By Marilyn Stewart
NEW ORLEANS—Having a loved one experience a medical crisis is difficult enough, but when the doctor invokes the phrase “brain dead,” heartache can rise to new dimensions.
Steve Lemke, bioethicist and provost of New Orleans Baptist Theological Seminary, joined panelists at Loyola University New Orleans March 19 for a panel discussion titled “Who Lives? Who Dies? Who Decides?” that focused on end-of-life cases that have sparked national debate. Cases included that of Jahi McMath, a 13-year-old girl placed on a ventilator following complications from tonsil and nasal surgery, and Marlise Munoz, a young mother declared brain-dead but kept on life support for two months for the sake of her 14-week-old fetus.
The Center for Medical Ethics of the Louisiana Right to Life Federation sponsored the event. Other panelists were Jennifer Popik, J.D., with National Right to Life; Jeff White, M. D., cardiologist and hospital system ethics director; and the Rev. Kevin Wildes, S.J., president of Loyola University.
Popik said brain death cases “terrify people” and that clarification is needed. She cited a study by the American Academy of Neurology that indicated, while the protocol for declaring brain death varies widely from state to state and hospital to hospital, an average to large sized hospital determines brain death as many as 50 times a year.
“[Cases like these] may push hospitals to develop a criteria,” Popik said.
Defining brain death
Jahi McMath was declared brain-dead on Dec. 12, 2013, after three neurologists confirmed she was unable to breathe on her own, had no blood flow to her brain, and showed no sign of electrical activity in the brain.
When the family refused to remove the ventilator, a legal agreement was eventually forced requiring that a death certificate be issued by the Alameda County, Calif., coroner’s office before the patient was moved to the undisclosed facility where life support continues.
White said families sometimes have trouble accepting a doctor’s verdict because a patient on life support has a heartbeat, breathes and feels warm to the touch.
Wilde added that the issue is compounded in today’s society because death is often not discussed and families rarely witness a loved one leading up to death, as in the past.
Lemke agreed, saying that in the past, families cared for patients in their final days at home and saw their loved ones struggle. Because medical personnel today provide end-of-life care, the family is removed from that struggle.
“We’re isolated and insulated from the reality of death, so when death comes it is all-the-more shocking and we are all-the-more ill-prepared for it,” Lemke said.
The advance of medicine has prolonged life, Lemke added.
“All these things together may make death a much more difficult experience in our day than perhaps in the past,” he said.
Brain death is the total and irreversible cessation of the entire brain, including the brain stem, and is determined by a complete examination using a set of diagnostic criteria and not by a single test, such as an electrocardiogram (EKG) or an electroencelphalogram (EEG), White explained.
“The science of brain death is very good. The concept of brain death is well-founded scientifically,” he said.
Pregnancy and brain death
Marlise Munoz was 14 weeks pregnant when she collapsed in the middle of the night at her Ft. Worth, Texas, home in November 2013. Shortly after admission to the hospital, Munoz was pronounced brain dead.
Texas law prohibits the removal of life support from a pregnant patient until fetus viability at 23 weeks. The hospital continued support and a month later, Munoz’ husband sued to remove support. A judge ruled in his favor on Jan. 24, 2014, stating that the fetus was abnormal and not viable, and that women had a right to end pregnancies if they wished.
While the law seeks to balance the rights of individuals, Popik argued the mother’s rights were extinguished when she was pronounced brain dead.
“So what’s going on here that the rights of the [unborn] child were so lost in the dialogue?” Popik asked.
White noted that the Texas law was meant to protect the fetus when the mother was in a vegetative state and did not apply to a patient declared brain dead.
According to a Jan. 28, 2014, NPR article reporting on the case, the authors of the bill “intended to keep a pregnant woman who was in a persistent vegetative state on a ventilator until she could deliver, but not a dead pregnant woman,” and insisted the hospital had misinterpreted the law.
While the Munoz case was in the news earlier this year, a similar story previously unfolded in Canada.
Robyn Benson of British Columbia was declared brain dead at 22 weeks into her pregnancy. Life support continued and her healthy but premature son was delivered at 27 weeks. Benson died the next day.
Analysts of the Munoz and Benson cases point out that the hospital had declared the Munoz fetus not viable, while the Benson fetus was determined to be normal.
Lemke told the audience that in his NOBTS ethics classes he presents another case study similar to the Munoz and Benson cases. In that case, the judge allowed life support to continue, ruling that the state has an interest in the next generation of its citizens, and asking poignantly, “Who speaks for the fetus?”
Preparing for the unexpected
While it can be difficult to craft an advanced directive for medical needs that covers a wide range of scenarios and circumstances, certain guidelines are helpful, Lemke said. Here are some guidelines for preparing an advanced directive:
• Put an advanced directive in writing that expresses the general guidelines. This is very helpful guidance for family and medical staff.
• Ask a hospital official or attorney the language of a standard “boiler plate” advanced directive, then personalize it.
• Prepare for unanticipated circumstances by appointing a surrogate decision maker with the medical power of attorney who can make decisions that follow general guidelines.
• Allowing organ donation is a separate issue but should be expressed in an advanced directive.
[Marilyn Stewart is a writer based in New Orleans. She is a frequent contributor to the Louisiana Baptist Message and the Times-Picayune.]