Brain Death

In the United States, HCPs declare death either when circulatory and respiratory functions irreversibly cease (circulatory death) or when all functions of the entire brain, including the brain stem, irreversibly stop (BD).Reference Aas⁶ After lawmakers codified BD in the Uniform Determination of Death Act (UDDA), medical organizations, including the American Academy of Neurology (AAN), published guidelines to standardize determinations and uphold ethical integrity.Reference Kirschen⁷ These guidelines affirm the permanence of BD: brain function will not return irrespective of medical intervention for a BD individual.Reference Greer⁸ Pursuant to these guidelines, a pregnant individual can be declared brain-dead by standard criteria, and pregnancy status should not preclude a BD exam if otherwise indicated.Reference Lewis⁹ While there is controversy surrounding whether consent should be required for BD testing, AAN guidelines state that HCPs do not need consent to evaluate a patient for BD unless otherwise required by institutional policies or state law.¹⁰ Once an individual is declared brain-dead pursuant to clinical criteria, the person is also considered legally dead, and ongoing somatic function reflects medically-supported physiologic activity rather than life. This distinction underscores the ethical, legal, and medical difference between maintaining biological processes and preserving life.Reference Magnus¹¹

While HCPs typically discontinue interventions that provide physiologic and technologic support after BD, a small number of states recognize religious objections and allow accommodations.Reference Johnson¹² Accommodations recognized by two states (California and Illinois) do not change the clinical or legal status of the decedent or prohibit an HCP from performing a brain death exam.¹³ Rather, they address institutional process and shield hospitals from liability for continuing physiologic support for a reasonable period beyond BD. Only New Jersey prohibits the declaration of BD if it would violate an individual’s religious beliefs. Under such circumstances, cardiorespiratory criteria must be used to affirm death.Reference Bernat¹⁴ In other situations, HCPs may maintain short-term physiologic stability to permit organ procurement and transplantation, including in a pregnant individual, with input from the multidisciplinary team and surrogate decision-makers.Reference Kantor and Hoskins¹⁵ However, a pregnant decedent raises an additional question: whether to continue physiologic support for fetal benefit to achieve live birth.

Miranda lives in a state that has codified the UDDA’s definition of BD. In Miranda’s case, the family agrees to a BD exam, although consent was not required by the health care institution or state law. After completing this testing, the neurologist declares Miranda dead by neurologic criteria.

MPS-BD for Fetal Sustenance in Practice

Not long after the UDDA’s adoption, the first case of MPS-BD with the intent of continuing gestation was reported.¹⁶ Three weeks after the individual was declared brain-dead, the HCPs delivered a live infant at 27 weeks’ gestation. Since that publication, additional cases of MPS-BD have resulted in outcomes of either live birth or fetal demise.¹⁷ Discussions and decisions about MPS-BD often focus on the decedent’s antemortem preferences, if known, and on fetal risks and benefits. Depending on the gestational age and circumstances, options include (1) discontinuing physiologic support with demise of the fetus, (2) immediate delivery of the fetus (if viable, beginning at around 22 weeks’ gestation in high-resource medical settings)Reference Battarbee¹⁸ with subsequent discontinuation of physiologic support for the decedent, and (3) continuing physiologic support at least until the fetus reaches viability.

MPS-BD requires intensive clinical management and creates the potential for multiple complications. Medical management typically requires intensive care unit-level support, with continuous monitoring of multiple physiologic parameters. Complications include infections (urinary tract infections, pneumonia, sepsis); circulatory instability; diabetes insipidus; thermal variability; and panhypopituitarism.¹⁹ Management may include preservation of uterine/placental blood flow, respiratory support to maintain adequate oxygenation and ventilation, cardiovascular support, hormonal regulation, management of diabetes insipidus, thermoregulation, nutritional support through total parenteral nutrition, and aggressive treatment of infections.²⁰ The complications and required treatments may all have implications for the fetus.

