Love and death are the two great hinges on which all human sympathies turn. - B. R. Hayden, American poet

Birth and death are usually portrayed as 2 opposite ends on the spectrum of life, but anyone working in obstetrics knows that they can be intertwined and, in some cases, create the ultimate dilemma. This column discusses a rare but deeply disturbing event, the situation of brain death in a mother during pregnancy. The column is not intended to provide answers to the dilemma; rather, it is written to encourage dialogue and awareness of the multiple issues that will arise for nurses, physicians, and family members when such a tragedy ensues.

All clinicians are likely familiar with the use of advance directives, also known as living wills, which allow individuals to provide instructions for their care in cases where there is a terminal condition and they cannot express their wishes. Note that this differs from a healthcare power of attorney, which is a legal instrument that allows a person to designate someone to make decisions in the event of incapacitation. But what many families and clinicians may not realize are the limitations placed on advance directives in cases of pregnancy. One of the most disturbing issues is that the validity of advance directives for a pregnant woman varies state by state. And application of the law may require interpretation by the courts, as was the case in Texas for Marlise Nicole Munoz, a 33-year-old paramedic who suffered a pulmonary embolism on November 26, 2013, and was declared brain dead on November 28, 2013, at John Peter Smith Hospital in Fort Worth, Texas. Mrs Munoz was 14 weeks pregnant.1 When her husband, Erick Munoz, also a paramedic, asked for life support to be removed following the diagnosis of brain death, the hospital refused, citing the Texas Advance Directive Act, which states "A person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient."2 The hospital was eventually ordered to remove life support in a ruling that did not rest on the constitutionality of the law, but rather a finding that the law did not apply to a patient who was legally dead (brain death constituting legal death in Texas), differentiating Mrs Munoz's situation from a pregnant woman in a persistent vegetative state* (PVS) under Texas law. Mrs Munoz was removed from life support on January 26, 2014, and her body released to her family.

Statutes vary from state to state regarding advance directives, with only a handful of states offering a clear option related to pregnancy, others where pregnancy automatically invalidates advanced directives, and many states whose statutes are silent with regard to pregnancy.3 A few states use a viability standard regarding enforceability of advance directives in pregnancy.4 In all these cases, advance directives relate only to situations where the issue is PVS, or a terminal or irreversible illness resulting in incapacity. But this may be unclear, as was the case in Texas, where life support was continued even after brain death. This means that families and clinicians may be at odds with the legal system and/or each other in cases where devastating tragedy has occurred. Patients and families rely on the healthcare system to help them in such situations; yet, it can be difficult when there is little clarity regarding the legality of end-of-life decision making in these situations. Recognizing the complexity of these issues, the American College of Obstetricians and Gynecologists (ACOG) recently published a committee opinion on end-of-life decision making.5 Noting that some state laws are at odds with respecting a pregnant woman's directives, ACOG encourages physicians "to support a pregnant woman's autonomy and decisions whenever legally possible.5^(p265) ACOG further states that the "health care facility should not attempt to contravene her wishes and values, whether she voices them or they are relayed by a surrogate decision maker.5^(p265)

The difficulties families and clinicians face in these catastrophic situations are enormous. Many clinicians may find it difficult to provide unbiased support for difficult decisions made in these cases, whether those decisions come in the form of advance directives, surrogate decision makers, or the legal system. The following recommendations for clinicians are based on the author's review of the subject matter and are not meant as inclusive, exclusive, or authoritative. Rather, they are provided as discussion points and potential proactive steps clinicians may want to consider before they are faced with the tragedy of incapacity or brain death in a pregnant woman. Consider the following:

* What are the laws in my state regarding advance directives and pregnancy?

* What are my own personal feelings regarding end-of-life decisions and pregnancy?

* How can I provide supportive care to family members affected in such cases?

* How can I ensure that clinicians where I work are informed and open to discussion and dialogue about this issue?

In perinatal care, we are more familiar with life, not death. Yet, the ability to provide help and assistance to a family facing the devastating loss of a pregnant relative, or her incapacity, requires as much support if not more than that associated with birth. State laws and hospital compliance with perceived law may conflict with the pregnant woman's wishes and values, whether expressed through advance directive or through her family's knowledge of her preferences. Acting as an advocate, clinicians can assist families by becoming knowledgeable about the laws in their state, opening discussions about potential conflicts and personal biases or concerns, and considering frankly their ability to remain compassionate and supportive and to recuse themselves if for whatever reason they cannot provide such care. The ACOG committee opinion, and other literature cited herein, is worthy of review, and midwifery and obstetric practices should consider discussion of these issues as a routine part of prenatal care. Women and their families may be reluctant to discuss these issues, and the situations are very rare, but the case of Marlise Munoz serves as an all-too-disturbing cautionary tale, and women and families deserve thoughtful support and guidance from healthcare providers.

-Lisa A. Miller, CNM, JD

Founder

Perinatal Risk Management and Education Services

Portland, Oregon

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