Monday, March 24, 2008

Transplantation and Transparency

Recent news reports have raised questions about the number of persons in the United States waiting for organ donations. You can read the Washington Post story here and a commentary by ethicist Arthur Caplan here.

It has been a truism for years that the number of those who might benefit from organ donation has been roughly four times the number of organs donated. In one sense, it doesn’t seem to make a lot of difference whether that multiplier is closer to three times than to four times organs donated. At the same time, critics are correct that it certainly can make a difference. Caplan cites a number of examples.

There are several issues regarding distribution of organs that don’t lend themselves to simple resolution. For example, should distribution of organs be on a national or regional basis? Some large centers, with larger numbers of patients on their own lists (or better, perhaps, their portions of “the list”), would like national distribution of organs to the first appropriate donor, rather than assessing first those patients geographically closest to the donor patient. However, increased transportation time does have an effect on the viability of the organ, and conceivably on the viability of the waiting patient. Those extra hours can make a significant difference. And certainly patients who might benefit from transplant are spread all across the country. On the other hand, the larger transplant centers argue, and not without reason, that in doing more procedures they have more experience and so greater likelihood of having good outcomes. Some patients and families literally move so as to be closer to those centers. Currently, the norm is regional distribution first, but the discussion recurs periodically.

Another issue is “presumed consent” vs. “presumed denial.” There are patients who die, sadly, with no family or community at all, and sometimes completely without identification. Many patients who die suddenly have expressed no opinion on donating their organs. In those cases, should the presumption be that they would wish to be generous and donate their organs; or should it be that they would decline to donate? Donation is certainly generous, and Americans are certainly generous people, at last over all. At the same time, to what extent should that guide our presumption in the individual case? At this time the practice is to presume denial, to presume that if the individual did wish to donate the individual would have made that known, whether by joining a donor registry or informing family, or at least signing the appropriate line on a driver’s license. However, in much of continental Europe the norm is “presumed consent,” and the position certainly has its advocates in this country.

The concerns about the number of patients awaiting transplant do point out the importance of transparency in the entire process of donation and transplantation of organs and tissues. I think that would be a matter of general agreement of everyone involved. That said, for the good of patients who might or might not benefit from transplantation, and for the good of families who might consider donating the organs of a loved one, there’s no such thing as “too much” transparency. We need to keep these issues out in public discussion. That way both as individuals and as a society we can decide according to our wishes and our values.

2 comments:

Dave said...

Over half of the 98,000 Americans on the national transplant waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 6,000 of our neighbors suffer and die needlessly every year as a result.

There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

Marshall said...

Dave:

I see the logic of LifeSharers. As a society, we have often done our best to avoid arguments about "deserving" in the distribution of organs. I'm not saying it hasn't happened, but that the medical community has tried hard to make the decisions based on medical data (the best clinical match with the patient clinically most likely to benefit). Certainly, LifeSharers' position isn't unlike that of many blood donation programs: those who donate are for a given period of time (usually a year) promised blood at no cost if they need it.

There have been other suggestions of ways to encourage donation, including some financial compensation for donors, or offering a regulated market (in contrast to the relatively unregulated markets for organs in some developing nations). These have, however, been rejected as unethical, in part from the risk of being persuasive to the point of being coercive, and in part from, ultimately, favoring potential recipients with means over those who are poor. However, the greatest concern has been an underlying aversion to in any sense "commodifying" human organs and tissues, and therefore human lives. Although I'm not really so confused as to think we don't put a price on human lives, we don't to appear that we do, and especially when one person has to die that another might live (and, while some kidney and partial liver donations don't require it, the great majority of donations do). The concern is that to make the organs into commodities is to make the humans who donate them into commodities.

From the days of the first "dialysis committees" through current "transplant committees," there has been resistance to determining who is deserving. Willingness to donate might be one factor, but how many others might be considered? And how might they be balanced? How long should one be on record before discovering the need? I once had a life insurance policy that declined to cover suicide for the first two years because I'd once seen a therapist for mild depression.

I do think there is one other interesting aspect to LifeSharers' particular approach. The patient who expresses willingness to donate, and then out of necessity receives a donated organ, may well then be largely relieved of ever having to donate solid organs himself. The diseases that make the transplant necessary, and sometimes the immune suppressive medications an organ recipient must take to resist rejection, can themselves affect the person's eligibility to donate.

I recognize the logic off LifeSharers, but I'm not persuaded. In any case, since the decision in most states is still up to the family of the deceased (yes, the family: one's rights end at death, and registration or a signed driver's license is an indication of your wishes but not a binding document), the willingness of a LifeSharers member is not enforceable, even if families will usually go along.