A patient in the preoperative area suddenly refuses to go forward with the removal of infected wires unless he is given assurances that the rest of his brain implant will remain in place. He indicates that he will go home and die rather than have the implant removed. The patient, surgeon, ethicist, and wife all convene to resolve the time sensitive issues. The short-term outcome is very positive, but there is an unexpected longer-term outcome that was unsettling.

A dispute arose among hospital staff members regarding the ongoing use of ECMO (over several months) for a young woman with lung failure following stem cell transplantation and the development of multiple lung infections, as well as pulmonary hemorrhage. The patient was not a candidate for lung transplantation, and few believed her lungs could recover to allow separation from the circuit. Some staff members felt that continued use of the scarce resources associated with ECMO (machinery and highly specialized personnel) could not be justified. The patient and family repeatedly indicated a desire to prolong life as long as possible. The case prompted three separate requests for ethics consultation and raised multiple issues surrounding resource allocation, management of tense patient-family-staff relationships, and the institutional status of the ethics consultation process. The reasoning and recommendations of the ethics consultants challenged established power and authority within the institution, making the situation uncomfortable for all.

With innovations in medicine, ethicists are consulted on cases without sufficient clinical knowledge or ethical precedent to call upon. Under pressure from a distraught care team, the ethicist in this case tries to justify a unilateral withdrawal of an advanced form of cardiac life support – VA-ECMO. She shares how her sense of obligation to relieve the team’s moral distress blinded her from appreciating that the patient was not "really, most sincerely dead." In consultation with the hospital’s legal counsel, the ethicist agreed that the patient did not meet strict criteria under the definition of death by circulatory criteria/cardiac death.

The patient’s family, in shock by his rapid decline following a complicated aortic dissection repair, were holding out for a miracle. Because they could see the ECMO machine pumping blood throughout his body, they struggled to believe he would never recover. The ethicist used a different strategy to resolve the conflict: She coached the team to present the medical facts in lay-person’s terms, using a commonly recognized sign of cardiac death, the flat-line. The family then accepted that patient’s native organ was gone. Since he was not a candidate for transplant, they agreed to disconnect the ECMO machine.

Clinical ethics consultation was requested by the intensive care unit regarding a young woman with a near full-term pregnancy on the brink of COVID respiratory failure. She refused lifesaving mechanical ventilation, as she embraced the religious instruction of her upbringing to distrust religious outsiders and instead allow God to personally direct her choices. A psychiatrist determined that her beliefs were atypical, but she had medical decision-making capacity to refuse ventilation. Without it, her intensivist team anticipated her death along with the fetus within hours. Ethical consultation weighed the following: rights to bodily autonomy; standards of informed refusal; religious coping; nonabandonment and trust; moral distress and sympathetic regret. With her permission, the ethics consultant contacted her family, who were dismayed by her choices and reached out to persuade her otherwise. Within hours, she provided consent for ventilation and cesarean section; despite these, she required extracorporeal membrane oxygenation for ten days. Ultimately, she and her healthy newborn were discharged home. In follow up, she described no regrets over her care nor distrust of her providers. The clinical ethicist is haunted by the uncertainties of the practice of medicine and ethics, as well as by missteps in the consultation process

Arturo González was a thirty-eight-year-old man who presented to our hospital during the Delta variant surge with COVID-related pneumonia that badly damaged his lungs. He was cannulated for extracorporeal membrane oxygenation (ECMO) upon admission; he had been on ECMO for seventy days and was awake and alert when Ethics was consulted. Due to multiple marginalized identities—he was an undocumented immigrant, uninsured, and had limited social support—Arturo did not have access to a lung transplant and was dependent on ECMO for survival. In the face of mounting critical care resource scarcity, Arturo’s intensivists disagreed about whether to continue ECMO indefinitely or to explore discussions about withdrawing support. In this book chapter, we discuss our role as ethics consultants balancing the organizational duty to justly steward scarce resources with the professional duty to this vulnerable patient: setting treatment boundaries while collaborating with Arturo on a treatment plan within these boundaries. We also discuss our role in addressing the care team’s moral distress at the most haunting aspect of this case: that Arturo’s social position limited his access to a lifesaving transplant.