The medical challenges of the decedent’s body, fetal monitoring, and fetal assessment guide the duration and intensity of MPS-BD, with the goal of achieving sufficient fetal maturity to optimize neonatal outcomes while balancing the maternal physiologic deterioration that inevitably occurs despite maximal medical support. In a review by Dodaro and colleagues, the most common indications for delivery were maternal cardiocirculatory instability (38%) and non-reassuring fetal testing (35%).²¹

Fetal viability currently begins near 22 weeks’ gestation in high-resource settings, and neonatal outcomes improve with each advancing week thereafter.²² Although data are limited, some reports suggest the risk of fetal demise and neonatal death or morbidity decreases as the gestational age at the time of brain death increases.²³ The lack of oxygen to the fetal brain that may occur prior to initial stabilization of the pregnant decedent’s organs, subsequent medical complications during MPS-BD that may affect the fetus, and premature birth all can impact neonatal morbidity and mortality. Multidisciplinary HCPs should counsel the family so that they comprehend the process and range of expected outcomes and the multiple factors that impact outcomes when making decisions.

When MPS-BD is pursued, the clinical risks and benefits of the timing of delivery necessitate careful ethical reflection. Gestational age, maternal physiologic stability, and family preferences play a role. The family and medical team intend to maximize fetal well-being while avoiding unnecessary prolongation of physiologic support.Reference Mallampalli and Guy²⁴ For some families, this creates pressure to continue MPS-BD until near term, if possible. The decision becomes more complex as the decedent’s physiology deteriorates with time. Maternal-fetal specialists, intensivists, and the neonatal team, together with the family, determine the best timing for delivery.Reference Feldman²⁵

Autonomy and Substituted Judgment

Autonomy is one of the four main principles of biomedical ethics as articulated by Beauchamp and Childress in Principles of Biomedical Ethics, originally published in 1979.Reference Beauchamp and Childress⁴⁰ In clinical ethics, autonomy emphasizes the patient’s right to make their own decisions about their medical care free from coercion and with an understanding of relevant information that advises their decision-making.

Although a decedent cannot exercise autonomy, a person who is alive can exercise autonomy by expressing preferences regarding the disposition of their remains. Failure to adhere to their antemortem wishes may, therefore, constitute a posthumous harm to their autonomy.Reference Wicclair⁴¹ For example, MPS-BD against a decedent’s expressed or implied preferences prior to death would constitute using their body for the benefit of another — the fetus. It also injures the family, who is unable to carry out their loved one’s wishes. In such a case, MPS-BD disregards the principle of autonomy and treats the decedent as an object — a mere means to an end. Interests formed and decisions made while alive about issues such as organ donation, disposition of remains, and estate planning all persist and are legally enforceable after death. That is, decedents still have morally salient interests.⁴²

Even if a pregnant decedent had a living will that would otherwise govern treatment choices during pregnancy under institutional policy or state law, the decedent may not have expressed wishes regarding MPS-BD. Without a written mandate from the decedent, substituted judgment appropriately replaces autonomous decision-making. In substituted judgment, the health care surrogate bases their decision on the decedent’s values and known preferences, asking what the patient would have wanted if they could tell the surrogate decision-maker. If the surrogate has little or no information about a patient’s prior wishes, they decide using the best interests standard.Reference Torke⁴³

Miranda clearly stated a desire to terminate her pregnancy, avoid prolonged ventilation without hope of recovery, and forgo organ donation. The nuanced discussions between her family and HCPs review the concept of substituted judgment and examine the effect of MPS-BD for Miranda and her fetus. The family concludes Miranda would not want MPS-BD for the sake of the fetus. Meanwhile, the HCPs recognize that allowing Miranda’s organs to cease functioning, the physiologic consequence of death, would result in fetal demise, as distinct from an abortion. Yet they worry that state law might construe withdrawal of physiologic support as “abortion.”Reference Lewis⁴⁴ The hospital’s ethics team and legal department are both consulted. The ethics team concludes that it is ethically permissible to withdraw physiologic support so Miranda’s family can bury her and respect what her family believes she would have wanted, with the caveat to consult with the legal team. The hospital’s legal counsel, concerned about liability for the HCPs and the hospital, seeks judicial guidance. Although the medical team agrees with the ethics team’s analysis, the institution’s legal advice constrains their actions. They continue MPS-BD while awaiting the court’s decision.

