Organ Donation Practices Are Being Ethically Scrutinized: Communication Is a Key Concern

By Stacey Kusterbeck

Ethical controversy surrounds widely reported cases in which hospitals and organ procurement organizations (OPOs) proceeded with preparation for organ removal despite patients showing signs of life.^1-3 “While many details about these cases remain to be known, clinicians and ethicists should familiarize themselves with the cases and the issues they raise,” says Matthew DeCamp, MD, PhD, director of the research ethics program at the Colorado Clinical and Translational Sciences Institute and associate professor in the Center for Bioethics and Humanities at University of Colorado Anschutz Medical Campus.

Additionally, the Department of Health and Human Services (HHS) is calling for an initiative to reform the organ transplant system after a recent report on 351 ethically problematic cases where organ donation was authorized but not completed.⁴

“It’s important to remember that the ethics norms around organ donation remain unchanged. Ethicists have key roles to play in upholding these norms in clinical practice,” says DeCamp. For example, clinicians still are ethically obligated to separate care decisions from donation decisions, and to ensure that conversations primarily seek to promote patient and family values, not necessarily to promote donation. “A concern exists that recent changes to organ donation performance metrics place more pressure on OPOs to increase donation rates. However, this is controversial and disputed — and rising pressures on OPOs make upholding ethics norms more important, not less,” says DeCamp.

Ethicists might get involved in an individual case if there is any type of disagreement about donation (between the family and the clinical team, for instance). At an organizationwide level, ethicists can help to address issues involving organ donation at their institutions. “This might be related to policies and procedures for how and when families can be approached about donation, and what information is shared,” suggests DeCamp.

Some ethicists are getting consult requests because of poorly timed communication with the family. In one such case, the patient’s family already had made the difficult decision to transition the patient to hospice care. The family came in the following day to withdraw life-sustaining treatment. “However, they were unaware that an organ procurement agency was greeting them that morning,” says Ariel Clatty, PhD, director of medical ethics at UPMC Presbyterian Shadyside & Western Psychiatric Hospitals. Staff from the OPO informed the family that the patient was an organ donor, then informed the clinical team that they could not withdraw care as planned. The family had come in prepared to say goodbye to their loved one — and instead learned that the patient would be prepped for surgery. After lengthy discussions, the family, the organ procurement agency, and the medical ethics team agreed to move forward with surgery within 24 hours to retrieve the patient’s organs. This aligned with the patient’s stated wishes of wanting to donate, as well as not wanting to be on long-term ventilation for a prolonged period of time. “Unfortunately, the patient began to decompensate,” says Clatty. As a result, the family had to make another difficult decision — this time, not to move forward with further life-sustaining procedures and treatment to sustain organ donation.

This difficult case illustrates the need to optimize the timing and coordination of communication between the OPO, the clinical team, and the family. “We should not diminish the gift that organ donation is to another life. But families should feel that they are working together with teams and not having to advocate for a person who cannot advocate for themselves,” says Clatty.

People often make decisions — such as checking boxes on driver’s licenses or advance directives — without understanding the clinical implications. “There remains a veil of misinformation around organ donation in the community. Families may decline donation due to fear or misconceptions like ‘They won’t give me proper care; they just want my organs.’ To change this, we need transparent, thoughtful communication and consent processes that help patients and families feel truly cared for at the end of life,” says Clatty.

The growing ethical controversy surrounding normothermic regional perfusion (NRP) raises more ethical concerns involving organ donation. Since several institutions and OPOs already have begun implementing NRP, a group of pediatric ethicists created guidelines for its ethical implementation.⁵ “Our goal was not to resolve the broader question of whether the procedure is ethically permissible. Instead, we aimed to provide guidance to institutions and OPOs that have chosen to proceed, outlining how to implement the practice in the most ethically responsible way possible,” says Alex Gariti, MBE, HEC-C, senior program manager of clinical ethics at Texas Children’s Hospital.

The authors recommend using a checklist to ensure that all potential donor patients and families are fully informed and treated respectfully. “It is important for clinicians to recognize that this procedure is ethically controversial, and that reasonable people may hold different perspectives on whether it is ethically or legally permissible to implement. For this reason, clinicians and institutions should ensure that families are informed about the morally salient features of the procedure, so they can make a decision about donation that aligns with their own values and beliefs,” says Gariti.

The authors recommend collaboration between clinical ethicists, OPOs, transplant programs, and hospital leaders. In this way, ethicists can help their institution to develop ethically sound policies before NRP is implemented. Ethicists also have an important role in providing education about the ethics of NRP. “Many stakeholders — including those in leadership positions — may be unaware of the procedure and the ethical controversies surrounding it,” observes Gariti.

Clear guidelines for ethical organ donation practices are an important step, but they can do only so much. Ultimately, it is up to clinicians and hospitals to make the appropriate practice change. “It is important that institutions and providers are aware of these controversies, take them seriously, and implement ethical practices. If institutions don’t self-regulate, the government may be forced to step in,” warns Gariti.

