By Stacey Kusterbeck
Even after families are told brain death is permanent and the patient is without hope for recovery, some distrust this information. “There are news stories and social media videos and posts that talk about people who were ‘brain dead’ who wake up, or that doctors are pushing people toward brain death to obtain organs for transplant,” says Daniel H. Kim, MD, a hospice and palliative care medicine fellow and a pediatric intensivist and clinical ethicist at Seattle Children’s Hospital and University of Washington.
Kim has seen these issues involving brain death come up during ethics consults:
- whether to respect a family’s request to provide continued ventilator support after death has been declared;
- whether to continue other life-sustaining supports (such as hemodialysis, artificial nutrition and hydration, antibiotics, or cardiopulmonary resuscitation);
- how to respond to family requests for tracheostomies and feeding tubes;
- concerns about resource use, when a lack of available intensive care unit (ICU) beds are delaying care for other patients;
- questions about how to resolve disagreements among family members regarding brain death and testing;
- questions about how to proceed if the family wants to transfer the patient to another center in cases where state law allows rejection of brain death on religious and moral grounds.
“One important way ethicists can support clinicians in these cases is to help clarify the nature of the dispute with families,” says Abram Brummett, PhD, HEC-C. Brummett is a clinical ethicist at Corewell Health East William Beaumont University Hospital and an assistant professor at Oakland University William Beaumont School of Medicine.
Conflicts involving brain death sometimes are resolved with a little more time, and consistent messaging from the medical team that the patient has died. “This is the case when the family is motivated by grief and shock, or by disagreement with clinical facts,” says Brummett.
Some families deny the patient actually is deceased, because they claim the patient has been responding to commands. “Here, the ethicist can advise the clinical team that more education is the best way forward,” says Brummett.
Inviting the family to be present during the brain death examinations is one important way to achieve better understanding. “It’s important for clinicians to avoid actively disputing whether the family observed movement and, instead, focus on distinguishing purposeful from non-purposeful movement,” advises Brummett. Physicians can explain what signs the patient should exhibit if they have preserved brain function and then demonstrate the absence of those signs.
Some families object to a declaration of brain death for religious or philosophical reasons. No amount of extra time or education could likely resolve these sorts of objections, since there is a genuine philosophical dispute over the definition of death, says Brummett.
In some cases of intractable disagreement, the medical team, with the support of administration, discontinued the ventilator after a period of accommodation. In the rare cases that went to court, a judge ruled against the hospital disconnecting the ventilator. The medical team must ensure the patient is stable for transfer before discharging the patient to an outside facility. “Most of these patients then experience cardiopulmonary arrest within one year of discharge. But some can go on to persist in a state of brain death for years,” says Brummett.
Ethicists must be prepared to address any of these conflicts in brain death cases. “After a declaration of brain death, ethicists may have to manage how to accommodate an increasingly skeptical public,” says Adam Omelianchuk, PhD, a Houston, TX-based clinical ethicist.
“My personal experience is that it is very rare for a loved one to accept the irreversibility of the brain dead state and yet continue to insist on preserving the rest of the body’s functions. Rather, loved ones continue to hold out hope for recovery or a miracle,” says Omelianchuk.
Some religious groups do not believe that death can be determined when the body is capable of maintaining a heartbeat. In general, people typically associate death with a lack of breathing, lack of pulse, and lack of responsiveness. “Brain dead” patients retain a pulse and are warm to the touch. “They look no different before and after the exam, but are considered dead after the exam. Communicating why can be challenging,” says Omelianchuk.
Ideally, this conversation happens before a death declaration. “Doing this after one occurs is much more difficult,” says Omelianchuk. “The team should avail themselves of every possible resource available to support communication.” Ethicists, spiritual care, and social workers can facilitate discussions. Intensivists or neurologists may be willing to offer a second opinion.
If a family rejects that brain death is death, ethicists can consider approaching the case in terms of a more general end-of-life decision. In other words, the conflict over whether the patient is deceased could be avoided by focusing on what would be best for the patient given the devastating clinical condition. “Just because a loved one does not accept neurological criteria for death does not mean they are committed to preserving the body at all costs,” says Omelianchuk. The clinical team does not necessarily need to insist on doing a brain death exam in these cases, says Omelianchuk. Rather, clinicians can recommend transitioning to comfort measures, on the basis that further treatment will not benefit the patient. Ethicists also can encourage families to use the principle of “substituted judgment” (what the patient would say about what to do). “All of that can be a shared decision,” says Omelianchuk.
