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.

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.

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.

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.

Clinicians have a duty to care for patients whose injuries or illness may appear self-inflicted. However, in some cases, the self-inflicted element of these injuries makes this care especially difficult. Repeated self-inflicted injuries raise ethical dilemmas including issues of allocation of scarce resources, how to justly care for patients in the context that led them to self-injury, so-called "care contracts" with patients, and whether it is ever appropriate to violate a patient’s autonomy to protect them from further self-harm (either during acute recovery or long-term). They also raise issues of frustration for caregivers seeing patients at medical risk that feels avoidable, and caregivers who feel that by providing immediate medical care they are likely not addressing the root of the problem for the patient.

We examine these issues via a clinical ethics case study of a patient representing a case of Repeated Foreign Body Ingestion (RFBI). RFBI occurs among a small number of patients, but occurs frequently for those affected, and often requires emergency surgery to resolve. In many cases, RFBI is extremely dangerous for patients who experience it, and caregivers find themselves haunted by wondering what they could have done differently for patients when the RFBI does repeat.

When a patient is developmentally and intellectually disabled, nonverbal, never competent, without a legal guardian; who speaks for him when urgent medical care is needed? In this case, a twenty-five-year-old patient with a mental age of two presented with a history of frequent bowel obstructions and constant abdominal pain with feeding. Upon admission, he was physically restrained and sedated to enable the treatment team to provide tube feeding. The treating physician requested an ethics consult, asking whether artificially nutrition should be continued, and who should make this decision? His biological parents relinquished him at birth. A foster family provided care for twenty-five years but could no longer manage his care. The state caseworker could not make medical decisions. The patient did not have a legal guardian, and urgent medical decisions needed to be made. The Ethics Committee along with many key stakeholders, gathered to discern this morally complex case. After much discussion, a recommendation was made to discontinue artificial nutrition and provide comfort care. This recommendation was grounded in a best interest standard. The treatment team agreed with the recommendation. Following consultation with the biological and foster families, feeding was discontinued, and the patient died.

A sixty-nine-year-old man with severe necrotizing fasciitis in the setting of a newly diagnosed, metastatic cancer is transferred from an outside hospital for further evaluation of treatment options, including surgical debridement. His family indicates he is a member of a small, adherent religious community that holds the belief that all life-sustaining measures should be pursued and that any breath he takes constitutes meaningful life, even if it causes severe suffering. The patient’s altered mental status due to brain metastases prevents him from verbally communicating with the team, but he intermittently tracks movement of the healthcare team and grimaces in response to painful stimuli. This case narrative explores surgical ethics and moral distress evoked by this haunting case, with analysis from a consulting clinical ethicist who supported communication with family about treatment options and a clinical ethicist who provided guidance on code status and led nursing ethics rounds with the care team.

The patient presented at night. She was at forty-two weeks gestation, in stalled labor, with fetal heart rates in prolonged deceleration. Due to the hour, no records were available from the outside facility where she said she had received prenatal care. An urgent cesarean section was recommended, but she refused. Her husband was passively supportive of her decision. There were some concerns about mental illness, but no clear history was known to the team. Over the next several hours, the obstetric team attempted to respectfully persuade her to accept the cesarean as the fetus was in very serious distress. An ethics consult was requested. The patient acknowledged that her baby could die or suffer grave damage but felt doctors are too eager to deliver by c-section and that the baby would be fine. She also said she would be so traumatized by a cesarean that she did not think she could bear it.

The team considered whether the patient had decision-making capacity and what could be done to assist the fetus without harming the mother. The ethicist questions whether she could have done more to balance the competing vulnerabilities in this case.

Clinical ethics prides itself on communication, collaboration, interdisciplinary cooperation and mediation. But what happens when all those skills and efforts fail? This chapter describes a difficult situation fraught with clinical uncertainty and complicated by an unbridgeable cultural divide that left the clinical parties feeling as if they failed the patient. This case demonstrates that sometimes there is no real closure, no understanding, and no sense of having been helpful. These are the kinds of cases that haunt us.

