Wednesday, March 18, 2009

Who Lives?


Mr. Smith is a 58-year-old African-American male, who appears at least a decade older than his stated age. He is about 6’0, slim, and features a neatly-trimmed mustache. He sits stooped forward, and relies on a cane to get around. Mr. Smith has a pleasant affect, and even offers to get me a cup of water. His legs show moderate edema, and his eyes feature notable scleral icterus. Mr. Smith is on the list.
Mr. Smith inquires to whether I’m “also on dialysis,” and if I voted for Obama. I told him that I’m attending as a medical student, and that I don’t share my political views in public. Mr. Smith believes that Obama will bring us “back to nature” and will stop “sending jobs overseas.” I smile and tell Mr. Smith that I hope the president helps solve the economic crisis. This is no occasion for pessimism.

Mr. Smith expounds on his dating woes. His last girlfriend was “too needy,” and wanted something more permanent than Mr. Smith was able to provide. Mr. Smith implies that his misgivings were more due to his lack of emotional readiness, rather than the fact that his remaining days are contingent on a fluctuating number on a table, and that, like many of the 101,236 current Americans waiting for an organ, he may die before receiving a much-needed kidney transplant.

I met Mr. Smith, because I happened to sit next to him this past Sunday in a downtown Los Angeles theater, to view “Who Lives?,” a play Sponsored by the Renal Support Network. The production takes place in early 1960s Seattle, and explores the moral anguish afflicting a committee dedicated to choosing the lucky few who will test a curious, but experimentally promising machine, which “removes your blood, cleans it out, and then returns it to your body.”

The panel consists of a devout priest (“God has chosen us for this very important purpose”), an overwhelmed homemaker (“Father, there isn’t anything spiritual about this!”), a blue-collar craftsman (“The workers are always getting a raw deal, so what’s so wrong…”), a pedantic, neophyte doctor (“Disease is just the gross exaggeration of aging”), a pushy Jewish lawyer (“F-ck doctors”), a beautiful, liberated grad student, and some un-endearing blonde guy, who instinctually rejects Black applicants, and focuses the rest of his attention on seducing the grad-student. The group’s task involves ranking people, not merely based on medical criteria, but also each applicant’s presumed “value” to society. Thus, the committee debates the relative "significance" of musicians versus businessmen. The wealthy versus the poor versus the “rags to riches” success stories. Women versus men. Women with children versus men. Fertile women versus infertile women versus men. Blacks versus whites.

Today, such technocratic management of life and death strikes one as pretty abhorrent. Unfortunately, however, I find no solace in our contemporary method of organ allocation. Indeed, while we, as a society, have come to recognize the human infallibility inherent in prioritizing human lives, we now do something far worse, by creating an artificial shortage of life-saving organs, and banning individuals, charities, and the government from paying people for their kidneys.

We invoke all kinds of moral arguments to dissect messy commerce and greed from the prim and genteel art of uprooting a meat-sized slab of tissue, hitching it to various tubes and plumbing out a urine stream. To defend the volunteer-only status of organ donation, liberals and conservatives alike manufacture arguments that they would never entertain, when concerning other topics: “The poor will be the first to give up their organs, and this is harmful!!” (Cs: Should we prevent the needy from obtaining payday loans or eating at McDonald’s? Ls: Ought we to restrict women from obtaining abortion or birth control, even if it posed her some risk?) “It will be racist!” (Check out the demographic makeup of the waiting list.) “It will cheapen the ideal of giving from the goodness of one’s heart! “ (Ls: Do you ascribe the same logic to food stamps? More ceremoniously- “Would you like to sign up today and volunteer to save a life?! Low risk and high 'goodness of heart' satisfaction! No? I, shamefully, haven't signed up either...”) “Legalization will increase violence and coercion!” (Organ prohibition, meet drug prohibition), “Only rich people will be able afford them!” (Rich medical tourists and insurance-holders are generally the only ones who can afford obtaining organ transplants. If legalized, there may still be a disparity between the rich and poor in organ procurement, just as there is in all aspects of medicine, but this does not call for a ban on all medical procedures. However, we can legalize organ sales, and then- depending on whether you favor Heritage or TAP- accept a certain degree of inequality, or fiddle with our health care system, so that the poor can afford organs, as well).

My feeling is that most people oppose economic exchange of organs simply because the whole idea seems very, very unpleasant (yes, to me, too!). But good public policy is not constructed to convenience such a persnickety relic of natural selection as our sense of disgust. We ought to focus solely on whether we are actually helping people like Mr. Smith, who needs additional time to find the fellow freewheeling partner of his dreams.

In “Who Lives?,” while the committee pores over endless piles of pallid folders, the delicate housewife cries out, “We shouldn’t even have the power to make this decision!” However, she and her colleagues at least brave the clearly-understood ramifications of crafting countless letters featuring the dreaded words, “We regret to inform you...” Today, meanwhile, we largely avoid such formalities, by revering our high-minded legal dictates, and remaining casually inattentive to the tragic reality of thousands of end-stage kidneys.

