Proposed Reforms to Liver Transplant System Address Disparity, Raise Ethical Questions
Each year over 1,500 individuals in the United States die while waiting for a liver transplantation. Another 1,500 candidates are removed from waiting lists because they are deemed too medically frail to receive a liver. Some reformers believe that these figures can be reduced by changing administrative procedures used to determine how organs are distributed. Others believe that these changes would have detrimental effects on certain regions of the nation. Central to this discussion is our underlying ethical obligation to maximize benefits across a population while assuring a minimum level of duty and fairness to each individual.
Proposed Changes:A public forum was held recently in Chicago to hear input on a new proposal advanced by the Organ Procurement and Transplantation Network’s (OPTN) Liver & Intestinal Organ Transplantation Committee (“Liver Committee”). This forum followed the issuance of a concept paper in June that showed significant geographic disparities in access to liver transplantation across the U.S. Currently, allocation of donated livers is determined based on the medical urgency of those candidates on the waiting list and a second factor: geography. Geographic consideration is important, as a liver must be procured, transported, and transplanted with minimal delay. To accommodate for this risk, liver distribution is based “on the geographic relationship between the hospital where the organ is recovered and the transplant hospital where the candidate is listed” according to the concept paper. To facilitate objective decisions, the nation is divided into 11 regions based somewhat arbitrarily on boundaries of 58 organ procurement organizations and other historic organ sharing relationships. The Liver Committee seeks to place more emphasis on medical need and minimize the geographic variable by reducing the total number of regions from 11 to four. Doing so, the committee believes, will result in a reduction of over 500 waiting list deaths over the course of five years.
Under the new system, organs would be distributed more equitably throughout the nation and would emphasize medical need over geography; however, this would come at the potential expense of denying organs to those in donor-heavy areas, and would also have impacts on public policy.
Variation in State Regulatory and Legal Environments: State policies and efforts to educate citizens on organ donation vary greatly from state to state. Some states have been very aggressive in organ donation education and outreach, while others have not. For example, not all states have organ designation options on driver’s licenses, and among those that do, there is variation in the weight this designation carries. Even when the words “Organ Donor” appear on a driver’s license, varying regulatory and legal environments throughout states make this designation not legally binding. In some states, families must give consent to harvest organs regardless of one’s status as an organ donor. Even in states that authorize organ harvesting if family members cannot be located within a specific time frame after the donor’s death, this option is seldom carried through. Due in part to these complex regulatory and legal obstacles surrounding organ donation, The Journal of the American College of Surgeons (Vol. 173(5), pg. 391-396) reports that nationwide, less than one-fourth of those who are designated as organ donors actually yield a useable organ for transplantation.
Opponents of the reforms proposed by the Liver Committee believe that reducing the number of regions from 11 to four will disproportionately harm those who reside in donor-heavy regions. Under the new system these regions will experience a net loss in liver transplantations. Instead of reducing the number of regions, opponents believe greater efforts should be made by states to foster an increase in rates of organ donations – especially those states in regions that are currently donor-weak.
What are our Ethical Duties?Central to this debate is an important ethical question: which should prevail — our utilitarian obligation to maximize benefits nationwide or our deontological obligation of fairness to individuals and specifically, those who live in donor-rich areas?
Organs are a scare, lifesaving resource. As such, any change in rationing policy will invite broad debate and opposition. When scarcity forces us to decide who gets a finite resource, our democratic traditions and sense of distributive justice often influence us to seek that which will produce the greatest good for the greatest number. From this utilitarian perspective, it appears that decreasing the number of liver donation regions from 11 to four will produce the greatest good, as it will result in fewer waiting list deaths.
However, reformers should be cautioned that strict utilitarianism comes with opportunity costs. Under the current 11-region system, an average of 4.5 states share a region, compared with the proposed four-region system where 12.5 states will comprise a region on average. Four, very large regions will be less homogenous from a political and regulatory environment perspective than the current 11 regions. States and regions that have been aggressive in their efforts to educate citizens on organ donations and whose regulatory and legal environments have fostered more successful rates of donation could experience a net decrease in transplantations, as donated livers from these regions will be shipped to individuals outside of the current regional boundaries. As state budgets are continually squeezed, creation of larger regions may have the unintended consequence of states spending less money on organ donation education efforts. A freerider problem may present itself as residents of some states which under-spend on organ donation education efforts will experience an increase in utility at the expense of those citizens living in more aggressive states which will experience a decrease.
For this reason, our utilitarian goals should be balanced with deontological considerations for individuals living in states that are currently donor-heavy. Distributive justice calls for equity in who receives a liver, but this must not be at the expense of impairing procedural justice, which calls for equity in how these donation decisions are made. A policy change that results in fewer regions should be accompanied by additional policies and campaigns aimed at increasing rates of donation in areas that are currently donor-weak. Pressure should be placed on policymakers in these states to leverage their regulatory authority to foster stronger rates of organ donation.
Following its public forum in Chicago, the Liver Committee will process the over 700 public comments submitted in response to its proposals along with the expert testimony received in Chicago and make a formal recommendation for adoption by the OPTN. For more information or to follow the development of this issue, visit the OPTN website.
Author: Brandon Danz, M.P.A., is Special Advisor to the Secretary of the Pennsylvania Department of Public Welfare. He is a graduate of the Master of Public Administration program at Shippensburg University of Pennsylvania and is seeking a Master of Health Administration degree from The Pennsylvania State University, Harrisburg, with a focus on health care policy development and cost containment. Danz is an active member of the American College of Healthcare Executives and the American Society for Public Administration, where he serves as a featured columnist with the Public Administration Times, the organization’s trade publication. Danz can be reached at firstname.lastname@example.org.