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Allocating a Future: Ethics and Organ Transplantation
by Heidi Williams
In February 2003, 17-year-old Jesica Santillan received a heart-lung transplant at Duke University Hospital that went badly awry because, by mistake, doctors used donor organs from a patient with a different blood type. The botched operation and subsequent unsuccessful retransplant opened a discussion in the media, in internet chat rooms, and in ethicists' circles regarding how we, in the United States, allocate the scarce commodity of organs for transplant. How do we go about allocating a future for people who will die without a transplant? How do we go about denying it? When so many are waiting for their shot at a life worth living, is it fair to grant multiple organs or multiple transplants to a person whose chance for survival is slim to none? And though we, as compassionate human beings, want to help everyone, how far should our benevolence extend beyond our borders? Are we responsible for seeing that the needy who come to America for help receive their chance, or are we morally responsible to our own citizens only?
Rationing scarce resources presents an ethical challenge. I believe that since available organs are so scarce, it is imperative that the utility of donated organs be maximized. In this paper, I suggest that organ allocation be rooted in distributive justice, which demands that equals be treated equally and unequals be treated unequally. I will explore this formal principle and the substantive criteria of equality, need and efficacy (maximum survivability) as they relate to the just allocation of organs for transplant. I will apply these principles of justice to Jésica's case to show that while her first transplant was warranted, her second was not. And, finally, I will conclude that Jésica Santillán's case should serve as an example of what's wrong with our current system of organ allocation.
First, let's address equality as it applies to justice. All other things being equal, who holds a claim to the organs available for transplant in the United Statesjust citizens, or illegal immigrants, too? A recent Chicago news source cited the tragedy of "American taxpayers and their children who died last year waiting for the transplant that Duke University Hospital chose to give to a citizen of a foreign nation" (Bailey, 2). This article went on to state that our system "rewards illegal aliens for entering the United States to access our health care system, thus condemning some of the American taxpayers who pay for that system to premature deaths. Few could deny the sheer unfairness of such a situation" (Bailey, 2). But how true are these statements? Are organs allocated in a way that promotes inequality for American citizens? An ethicist's first responsibility is to look at the facts, and the facts in this instance tell a different story.
According to the United Network for Organ Sharing (UNOS), American citizens are more likely to receive organs of non-citizens than vice versa; "As a percentage, every year, U.S. citizens receive more organs than they donate" (Vedantam, 2). Also, UNOS limits the number of transplants allotted to non-citizens to no more than five percent of available organs; however, no limits on donations are made (Vedantam, 2). These facts indicate that Americans are benefiting from the organ donations of non-citizens, receiving more than an equal share.
Another question arises when we speak of justice regarding this issue: what does our society owe to illegal immigrants in light of the benefits we receive from their participation in our economic and social life? In his article, "Parties to the Social Contract? Justice and Health Care for Undocumented Immigrants," Kenneth DeVille explains the idea of the social contract as "individuals [who] create civil societies by joining together for their mutual benefit and protection" (306). According to DeVille, citizenship is not necessarily the best, nor the only, method of determining who is party to this contract. He notes, "In many cases, immigrants are socially, culturally and economically integrated members of our civil society liv[ing] under the same laws as citizens pay[ing] many of the same taxes" (307). He goes on to note the ambiguity of an American system that halfheartedly enforces immigration and work laws while "benefiting from, and in some cases exploiting, immigrant labor" (307). He makes the point that the social contract demands extending social goods to members of society who participate significantly within that society. Our economy relies on the low cost labor of illegal immigrants to keep produce prices down. We allow hordes of workers to do the backbreaking jobs we disdain, turning a blind eye to aliens working in our fields. If we, as citizens, benefit from their exploitation, we have a duty to honor our side of the social contract and allow them access to our services. In my opinion, UNOS has acted fairly in safeguarding equality of organ allocation by taking into consideration the moral mandate we have as human beings to care for one another. By allowing up to five percent of the organs within its system to be allocated to non-citizens, they are identifying the common bond between members of the worldwide community while respecting and carefully guarding the resources of the American community.
