By John Talbot, WFU JD/MA in Bioethics Candidate ’21
History
The first successful organ transplant occurred in 1954, when one twenty-three-year-old male donated his kidney to his identical twin brother.[1] Since this first successful transplant, advances in science have allowed more widespread access to transplants, a greater variety of organs capable of transplantation, and better longevity and transport of the organs.[2] Following the exponential growth in organ transplant capabilities since the 1950s, there was a clear need for a national regulatory structure to govern the procurement and distribution of all donated organs. In an attempt to address this issue, transplant professionals created the Southeast Organ Procurement Foundation in 1968, which subsequently developed into a fairly crude computer-based network in 1977 for sharing matching information.[3] Understanding the need for a more uniform matching system that could be used across the nation, Congress passed the National Organ Transplant Act in 1984.[4] This Act created the Organ Procurement and Transplantation Network (OPTN) which was required to be operated by a non-profit under a federal contract.[5] The United Network for Organ Sharing (UNOS) was initially offered the contract in 1986, and continues to administer the OPTN to this day.[6]
Introduction
While the centralized governance of organ transplantation was a strength overall, statistics shed light on arguably one of the major downfalls of UNOS. In 2017, there were 2,813,503 deaths in the United States, but only 34,772 transplants occurred, averaging around 95 transplants a day.[7] UNOS states that a single donor can save up to eight lives, yet on average, twenty people die every day waiting for transplants. Further, 95% of American adults support organ donation, yet only 58% are currently signed up to posthumously donate.[8] Given these metrics, two glaring problems arise: a necessity for systemic changes in organ donor registration, and an institution-based process for controlling organ quality. Both of these challenges will be discussed here briefly and do not represent exhaustive analyses of the subject. Instead, the goal is only to begin a serious inquiry into the reasons behind the flaws in the structure of the American organ donation system.
Problem 1: Changing The System
The United States needs to address the existing procedure for enrollment in organ donation services, as well as the unnecessary hurdles embedded in the process that dampen signups, given the popularity of the option.[9] The United States has an opt-in system, meaning that one has to actively choose to complete a registration that arguably acts as a deterrent and a needless inconvenience. For example, there are only two ways in which an individual may register to become an organ donor.[10] One way is during an individuals’ license registration or renewal. Depending on which Department of Motor Vehicles office is providing the service, this option may not be readily advertised by staff or apparent from any of the posted signs.
The second option is through an online portal, the specifics of which vary depending on the state of residence of the individual.[11] Fortunately, there are Organ Procurement Organizations at the state level that monitor the registry and check for a decedent’s registration status.[12] However, because organs are generally only viable for up to twenty-four hours after death, and only last from four to eighteen hours once removed from the body, the transplantation process can be impeded by the complexities of attempting to clarify the legal logistics of a donor’s status.[13] In contrast, France has an opt-out system in which everyone is assumed to be aconsenting donor unless they choose to opt-out through a very simple online portal linked to one single governmental registry that operates nationally.[14] Comparing the online portal to the United States’, there is simply a single governmental registry that covers all of the country.[15] Given the widespread acceptance of organ donation reflected in American polls[16], it would make much more sense for this opt-out model to also be the American standard. Aside from those who believe misconceived notions about organ donation, such as that it prevents a decedent from having an open-casket funeral, and those with religious objections in relation to viewing the donation as being a genuine act of charity and goodwill, very few Americans are truly against organ donation.[17]
Problem 2: We Should Ultimately Let The Patients Decide
Given the number of reported deaths in the United States, it seems as though the number of people simultaneously dying every day due to the “lack” of donated organs does not comport with the number of organs that should theoretically be available. This discrepancy is due directly to OPTN’s “Member Evaluation Plan” compliance handbook.[18] OPTN, through UNOS, sets criteria for eligibility that hospitals must strictly adhere to in order for their facility to continue to receive organs in the future.[19] For example, if a hospital has a higher failure rate for organ acceptance and recipient viability, that hospital will be less likely to be offered donated organs going forward. This clearly creates an incentive for hospitals to only take donations that will likely be an almost perfect match. Thus, in the United States, it is reported that only three in every one thousand deaths are eligible for donation.[20] It is evident that these guidelines in the OPTN compliance handbook are arguably set too high, and the decision about organ quality should instead be shifted to the patient, who can determine what level of risk they are willing and comfortable to accept.