Saciid, a seventy-one-year-old Somali man, collapsed at home. His family began CPR, and he was admitted to our ICU where he was intubated and sedated. He underwent surgical embolization for a large liver hematoma. His GI bleeding continued; he had a large open wound and was septic. Intubated and extubated several times, his family was told there were no restorative options. However, he rallied such that he was extubated and discharged to a skilled nursing facility. A month later he was readmitted with pulmonary complications, sepsis, and a nonhealing wound. Family was told he would not survive, but they pressed for all possible medical treatments. Distrustful of our medical prognoses, they micromanaged his care, disregarding his grave condition. Systemic inconsistencies, including rotating doctors and nurses, terminology differences, and communication challenges between different services created confusion. Told more than once he would not survive the night, his family found him alive the next morning. As long as they could pray with him, it was worthwhile to do everything to prolong his life. Ethics was consulted for multiple issues including the family’s frustration with communication, their expectation of aggressive treatment, and Saciid’s caregivers’ distress with providing care they considered harmful and futile.

This chapter discusses an ethically challenging case involving a seventeen-year-old patient, Joseph, diagnosed with advanced osteosarcoma. His care was complicated by his mother Sheila’s refusal to adhere to recommended medical treatments, including chemotherapy and pain management. Despite Joseph’s severe pain and deteriorating condition, Sheila’s resistance to medical interventions caused significant ethical and medical dilemmas. The medical team, ethics consultants, and Child Protective Services (CPS) were repeatedly involved, but Sheila’s influence over Joseph, compounded by his love and loyalty to her, continued to hinder pain and symptom management.

As Joseph neared the end of his life, ethical consultations suggested involving him in decision-making due to his cognitive maturity and understanding of his medical needs. However, Sheila’s refusals persisted, leading to intense moral distress among the care team. Efforts to engage CPS and legal avenues to override parental authority were insufficient, and the care team struggled between their responsibility to ease Joseph’s suffering and respecting Sheila’s decisions.

This case highlights significant deficiencies in end-of-life protections for adolescents and raises crucial ethical questions about parental authority, adolescent patient autonomy, and the role of healthcare providers in safeguarding patient welfare. The chapter concludes by advocating for stronger legal and institutional guidelines to address these complex ethical issues, especially in pediatric care.

A patient at a Catholic hospital wants medical assistance in dying (MAiD). Fulfilling her end-of-life wish by facilitating her transfer to a hospital willing to provide MAiD seems like the right thing to do. But unforeseen challenges arise that force the ethicist to reckon with her dual leadership roles, the moral weight of her title, the psychological sequelae of bearing witness to suffering and death, and the moral distress that arises when law and ethics clash. Although the patient gets her wish, the case feels unfinished; the injustice that caused her unnecessary suffering remains a spiritual wound for her children. Through partnership with the patient’s family, the ethicist works with hospital leadership to devise a systemic remedy to mitigate the harms of forced transfers for similar patients in the future. By reckoning with the challenge of juggling multiple roles, and the impacts of workplace trauma exposure and moral injury, the ethicist creates resources and relationships to provide greater psychological safety and mutual support, ensuring the sustainability of her work in ethics consultation for years to come.

The case of Ms. Sykes demonstrates some of the ethical challenges that arise in determining whether a patient should be eligible for an advanced therapy, specifically a ventricular assist device (VAD). Ms. Sykes was in advanced heart failure and denied the VAD by the eligibility committee. The denial was out of concern that she lacked the requisite social support at home, as she had told the team her husband was medically abusive and neglectful. While some members of the team did not believe her reports, others were concerned she was being "doubly victimized" by the husband and then by not receiving the only advanced therapy available to her. Ethics was called to assist the team based on this tension. The haunting aspects of the case are relayed by a clinical ethicist who was early in her career and a senior clinical ethicist who was acting as her mentor at the time. The fairness of the eligibility decision, as well as the appropriate role boundaries of clinical ethicists, are central to what they find haunting.

Moral distress as a reason for ethics consultation is common, but perceived or real racism is underrecognized as a potential cause. The consultation requested in this case was nominally for moral distress, but elements of cultural misunderstanding and culturally relevant value conflicts rapidly became apparent. Cultural concordance between the ethics consultant and the patient’s family enhanced communication and allowed the medical care team to change their perspective on interactions they had observed and previously considered to be belittling between family members and staff. This led to a broadening of medically permissible options being considered and ultimately resulted in a discharge plan that was acceptable and welcome by both the patient’s family and the ICU staff. Further discussion of reasons why greater diversity in ethics consultation members may be helpful.

This chapter illustrates a challenging clinical ethics case involving a twenty-something trauma patient experiencing dysphagia who declined recommendations for artificial nutrition and wanted to be allowed to take food and fluid by mouth. Capacity assessment was complicated by disagreements over clinical facts. The Ethics consultation process was impacted by limited consultant bandwidth and lack of institutional support. Moral distress was experienced by many team members including clinical ethicists who found themselves wondering how this consult went wrong, and whether withholding food from a decisionally capable patient was in fact within the rights of the healthcare team.

