When Law Meets Loss: Protecting Patient Autonomy Through Brain Death, Organ Donation, and End-of-Life Decision-Making

Monica Barfield, DNP, APRN, AGACNP-BC, FNP-BC

Abstract

Background: Advances in life-sustaining technologies have transformed the determination of death while creating increasingly complex ethical and legal challenges surrounding patient autonomy, surrogate decision-making, and organ donation. Although the legal framework governing brain death is well established, ensuring ethically sound end-of-life care requires more than adherence to legal standards.

Purpose: This reflective ethics manuscript examines the intersection of law, lived experience, clinical practice, and healthcare policy to explore how patient autonomy can be better protected during end-of-life decision-making.

Discussion: Drawing upon personal experience as a surrogate decision-maker, professional experience as a transplant coordinator, clinical practice as an advanced practice registered nurse, and healthcare policy advocacy, this manuscript argues that legal standards alone cannot safeguard patient autonomy. Ethical end-of-life care depends upon compassionate communication, informed surrogate decision-making, and healthcare systems capable of preserving and communicating patients’ wishes across healthcare settings. Florida’s proposed Patient-Directed Medical Orders (PDMO) legislation is discussed within the broader national context of the Physician Orders for Life-Sustaining Treatment (POLST) Paradigm as an example of policy efforts designed to improve goal-concordant care.

Conclusion: Protecting patient autonomy is both an ethical obligation and a systems-level responsibility. As medicine continues to evolve, healthcare professionals and policymakers must work collaboratively to ensure that every patient’s values remain accessible and continue to guide care when patients are no longer able to speak for themselves.

Keywords: brain death; patient autonomy; advance care planning; organ donation; surrogate decision-making; Patient-Directed Medical Orders; POLST; healthcare policy

Introduction

Advances in critical care medicine have fundamentally transformed how death is defined, diagnosed, and experienced. Mechanical ventilation and other life-sustaining technologies can preserve cardiac and respiratory function even after the irreversible loss of all brain function, creating complex legal and ethical questions surrounding brain death, surrogate decision-making, and organ donation. Although these advances have expanded opportunities for organ transplantation, they have also increased the responsibility of healthcare professionals to balance technological capability with the ethical principles of autonomy, beneficence, nonmaleficence, and justice while ensuring that patients’ wishes remain central to end-of-life care (Beauchamp & Childress, 2019; Dolgin et al., 2024; Greer et al., 2023).

The legal and ethical framework governing brain death and organ donation in the United States is well established. The Uniform Determination of Death Act, the Dead Donor Rule, and decades of judicial precedent provide clear standards for determining death and protecting patient autonomy. However, legal standards alone cannot ensure ethically sound end-of-life care. Respecting patient autonomy requires compassionate communication, informed surrogate decision-making, and healthcare systems capable of preserving and communicating patients’ wishes when critical decisions must be made.

My understanding of these issues developed through lived experience long before I became an advanced practice registered nurse. At nineteen years old, I became the surrogate decision-maker for my father after he sustained a fatal gunshot wound and was declared brain dead. Years later, I cared for families confronting similar decisions as a transplant coordinator before becoming a family and acute care nurse practitioner and healthcare policy advocate. Experiencing end-of-life decision-making as a daughter, transplant professional, advanced practice registered nurse, and legislative advocate has provided a unique perspective on the intersection of law, ethics, clinical practice, and healthcare policy.

This manuscript examines the legal and ethical principles governing brain death, organ donation, and patient autonomy through the combined lens of lived experience, clinical practice, and healthcare policy. It argues that protecting patient autonomy requires more than legal safeguards. It requires compassionate communication, meaningful advance care planning, and healthcare systems designed to preserve patients’ wishes when they are no longer able to speak for themselves. By integrating personal reflection with contemporary bioethics and legislative advocacy, this manuscript illustrates how clinicians, particularly advanced practice registered nurses, can strengthen patient autonomy through both bedside practice and systems-level change.

Legal and Ethical Framework

The legal determination of death in the United States is governed by the Uniform Determination of Death Act (UDDA), which recognizes two accepted standards for death: the irreversible cessation of circulatory and respiratory functions or the irreversible cessation of all functions of the entire brain, including the brainstem. This statutory framework provides a consistent legal standard for determining death despite advances in life-sustaining technologies that can artificially maintain cardiac and respiratory function. Accordingly, patients who meet accepted neurological criteria for brain death are considered legally and medically dead, even when mechanical ventilation maintains circulation and oxygenation (Greer et al., 2023).

