How To Avoid Brain Death Purgatory

Ian Waldie/Getty

For the past two months we have watched an agonizing struggle between a Texas family, their doctors, and state law that prevents the withdrawal of medical care for a brain dead—but pregnant—woman.

In case you missed it, a quick recap: Marlise Munoz, a 33-year-old paramedic, collapsed in her home last November while 14 weeks pregnant with her second child. She was discovered on her kitchen floor by her husband and transported to John Peter Smith Hospital in Fort Worth, Texas, where she was declared brain dead.

But Mrs. Munoz had been a paramedic. She had seen the plight of hundreds of people and was no stranger to death.

Despite her clearly written advanced directive, which indicated Mrs. Munoz never wished to be placed on artificial life support, the hospital continued to provide care under the mandate of a Texas state law preventing the withdrawal of care during pregnancy. After weeks of pleading for an end, an ultrasound revealed that the child was abnormal, and the patient’s husband successfully acquired a court order to withdraw care.

On January 24, 2014, Mrs. Munoz was disconnected from artificial support and her remains were released to her family.

An already tragic situation that was prospectively dictated to end swiftly was prolonged into an agonizing series of court appearances. Put all ethics aside and take in the medical reality of this situation. When a person is brain dead they are no longer a living person—medically or legally. Parts of their body, like the heart and the lungs, can be artificially forced to perform physiological acts that resemble life, and organs and tissues may even remain viable for transplant into other living people. And though the term “life” support, perhaps a misnomer, is often applied to this situation, it does not change the fact that a person’s life ends when their brain goes forever quiet.

After brain death modern medicine can keep the body functioning in a near-physiological state for some time. In the medical community, such interventions are justified to preserve organs for donation, support a mother through pregnancy, or both. That is to say, sometimes the mother’s organs are harvested following the birth.

The child in the womb of a mother on aggressive medical support has the odds stacked against them. Consider the mother’s dysfunctional body.

Without brainstem function, she no longer initiates breaths and a mechanical ventilator attempts to replace them by forcing air into her lungs through a tube in her throat. Tubes in her veins, stomach, and bladder become conduits for bacteria that thrive in the intensive care unit and quickly fill the bloodstream to feast. The ensuing dire condition is sepsis: blood vessels become leaky and then her heart, continuing to pump unaware of the futility, struggles against a falling blood pressure. Eventually the mother’s body can no longer be artificially supported and organ failure occurs despite the best efforts of doctors and nurses.

It is only a matter of time before the battle is lost, and the goal is to beat the clock.

In medical practice, there is not necessarily a limit on how early in the pregnancy it makes sense to do this, but the average length of medical support is approximately 40 days.

Everyday, the survival rate of premature infants increases, but either death or lifelong disability are still very likely in children born before 32 weeks gestation. In previous cases where the decision was made to continue support, the goal has been to prolong care of the brain dead woman until this time, and the average baby is delivered at around 30 weeks.

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It is difficult to predict, however more than half of pregnancies supported through brain death will likely result in a viable child. Throughout the pregnancy, the growing fetus faces blood pressure fluctuations, hormone and temperature abnormalities, an onslaught of medications, and threats of infection. But if they reach 32 weeks, there is a good possibility they will be physically normal. One of the most dramatic successful cases is that of a 35 year-old woman in the United Arab Emirates declared brain dead in her 16th week of pregnancy. She was kept on support for 110 days before delivering a healthy baby boy.

In the case of Marlise Munoz, the child was thought to have a condition known as hydrocephalus, in which there is excessive brain fluid interfering with normal function.

This is often surgically treatable after birth, and many children have a relatively good quality of life, albeit punctuated with many medical issues and surgeries. Forms of hydrocephalus that arise in the womb are usually associated with other brain abnormalities that may take a toll on intellectual ability. There are some situations in which the deformity is so severe one can say with great confidence that the child will not be normal, but this certainly is not true for all cases. In other words, a pregnancy does not necessarily need to be terminated for this finding alone, but some families choose this path due to the uncertainty regarding the severity of the child’s future disability. It is troubling, however, that we have resorted to the legal system interpreting the words and actions of doctors and nurses to make decisions regarding whether an unborn child should live or die.

We doctors have watched the evening talk shows along with the rest of America over these past two months, and there were no clear winners in the debate. We pray that solace is found in the idea that Marlise Munoz is now at peace and her family may finally begin the mourning process. If nothing else, this experience has given families a chance to reflect on their own lives.

Perhaps now is the moment for you to turn to your loved one and have a real conversation about your wishes.

Great effort is placed into aligning goals of care with the previously expressed wishes of a patient and their family, regardless if they are in writing or not. It is unusual, however, but not unheard of, that doctors must make end-of-life decisions that are at odds with a patient’s wishes. The difficulty usually lies in a problem with interpreting what those wishes were—a brother may disagree with his sister about their mother’s true wishes, and it is left to a hospital’s ethics team to navigate such treacherous waters.

To be air tight, you need something called an “Advance Directive.” This is a legal document that informs care providers of your wishes in the event that you become incapacitated or unable to make ongoing medical decisions for yourself. There’s never really an opportune time to go through this process but the worst situation is when there is no documentation and the family, doctors, or state have to infer what the patient’s wishes would be.

The Advance Directive states, in writing, your explicit medical wishes in certain circumstances, or designates a healthcare “proxy”—someone who can make those choices for you, if you can’t. It may include several important other elements, such as “Do Not Hospitalize” or “Do Not Resuscitate” orders, decisions about providing nutrition in futile circumstances, and even special requests such as brain donation for diagnosis and research purposes. It allows you to refuse medical treatment even before a situation arises in which you would need it.

As in the case of Mrs. Munoz, some states like Texas do not uphold these documents during pregnancy, but that is no reason to avoid the discussion.

End of life discussions are never easy to have, and who is really betting against themselves, anyways?

But do it.

Take responsibility for yourself and your loved ones for these situations carry great burden and heartache.