Equal opportunity to tap into the system of organ allocation is just one component of distributive justice surrounding organ allocation. As Ronald Munson points out in Intervention and Reflection, "we do not always expect that being treated justly will work to our direct advantage" (37). But in a situation where resources are scarce and not everyone who needs help will receive it, it is important that allocation be fair. In selecting a system of allocation, it would be wise to choose one "that favored those most likely to benefit from a transplant. Rational planners [behind the veil of ignorance], ignorant as to whether or not they will ever need a transplant or retransplant, would increase their own chances of benefiting from a transplant by setting up a system that, all else equal, distributed scarce organs to those most likely to gain long-term survival from a transplant" (Ubel, et al, 270). Maximizing utility just makes sense, so we need to determine which of the neediest candidates are most likely to have the highest success rate. The basic principle of justice that dictates similar cases be treated similarly, conversely allows for different treatment when cases are dissimilar. It is these dissimilarities that have the most effect on maximizing the utility (or the life) of a donated organ. The first criterion to be looked at is need.
In Transplantation Ethics, Robert Veatch outlines an interesting way of assessing need. He calls it the "over-a-lifetime perspective" (340). This approach takes into consideration a person's entire life when determining who is worst off. A 17-year-old and an 80-year-old both dying of heart failure are equally bad off, but this perspective allows that the person who has had 63 more years of life is better off, so the 17 year old is neediest (Veatch, 341). Veatch writes, "from this over-a-lifetime perspective, justice requires that we target organs for these younger persons who are so poorly off that they will not make it to old age without being given special priority. The younger the age of the person, the higher the claim" (341). This methodology furthers the goal of utilizing organs to their maximum potential.
Of course, it would be foolish to base allocation simply on the age of the neediest patients; efficacy, or expected survivability, must also be considered. Presently, our system of allocation gives priority to those who are the sickest or most in need of a transplant. But sometimes those who are the sickest and in the most immediate need will not receive the same benefit from the transplant as someone whose medical condition is currently more stable. Robert Veatch notes, "They may be so sick that they have a higher chance of dying regardless of treatment" (295). I believe there is a moral obligation, due to the scarcity of organs, to maximize the potential longevity of donated organs and place them where they are most likely to do the most good (bring the most health) over the longest period of time.
This brings us to the question of retransplantation. Years of collecting data show that "retransplant recipients at similar levels of urgency do significantly worse than primary transplant recipients, a difference that increases with each successive transplant" (Ubel, et al, 272). Though I don't believe those who have already received a transplant should be prohibited from receiving another, careful and objective consideration should be given to these cases. Reasons for the organ failure and current condition of the patient must be evaluated to determine if the retransplant candidate will maximize the utility of the organ. Preference in the allocation of scarce organs should be given to the patient whose chances of long-term survival are best.
Now that we have a model for organ allocation based on the principles of distributive justice, we turn to Jésica Santillán's case to determine if her transplants were warranted. Starting with her first transplant, let's review the facts. Jésica and her family entered the United States illegally from Mexico several years ago. Doctors in Mexico were not equipped to diagnose nor treat their daughter's rare heart condition of cardiomyopathy which prevents the heart from pumping blood efficiently and eventually leads to death, so, desperate to obtain medical help for their daughter, the Santilláns paid $5,000 to be smuggled into the country (Bailey, 1). Once in the United States, the family settled with relatives in a trailer near Duke University Hospital and their story was publicized in a local newspaper. A wealthy businessman took up the girl's plight, raising money for her medical care and lobbying successfully to get Jésica on Duke's transplant list. Meanwhile, her father had found construction work and her mother was employed as a janitor at a nearby college (Bailey, 1).
After being listed with UNOS in January 2002 for heart transplant, Jésica's condition deteriorated, and in May 2002 she was listed for heart/lung transplant (Fulkerson, 1). At 17 years old, Jésica weighed only eighty pounds and was just five feet tall. Her small size made finding an organ match more difficult. When a heart/lung block was offered to Duke's pediatric unit, the two potential recipients who had been identified by UNOS were unsuitable. In a tragic communication breach, the organs from a type-A donor were awarded to Jésica, whose type-O blood could only lead to acute organ rejection (Adler, 21). Five hours into the transplant surgery, when the organs had already been exchanged, the mistake was discovered. Powerful anti-rejection drugs were administered and UNOS was notified that Jésica was "in critical need of another transplant" (Duke, 1).