Although the legal definition of brain death is well established, it is frequently misunderstood by patients and families. The presence of a beating heart, warm skin, and chest movement produced by mechanical ventilation may create the appearance of life despite the irreversible loss of all brain function. This discrepancy often makes it difficult for families to reconcile the legal determination of death with what they observe at the bedside. To ensure accuracy and maintain public trust, current consensus guidelines require a comprehensive neurologic examination, exclusion of reversible causes, and ancillary testing when indicated before brain death is declared (Greer et al., 2023).

The ethical integrity of organ donation depends upon strict adherence to the Dead Donor Rule, which requires that organ procurement occur only after death has been declared according to accepted medical and legal standards (Bernat, 2024). Similarly, donation after circulatory death (DCD) requires that decisions regarding withdrawal of life-sustaining treatment remain entirely independent of discussions about organ donation. These safeguards ensure that treatment decisions remain focused on the patient’s best interests while preserving public confidence in the transplantation process (Organ Procurement and Transplantation Network [OPTN], 2021).

Patient autonomy serves as the ethical and legal foundation of end-of-life decision-making. Competent adults have the right to accept or refuse medical treatment consistent with their values and goals of care. This principle was firmly established in Cruzan v. Director, Missouri Department of Health, in which the United States Supreme Court recognized a constitutionally protected liberty interest in refusing life-sustaining treatment while allowing states to require clear and convincing evidence of an incapacitated patient’s wishes (Cruzan v. Director, Missouri Department of Health, 497 U.S. 261, 1990). The Cruzan decision profoundly influenced the development of advance directives, surrogate decision-making, and advance care planning throughout the United States.

Although these legal standards provide an essential framework for ethical practice, they cannot eliminate the uncertainty and emotional burden associated with end-of-life decision-making. Ethical care requires healthcare professionals to integrate the principles of autonomy, beneficence, nonmaleficence, and justice with compassionate communication and shared decision-making. Helping patients and families understand the implications of brain death is not simply a legal obligation. It is an ethical responsibility that respects the dignity of the patient while supporting informed decision-making during moments of profound grief (Beauchamp & Childress, 2019; Sudore et al., 2020).

These legal and ethical principles establish the framework within which clinicians make some of healthcare’s most difficult decisions. Understanding those principles, however, is only one aspect of ethical practice. Appreciating how they are experienced by patients and families provides a deeper understanding of the responsibilities healthcare professionals assume during end-of-life care.

Personal Reflection

My understanding of brain death did not begin in a classroom or through clinical practice. It began at nineteen years old when my father sustained a fatal gunshot wound and was declared brain dead following a comprehensive neurological evaluation. Although the physicians carefully explained that he had suffered the irreversible loss of all brain function, I struggled to reconcile their words with what I observed at his bedside. His heart continued to beat, his chest rose and fell with the assistance of a ventilator, and his skin remained warm when I held his hand. To me, these visible signs represented life. When physicians asked me, as his surrogate decision-maker, to consider withdrawing life-sustaining treatment, I believed they were asking me to decide whether my father would live or die.

With the perspective I have today as an advanced practice registered nurse, I understand that my father’s death occurred when he irreversibly lost all neurologic function, not when mechanical ventilation was withdrawn. At nineteen years old, however, I lacked both medical knowledge and emotional framework to understand that distinction. Like many families described in the literature, I equated a beating heart with life and viewed brain death as something fundamentally different from death itself (Lewis et al., 2020). Although the healthcare team demonstrated remarkable patience and compassion, repeatedly answering my questions and explaining the diagnosis, I struggled with overwhelming guilt before agreeing to withdraw life-sustaining treatment. Looking back, I recognize that the greatest burden I carried was not making the decision itself but making it without knowing what my father would have wanted.

Shortly after his death was explained to me, I was approached about organ donation. At the time, I perceived the conversation as insensitive because I was still trying to comprehend that my father had died. Years later, I came to understand that these discussions must occur within a limited timeframe to preserve the opportunity to save the lives of others. What remained with me most was not the request for organ donation itself, but the compassion with which it was presented. The transplant professionals answered every question honestly, acknowledged my uncertainty, respected my hesitation, and gave me the time I needed to make an informed decision. Their professionalism and empathy during one of the most devastating moments of my life profoundly influenced my understanding of ethical patient care.

Several years later, I found myself on the opposite side of those conversations as a transplant coordinator at the University of Mississippi Medical Center and later at the University of Alabama at Birmingham. Caring for families confronting the same unimaginable decisions transformed my understanding of brain death, organ donation, and surrogate decision-making. I learned that families rarely remember the medical terminology used to explain brain death. Instead, they remember whether healthcare professionals treated them with honesty, patience, dignity, and compassion. Accurate information is essential, but compassionate communication is what enables families to understand complex medical realities during moments of profound grief.