Dignity and Bodily Integrity

Maintaining a pregnant decedent on medical technology for weeks or months after a declaration of BD raises questions about defacement, desecration, and harms related to dignity and bodily integrity, concerns that families and HCPs experience as deeply distressing.⁴⁵ Every person deserves to die with dignity, which extends to honorable treatment after death.⁴⁶ As with physiologic support after BD for organ donation, MPS-BD demands decency and dignity.Reference Montag⁴⁷ Treating the decedent with respect, honoring previously expressed or known wishes, and recognizing the sensitivities of loved ones regarding death offer dignity for the decedent. The concept of bodily integrity requires avoidance of unnecessary procedures and respecting the individual’s cultural, religious, and ethical values about treatment of the body after death. MPS-BD may be perceived as a form of bodily exploitation or violation of the decedent’s dignity, particularly if it conflicts with antemortem preferences or substituted judgment.Reference Flamm⁴⁸

Laws prohibiting bodily defacement or abuse of a corpse present challenges to MPS-BD.Reference Fleming⁴⁹ Such laws could be interpreted to prevent some of the very acts that HCPs would have to engage in when providing MPS-BD.Reference Warren⁵⁰ Invasive medical procedures and interventions necessary in MPS-BD may include establishing access for intravenous catheters or central lines, placing a tracheostomy, inserting a feeding tube, administering medications and blood products, drawing blood, and performing routine daily care to the decedent. Even when legal exceptions for health care exist, moral tensions remain.⁵¹

Medical students learn early in their education that the cadavers they dissect deserve respect. The students treat them with esteem and care, valuing the opportunity for education. Similarly, HCPs must treat the bodies of decedents receiving MPS-BD with respect and dignity. The organ donation system supports this concept.⁵² Once consent is obtained, HCPs maintain physiologic support only until organ procurement, typically for hours or a few days. For a brain-dead pregnant decedent, the physiologic support could last for seven to eight months. While both MPS-BD and organ donation after BD raise concerns of dignity and challenge the moral justification for continued intervention without consent, MPS-BD is distinct from organ donation by both length and degree of physiologic support.

Whether the decedent would have wanted MPS-BD has a bearing on dignity. The International Federation of Gynecology and Obstetrics’ Committee for the Ethical Aspects of Human Reproduction and Women’s Health endorses the rights of the pregnant decedent over those of the fetus.⁵³ Some suggest that because the dead cannot feel pain, their interests cannot be supported.⁵⁴ Yet instrumentalizing the body contrary to the person’s antemortem wishes is a violation of dignity and bodily integrity. Ethical practice requires careful deliberation about whether MPS-BD aligns with the decedent’s values while avoiding treatment driven by family desires or societal pressure alone.⁵⁵ This may cause moral constraint or distress if restrictive legislation dictates a care path that does not align with these principles.

Moral Status of the Pregnant Decedent and the Fetus

Moral status reveals the standing or value of an individual, which compels that their interests be treated as morally significant.Reference Jaworska and Tannenbaum⁵⁶ Whether dead persons retain or fetuses possess moral status has generated much discussion.Reference DeGrazia⁵⁷ Some contend that loss of physiologic function entails loss of moral standing.Reference Veatch⁵⁸ However, as evidenced by the standard of honoring decision-making related to organ donation, there is still a precedent to respect and abide by an individual’s antemortem wishes. Disregarding these interests without moral justification disregards the principle of autonomy. We argue that respect for the decedent remains important regardless of one’s pregnancy status.

Further complexity arises in MPS-BD, where two entities, the decedent and the fetus, have degrees of moral status. Brain death extinguishes traditional concepts of personhood — rationality, self-awareness, and relational capacity.⁵⁹ The fetus likewise lacks these attributes. This raises questions about whether either the decedent or the fetus can embody personhood in the ethically relevant sense, or, more broadly, if personhood is even a requirement to extend moral standing to an individual.

Theories of personhood vary widely and garner much debate. Some traditional approaches base personhood upon a psychological method and consider memory, self-awareness, and rational thought.Reference Locke⁶⁰ John Locke, for example, characterized the infant as a blank slate and accordingly denied it the status of personhood. Others rely upon attributes such as consciousness, reasoning ability, mental states, self-awareness, and ability to experience, features lacked by fetuses.Reference Blumenthal-Barby⁶¹ More recently, bioethical concepts of personhood based on moral theories aim to clarify the fundamental wrongs of harming a person regardless of the above psychological factors.Reference Holm and Lewis⁶² For a fetus, this concept of nonmaleficence may be applied at any number of points in gestation: Some assign personhood at fertilization, others at viability, others at the point when a fetus can experience sensations as either agreeable or disagreeable, and others when the pregnant patient personally confers moral status upon the fetus.Reference Campo-Engelstein and Andaya⁶³ These definitions may be rooted in religious beliefs, moral theories, social systems, and/or biology. This wide variation in the basis for assigning personhood translates to a lack of a universal definition of personhood. Deliberations about the meaning of personhood therefore continue, influencing not only the abortion debate but also discussions and decisions about MPS-BD.