How can ethics consultants weigh and balance patients’ physical and psychological needs when they are appear mutually exclusive? How might a disability-aware lens impact the way we address risk? A disconcerting clinical ethics consultation regarding "Jimmy" prompts reflection of these questions and our own complicity with ableism as consultants and providers. Jimmy, who was previously incarcerated, houseless, and facing mental status changes, spent months fighting four-point restraints to maintain a cervical collar meant to prevent disability and death.

The predominant paradigm of acute medical care has not integrated trauma-informed or disability aware lenses despite trauma prevalence among patients and the presence of disability for 25% of adults. The lack of these perspectives has hazardous ramifications in clinical decision making and beside care. The prevailing norm prioritizes physical and functional outcomes over identity and emotional well-being. There is a false assumption that people with disabilities have a worse quality of life than people without disability. This disability illiteracy undermines patient autonomy and the disability community. Medical professionals’ personal experience and relationship to disability can perhaps shift this perspective to a more inclusive and nuanced approach to ethical decision making A broader transformative approach to ethics consultation is needed to avoid complicity in moral harms.

In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the, the author reflects on change in practice in end-of-life care and ethics consultation since the publication of the first edition. As society becomes increasingly diverse, it is important that clinical ethicists recognize that principlism and Western concepts of ethics do not serve all of the needs of the diverse populations and communities that seek care. These cases encourage us and others to stop, pause, and be curious. More often than not, we have time to foster dialogue, thoughtfully explore the consequences of potential pathways of our actions and give respect to the weightiness of death.

In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author encounters a 50-year-old woman who is requesting her arm be amputated to alleviate her complex regional pain syndrome. This is not a usual indication for an amputation, but a surgeon is willing to offer the procedure. The author attempts to bring about clarity even in the face of uncertainty. Moral distress played a substantial role in the consultation.

The chapters in this Part VII of Complex Ethics Consultations: Cases that Haunt Us are a powerful reminder that healthcare ethics consultation does not involve clinical ethics consultation alone. Organizational ethics issues can also weigh heavily on healthcare providers causing deep moral distress. The four chapters in this section reinforce enduring themes, but time and experience allow a reexamination. The first theme is the lesson of truth-telling, error disclosure, and organizational responsibility. The second is the importance of transparency in organizational decision making along with the importance of communication and coordination of care. These themes are explored in the part they played in real cases, looking at the lessons they teach; current dilemmas; the role of diversity, equity, and inclusion; and finally, the meanings for future practices. As the field of ethics consultation progresses, so too will moral distress and the need for the profession to protect its practitioners, as well as the ethicists to emotionally protect themselves. The successful future practice of ethics consultation depends on it.

In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author discusses how the four cases in Part VI remain relevant as medical science continues to provide clinical innovations and as patients and their families research and request unorthodox treatments. Considerations about the limits of autonomy, moral distress, and the role of medical advocacy continue to be discussed and debated today as they were when these cases were originally written. However, ethics consultation as a practice has evolved to include awareness and inclusion of cultural context and equity as important factors that can inform decision making, and ensuring more comprehensive consideration of these features in all consultation work should be a goal as medical science progresses.

The series of cases discussed in Part III are humbling reminders of how intertwined our patients and their support systems are with healthcare practitioners. TJ, Jimmy, Mrs. Blue, and Mrs. Winthorpe all have unique experiences in different corners of the healthcare system. Each case touches on the familiar experience of a healthcare team identifying what they believe is in the best interest of patient, and there being a factor, often the patient themselves, complicating that coming to fruition. Their experiences, and different experiences of privilege and power, or disempowerment are salient elements of their stories. These “haunting” and morally distressing cases are revisited with an additional lens of diversity, equity, identity, and bias and considerations for how ethicists might more fully integrate these critical perspectives into ethics consultation.