Experiencing end-of-life decision-making from both sides of the bedside reshaped my understanding of patient autonomy. Respect for autonomy requires honoring patients’ wishes whenever they are known. Beneficence and nonmaleficence require clinicians to act in the patient’s best interests while minimizing harm, even when curative treatment is no longer possible. Justice requires that organ donation and allocation occur through fair and transparent processes that preserve public trust. These principles became far more than concepts learned in graduate education. They became lived experiences that continue to influence every conversation I have with patients and families about serious illness, advance care planning, and end-of-life care.

Those experiences also revealed an important limitation of relying solely on legal and ethical principles. Compassionate communication is essential, but it cannot fully protect patient autonomy if a patient’s wishes are unavailable when critical decisions must be made. This realization transformed not only my approach to clinical practice but also my commitment to healthcare policy. It ultimately inspired my advocacy for systems that better preserve patients’ voices when they are no longer able to speak for themselves.

Clinical Practice and Professional Perspective

The experiences that shaped my understanding of brain death and surrogate decision-making continue to influence my practice as both a family and acute care nurse practitioner. Although catastrophic neurologic injuries are encountered more frequently in critical care than in primary care, ethical questions surrounding patient autonomy arise across every healthcare setting. Patients with advanced heart failure, progressive neurologic disease, dementia, cancer, and other life-limiting illnesses often express clear preferences regarding end-of-life care during routine office visits. Yet when medical emergencies occur, those preferences are frequently unavailable to the clinicians responsible for making urgent treatment decisions.

Throughout my practice, I have cared for patients whose previously expressed wishes were not immediately accessible during a medical crisis. Some underwent intubation, mechanical ventilation, and prolonged treatment in intensive care units before family members located advance directives indicating that the patient wished to avoid aggressive life-sustaining interventions. These situations do not reflect poor medical judgment or inadequate care. Rather, they reveal a healthcare system in which patients’ wishes are not consistently available when they are needed most. As a result, surrogate decision-makers often bear the emotional burden of making irreversible decisions without confidence that they are honoring the patient’s preferences.

These experiences have reinforced my belief that advance care planning must extend beyond completing legal documents. Effective advance care planning requires ongoing conversations that translate a patient’s values into clear, accessible medical orders capable of guiding treatment across healthcare settings. Protecting patient autonomy depends not only on documenting preferences, but also on ensuring that those preferences remain available throughout the continuum of care.

Advanced practice registered nurses are uniquely positioned to lead these conversations. Their longitudinal relationships with patients create opportunities to discuss goals of care before a crisis develops, revisit those decisions as health conditions change, and educate families about the importance of documenting treatment preferences. As APRNs continue to assume expanded roles in primary care, acute care, palliative care, and chronic disease management, they are increasingly positioned to improve advance care planning, strengthen patient autonomy, and promote goal-concordant care.

Protecting Patient Autonomy Through Healthcare Policy

While meaningful conversations are the foundation of advance care planning, they cannot protect patient autonomy if patients’ wishes are unavailable when critical decisions must be made. My clinical experiences highlighted the need for healthcare systems that preserve and communicate patients’ treatment preferences across care settings, ultimately leading me to become involved in healthcare policy and legislative advocacy focused on improving advance care planning and expanding the use of portable medical orders.

During Florida’s 2025 legislative session, House Bill 353 (HB 353) and Senate Bill 566 (SB 566) proposed the creation of Patient-Directed Medical Orders (PDMOs). The legislation was subsequently reintroduced during the 2026 legislative session as House Bill 369 (HB 369) and Senate Bill 312 (SB 312). These bills sought to establish a standardized, portable medical order that could be completed by physicians or advanced practice registered nurses after meaningful discussions regarding a patient’s goals of care. Unlike traditional advance directives, which often require interpretation by family members or treating clinicians, PDMOs were designed to provide immediately actionable medical orders addressing cardiopulmonary resuscitation, mechanical ventilation, hospitalization, artificial nutrition and hydration, and other life-sustaining interventions.

An important component of the proposed legislation was the development of a secure statewide electronic registry that would allow authorized healthcare professionals to rapidly access patients’ documented treatment preferences regardless of where they presented for care. Such a system would reduce reliance on paper documents that may be unavailable during emergencies and improve the likelihood that treatment decisions reflect patients’ expressed wishes.

Although the legislation was not enacted, the challenges it sought to address remain highly relevant. Patients increasingly receive care from multiple healthcare systems, making portable, accessible medical orders more important than ever. Similar approaches have been implemented throughout the United States through the Physician Orders for Life-Sustaining Treatment (POLST) Paradigm, which translates patients’ goals of care into standardized medical orders that accompany them across healthcare settings (National POLST, 2024).