Moral standing, however, does not rest solely upon personhood. In the case of MPS-BD, the decedent’s moral standing can rest on their interests, expressed prior to death, in gestating a fetus, organ donation, or disposition of remains.⁶⁴ The fetus’s moral standing begins at some point in gestation, a point that has been variably defined, and increases along the gestational continuum due to sentience and viability. Even a nonviable fetus may have relative moral standing, but DeGrazia and others argue that the moral standing of a future person is not the same as that of a person, even one who has died.Reference Feinberg, Beauchamp and Regan⁶⁵ In particular, we argue that the pregnant decedent has greater moral status than that of the previable fetus.

Decisions about MPS-BD should therefore be guided by the pregnant patient’s expressed beliefs and wishes about what should happen to their body after death, and, if known, their ideas about fetal personhood. Though few pregnant individuals discuss MPS-BD, their expressed thoughts about organ donation, dignity of the decedent, desire for parenthood, and disposition of the body can give some insight into their thinking. The extended medical team, together with the family, must evaluate each case of possible MPS-BD to determine the ethically appropriate course of action.

Miranda’s body functions through physiologic support while her fetus develops. The well-recognized posthumous rights and interests of the deceased confer moral standing. Due to a lack of a written living will explaining Miranda’s antemortem choices, her parents use substituted judgment and ask to end physiologic support, a decision they believe is supported by Miranda’s desire to terminate this pregnancy and her desire to not be placed on mechanical ventilation if she had no hope of recovery. Miranda’s partner is supportive of this decision.

Justice and Resource Allocation

Prolonged MPS-BD raises broader ethical concerns beyond the individual patient, family, and HCPs. Such care creates substantial financial burdens that raise important questions about health care resource allocation. These cases often require weeks to months of care in an intensive care unit (ICU) and, if the fetus is born alive, in a neonatal ICU. The cost of such care can reach hundreds of thousands of dollars or, in some instances, over a million dollars.⁶⁶ Insurance coverage varies substantially in the United States. Most policies exclude care after BD.Reference Liao and Ito⁶⁷ When not covered by insurance, the hospital may assume costs or negotiate with families resulting in the estate shouldering the fees.Reference Howard⁶⁸ Institutions must also consider the costs of dedicating ICU beds and specialized staff for a dead patient when those resources could serve critically ill patients with potential for recovery. The prospect of a favorable neonatal outcome complicates a simple cost-benefit analysis. Some institutions have developed specific protocols and designated resources for these cases to minimize impact on other patient care. Importantly, these decisions related to justice and resource allocation should be made based on hospital or state policy rather than at the bedside.

In Miranda’s case, insurance does not cover care after BD. If courts mandate MPS-BD, the medical bill for the remainder of gestation will be extraordinary. Will Miranda’s estate be responsible for the medical bills even though she and her family opposed continued support, or would the hospital cover the costs?⁶⁹ If Miranda’s estate is insufficient to cover the medical debt, who will pay for care? Would it matter if the family were the ones requesting ongoing intensive care? What if the ICU is at capacity and no beds are available for additional patients?

Timing of Delivery and Family Disagreements

When physiologic support continues, decisions about timing of delivery involve competing indications.Reference Farragher and John⁷⁰ The goal for delivery may begin at the lower limits of viability, 22 to 24 weeks, but morbidity decreases and survival increases with advancing gestation. Should delivery be delayed to improve neonatal outcome? What if the decedent’s physiologic stability fails before that point? HCPs must weigh the benefits of greater survival and lower morbidity with the risks of fetal demise should the decedent’s physiologic stability fail. Families and HCPs must navigate this uncertainty together.