Cases involving conflict over brain death bring up a longstanding question: Should a conscience clause, allowing patients and families to opt out of brain death determination, be added to the Uniform Determination of Death Act?1,2 Brummett and colleagues wanted to learn more about what the general public thought about this ethical controversy. The researchers surveyed 1,386 participants in 49 states.3 Study participants watched a short education video on the basic facts of brain death, answered a five-item questionnaire to assess understanding of brain death, and answered questions on a hypothetical scenario of a family requesting continued medical support for a patient with brain death. More than 40% of participants said that hospitals should be required to provide treatment for someone with brain death, if the family rejects brain death as death.
“Clinicians may need to be prepared to have a discussion about continued treatment after brain death more frequently than what was previously thought,” concludes Nick Ludka, the study’s lead author and a medical student at Oakland University William Beaumont School of Medicine.
About one-fourth (24.4%) of participants said they would request further treatment for themselves after a determination of brain death and 27.3% said they would do so for a family member.
“One important limitation of the study is that participants watched a video and responded to a short vignette. That is very different than being in an ICU and seeing the reality of what brain death actually looks like,” says Ludka.
Researchers also did not ask participants why they would want further treatment for themselves. Some may have based their responses on a misunderstanding of brain death — for example, some might have thought that brain death was reversible. “Our educational video helps inform the public about some basic aspects of brain death, but it doesn’t replace lengthier discussions in the ICU,” acknowledges Ludka.
Ethicists can assist in these ways when families want to delay or decline brain death testing:
Encourage clinicians to allow the family some additional time. “The more the medical team pushes their agenda on the family, the more a family may dig in their heels,” says Kim. A family’s distrust may increase if they perceive that the medical team has already “given up.” Allowing more time for the decision offers the opportunity to build rapport and, hopefully, reach alignment on how to proceed.
Acknowledge the competing ethical obligations involved in the case. “As providers, we need to follow the law and perform our duty by declaring death when clinically appropriate,” says Kim. At the same time, clinicians also need to compassionately support the family through the horribly traumatic situation that led to their loved one being in a state where brain death testing is on the table.
“As ethicists, we can acknowledge it is hard for all involved, and that there are no easy solutions for many of these ethical questions. In supporting the medical teams and family, our goal is to avoid intractable conflict with no end in sight,” says Kim.
Consider the well-being of clinicians who struggle to care for patients who are in these devastating situations. Bedside staff may report moral distress as the result of providing care for patients who already are declared deceased. If feasible, hospital policies can mandate rotating staff members so that it is not just a few people who are being tasked to care for these patients and families. “Or consider identifying staff members who have the capacity to care for patients and families in these situations, and rotating care amongst a small group,” suggests Kim.
Help to develop or update hospital policies on brain death. “This supports the medical team in eventually discontinuing somatic support for patients who are ethically and legally dead,” says Brummett. Policies can explicitly state prerequisites and requirements for brain death testing, documentation, and qualifications of those who can perform clinical testing and the apnea test in line with accepted medical standards. “This is important to uphold the integrity, consistency, and trust in the brain death testing process, and provide guidance for medical teams who may not be as familiar with the process,” says Kim.
Hospital policies also can reference relevant state laws and guideline recommendations for what constitutes “reasonable accommodations” if families decline brain death testing or decline removal of the ventilator after death has been declared. “The terms of reasonable accommodation are not explicit, but some accommodation may be required by law depending on the state,” notes Kim. Hospital policies can offer general guidance on timelines based on available staffing, beds, and other resources while also acknowledging that any timeline is arbitrary, and will not meet the needs of all families.
Describe best practices for communicating with families to avoid sending mixed messages. Ethicists can explain to clinicians that after death is declared, they are obligated to speak consistently with that declaration. For example, clinicians will refer to the patient as “deceased,” and refer to the remaining supportive measures as “organ support” rather than “life support.” “This communicates that no more medical decisions are to be made, and that no additional treatments are indicated,” says Omelianchuk.
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. Nguyen D. Does the Uniform Determination of Death Act need to be revised? Linacre Q. 2020;87(3):317-333.
2. Lazaridis C. Brain death: Controversies and reappraisals. Clin Liver Dis (Hoboken). 2024;23(1):e0168.
3. Ludka N, Hurse D, Brummett A. An investigation into the public’s attitude toward opting out of brain death. Neurocrit Care. 2025; Jan 14. doi: 10.1007/s12028-024-02196-8. [Online ahead of print].
Even after families are told brain death is permanent and the patient is without hope for recovery, some distrust this information.
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