J is a 16-year-old girl with a history of depression and ADHD who presents with coma. J was diagnosed with depression when she was 13 and had never attempted suicide before. Her parents are divorced and barely on speaking terms. She was at her mother’s place, talked to her father on the phone, who sent her grandparents to get her from her mother’s place. J had gotten into an argument with her mother about playing a video game. She was then found hung with a taekwondo belt around her neck tied to the bedpost. CPR was initiated by the mother. EMS found her to be in PEA arrest. She was given epinephrine. Circulation returned, but she was thereafter non-responsive. She was intubated and transferred to the ICU for care.

Over the next two days, she does not respond to painful stimuli or voice; does not grimace to pain; has no gag reflex; has no limb movements to pain; pupils are fixed and dilated; no spontaneous respirations; no volitional activity.

After she lost all brainstem reflexes, an apnea test was performed. It was positive and confirmed the absence of a respiratory drive when the patient is allowed to accumulate CO2 when not providing artificial ventilation.

The patient’s physicians in the ICU, palliative care, and neurology teams have been preparing the mother and father and their families for this possibility.

J’s family members, like most in this situation, feel like they’re in the midst of a terrible nightmare.  How could J be playing board games with her brother three days ago and be dead now? Her mother is in despair, thinking their argument prompted this tragedy. Her brother is taciturn and has not slept since J was admitted.  He is angry, afraid, and misses his sister.  J’s father vacillates between grieving and blaming her mother.  All of them keep hoping and praying for her recovery.

Two days after admission, the neurologist explains that J has died and asks if they would like to have time with her before the ventilator is removed. J’s dad replies, “She’s warm. Her heart is beating. She’s breathing. She’s not dead. There must be more tests you can do. She’s in there somewhere. As long as she’s breathing, her soul has not left her body.” And J’s Mom asks for a second opinion. She insists, “we need more time. This can’t be happening. I won’t give up on her.”

While some religious traditions do not recognize brain death, J’s family simply genuinely believes she is not dead.  In their view, withdrawing the ventilator would cause her death, so when the time comes to extubate, they throw themselves over J’s body and say they will not let anyone ‘stop any of the machines’. 

J’s medical team feels compassion for her family and wants to give them time, but also does not want to confuse the family by acting as though J is still alive.  A colleague provides a second opinion and confirms brain death.  J’s family requests another opinion and further tests. The medical team does not think it would be right to order tests for a dead person.

*Pulseless electrical activity or PEA refers to a clinical diagnosis of cardiac arrest in which a heart rhythm is observed on the electrocardiogram that should be producing a pulse, but is not.

In most circumstances, this tragic case would have ended there, but Marlise was 14 weeks pregnant and lived in Fort Worth, Texas. Texas law states that a “person may not withhold cardiopulmonary resuscitation or certain other life-sustaining treatment designated . . . under this subchapter (the Texas advance directive law) . . . from a person known . . . to be pregnant.”1 The hospital caring for Ms. Muñoz interpreted this exception as compelling them to provide continued support and declined the family’s request to end such interventions. The attorney representing the hospital indicated that the law was meant to “protect the unborn child against the wishes of a decision maker who would terminate the child’s life along with the mother’s.” After weeks of discussion and media attention with the hospital remaining intransigent, Mr. Muñoz sued in state court to have his wife’s and family’s wishes respected.”

From: Ecker, J. Death in Pregnancy—An American Tragedy, NEJM, 2014, http://www.nejm.org/doi/full/10.1056/NEJMp1400969#t=article.