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Bioethics Forum Essay

Organ Donation and Transplantation in the U.S.: 50 Years of Success, Strategies for Improvement

The Uniform Anatomical Gift Act, a landmark law adopted 50 years ago this summer, has provided a sound and stable legal platform on which to base an effective nationwide organ donation and transplantation system, as we discuss in our article in the current issue of the Hastings Center Report. We worked closely with the committee of the National Conference of Commissioners on Uniform State Laws that drafted the act. The cardinal ethical principles of altruism, autonomy, and public trust have been crucial to its success.

The past five decades have brought a commendable and significant increase in the number of lives saved through transplantation. According to the United Network for Organ Sharing, nearly 34,800 transplants, the highest number ever, were performed in 2017, which marked the fifth consecutive year that the number of transplants has increased in the United States. Of the transplants in 2017, 82 percent were from deceased donors.

At the same time, the gap between the number of transplants performed and the number of people eligible is widening. The number of transplant candidates on waiting lists has grown from approximately 18,000 in 1988 to 117,154 on July 13, 2017. Seven thousand Americans died last year waiting for an organ.

What can be done to close this widening gap? The challenge stems from our complex and decentralized organ donation system. In 1984, Congress enacted the National Organ Transplant Act with the goal of developing a national policy on transplantation, assuring an equitable allocation of donor organs, and increasing the number of organs available for transplantation. The law established the Organ Procurement and Transplantation Network operated by the United Network for Organ Sharing. UNOS works with 58 organ procurement organizations and over 200 approved transplant centers. Periodically, each OPO is reviewed by the Health Resources and Services Administration and recertified.

In the hope of increasing the number of transplanted organs, several countries have adopted a presumed consent (or opt-out) legal system, in which everyone is presumed to be an organ donor unless they specifically declare they are not. The results are not persuasive. Spain is widely considered to have the highest donation rate, but it has a highly centralized system, unlike the U.S., and places the full authority to communicate with organ donors’ families in the hands of highly trained physicians and nurses in transplant centers. Rafael Matesanz, the director of the Spanish program since 1989, attributes Spain’s high organ donation rate not to the opt-out law, but rather to the practice of physicians or nurses to always have a conversation with the donors’ families to secure their approval before proceeding with organ removal. Wales shifted to presumed consent in 2015, but after two years, the numbers of organ donations declined slightly. In England, a proposal to adopt an opt-out system is being met with some skepticism, due to a lack of evidence that such systems increase donation rates.

We believe that there are a number of ways that our organ donation, procurement, and transplantation system can improve. These are based on suggestions from experts in the field, including transplant surgeons, researchers, lawyers, ethicists, government officials, as well as a recent National Academy of Medicine report and a strategic plan developed by the Health Resources and Services Administration.

First, encourage individuals and families to discuss and document their wishes. Involve estate and trust lawyers as well as departments of motor vehicles, and include the issue in high school, medical school, and nursing school curricula. Use social media and high-profile advocates to increase the number of individuals who declare their intention to be an organ donor. Develop national standards to certify staff communicators and counselors who work with families to maximize their ability to implement donation while respecting their wishes.

Second, commit to systematic and ongoing quality improvement efforts among organ procurement organizations and encourage Centers for Medicare and Medicaid Services and the Department of Health and Human Services to enhance incentives to improve results. Improve relationships between receiving hospitals and OPO personnel, to ensure that they work collaboratively to maximize donations. Improve the coordination of organ donation registries to increase the availability of organs. Enhance the equitable allocation of organs in all geographic areas.

Third, invest in effective public health initiatives to reduce obesity, diabetes, and other diseases that lead to organ failure. Provide funds to increase organ donor intervention research.

At a time when confidence and trust in our government and many private institutions has declined, maintaining trust by respecting individual autonomy and family wishes is essential. Confidence in our health care system and its commitment to “first, do no harm” has never been more important.

Every day in America, individuals and families make the intensely personal gift of life through organ donation to save someone they don’t know and often never will. These are acts of extraordinary generosity and altruism. Every day countless health care professionals, coordinators, and volunteers work tirelessly under extreme time pressures to make miracles happen, and they do.

At the same time, our transplant system could perform better. Losing 7,000 people per year while they wait for an organ is unacceptable. We believe that the above recommendations, if fully implemented, could go a long way towards reducing unnecessary deaths without jeopardizing ethical principles. Strong, committed, and collaborative leadership will be needed.

Alfred M. Sadler, Jr. MD and Blair L. Sadler JD, Hastings Center Fellows, worked closely with the committee of the National Conference of Commissioners on Uniform State Laws that drafted the original Uniform Anatomical Gift Act, as commissioned officers in the U.S. Public Health Service, while serving as a medical-legal team in the director’s office of the National Institutes of Health. Dr. Sadler is a special advisor to the College of Health Sciences and Human Services at the California State University, Monterey Bay. Mr. Sadler is a senior fellow at the Institute for Healthcare Improvement and a Lecturer at the University of California, San Diego Rady School of Management.