Evidence supporting POLST demonstrates that portable medical orders improve goal-concordant care. Early research by Lee et al. (2000) found that patients with POLST forms were significantly more likely to receive treatment consistent with their documented preferences, particularly regarding resuscitation status and other life-sustaining interventions. More recently, an integrative review of 94 POLST studies concluded that POLST use was consistently associated with improved quality-of-care outcomes, with 79% of quality-of-care measures demonstrating significantly better concordance between patients’ documented treatment preferences and the care they ultimately received. The review also found that POLST significantly improved advance care planning actions, reinforcing its effectiveness in translating patients’ values into actionable medical orders across healthcare settings (Umberfield et al., 2024). Together, these findings demonstrate that POLST is more than an advance care planning document; it is an evidence-based strategy for ensuring that patients receive care consistent with their goals and values while improving communication across the continuum of care.

Advanced practice registered nurses have an important leadership role in advancing these efforts. Through ongoing relationships with patients across primary care, specialty care, and palliative care settings, APRNs are uniquely positioned to facilitate advance care planning, educate patients and families about treatment options, and ensure that patients’ goals of care are documented before a medical crisis occurs. Beyond the bedside, APRNs also have an opportunity to influence healthcare policy by advocating for systems that improve access to portable medical orders and strengthen patient-centered decision-making.

Protecting patient autonomy requires healthcare systems that ensure patients’ wishes remain available whenever critical decisions must be made. Portable medical orders, interoperable electronic registries, and interdisciplinary collaboration represent important opportunities to improve goal-concordant care while reducing the emotional burden experienced by patients, families, and healthcare professionals.

Conclusion

Brain death represents one of the most legally and ethically complex areas of modern healthcare, requiring clinicians to balance scientific certainty with compassionate, patient-centered care. The Uniform Determination of Death Act, the Dead Donor Rule, and the legal precedent established in Cruzan v. Director, Missouri Department of Health provide an essential framework for determining death, protecting patient autonomy, and guiding ethical organ donation. Yet, as this manuscript demonstrates, legal standards alone cannot ensure ethically sound end-of-life care. The greatest challenges arise not from uncertainty in the law, but from ensuring that patients’ values remain central to decision-making when they can no longer speak for themselves.

My experiences as a daughter, transplant coordinator, advanced practice registered nurse, and healthcare policy advocate have reinforced that protecting patient autonomy extends beyond determining death or honoring advance directives. It requires healthcare professionals who communicate with honesty, empathy, and compassion while supporting patients and families through some of life’s most difficult decisions. Equally important, it requires healthcare systems that preserve and communicate patients’ wishes across the continuum of care so those preferences remain available when they are needed most.

Advanced practice registered nurses are uniquely positioned to lead these efforts. Through trusted relationships with patients and families, APRNs can facilitate meaningful advance care planning, educate individuals about treatment options, advocate for documentation of patients’ goals of care, and influence policies that strengthen patient-centered decision-making. By combining compassionate clinical practice with professional advocacy, APRNs can help ensure that patient autonomy remains the foundation of ethical end-of-life care.

Ultimately, protecting patient autonomy is both an individual professional responsibility and a systems-level obligation. Healthcare professionals must continue to advocate for practices and policies that preserve patients’ voices beyond the bedside and across every healthcare setting. As medicine continues to evolve, nurses have an extraordinary opportunity to lead efforts that strengthen advance care planning, improve communication, influence healthcare policy, and ensure that every patient’s values continue to guide care when they are no longer able to speak for themselves.

Acknowledgements

This manuscript is dedicated to the memory of my father, whose final gift profoundly shaped my understanding of patient autonomy, compassion, and ethical decision-making. Although I could not fully appreciate the significance of those experiences at nineteen years old, they inspired my lifelong commitment to advancing patient-centered care, supporting families during end-of-life decision-making, and advocating for healthcare policies that honor patients’ wishes.

I am deeply grateful to the patients and families who entrusted me to walk alongside them during some of the most vulnerable moments of their lives. Their courage and resilience have continually reinforced that compassionate communication and respect for individual values are among the greatest responsibilities of healthcare professionals.

I also extend my sincere appreciation to the physicians, nurses, transplant professionals, educators, mentors, and colleagues whose guidance and dedication to ethical practice have influenced both my clinical career and my approach to healthcare policy.

Finally, I sincerely thank the editors and peer reviewers whose thoughtful feedback strengthened the scholarly quality of this manuscript. Their insights challenged me to deepen my analysis, strengthen the evidence supporting my arguments, and more clearly articulate the connection between lived experience, clinical practice, and healthcare policy.

Finally, I acknowledge that this manuscript represents the intersection of lived experience, professional growth, and an enduring belief that every patient deserves not only compassionate care, but also the assurance that their voice and values will continue to guide healthcare decisions when they are no longer able to speak for themselves.

Dr. Monica Barfield is the owner of New Horizon Primary Care in Port St. Joe, Florida.

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