Ethics consultation can be valuable in the following situations, says Gariti:

• If families say they do not have enough information or need help weighing options. In these cases, a member of the medical team would detect that inadequate information was provided to the family and raise the concern to clinical ethicists.
• If family members express uncertainty about what is right, what the patient may have wanted, or if the family is feeling rushed to make a decision. Often, the medical team may be reluctant to engage the family in discussion regarding organ donation because of the line separating clinical care and organ donation. “Clinical ethics can be a neutral party to discuss concerns OPO representatives may not be able to work through with families,” says Gariti.
• When disagreements arise (either between the family and the medical team, or among family members) about whether to proceed. Clinical ethics can facilitate a dialogue among stakeholders to discuss perspectives and attempt to arrive at a mutually acceptable agreement — or at least make sure everyone’s perspectives are heard. “Ultimately, the goal is to do what is right for the prospective donor. When disagreement arises, that’s usually a good indication that we need to talk things out a little,” says Gariti.

At Mercer University School of Medicine and the Georgia Baptist College of Nursing at Mercer University, faculty recently developed an ethics education initiative to increase knowledge with the organ donation process, including how to communicate compassionately with families of organ donors.⁶ “Family resistance to organ donation is sometimes misunderstood by clinicians. While our preclinical students receive basic training on this topic, this practice session gave them the opportunity to experience the emotions surrounding it and then work to resolve the value conflict as a team,” says Caroline Anglim, PhD, HEC-C, assistant professor of bioethics and professionalism at Mercer University School of Medicine.

Before clinicians can communicate with families about the organ donation process, they often need to communicate about death by neurological criteria. “This is frequently misunderstood by patients’ families and can lead to value conflicts,” says Anglim. Anglim and colleagues designed the educational program to give students the chance to practice navigating strong emotional reactions and existential questions from family members before they got to the organ donation questions.

“We asked affiliated nursing faculty and staff to serve as the parent of the patient in the case. We provided comprehensive case information and training to them in advance of the simulations,” says Anglim. The “parents” were encouraged to ask students a range of questions, such as, ‘Is he in pain? Can he hear me? Can we proceed with an open casket funeral?’ They also asked more value-oriented and existential questions like, ‘How will I know what to do? Why would he do this? Why is this happening to my family?’”

Students are trained to direct family members of potential organ donors to an OPO representative any time they are asked about the organ donation process. However, part of the educational initiative included students responding to family members’ emotional reaction to organ donation. This usually prompted students to acknowledge the family member’s frustration or confusion and, in some cases, to answer basic questions about the organ retrieval process. “We wanted the students to practice being emotionally responsive to their patients and families, while also identifying the appropriate experts,” says Anglim.

Faculty had to walk a fine line between helping students learn to manage the emotional weight of the scenario while also learning how to interact appropriately with the OPO in an organ donation case. “To do this, we embedded a protocol violation — a mistake — in the case,” says Anglim. A clinician mentioned to the parent (prior to the family meeting) that the patient had been a registered organ donor. This opened the opportunity during the family meeting for the parent to ask questions about the organ donation process. Thus, students were expected to respond to questions such as, “The doctor told me he’s marked as an organ donor. Is that true? His heart is still beating, right? Surely you cannot take his organs until his heart stops beating. Are those license declarations legally binding?”

Students had to respond to the emotions behind these questions and statements. It was necessary to clarify basic aspects of the organ donation process while clearly directing the parent to bring up these questions with the OPO representative. “If the student did that appropriately, the actor was instructed to move along with the simulation,” says Anglim.

Students often anticipated that their conversations would be more straightforward than they turned out to be. Many students found themselves struggling to maintain their composure and to be consistent in their language and tone through the conversations. “We believe this educational approach gives students an opportunity to build listening skills, emotional responsiveness, and sensitivity to the interrelatedness of grief, shock, and distrust,” says Anglim.

Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.

References

1. Stein R. ‘Horrifying’ mistake to take organs from a living person was averted, witnesses say. NPR Morning Edition. Published Oct. 17, 2024. https://www.npr.org/sections/shots-health-news/2024/10/16/nx-s1-5113976/organ-transplantion-mistake-brain-dead-surgery-still-alive

2. Rosenthal BM, Tate J. A push for more organ transplants is putting donors at risk. The New York Times. Updated Aug. 28, 2025. https://www.nytimes.com/2025/07/20/us/organ-transplants-donors-alive.html

3. Winfield Cunningham P. House panel examines organ retrieval missteps ‘fit for a horror movie.’ The Washington Post. Updated July 22, 2025. https://www.washingtonpost.com/health/2025/07/21/organ-retrieval-reforms-ordered-after-some-donors-showed-signs-life/

4. U.S. Department of Health and Human Services. HHS finds systemic disregard for sanctity of life in organ transplant system. Published July 21, 2025. https://www.hhs.gov/press-room/hrsa-to-reform-organ-transplant-system.html

5. Gariti A, Berkman E, Clark J, et al. Normothermic regional perfusion in pediatric organ recovery — guidelines for its ethical implementation. Pediatr Transplant. 2025;29(5):e70101.

6. Anglim CE, Bartlett JL, Mosher MM, et al. Interprofessional ethics education through a simulation focused on collective moral distress. J Interprof Care. 2025;39(5):900-903.