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  1. Organ donation and extends and transforms tens of thousands of lives each year. I commend the authors on their observation that public trust is crucial and depends on finding the proper balance between respect for individual autonomy and family wishes. First person authorization, which the UAGA has emphasized, has tended to create an imbalance between the two, at times leading to serious conflict. One possible remedy would be the adoption of a more nuanced authorization/donation process. A description of such a process may be found in the article, “Make It Plain: Strengthening the Ethical Foundation of First Person Authorization,” in the Winter 2017 issue of the Journal of Clinical Ethics.

    1. We appreciate James Benedict’s comment and share his belief in the crucial importance of maintaining public trust in the donation-transplantation system.

  2. The analysis and recommendations that have been presented for improving organ donation are insightful and compelling.
    I was interested to read that presumed consent is not a primary factor influencing increased organ donations and that the results may even be questioned. This was particularly interesting for myself, a Canadian, considering our province Nova Scotia became the first to enact “deemed consent” (opt-out). Based on Spain and England’s assessment of this system, I wonder whether Nova Scotia’s decision will influence the rest of the provinces in Canada.
    Canada faces long wait lists for organ transplant and donor rates across the country vary significantly. Regardless of whether Canada decides adopts an opt-out system, I believe the recommendations your proposed remain relevant to addressing the nation’s short falls in regard to organ donation. Framing organ donation as a public health issue where prevention can play a role in improving the health of patients and increasing the availability of organs. Beginning education and awareness early, in particular, highlights the importance of this issue and can help build understanding of the organ donation process.

  3. The organ supply shortage in the United States is undoubtedly a grave problem that public health officials, policymakers, and healthcare providers need to better collaboratively address. Moreover, it is quite a peculiar issue because the statistics report that many individuals are indeed in favor of organ transplantation. And while the population of the United States was (previously) steadily growing, this should have more easily translated into increased organ supply. However, as pointed out, the gap between the number of transplants performed and people eligible is only widening. On another note, it is important to highlight that in 2021, the population of the United States has nearly flatlined with a 0.1% growth rate—the slowest rate in almost one hundred years. Therefore, it is paramount that society reassesses the current organ donation issue if fewer and fewer potential organ donors are present.

    So, if so many people are in favor of organ donation, why is there a discrepancy in the number of Americans dying on the waiting list?

    I agree that, as a society, we require improved communication and education surrounding organ donation. Unfortunately, there is currently ineffective education for the public surrounding the statistics of organ donation and the entire registration process. Before taking my bioethics master’s program, I admit I had no idea how the organ donation registration process worked. This further highlights why the discrepancy exists. The recommendations provided in this essay are very insightful for addressing the gap—encouraging organ donation discussion, collaboration and maybe even more centralization, along with addressing the problem as a public health issue. Hopefully, with implementation, we can see better success.

    I was particularly interested to understand that a presumed consent (or opt-out) legal system does not consistently result in increased organ donations. From the findings on the success of Spain’s organ donation process, perhaps United States healthcare providers can also take note of more effectively communicating with families in a trusting manner to secure organ removal.

  4. This article expressed many interesting viewpoints, and another component in improving the organ transplant system is regulating the system of an “open market” instead of the currently operating Black Market for organ transplantation. There is not a clear answer as to who; as hospitals and organ transplant procurement centers are already overburdened with pre and post op organ transplant care and allocating these precious resources to the millions of people who need them. The cons of the underground Black-Market system are already known, such as shady unregulated clinics/hospitals and the harm to the millions of vulnerable, low-income donors, who are more likely to sell their organs in order to support their families and are financially undercompensated. Additionally, there is a larger problem of lack of post op care, insurance, and resources, leading to higher complications and burdens for this population.

    As a collective society, we pay for so many other things, like surrogate motherhood/assisted reproductive technology/eggs/sperm/love/affection/and cosmetic surgery, so why is paying for organs different? People feel explicitly uncomfortable putting a price on organs and turning yet another lifesaving resource into a precious commodity that only those with the financial means can access and purchase. This calls into question distributive justice.

    The pros of an open market system, is the legal oversight and ethical market regulation of prices, doctors, payments to the donors, and post op care for the donors. Many people argue that decades of dialysis are more expensive than a person buying an organ with their money and not using tax payers’ money to fund dialysis, as hemodialysis care costs the Medicare system an average of $90,000 per patient annually in the United States, for a total of $28 billion (Department of Bioengineering and Therapeutic Sciences, 2022).

    Other proposed alternatives may or may not be less ethically problematic than regulating an “open market” for organs. This includes compensating organ donors for their precious gift by covering lodging/travel/hotel expenses/post op care/health insurance; which encourages more people to donate altruistically. In European countries that practice the opt out system (presumed consent that everyone is an organ donor unless they explicitly opt out of the system), there is a higher rate of cadaveric organ transplants, also in part to the collective belief of reciprocity and having a duty to care for one’s neighbor. In the U.S, we feel uncomfortable signing up to be organ donors. In studying behavioral psychology, this is because passively letting something happen (opt out) is easier than making an active decision (opt in) (especially if its uncomfortable, like contemplating your death, mortality, and having the mentality of being cut open to have your organs harvested).

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