Last week, I had occasion to observe-slash-participate in a graduate level bioethics class on organ transplantation. The presenter began discussing the artifical inflation* of the national wait list when two different students expressed the opinion “Who cares if they’re lying, as long as it makes more people become donors?”
One of these students, btw, is a medical student.
I was apalled, and so was the presenter, but we were both so shocked by this position that we hardly knew how to respond.
I did mention this was ethics class, right?
Aside from the obvious, which is that lying is wrong, let me try to explain why this particular brand of falsehood is so detrimental:
1. When the foundation of your message is built on a lie, it’s very difficult to accept any other part of it as true. When UNOS/OPTN says 105,000 people need organs, but approximately 30% of those are ‘inactive’ (unable to have a transplant) at any given time, and worse – UNOS/OPTN purposely engineered the system to be this way, why should the public believe anything else originating from them?
2. When the deception is revealed, it causes people to distrust the system and not want to be a part of it. Contrary to most romance novels and films, these sorts of tactics do not result in true love and lasting relationships. People feel betrayed by lies and consequently will not allow their loved ones or themselves to become organ donors.
3. It obscures the true current state of the transplant industry. In reality, the ‘need’ for organs in the U.S. remains flat, and the biggest need is growing in the 60+ demographic. Deaths are down (over 50-plus% of so-called ‘deaths on the transplant list’ are inactives*), and approximately 20% of registrants have had at least one transplant, so they’ve already been given the ‘gift of life’. It’s difficult to know any of these things by reading the OPTN’s press releases.
4. Bloating the list makes the analysis of organ procurement efforts difficult. Every year, HRSA makes grant money available to improve organ donation – not living donation, but the signing of the organ donor card and the actual donation of deceased organs. In addition, money is spent every year to prevent kidney failure and/or educate recipients on how to maintain their health post-transplant. Padding the numbers makes defining improvements impossible.
5. The perpetration of these increased numbers provokes would-be recipients to engage in acts of desperation. For exmaple, solicitation of a living donor from friends/family/strangers, or buying an organ on the black market.
6. It pressures people to become living donors out of fear their loved one will ‘die on the waiting list’. Considering the lack of comprehensive long-term data on living donors’ health and well-being, the dearth of follow-up and the variability of informed consent, not to mention the short and long-term risks of being a living donors, this is manipulation of the worst king.
So why the deception?
1. Money. UNOS receives a fee for every registration, to the tune of a $30 million a year budget. Higher quality organ-recipient matches means longer graft survival, which would actually reduce registrations on the list. Not saying UNOS/OPTN fights against quality matches, just that it’s not their top priority.
Btw, those registration fees are paid by Medicare – aka the American tax payers.
2. The greater the need, the more people will come forward as living donors. UNOS/OPTN represents the transplant centers and other organizations with vested interests in performing transplants (pharmaceutical companies, etc.). Living donor transplants mean two surgeries scheduled at a time convenient to the surgeon (as opposed to the middle of the night, weekend or holidays), which a nice bump in revenue in contrast to the one surgery of a deceased donor transplant.
3. Bigger numbers provoke more fear and theoretically will motivate more people to sign their donor card. Refer to reason #2 above about why this will backfire.
*In 2003, UNOS/OPTN passed policy allowing ‘inactives’ to remain on the wait list indefinitely. According to Delmonico & McBride, at the end of 2007, 32.8% of registrants were ‘inactive’ compared to 16.1% at the end of 2003. 52% of deaths in 2007 were inactives, and of those 53% had been inactive for more than one year.