Background: Death by neurologic criteria (DNC) is the complete and permanent loss of all functions of the entire brain and brainstem due to catastrophic brain injury (1,2). It is also called “brain death” although that term is not preferred. DNC is determined through systematic evaluation of specific criteria (see Fast Fact #115). Legally, patients are determined to be dead either due to DNC or irreversible cessation of cardiopulmonary function (1). Given the lack of high-quality evidence on the topic, this Fast Fact assimilates expert opinion to address the unique communication needs surrounding DNC.

Why communication about DNC is unique: DNC can be confusing to both families and clinicians which heightens the need for ongoing and meticulous communication. Those who are determined to be DNC still have a pulse, typically are warm to the touch, demonstrate chest rise and fall due to mechanical ventilation, and may make some spontaneous movements. All these phenomena can make it more difficult for families to accept that the patient has died. DNC has broad international legal recognition; however, some family members may not consider it a legitimate way of determining death. Additionally, some routine approaches to end-of-life communication such as inquiring about a patient’s goals and values are inappropriate and harmful when discussing DNC with family members because the patient has no chance of recovery. Finally, many patients who are DNC are organ donation candidates. 

Communication during the DNC evaluation: Catastrophic injury leading to DNC often occurs suddenly and unexpectedly, leaving families shocked and unprepared to discuss end-of-life issues. Therefore, it is often helpful to have a clinician who has established rapport with the family discuss the possibility of DNC (3). For a patient in whom a diagnosis of DNC is anticipated but not yet confirmed, families should be told the patient has sustained a devastating brain injury with minimal chance of meaningful recovery and survival (4) and that the next step will be a formal evaluation by a trained clinician to see if they have died by examining for any evidence of brain function. In some cases, allowing family to observe the examination may facilitate better understanding and acceptance of the diagnosis (5). Consent is not needed to conduct a DNC evaluation unless mandated by institutional policies or state laws (2,6,7). Family objection to DNC exam should prompt further discussion with the family, hospital administration, legal departments, and/or ethics consultants and be guided by the state or institutional guidelines (8). All families should be offered emotional support and spiritual care by trained clinicians (9).

Communication about body movements: Families should be counseled in advance regarding the potential for spinal reflex movements including fasciculations, facial myokymia (fine, quivering movements), myoclonus, plantar withdrawal, respiratory-like movements, head turning, leg movements mimicking periodic leg movements, and the Lazarus sign (arms raising and shoulder adduction, followed by arms lowering back to the sides) (10-13). These movements occur either due to hypoxic injury of spinal neurons or as stimulus-induced reflexes of an intact spinal cord, but they do not change the diagnosis of DNC. Without anticipatory guidance, spinal reflex movements can be confusing and distressing to family members (14). It may be helpful to provide reassurance that the examiner is trained to distinguish this type of reflexive movement from movement initiated by the brain.

Communication after a patient is determined to be DNC:  

• Upon determination of DNC, families should be plainly told the patient has died and provided with an official date and time of death (10). The term “death” instead of “brain death” or “brain dead” should be used to provide terminology consistent with cardiopulmonary death (3).
• Communication around DNC differs from many other serious illness conversations in that the focus is on the sharing of difficult news and the timing of stopping organ-support, rather than on conducting a goals of care discussion focused on a patient’s values and preferences. Thus, communication techniques should be based on the compassionate sharing of information rather than shared decision-making models (4). Language focused on substituted judgment and eliciting the patient’s perspective should be avoided.
• Clinicians should use language that reflects the patient’s deceased state. For example, avoid the term “life-support” when referring to organ-supporting measures as the patient is no longer alive. Clinicians should also refrain from telling families that the patient “…might still be able to hear you” or discussing measures to “keep the patient comfortable” during withdrawal of ventilatory support (a patient who is determined to be DNC cannot experience discomfort because they lack all brain function).
• If the patient is determined to meet criteria for DNC, discontinuation of organ supporting interventions such as mechanical ventilation and vasopressors is the appropriate next step, unless the family consents to organ donation (10). Otherwise, clinicians should explore both the family’s desire to gather briefly with the patient and the timing of cessation of organ support (10).
• Be aware of state laws providing accommodations for religious, cultural, or moral beliefs following a DNC diagnosis that allow families to object to DNC as being the sole determinant of legal death (15).

Organ procurement considerations: All discussions regarding organ donation should be deferred to the organ donation procurement organization (OPO) and follow institutional protocols regarding informing the OPO of a potential DNC case. Clinicians should discuss with OPOs the best time to approach the family, though clinicians should not be the ones to introduce the possibility of donation to families (3).

References

1.   President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Defining Death: A Report on the Medical, Legal, and Ethical Issues in the Determination of Death. U.S. Government Printing Office. 1981
2.   Greer, D.M., et al., Pediatric and Adult Brain Death/Death by Neurologic Criteria Consensus Guideline: Report of the AAN Guidelines Subcommittee, AAP, CNS, and SCCM. Neurology, 2023.
3.   Lewis, A., et al., Organ Support After Death by Neurologic Criteria in Pediatric Patients. Crit Care Med, 2017. 45(9): p. e916-e924.
4.   Kramer, N.M., S. O’Mahony, and C. Deamant, Brain Death Determination and Communication: An Innovative Approach Using Simulation and Standardized Patients. J Pain Symptom Manage, 2022. 63(6): p. e765-e772.
5.   Tawil, I., et al., Family presence during brain death evaluation: a randomized controlled trial*. Crit Care Med, 2014. 42(4): p. 934-42.
6.   Greer, D.M., et al., Determination of Brain Death/Death by Neurologic Criteria: The World Brain Death Project. JAMA, 2020. 324(11): p. 1078-1097.
7.   Lewis, A. and M.P. Kirschen, Brain Death/Death by Neurologic Criteria Determination. Continuum (Minneap Minn), 2021. 27(5): p. 1444-1464.
8.   Lewis, A. and M.P. Kirschen, Potential Threats and Impediments to the Clinical Practice of Brain Death Determination: The UDDA Revision Series. Neurology, 2023. 101(6): p. 270-279.
9.   Stahl, D. and T. Tomlinson, Death by Neurological Criteria: Caring for Families amid Tragedy. Linacre Q, 2019. 86(4): p. 394-403.
10. Kompanje, E.J., Families and brain death. Semin Neurol, 2015. 35(2): p. 169-73.
11. Ivan, L.P., Spinal reflexes in cerebral death. Neurology, 1973. 23(6): p. 650-2.
12. Saposnik, G., et al., Spontaneous and reflex movements in 107 patients with brain death. Am J Med, 2005. 118(3): p. 311-4.
13. Ropper, A.H., Unusual spontaneous movements in brain-dead patients. Neurology, 1984. 34(8): p. 1089-92.
14. Greer, D.M. and G.G. Curiale, End-of-life and brain death in acute coma and disorders of consciousness. Semin Neurol, 2013. 33(2): p. 157-66.
15. NJ Rev Stat § 26:6A-5. 1991.

Conflicts of Interest: The authors have disclosed no relevant conflicts of interest.
Author Affiliations: Mayo Clinic, Rochester, MN (CO, CC, RW); Westchester Medical Center, Valhalla, NY (ML).
Version History: originally edited by Drew A Rosielle MD; first electronically published in February 2024.