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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