Organ donation is a complicated medical and legal topic, and some are calling for more transparency and regulation. Learning about the process can help you know how to communicate your wishes ahead of time.
We don’t typically think of organ donation as a controversial topic. When I applied for my first driver’s license I checked the “organ donor” box without a thought, because why wouldn’t I want to be a donor? After all, if I’m going to die anyway, I want my organs to be used to save other people’s lives.
And it’s not only donated organs that save lives. A single person who has died and donates their organs and tissues can save up to eight lives and help as many as 75 people in need of tissue transplants.
The organ shortage, however, is severe.
In 2024, there were almost six times as many Americans waiting for organ transplants as there were deceased organ donors.
➡️ How does the organ donation process work in the U.S.?
Let’s start by going over how the organ donation process in the U.S. works. But keep in mind, laws vary slightly by state.
✅ Opt-in system: Donation in the U.S. is voluntary under the Uniform Anatomical Gift Act. You can make your wishes known by adding your name to a state or national registry, or your “next-of-kin” can give permission after death. Either way, it is your choice, and no one should be pressured.
✅ State and national registries: Adding your name can help ensure your organs and tissues are donated. This generally prevents your family members from overriding your wish to donate. Ask your local health system or clinician’s office for more information.
✅ Living wills and advance directives: These legal documents can make wishes known about many end-of-life issues, including organ donation. They can also help ensure your wishes are followed. They don’t require having a lawyer, though in more complex cases consulting one may be advised. You can find free resources, including free document templates, and connect with organizations that may be able to assist at CaringInfo.
✅ After death: A team connected with the Organ Procurement and Transplantation Network (OPTN) coordinates the process. The procedure to remove the organs can only take place once the donor has been declared legally dead, but it is important to keep the donor alive on life support until moments before the procedure takes place to preserve organ function. Federal law requires that the team responsible for caring for the deceased is separate from the independent organ procurement organization (OPO) that oversees the surgical team removing the organ(s).
➡️ What concerns have been raised?
There have been some recent reports about a lack of transparency at OPTN.
Federal investigations by the Health Resources and Services Administration (HRSA) in cooperation with the OPTN are ongoing. The OPTN review said problems described in two recent NYT articles [which can be found here and here] were rare and only required small fixes. However, the HRSA report found troubling patterns and included a list of corrective actions that the OPTN must take to avoid further action by the federal government.
The goals of identifying flaws and proposing corrective actions are to make processes better, safer, and more transparent.
The unintended consequences of these investigations have been sowing and increasing mistrust. Because mistrust already contributes to lower organ donation in historically marginalized groups, these new reports could make donation rates drop even further.
The Association for Organ Procurement Organizations is raising alarm. As a result of these articles circulating online, thousands have removed their names from state and national organ donor registries.
While investigations are still ongoing, it is important to remember that you can take steps to ensure that your end-of-life wishes are respected.
➡️ To help ensure your end-of-life wishes are respected, consider the following steps:
✅ Identify your next of kin (as defined by your state). If you don’t have a next of kin, then it is essential that you consult the laws in your state to determine the best way to ensure your wishes are respected.
✅ Ask your local hospital, clinician, or health department for help with finding or filling out Power of Attorney for Health Care and Living Will forms.
✅ Have conversations with your family, loved ones, and those most likely to make decisions for you. Share your wishes about organ and tissue donation and about how you would like them to advocate for you in a medical emergency.
✅ It’s a good idea to share physical or digital copies of your end-of-life documents. File the necessary paperwork to ensure your wishes are respected. Make sure to share them with your healthcare team and people who will make medical decisions for you in an emergency.
Subjects like organ donation and end-of-life planning are uncomfortable, but making decisions ahead of time can save your loved ones the confusion and anguish of making those decisions on your behalf.
Stay safe. Stay well.
Further reading:
How the Organ Donation & Transplantation Process Works
Challenges of Organ Shortage for Transplantation: Solutions and Opportunities – PMC
The Long Haul: Engineering High-Tech Solutions to the Organ Shortage — Harvard ALI Social Impact Review
Saving Organs, Saving Lives: Potential Solutions to the Organ Transplant Problem > News > Yale Medicine
Preparing a Living Will | National Institute on Aging
Advance Care Planning: Advance Directives for Health Care | National Institute on Aging