Let's stop here and apply the substantive criteria of equality, need and efficacy of a distributive justice model of allocation to Jessica's first transplant. Regarding equality, Jésica had a right to receive an organ transplant based on the UNOS guidelines allowing up to five percent of non-citizens to receive organs. Beyond that, her parents were also employed, contributing members of society-a party to the social contract. Jésica also fulfilled the requirement of need-without a transplant, she would die, and using Veatch's "over-a-lifetime perspective," she was a particularly deserving candidate-her youth gave her a higher claim. In the area of efficacy, Jésica looked to be suitable as well. Her age and current condition gave physicians every indication that the odds of her long-term survival were good. According to a distributive justice model, Jésica's first transplant was warranted. Continuing with the facts, we turn to the second transplant.
As a result of organ failure following the first transplant, Jésica was placed on life support and within two weeks a second set of organs was allotted to her. Before accepting the organs, doctors evaluated her brain activity and surmised she had not suffered irreversible brain damage; therefore, a second transplant was performed (Duke, 1). Though this heart/lung block was functioning well, the trauma of the first organ rejection, paired with being on life support for nearly two weeks caused irreparable brain damage, and two days after the retransplant "all brain function had ceased" (Adler, 24).
Applying the principles of distributive justice to the second transplant
scenario presents a different outcome. Though Jésica still deserved
an equal opportunity based on her illegal immigrant status, she was no
longer equally entitled to a second set of organs because her odds of
survival (and, thus, the odds of maximizing the utility of the organs)
were greatly diminished.
Maximizing utility calls for hard choices but upholds justice by "contribut[ing] to giving people opportunities for equality of outcome" (Veatch, 295). The sad fact is that Jésica's second transplant deprived at least one and perhaps three people from receiving organs they also needed to survive. In a desperate effort to "control damage after its earlier transplant mistake" sound judgment was clouded and valuable organs were wasted (Kirkpatrick, 1). In "Rationing Failure: The Ethical Lessons of the Retransplantation of Scarce Vital Organs," the authors write,
The tragedy of Jésica Santillán's death should be a call to physicians, transplant boards, and UNOS officials to consider allocation criteria outside the Intensive Care Unit where emotions are likely to misguide decision-making. Doctors should not be made to feel they are abandoning their patients during their greatest hour of need, but they should also not be allowed to drain the resource pool when the outcome is unlikely to be good. UNOS should implement a strict policy of organ allocation based on equality, need, and efficacy.
Obviously, I've placed myself behind the "veil of ignorance" in order to reach this proposal. If it were my daughter, my husband, my sister, or my friend who needed the transplant, I would be all for solely using the principle of need to determine allocation. But that's precisely the point: we must have a policy in place that moves decision-making from the more visceral, gut-feeling approach to a rational decision based on projected outcome that is more appropriate for maximizing the utility of our scarce resources. Heartbreaking, yes, but just.
Adler, Jerry, "A Tragic Error," Newsweek Magazine, (March 3, 2003): 21-25.
Bailey, Mike, "Should Americans Get Organs First?" (Suburban
Chicago Newspapers, 3/2/03),
DeVille, Kenneth, "Parties to the Social Contract? Justice and Health
Care for Undocumented
Duke University Hospital, "Chronology of Events Regarding Jésica
Fulkerson, William J., "Duke's Letter About Transplant Error,"
Kher, Unmesh and Paul Cuadros, "A Miracle Denied," Time Magazine, (March 3, 2003): 61.
Kirkpatrick, C.D. and Jim Shamp, "Was Second Transplant a Waste
of Organs?" (Herald-Sun,
Munson, Ronald, Intervention and Reflection, 6 ed (Belmont: Wadsworth/Thomson
Ubel, Peter A. Robert M. Arnold and Arthur L. Caplan, "Rationing
Failure: The Ethical Lessons
Veatch, Robert M., Transplantation Ethics, (Washington, DC: Georgetown UP, 2000), 277-413.
Vedantam, Shankar, "U.S. Citizens Get More Organs Than They Give,"
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