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.

Why Not Sell Your Kidney for Personal Gain?

The Canadian Society of Transplantation tells on its website a story that is a mirror image of what is happening all over the world. More than two times as many Canadians are on waiting lists for transplant organs than there are suitable donor organs. Reportedly about 200 Canadians died last year while waiting for suitable organs. Most people on the waiting list are desperate for transplant kidneys. South of our border about 80,000 Americans are on waiting lists for kidney transplants. The current situation is not only unacceptable because people die preventable deaths when they could be looking forward to a productive and happy life, it is also immensely wasteful as kidney dialysis is a hugely expensive undertaking. How can we close the gap between the number of patients in need of transplant organs and the availability of suitable organs?

Dead donors

A number of different policies aimed at increasing the number of transplant organs in an ethical manner have been discussed and implemented in various countries around the world. I am personally in favor of an idea currently debated in PEI. The proposal is on the table that we should switch from an opt-in to an opt-out system of consent. The idea here is that for everyone who does not expressly refuse to donate their organs after their demise the reasonable assumption is made that they would be happy to see their organs utilized to preserve a fellow-Canadian’s life. However, some don’t like this proposition. As far as they are concerned, this is not just a question of solidarity but one of ownership. After all, nobody is entitled to take my car after my demise either, just because I have forgotten to stipulate that it should go to my loved-ones.

Living donors

Here is where an alternative idea comes into play: perhaps we should consider incentivizing potential sources of transplant organs, ie people like you and me. I am focusing here primarily on living donor kidneys. We have reasonably persuasive data today suggesting that it is perfectly safe for most healthy people to donate kidneys. As the autonomous owners of our bodies we are entitled to make decisions with regard to how we wish to use our bodies. There are lots of things we are morally and legally entitled to do with our bodies, including engaging in risky activities like playing rugby, scuba diving in shark infested waters and many others. Strangely, when it comes to the use of our bodies for medical research or transplantation purposes, the response we get frequently from religious leaders, medical ethicists and others is that we should contribute from the goodness of our hearts, rather than from a less altruistic motive. Any sensible medical system would focus here on outcomes instead, namely a maximization of the number of available suitable transplant organs, rather then a second-guessing of vendors’ motives. Given that we already accept altruistically motivated living donor kidney donations, it does not strike me as particularly plausible that people should continue to lose their precious lives because of an unreasonable societal squeamishness when it comes to paying people for their spare kidneys for transplantation purposes. 

It is important to recognize that our current system is not working in many ways. Precious lives are unnecessarily lost year after year. Desperate patients travel overseas and obtain kidneys frequently under questionable circumstances, often exploiting vulnerable impoverished people in developing countries. The list goes on. Suffice it to say: leaving things as they are is not a cost neutral choice!

Let’s try it

What I am proposing is to run a pilot program aimed at investigating whether strictly government regulated incentives for living donor transplant kidneys would result in additional available transplant organs with a resultant decrease or elimination of the current waiting lists.  The objective of this pilot program would be two-fold: 1) develop a system that would create successful incentives for organ vendors to offer their spare kidneys while at the same time 2) ensure that sufficient safeguards are put in place to guarantee that whatever incentives are offered do not generate additional harms. Benjamin Hippen, a US based transplant specialist sums up what features a government regulated market for transplant organs should have: It prioritizes the safety of both vendors and recipients; it must be transparent with regard to risks to vendors and recipients; it must safeguard institutional integrity regarding guidelines for cooperating with kidney vendors, and last but not least it must operate under a robust legal framework.