By Michael S. Dauber, GBI Visiting Scholar
A recent article in New Republic highlights one of the hallmark areas of ethical controversy in bioethics: designing the fairest possible system for organ transplantation. The article, written by Jordan Michael Smith, examines the cases of several patients in need of organ transplants, and discusses the roles geography and personal finances play in determining who receives organs.
Outside of directed donations (donations in which the donor decides to donate an organ directly to a specific patient), organ donation in the United States is controlled by the United Network for Organ Sharing, commonly known as UNOS. The network divides the country up into eleven regions, with each region containing an individual waiting list upon which patients can register to receive organs. Within each list, priority is given on a chronological, medical, and compatibility basis: a patient who was on the list before other relevant patients with the most severe medical need for the organ and the best match with the donor organ’s properties gets the highest priority. So, for example, if Bob is an exact match for a kidney and has been on the list as long as Fred has, but Fred needs the kidney immediately whereas Bob could wait a few more months, Fred gets the kidney. Similar tradeoffs occur to account for differences in any other category to achieve what many consider a fair system.
Smith’s article highlights two significant problems with the current UNOS system: the ways in which geography and one’s economic status play a disproportionate role in determining who receives organs, creating a heavy practical bias in favor of rich patients over poor ones. There is currently no rule prohibiting patients from registering in multiple regions or merely traveling to a region in which one is more likely to receive an organ, a practice often referred to as “Transplant Tourism.” Typically, patients with more money will be able to do so, while less economically fortunate individuals will not.
While bioethicists often like to think of extreme cases in which a very wealthy individual can hop on a jet and register on every list because he or she has the means of arriving at any hospital quickly enough to qualify, the problem extends down to more ordinary circumstances. For example, Smith highlights the case of Lisa Waters, a 25-year-old patient with Primary Biliary Cirrhosis in need of a liver transplant, who made the move from New Jersey (Region Nine) down to North Carolina (Region Eleven) to register in a location where livers were less scarce. Eleven days after her move, she received an organ.
The problem is that not all patients will have the means to make even a temporary move. Lisa was fortunate in that she had relatives to take her in and support her in North Carolina; imagine if one needed to move to an area in which one might need to buy or rent a place to stay, wracking up thousands of dollars in expenses without the guarantee that one could receive an organ? Not to mention the medical costs associated with the transplant itself which, according to Smith, can be over $500,000. If one does not have insurance, or insurance that will cover anything beyond the costs of the surgery and some follow-up care, the combined effect is a system in which rich patients are able to exploit practical flaws in the situation and undermine the purpose of UNOS in the first place: creating a fair system based on medical indications and time. Unfortunately, these cases are common as well: Smith mentions the case of Angie Compton, a patient who died of Lupus in her thirties without receiving a transplant, partly because she did not have the resources to travel as Lisa did.
As Smith notes, bioethicists and policymakers have tried to fix these issues for decades. However, various stakeholders have been hesitant to make any meaningful changes. Hospitals benefit from transplant tourism because rich patients are usually able to pay the full costs associated with transplants, either through insurance or personal wealth, whereas economically disadvantaged patients may not be able to. This means that hospitals may lose money on the latter patients while making money on the former. While medical ethics theorists traditionally argue that decisions about individual patients are not supposed to be made on systemic, societal resource distribution criteria, there may be a salient argument to be made from a public health perspective: we have limited medical resources, including a significant shortage of organs, and money earned from some expensive medical procedures can enable institutions to offer care in other areas with the extra funds. The argument is that comparatively wealthy patients who can actually pay the costs for treatment, thus enabling hospitals to treat or save more people in the long run. So, while it might seem unfair on some theories of individual medical ethics, it creates a more ethical system as a whole.
This tension raises serious questions about the ways we should think about and balance the two main ways of looking at bioethical dilemmas: the perspectives of individual patients and personal medical treatment decisions, and the needs and functioning of society as a whole. Should one be given more weight than another? As mentioned above, physicians are not supposed to figure resource distribution concerns into individual treatment decisions, at least not heavily. Exceptions apply when patients and their families may request treatments or resources that will not help the patient, as those resources would help someone else. But when two patients have an equal claim to resources, clinicians are supposed to focus on the needs of the patients, not the ways in which money earned for the procedure could help institutions better serve other patients. Yet ignoring these issues completely may be just as extreme as only focusing on wealth, and therefore just as problematic.
Still, changing the manner of clinical ethical practice to account for money seems deeply problematic and inherently discriminatory in immoral ways: it suggests that patients deserve treatment less based on the mere fact that they have less money. Changing the UNOS system itself would be optimal, though, as Smith mentions, change has encountered serious resistance. Plans that would have prevented individuals from traveling more than 150 miles for a transplant were rejected in the summer of 2017; the only plan passed, one that would allow shipping organs from one region to another in emergent situations, has been criticized as doing little to actually remedy the situation.
As Smith notes, James Burdick, a former president of UNOS who works as a surgeon at St. Johns, argues that we’re thinking about organ transplantation the wrong way. “We’re still thinking in those old-fashioned terms of sections of the country,” he says. With increasingly rapid ways of transporting people and organs across ever-growing swaths of the country, it may be time to rethink the system as a whole.
Michael S. Dauber is a bioethicist with an MA in Bioethics from NYU. He is a Visiting Scholar with Global Bioethics Initiative and has served as a medical ethicist and works as an IRB Coordinator. For questions, feel free to email him at firstname.lastname@example.org.