This article has thus far focused on a theoretical scenario in which family members are aligned about their desires surrounding MPS-BD and what they think the decedent would have wanted, but the decision to withdraw physiologic support is constrained by institutional policy and state law. While it is beyond the scope of this paper to fully consider the legal and ethical dilemmas that arise when family members disagree, we acknowledge that disagreements will heighten the ethical, legal, and emotional stakes. Disagreements may occur between the decedent’s partner and parents, among siblings, or across generations. Differing interpretations of what the decedent would have wanted, religious beliefs, and cultural values contribute to these conflicts. HCPs must traverse these disputes with family members while maintaining therapeutic relationships and remaining neutral about their personal preferences. They should seek mediated resolution with social workers, spiritual care professionals, and ethicists. When that fails, the named surrogate decision-maker or the legal default surrogate would decide. In some jurisdictions, an unmarried partner would not prevail without a valid health care power of attorney.⁷¹ If the default surrogate and the unmarried father cannot agree, the latter will have to go to court to petition for decision-making authority.

In Miranda’s case, her parents are the legal surrogates and align with the father of the fetus in prioritizing Miranda’s values.

Additional Considerations for the Family and HCPs

The above sections illuminate the profound ethical dilemmas that challenge fundamental principles of medical ethics and human dignity created by the intersection of BD, pregnancy, law, and ethics. The dilemmas and consequences of MPS-BD, whether freely chosen or forced by law, extend beyond the deceased pregnant patient and gestating fetus to the patient’s family, support systems, and HCPs.

MPS-BD can complicate the family’s grief, particularly when choices about whether to pursue MPS-BD are constrained by law. While no studies focus on grief in the context of MPS-BD, many examine grief in families of brain dead decedents maintained for organ donation.Reference Friedrich⁷² In their review, Kerstis and Widarsson summarize family member’s experiences when their brain dead relative receives support for organ procurement.⁷³ Families report shock, denial, powerlessness, rage, and anxiety after an unexpected death. Many families do not understand whether intensive care treats the decedent or preserves transplantable organs. Decisions about donation evoke mixed responses: For some, saving others’ lives imparts meaning; for others, the process amplifies stress. Additional studies note that the ambiguity of the decedent appearing alive on physiologic support yet having been pronounced dead, and the difficulty of accepting the BD diagnosis, may complicate grief and worsen depressive symptoms.Reference Kentish-Barnes⁷⁴

While studies are lacking, we expect that families of MPS-BD decedents would have a more exaggerated experience than families of those whose period of physiologic support is limited to facilitating organ donation. Families must witness the body of their loved one, whom they may have already begun to mourn, maintained on machines in a hospital bed, in a liminal state between death and burial. The persistence of physiologic support may impede their acceptance of death, as their loved one’s body remains physically present. Prolonged invasive procedures and visible physical changes as the body breaks down can seem disrespectful, further complicating grief. They may experience “ambiguous loss,” in which the lingering biological activity of a dead body prevents the normal mourning process and hinders the acceptance of death.Reference Boss⁷⁵ Postponing rituals such as burial, cremation, memorials, and religious ceremonies delays closure.

Even if a family looks forward to welcoming a new baby (assuming the infant’s survival), MPS-BD can cause complicated and conflicting emotions. They may worry about the implications of MPS-BD on fetal health: feeling overwhelmed by the prospect of a long NICU stay and an uncertain prognosis that may include lifelong disability. If the fetus or premature infant dies, regret, guilt, and anger may intensify.

Patients’ families may experience feelings of helplessness, guilt, confusion, or betrayal. These emotions may be amplified if the families are inadequately involved in decision-making; not informed of treatment plans or potential complications; or denied decision-making power due to state laws governing abortion, fetal personhood, or living wills for pregnant persons. They may fear legal and societal repercussions if they make the “wrong” choice. Disagreement among the family may create additional strife and shatter support structures during a time when they are needed most.

For HCPs, navigating these sensitivities requires balancing respect for the family’s wishes with the obligation to honor the decedent’s body and uphold ethical standards. HCPs should facilitate compassionate communication, provide psychosocial support, and ensure transparency to aid families in understanding the complex medical and moral issues involved.⁷⁶ HCPs who are constrained to perform MPS-BD by their institutions and/or interpretation of state law should seek and support the empowerment of family members to honor the decedent’s body in ways that are meaningful to them. In this way, HCPs can support healthier coping and grief.