Herein lies the heart of this second problem: many patients are not made aware that this “choice” is occurring at all.[21] Without patient involvement, the doctor may deem an organ not suitable for a recipient patient, motivated solely by the harsh metrics the institution faces for future transplantation.[22] For example, an organ could have come from an older donor, have been previously infected with a treatable disease, such as Hepatitis C, have been exposed to intravenous drug use, and even the size of the organ itself. All of these qualities can be a basis for a legitimate decision to decline the organ donation, but it should be one that is at least brought to the patient themselves. These donor facilities should focus on their responsibility for the patients who are undergoing the transplants, with the primary goal being to extend their life and maximize its quality. There is a huge difference between the death of someone awaiting a transplant in the facility, compared to someone who had received a transplant and has since died, generally within a one-year time frame.[23] One way to combat this problem would be to actively reconsider the metrics used by OPTN and UNOS for determining a facilities’ “success” rate. This would evidently take away the disincentive that many transplant surgeons currently face in bringing possible donor organs to their patients who are desperately in need and would otherwise die waiting.
Conclusion
Overall, the entire process of organ donation, from registration to eligibility criteria, needs to be seriously revisited. Furthermore, I acknowledge that there is no clear answer to remedy this crisis we are facing in the United States. However, the two problems I highlighted, and my subsequent suggestions for change, should serve as great starting points for further discussion. The American system most likely will not change for some time. However, given the national polling, it seems as though a change in structure and organization would not only be warranted, but also highly favored. This would resolve much of the wasted time in deciphering donor registration, while also having the donor pool grow tremendously from the estimated 58% of Americans that are registered now. Furthermore, by returning decision-making capacity to patients waiting for a donor organ, patients and their doctors may be able to make decisions that will allow the patient a second chance at life. Without this agency, a patient could be on the waiting list for years, even though a possible organ may already have been offered to the facility. Even though a possible organ may not have such a high percentage of survivability and success following the transplant, this is a conscious decision that while the doctor should nevertheless have a role in, should ultimately be decided by the patient whose life is at stake.
[1] United Network for Organ Sharing. “History.” Transplant Living, U.N.O.S., 25 Feb. 2005, transplantliving.org/living-donation/history/.
[2] Id.
[3] United Network for Organ Sharing. “History.” U.N.O.S., 1 Jan. 1970, unos.org/transplant/history/.
[4] U.S. Department of Health and Human Services. “Organ Procurement and Transplantation Network.” OPTN, Organ Procurement and Transplantation Network, optn.transplant.hrsa.gov/governance/about-the-optn/history-nota/.
[5] Id.
[6] Id.
[7] “FastStats – Deaths and Mortality.” Centers for Disease Control and Prevention, http://www.cdc.gov/nchs/fastats/deaths.htm.
[8] Health Resources & Services Administration. “Organ Donation Statistics.” Organ Donor, 30 Sept. 2019, http://www.organdonor.gov/statistics-stories/statistics.html.
[9] Id.
[10] Id.
[11] Id.
[12] Health Resources & Services Administration. “The Deceased Donation Process.” Organ Donor, 22 Aug. 2018, http://www.organdonor.gov/about/process/deceased-donation.html#authorize.
[13] Supra, FN 8.
[14] “Si Vous Ne Souhaitez Pas Donner Vos Organes Et Tissus Après Votre Mort, Inscrivez-Vous Sur Le Registre National Des Refus.” Registre National Des Refus, http://www.registrenationaldesrefus.fr/#etape-1.
[15] Id.
[16] Supra, FN 8.
[17] Supra, FN 8.
[18] U.S. Department of Health & Human Services. “Organ Procurement and Transplantation Network.” OPTN, 11 July 2019, optn.transplant.hrsa.gov/governance/compliance/.
[19] Organ Procurement and Transplantation Network. OPTN Member Monitoring Processes. optn.transplant.hrsa.gov/media/1202/evaluation_plan.pdf.
[20] Supra, FN 8.
[21] Goldberg, David S., et al. “Liver Transplant Center Variability In Accepting Organ Offers And Its Impact On Patient Survival.” Journal Of Hepatology, Elsevier Inc., 25 Nov. 2015, doi.org/10.1016/j.jhep.2015.11.015.
[22] Id.
[23] Id.
(Image Attribution: https://www.pennmedicine.org/news/news-blog/2017/september/the-ins-and-outs-of-organ-donation)
Awaken 