Etan Yeshua is a registered nurse in the intensive care unit of an East Coast hospital.
For decades, I have encouraged friends and family to register as organ donors. As an intensive care nurse, I’ve mourned patients who died needing a transplant, and I’ve joined “honor walks”accompanying dying patients to the operating room for their life-changing donations. When I die, I want to donate my own organs and help my family find meaning in my death. But I no longer believe that being on the donor registry is the right way to accomplish those goals.
My change of heart began years ago with a patient who suffered a catastrophic health event and was being kept barely alive by machines. (For reasons of privacy, I can’t identify the patient, even by sex, so I will use the pronoun “they.”) They could no longer consciously communicate, but they grimaced whenever they woke up and felt the tubes we had placed down their throat and in their groin, urethra, neck and wrists. Recognizing that the patient was suffering but not improving, the ICU team offered to stop our futile efforts and instead transition them to comfort care and a peaceful death. After more agonizing days, the family asked us to stop the patient’s suffering.
As required by law, we alerted the regional organ procurement organization. When its representative arrived, she informed the family that, because the patient had registered years ago while obtaining a driver’s license, the organization was authorized to begin preparations for transplant. This meant the patient had to remain on life support for more hours or days while the procurement organization identified potential recipients, assembled the donation surgical team and coordinated timing, transportation and other factors; they also would monitor the patient and request other treatments if necessary to keep the organs viable.
The distraught family explained that the patient likely registered inadvertently, that English was a second language, that donating in this way conflicted with the patient’s religious beliefs and that the patient would not have wanted to be kept nominally alive without hope of recovery while their children sobbed at the bedside. The decision to withdraw life support was hard enough, the family pleaded. They asked to be left to grieve.
But the representative said she was merely notifying them — not asking permission. She said the organization had the right to procure the patient’s organs and to continue life support in the meantime, regardless of family objection. Now understandably irate, the family reversed their decision to withdraw life support. If heroic measures were going to continue, they said, they should be used to save the patient’s life, not someone else’s. Our patient died within a day despite aggressive intervention — leaving the family traumatized, the organs unusable and our care team shattered.
This was not an isolated tragedy. The Uniform Anatomical Gift Act (UAGA), adopted in some form by all 50 states, makes conflicts such as these almost inevitable.
First, the UAGA treats donation not as a medical procedure but as a gifting of property. There is therefore no obligation at the department of motor vehicles or elsewhere to disclose the potentially important ramifications.
For example, when a non-donor’s family decides to withdraw life support, we can immediately focus on the patient’s comfort, in their hospital room, surrounded by loved ones, with extended time for visitation. But for a donor, that process is often delayed for hours or days while the procurement organization manages administrative requirements and prepares a separate surgical team for the donation. In some cases, if a heart stops before the donation team is ready, organ-preserving CPR may be performed, risking broken bones and internal bleeding. Ultimately, a donor dies in or near an operating room after the ventilator is turned off, and the family is escorted away just minutes after death.
For some donors, the moral good of donation outweighs these changes in how they die and how their body is treated after death. Others may weigh the costs and benefits differently. But these factors are not disclosed at the DMV — where more than 90 percentof organ donors register — because the law treats them as irrelevant. And by the time patients are intubated, dying and medicated, they very rarely are conscious or coherent enough to reconsider their options.
Second, the UAGA turns these possibly uninformed decisions into legally binding commitments. Once that box is checked on the driver’s license form, there is little a donor’s family can do to clarify what they believe are their loved one’s true wishes and regain control over the final days and hours. The authors of the law were explicit about this goal: They wrote that the law “intentionally disempowers families” and “strips surviving family members of at least one stick in a bundle of property rights they might otherwise have.”
Perhaps it is appropriate to disempower a grieving family and uphold a patient’s decision to donate if we are confident we know the patient’s wishes; but a lone checkbox among many others in a DMV form hardly clarifies those wishes — how they wanted their life to end and their loved ones to experience their death. I’ve seen too many families have fury added to their grief when put in this position.
If our organ donation system genuinely intends for donors to be “protected, honored and respected,” states should revise their anatomical gift acts so that only fully informed decisions are binding. They could, for example, require DMVs and other points of registry to provide specific information about cardiovascular versus brain death and the implications for end-of-life care. They could also authorize a patient’s surrogate decision-maker to have final say when clear evidence of an informed choice is lacking.
Until then, there is another way to navigate this unforgiving system.
When these cases arise, care teams can be caught in an impossible limbo between the family’s request to withdraw life support and the organ procurement organization’s request to extend it. The UAGA is firm: So long as a prospective donor’s organs may be viable, “measures necessary to ensure the medical suitability of an organ for transplantation . . . may not be withheld or withdrawn.” However, in annotations to the law, the authors note that “a prospective donor could expressly provide otherwise in . . . [an] advance health-care directive.”
I have taken their advice.
I removed my name from the donor registry, told my husband that I generally wish to donate and revised my advance directive (often called a living will, which describes one’s medical treatment preferences) to correct the power imbalance codified in the law: “I hereby revoke from any OPO (organ procurement organization) the authority to require organ procurement or extend my time on life support. I give my husband the authority to decide whether to make a gift of my organs and under what circumstances.”
I don’t know what my dying days will look like. When the time comes, I trust my family and care team to shape the last hours of my life and, hopefully, add years to someone else’s.
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