HCPs may face their own moral distress when providing intensive care and performing invasive procedures on a pregnant decedent, particularly when the law seemingly requires them to do so against family wishes or known or presumed patient values.Reference Hamric and Blackhall⁷⁷ Medical teams must perform invasive procedures, manage complications, and provide intensive interventions not for the benefit of the decedent receiving them but solely for the developing fetus who has an unknown chance of survival. This can create profound cognitive dissonance, particularly when the likelihood of bringing the pregnancy to viability is low, when the fetus shows signs of compromise, or when the process requires weeks or months of intensive care resources. Some HCPs may feel complicit in what they perceive as instrumentalizing a human body, while others struggle with the emotional toll of caring for a corpse in ways typically reserved for living patients.

The prolonged nature of care amplifies moral distress as staff members may develop emotional attachments to the deceased patient, the fetus, and the family while simultaneously questioning the clinical and moral appropriateness of the care provided.Reference Diehl⁷⁸ Moral distress can lessen or alternatively increase when the pregnancy becomes visible or when fetal imaging provides a view of the fetus. A visible, live fetus inside a dead mother may intensify conflict and ambiguity about who the patient is. Health care institutions should offer counseling, ethics consultations, and opportunities for staff to express concerns.Reference Austin⁷⁹

Miranda’s family wants to bury her. While the hospital pursues a court order, she remains on physiologic support. The family feels guilty for what is happening to Miranda’s body, despite not requesting MPS-BD or initiating the legal action. They do not feel supported by the institution. Moreover, they fear legal and social repercussions. While some of the family would love to welcome a new baby under other circumstances, they cannot make peace with forcing Miranda’s corpse to gestate a fetus she did not want to gestate while she was alive.

The medical staff likewise has difficulties caring for Miranda’s body while awaiting the court order. HCPs are continually reminded that their patient is dead as they do not use pain relief or symptom management for invasive treatment. Her body goes into cardiac arrest and requires cardio-pulmonary resuscitation. The doctors, nurses, and respiratory therapists feel they are desecrating her body. Knowing that she did not want to stay pregnant makes every physical interaction anguished. Offering emotional support to her bereaved family proves painful and difficult.

The Complexity of Ethics and the Law

While they often converge, the law is not necessarily bound to ethical principles, and what is ethical may fall outside the limits of the law. MPS-BD during pregnancy poses an ethically and legally complex scenario where ethical principles and legal requirements may diverge. We maintain that MPS-BD is ethically permissible but not obligatory, and, in some cases, ethical principles may in fact weigh against MPS-BD, such as in cases where the decedent’s express or implied wishes suggest they would not have wanted MPS-BD, or when their surrogate decision-maker chooses withdrawal of physiologic support over MPS-BD. Yet the law may challenge the prerogative of a decedent (via preferences expressed during life), surrogate, or health care team to forgo MPS-BD even when ethics permits or demands doing so. Decisions regarding who may act as surrogate for the fetus, the duration of support, and acceptable medical interventions may lead to conflicts between what clinicians ethically perceive as appropriate and what the law or institutional policy permits.Reference Barr⁸⁰ Statutes directly addressing MPS-BD are nonexistent. In the absence of clear legal requirements, hospitals rely on institutional policies, ethics committees, and hospital attorneys to aid decision-making. Some hospital attorneys and HCPs extrapolate from fetal personhood, abortion, and pregnancy overrides in advance directive laws; others do not, resulting in variability in practice.

The intersection of ethics, law, and clinical practice in MPS-BD highlights several areas of tension. Clinically, somatic support is technically feasible; ethically, supporting the fetus may or may not be justified; legally, frameworks are silent or ambiguous at best. Resource allocation, emotional burden on families, and risk of medical complications regarding the decedent and the gestating fetus further impact decision-making.Reference Kass and Rachel⁸¹ Given these complexities, there is a compelling need for structured institutional protocols and legal clarity. Ethical and legal clarity can help standardize practice, reduce HCP distress, and protect maternal dignity and the rights of surrogate decision-makers. Interdisciplinary institutional guidelines, explicit maternal advance directives in pregnancy, and transparency of laws regulating postmortem bodily integrity are critical to support evidence-based, ethically sound, and legally defensible decision-making in these rare but consequential scenarios.