantly, living donor donations (relatives, friends, otherwise altruistic others) don't actually affect people on the mentioned waiting lists directly, because these waiting lists are for people waiting for donations from deceased donors (ie folks who signed up to be organ donors in case of their demise) . If you manage to coax your workmate or a suitable relative into donating bits and pieces of their liver you will likely be able to live, unlike many of those who fail to do so and who keep on languishing on our waiting lists. Living donors regenerate their livers within a few months, the surgery is reportedly a relatively unproblematic, it's a low-risk procedure requiring of you to take a few weeks off work. So, it is a sacrifice, but not a major sacrifice, considering that human lives are at stake.

When you look at the Ottawa club owner's situation, it's not clear that he is guilty of any objectionable behaviour. Those folks who responded to his plea would not have donated to random others, they wanted to help him. Reportedly he is 'well liked'. Nobody stuck on a waiting list was any worse off as a result of his high-profile attempt at getting his hands on a living donor liver.

What is problematic isn't so much this individual's response, what is objectionable is a system that gives rise to such responses. While clinical need is a reasonable prioritisation and triage criterion, 'whoever shouts loudest' or is 'most likeable' are not ethically defensible selection criteria. And yet, if 'whoever shouts loudest' does not affect the existing waiting list negatively, it seems to me that there is no good reason for people not to try to 'shout loudest' given that their survival depends on it.

What ought to be criticised is the lack of available transplant organs that gives rise to such activities. Here much could be done to improve our current status quo, an immediately available strategy could be to switch our donation systems to an opt-out or presumed consent system. This is known to increase available transplant organs significantly. We should investigate the possibility of incentivising potential organ donors financially. There are various questions that need to be answered prior to implementing payments for organs, among them concerns about the exploitation of vulnerable, impoverished people as well as what the actual impact of such incentives would be on the availability of transplant organs.

Kidney Transplant TV Show Is a Hoax

Nice story came via Associated Press last night. It's to do with a Dutch TV show (designed by the infamous Endemol production company (creator of Big Brother among other programmes). The idea was that several contestants in need of a donor organ would compete (on air) for the kidney of a dying woman. The winner would receive the kidney and thereby be spared infinite dialysis (and likely premature death). There has been a huge outcry over this internationally. - It turns out, the story (and show) was a hoax. Here's the AP item:

Saturday June 2, 2007 12:46 AM


By TOBY STERLING
Associated Press Writer

AMSTERDAM, Netherlands (AP) - A television show in which a woman would
donate a kidney to a contestants was revealed as a hoax Friday, with
presenters saying they were trying to pressure the government into reforming
organ donation laws.

Shortly before the controversial program was to air, Patrick Lodiers of the
``Big Donor Show'' said the woman was not actually dying of a brain tumor
and the entire exercise was intended to put pressure on the government and
raise awareness of the need for organs.

The three prospective recipients were real patients in need of transplants
and had been in on the hoax, the show said.

The program concept had received widespread criticism for being tasteless
and unethical.

But Lodiers said that it was ``reality that was shocking'' because around
200 people die annually in the Netherlands while waiting for a kidney, and
the average waiting time is more than four years. Under Dutch rules, donors
must be friends, or preferably, family of the recipient. Meeting on a TV
show wouldn't qualify.

``I thought it was brilliant, really,'' said Caroline Klingers, a kidney
patient who was watching the show at a kidney treatment center in Bussum,
Netherlands.

``I know these transplant doctors, and I thought they'll never go and
actually do it. But it's good for the publicity and there are no losers.''

During the show, 25 kidney patients were vetted by ``Lisa,'' and most were
quickly dismissed for being too old, too young, smokers, ex-smokers or
unemployed. Contestants gave moving pleas for why they should receive the
organ.

``It really hurt watching that,'' said Tim Duyst, whose wife is awaiting a
transplant and cannot work. ``You're dismissed in a wave of the hand.''

Viewers were called on to express an opinion or vote for their favorite
candidate by SMS text message for 47 cents.

The show was produced by Endemol, which created ``Big Brother'' in 1999.

The Royal Netherlands Medical Association, known by its Dutch acronym KNM,
had urged its members not to participate and questioned whether the program
might just be a publicity stunt.

``Given the large medical, psychological, and legal uncertainties around
this case, the KNMG considers the chance extremely small that it will ever
come to an organ transplant,'' it said.

All seven of the country's transplant centers had said they not cooperating
with the program, KNMG spokeswoman Saskia van der Ree.

Earlier in the week, the Cabinet declined suggestions from lawmakers to ban
the program, saying that would amount to censorship.