Permission to Die? The Conflict of Consent in Brain Death Testing

Permission to Die? The Conflict of Consent in Brain Death Testing
Karrah St. Laurent-Ariot, George Clement, Bailey Brislin, Paul Zimmerman, Laura Hanson
Journal of Pain and Symptom Management, May 2025
Outcomes

1. Understand the ethics and laws regarding brain death testing.
2. Understand processes of brain death testing in ventilated patients and how these interact with patient and family values.

Key Message
Brain death testing can be inconsistent with patient’s cultural beliefs. While consent is not required to evaluate for brain death, apnea testing for a ventilated patient is an involved process which can be traumatic for families. Moral distress can be reduced by using thorough communication early on to establish a care plan that incorporated her spiritual and cultural beliefs.
Abstract
While there is ongoing debate about the need for consent for brain death testing, American Academy of Neurology guidelines state there is “no obligation to obtain consent”. However, familial objection to brain death testing can present care teams with unique challenges.
Case
An 18-year-old woman was found unresponsive after going to sleep with a severe headache. Evaluation at a local hospital showed respiratory arrest triggering intubation, GCS 3, unresponsive pupils, and hypothermia; CT head demonstrated a large intracranial hemorrhage and evidence of brain herniation. She was transferred to a tertiary medical center where brain death testing was recommended once hypothermia resolved. Her father was initially amenable, but after consultation with faith leaders, declined apnea testing, the remaining step to diagnose brain death. Her hospitalization was complicated by substantial barriers to trust and communication. Her family recounted inconsistent information and policies, over-adherence to algorithms, and shades of historical manipulation of minorities. They employed video surveillance and threats of litigation and requested transfer to New Jersey where brain death criteria are not endorsed. Ultimately, the patient received tracheostomy and PEG and was discharged to a long-term acute care hospital.
Discussion
Apnea testing for a ventilated patient can be traumatic for families. Both the family and the medical team experienced immense moral distress which may have been ameliorated by early and thorough communication to establish a care plan that incorporated her spiritual and cultural beliefs. Only one state in the U.S, New Jersey, allows for religious exemptions to Death by Neurologic Criteria under its Declaration of Death Act. It is often helpful to let family witness serial neurological exams to better understand the condition of their loved ones. Lastly, incorporating palliative care and chaplaincy services can decrease moral distress of both families and medical teams.

Editor’s note: We note the reference to the American Academy of Neurology guidelines and it’s apparent treatment of consent, which we will be examining further within our Center for Informed Consent Integrity.