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The U.S. organ transplant system makes a controversial change to a longstanding rule designed to protect potential donors. The revision aims to increase donations and reduce errors. But critics fear the move could endanger patient care.
As part of the change, the Organ Procurement and Transplantation Network, which manages the transplant system, will relax the strict silos between doctors and nurses trying to save hospital patients and the transplant team ready to procure patients’ organs.
Previously, no member of this team was supposed to speak to family members until they had made the heartbreaking decision to let a loved one go. The rule was intended to avoid pressures that could change the care patients receive. It was also put in place to dispel any doubt that doctors are not doing everything they can to save patients.
But the transplant system’s board of directors voted Aug. 20 to change that rule as part of a new set of guidelines governing donation after circulatory death. This occurs after life-sustaining care stops and now accounts for about half of organ donations.
The new rules, which take effect Nov. 18, “permit discussions about organ donation after end-of-life discussions have occurred with the deceased potential donor’s agent,” according to the new policy.
Why does the firewall prevent these conversations before?
“I think the best way to think about it is that insisting on a bright line without focusing on what’s happening on either side of that line is a false sense of security,” Dr. Raymond Lynch, director of transplantation at the Health Resources & Services Administration, the federal agency that oversees the organ network, told NPR in an interview.
The new rules aim to avoid worrying errors that occurred in the past. These errors include transporting patients to operating rooms to harvest their organs while they were still alive.
“This specific line of policy is part of a series of improvements in coordination and communication between organ procurement organizations and the health care team that cares for these patients in hospitals and the patients’ families themselves. And it’s really a marked improvement over the policy that was in place previously,” Lynch said.
A balance between security and speed
In addition to allowing donation teams to approach families sooner, the new policies make it easier to suspend organ harvesting if someone fears something is wrong and standardize other protections for patients, including testing to determine death.
“Documentation, clear coordination, respect for the primary care team and consequences: these are what keep patients safe,” says Lynch.
The policy change also aims to ensure that the organ procurement team does not arrive too late to perform the testing and preparation necessary for families to honor their loved one’s desire to become a donor.
When this happens, “the family loses the memory” of helping their loved one donate their organs, “the patient loses the choice they made, and people on the waiting list lose the chance to receive an organ that could save their life,” Lynch says.
More than 109,000 Americans are waiting for an organ transplant, according to the Health Resources & Services Administration. About 12 people die every day due to a chronic organ shortage.
Does the change cross an ethical line?
Critics, however, say the change is dangerous. This could subtly pressure families and caregivers to stop care and create confusion about who is in the intensive care unit trying to save their loved one and who is there to obtain their organs, potentially increasing distrust of the organ donation system.
“It’s a very important bright line,” says Dr. Lainie Ross, a bioethicist at the University of Rochester. “Our primary responsibility is the well-being and care of the patient. And we need a bright line. That’s where our focus is, and we’re not even going to begin to think about whether these organs are usable until death is inevitable and imminent.”
She adds, “When a family member is in that hospital bed, I want to know that we’re all part of Team Mom and that we’re not worried. The reason the doctor is actually suggesting that the treatments aren’t working is because they want your organs for someone else.”
Ross says she is “horrified that families will feel pressured. They will feel manipulated.”
Others also see problems with the change.
“I don’t disagree with the desire for more transplantable organs. I think transplants provide great benefits to a very large number of people,” says Dr. Claire Morgan, a transplant surgeon who serves on the Transplant Network’s Patient Affairs Committee. “But people can be pressured to make that decision too quickly. I don’t want to interfere with a family’s grieving process, and I don’t want to interfere with a family’s ability to make a decision for their member at a time when it’s right for them.”
Some critics say the change is the latest worrying development for organ donors.
“This is one of a number of things that are happening in the field of organ donation that are blurring the lines,” says Lois Shepherd, a professor of law and bioethics at the University of Virginia, who opposed the change as a member of the task force that developed the new guidelines. “Many safeguards for patients are weakening. And that concerns me.”
But the change was approved by the Association of Organ Procurement Organizations (AOPO), a trade group.
“Families/agents considering (withdrawal of life support) should be informed about donation and how the donor evaluation process may affect the timing of (withdrawal of life support),” the group said in its public comments. “Many families have expressed frustration at learning of this time impact after having anticipated that other family members would be present when life support is removed. It is too late to wait until the family has made the decision.”
AOPO declined to make anyone available for an interview with NPR. But AOPO President Allison Erickson said in a written statement: “The donation depends on public trust, and it is our responsibility to respect and maintain it. Whenever there is confusion or concern, (organ procurement organizations) clarify and improve the process.
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