The authors discuss haunting aspects resulting from a request for ethics consultation to support surrogate decision-maker authorization of long-acting reversible contraception in an individual with disabilities. The authors highlight the ethical tension between procreative freedom and equitable access to contraception, particularly noting ableism underlying each side of the argument. Bringing in prior case law, the authors favor a least-restrictive approach to contraception to best preserve the individual’s reproductive rights.

The narrative of the chapter explores haunting aspects of a patient’s inability to participate in capacity assessment due to communication challenges and generalized weakness. Through relying on prior wishes and historical context provided by the surrogate decision-maker, the ethical analysis presented by the authors demonstrates expressed concern with the surrogate decision-maker’s request for long-acting reversible contraception. As the consultation progresses to the patient’s assent to an informal arrangement of supported decision-making, each author shares their professional reflections on issues including equity, diversity and inclusion with a keen focus on ableism in the care of individuals with disabilities. While it may be legally permissible as well as ethically supportable to permit for surrogate decision-maker authorization of long-acting reversible contraception through supported decision-making, the authors grapple with whether the decision honored the patient’s values.

There is little written about ethics consultation in a post-acute environment. Applying ethics consultation expectations from the acute care world would be a disservice to the healthcare continuum and those that support the homecare environment. This chapter aims to expose the challenges that face those caring for patients as guests in their home, in order to open a much-needed dialogue and opportunity for bidirectional learning that ensures these voices are represented. A home-based hospice team requests an ethics consult for a patient that they deem is "unsafe" for the staff to continue to care for. Staff distress arose in a recent joint visit with nursing and social work when there were persons who were described as being aggressive. This case consult went sideways very quickly. The leadership for the team caring for the patient came with a preconceived notion of the outcome and verbalized feeling untrusted by the ethics committee. Similarly, the ethics committee was divided on the case and committee members verbalized “giving up” when a consensus could not be reached. Members of the ethics committee reflect on the various haunting aspects - both individually and collectively - and the need to balance patient rights and staff safety in a post-acute environment. This case brought about significant organizational changes in ethics consultation, which are shared with the reader.

How much do we care when no one is looking? A patient with critical injury and vulnerable to bias—as an uninsured Person of Color experiencing homelessness and social isolation, with a history of mental illness and drug use— experiences barriers to receiving necessary treatment and standard care. When a patient is unable to ask for help, and has no family member or friend to help, what standard of care can they hope to receive? Can the quality of care provided to unrepresented patients represent a hospital’s culture of care? The writer wonders whether to “stay in my lane” and focus only on the ethical question prompting consultation, or if the principles of beneficence and nonmaleficence justify speaking up about substandard care. To mitigate the risk of acting as the “ethics police” by engaging in micromanagement of patient care, the writer describes efforts to expand ethics’ scope to change systemic and cultural attitudes by establishing preventative measures to identify and combat bias and preemptive judgments of futility.

An ethics consultation case is presented in which a hospice patient wished to deactivate his Cardiovascular Implantable Electronic Device (CIED), specifically an implantable cardioverter-defibrillator, at the end of life to prevent the prolongation of the dying. The consultants developed an ethical analysis supporting the deactivation of the pacemaker based on authoritative literature and moral reasoning. The consultants’ recommendations to deactivate the pacemaker were ultimately rejected by the medical team based on an alternative assessment which concluded the patient is suicidal, doubts based on the consultants not being physicians, and the healthcare professionals’ sense that deactivating a pacemaker is different from withdrawing other forms of life-sustaining treatment at the end of life. Professional reflections by the consultants and lessons learned are discussed.

Jane was in imminent danger of an impending thyroid storm from her goiter and was experiencing intermittent psychosis. The clinical team was focusing on capacity evaluations as they found Jane to be angry, hostile, and difficult, and believed an involuntary hold was necessary as she was not consistently consenting to the surgery and trying to leave. As soon as Jane had the thyroidectomy she would return to her baseline as if nothing had happened. When I was training, I shared with a few close colleagues and mentors my nervousness about how I would be received as a clinical ethicist. I was cognizant that there would be some patients who may not appreciate my disability or see it as of value. In reality, Jane had a big ally in me and my disability helped me untangle some aspects of the case in a way that validated her experience. Nonetheless, clinical ethicists have a responsibility to actively assess and check for implicit bias within ourselves. As we caution our clinical colleagues not to be paternalistic in their practice, we, too, must not be paternalistic in ours.