4 comments:

Dave said...

As the death toll from the organ shortage mounts, public opinion will eventually support an organ market. Changes in public policy will then follow.

In the mean time, there is an already-legal way to put a big dent in the organ shortage -- allocate donated organs first to people who have agreed to donate their own organs when they die. UNOS, which manages the national organ allocation system, has the power to make this simple policy change. No legislative action is required.

Americans who want to donate their organs to other registered organ donors don't have to wait for UNOS to act. They can join LifeSharers, 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.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. Non-donors should go to the back of the waiting list as long as there is a shortage of organs.

Anonymous said...

Dave's comments are not particularly accurate. The legal way to put a dent in the organ donor shortage is not to sign up to LifeSharers, but to sign up to your state registry by going to www.donatelife.net.

LifeSharers does not add a person to any donor registry but their own nor is it a legal consent to donate. Hospitals are required to check with their state registries, and have absolutely no reason to check with LifeSharers. What Dave also forgets to mention is that in the several years he has been advocating this scheme, only 12,500 people have joined him, while MILLIONS have joined the state registries. Joining his private club does not give legal consent to donation, and in point of fact, is in direct violation of the "direct donation" rule. A donor/donor's-next-of-kin can donate an organ to any specific person on the waiting list, and if that person is a match, they will receive it regardless of their spot on the list. It is illegal to try to give an organ only to a group of people however, which is what LifeSharers are. You can no more say "I want my organs to go only to LifeSharers" than you can say "I only would like my organs to go to white people under the age of 35," and for the exact same reasons.

I think it would be great for people to not only receive some kind of education about donation, maybe in high school health, so that they can make an informed decision instead of reacting to myths and scare-tactics, but also for donors to receive some kind of compensation. It's only fair that a living donor receive wages for work missed, travel expenses, etc. And I think that the least people could do for deceased donors is to pay for some of their burial expenses. That way people don't feel like their selling their organs to the highest bidder, but at the same time, they are being rewarded for saving someone else's life.

Dave said...

Everything I wrote is accurate. Much of what "Anonymous" wrote is not.

Joining LifeSharers and signing our organ donor card is legal consent to donate. This is true under the anatomical gift laws in all 50 states. I challenge Anonymous to give an example of a state law under which signing the LifeSharers organ donor card is not a legal way to make an anatomical gift.

LifeSharers members do not "try to give an organ only to a group of people." Our members offer their organs first to other members, and then to non-members if no member is a suitable match. We do this in a way that is legal under federal law and under the laws of all 50 states. For more information about this, please check out the FAQ page of our web site at http://www.lifesharers.org/faq.asp.

It's wonderful that millions have signed up to donate their organs through state registries. I hope everyone does. But if you join your state's organ donor registry, you'll get nothing in return. It won't help you get a transplant if you need one. If you join LifeSharers, you'll get preferred access to the organs of over 12,000 people. Every time someone else joins LifeSharers, your chances of getting a transplant if you ever need one go up. Preferred access to the organs of other LifeSharers members could literally save your life. Over 50% of the people on the national transplant waiting list die before they get a transplant.

If you'd like to donate your organs to other organ donors, please join LifeSharers at www.lifesharers.org. It's free. It could save your life.

Heal Spieler said...

I think that both Dave and Anonymous make some decent points. I agree whith anonymous that joining LifeSharers may be insufficient, especially so long as the program is not well-known among transplant teams. I am a Lifesharers member, but I am ALSO identified as an organ donor on my driver's license. For me, the point of joining lifesharers is to try to encourage more people to become donors. However, it would be devastating if my organs were discarded, simply because there was no symbol on my license, and people did not think to look for a Lifesharers card.

I disagree with Anonymous that discriminating based on Lifesharers membership is akin to discriminating based on race or sex. Lifesharers allows anyone to join, so the only discriminating factors include 1) Willingness to join or 2) Knowledge about the program. The former doesn't bother me, but the latter does. This is another thing that can only be helped with increased publicity about the program.
The key to Lifesharers is not that anyone cares more about the life of a fellow member, it is to motivate behavior. If I could write, "I give my organs preferentially to members of the Donate Life Program, or are ineligable to sign up as donors," I would do so. Not because I care more about such people, or want to punish others, but because I believe that people respond to incentives, and the possibility of gaining "advantage" in the ability to procure an organ, could be enough to motivate people to offer their organs.
I like anonymous' idea of paying for burial expenses, and the costs associated with donation, but I am afraid that would not be enough, and that failing to allow for large compensation will continue to artificially restrict the supply of organs. Burial costs may be enough to encourage people to sign up to be "donors upon death," and is a good first step, it wouldn't encourage live donors.

Thanks to both of you for your thoughtful comments.