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In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author describes an 83-year-old woman with dementia who sustained jaw and other minor fractures post motor vehicle accident. A DNR order was written by the trauma surgeon upon her arrival. Her attending still decided to put her on oxygen (nasal cannula) because she was struggling to breathe and jaw surgery was planned. The patient’s daughter supported comfort care based on substituted judgment, but nurses were skeptical of her motives. A nurse refused a physician’s order to discontinue oxygen and begin comfort care and the author was called again. The author reflects on the responsibility of ethics consultants in patient outcomes, self-doubt, and the case’s unsettling impact on the author.
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.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author addresses the unassailable, sometimes unmentionable, common thread of deep-seated values and cultural or religious beliefs that serve as a core set of values that can define and certainly do surround us. In bioethics consultations, the process often serves as a deep dive into what is deeply embedded at the center of our behaviors, uncovering cultural, religious, or even family-held norms that underlie our individual sense of place and identity in the world around us. As ill health and disease destroy patients’ sense of autonomy and self-reliance, our core values become more apparent, and we cling more to them in efforts to exercise our will. This fact alone makes the reflection of these core values essential within ethics consultation process because they are defining for many of us. The commentary takes a deep dive into the chapter’s four haunting ethics cases centered around culture and religion and the ethical challenges that they reflect.
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.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author reviews four pediatrics cases, emphasizing the importance of honoring parental authority and encouraging greater investment in education to reduce bias and injustices in the clinical setting. Social and cultural identities and circumstances should be treated with more care and respect in the clinical realm, so that curiosity and empathy are front and center. The author specifies how equity and inclusion could have been enhanced in each case and provides a direction for future clinical ethics practice.
In this chapter in Complex Ethics Consultations: Cases that Haunt Us, the author describes a 6-week-old with an anoxic brain injury and poor prognosis whose parents requested continued ventilation when comfort care was recommended. Eventually, parents wanted to bring the child home but declined a tracheostomy, leading to court intervention. Parents accepted a trach, but experienced conflicts with home nursing, which they eventually declined. Two weeks later the baby was admitted with sepsis. Like many other parents caring for medically complex children, they were overwhelmed. The author is haunted by the impact of his own insecurities on the ethics consultation, his decision not to meet with the family, and the worry that he did not do enough.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author explores the misunderstandings that can arise when there are no good options but a decision must be made. Zaner discusses the complex emotions faced by a pregnant woman carrying a fetus at 22 weeks gestational age and neural tube defect. She is referred to the maternal-fetal unit. She faced a decision about whether to terminate the pregnancy based on uncertain information and a two-week deadline to make a decision. The author reflects on the ethical dimensions so many parents face when either decision is irreversible and information is tenuous, but a treatment decision must still be made.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author recounts a case from 1997 when the idea of "altruistic" organ donation was less accepted. The author provides insights into the deliberation during this period and the continued evolution and change of medical systems views of the control of bodies.
In this chapter of Complex Ethics Consultations: Cases that Haunt is, the author describes the request of a middle-aged patient with COPD for terminal ventilator withdrawal. The consult occurred soon after the author began working at a Catholic hospital. The patient’s husband objected to withdrawal, despite the fact that the patient had reasonable capacity and could mouth or write. The attending physician said he would not withdraw treatment if "there was disagreement" in the family. Upon questioning, the patient reiterated her wishes and said the team should not abide by his wishes and did not want him involved in the decision if he was objecting to her request. A week later, still on the ventilator, she declined SNF placement and her distraught husband wanted transfer. Suspicions about her husband gained traction on the unit. The author offers advice and insights for new ethics consultants. She was haunted by her inexperience, her doubt whether she was assertive enough, the narrative around her husband’s suitability as a surrogate, and some of the staff’s admonition that the consultant did sufficiently advocate for the patient.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the authors describe a 24-year-old patient with C-3 spinal cord injury resulting in quadriplegia and ventilator dependence. He is admitted from a nursing home with multiple serious pressure ulcers. No family or friends who offered him support and companionship. With full decision-making capacity, he declined turning and dressing changes for up to a week. His ulcers were worse and a foul odor emitted from his hospital room. He wanted to live, not risk dying though his choices were doing just that. The ethics consultant negotiated a "Ulysses contract," stipulating that dressing changes and turning would occur once a day and his objections would not be honored. The patient agreed. The authors reflect on the ethical, professional, and haunting conundrum that arose due to this contract.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author describes a 14-year-old girl who presents with an ectopic pregnancy. She and her family are immigrants and although the girl speaks English, many of her family members do not. She fears her family would be disgraced if the news of her pregnancy is discovered and adamantly declines suggestions to enlist her mother. The author was asked about the permissible bounds to deceive the patient’s mother in order to protect the adolescent’s confidentiality. The patient might need help with the medication and clinical follow-up. The mother was told they were treating the patient’s pain, but she doubted the team’s veracity. The author reflects on balancing truth-telling, adolescent autonomy, and respecting cultural values.
This chapter of Complex Ethics Consultations: Cases that Haunt Us recounts the case of a previously healthy 7-year-old whom the author saw in the emergency department. In the PICU, she was diagnosed with meningococcemia and purpura fulminas. She required ventilation, dialysis, and vasopressors. If she did not recover, she faced double upper extremity amputation, multiple reconstructive surgeries, and uncertain neurological function. Her parents requested withdrawal of life-sustaining treatment, but PICU staff thought this was too soon and inappropriate. They wanted more time, which her parents declined. Her parents relied on a faith tradition that matched the author’s. He reflects on an ethics consultation in which he recommended respecting the parents’ wishes for terminal withdrawal. The author reflects on the child’s frightened face as he reassured her in the ED that she would be fine. She wasn’t. These thoughtful parents, who allowed another day for evaluation, asked what he would do if faced with the same situation and he replied. The child died.
This chapter of Complex Ethics Consultations: Cases that Haunt Us delineates how to use the book to educate ethics committees, ethics consultants, and bioethics students at all stages of study. Detailed educational activities are outlined for ready use by teachers, students, clinicians, and ethicists. The chapter identifies cases in the book with similar themes, proving invaluable case-based educational material.
This chapter of Complex Ethics Consultations: Cases that Haunt Us begins when the ethics consultant is asked if the mother (and suspect) in a case of shaken baby syndrome should be allowed to visit her child in the hospital. After two weeks, the baby remained ventilator dependent and the baby was likely to end up in a persistent vegetative state. Questions about whether the baby was suffering plagued everyone. Assuming parental roles and affections, nursing staff wanted to protect the baby and shift to comfort care. If this were authorized by the baby’s mother, she would face homicide charges. The baby’s mother visited as a prisoner, in chains. A prison guard compassionately unlocked the chains so she could touch her baby. The consultant is haunted by the sheer misery experienced by everyone, the persistent outrage from staff that her mom might serve as surrogate decision-maker, and the enduring sound of chains.
In this case of Complex Ethics Consultations: Cases that Haunt Us, the author recounts an ethics consultation involving a 70-year-old Roman Catholic nun in the cardiac ICU after emergency bypass and mitral valve replacement. As difficult postoperative complications began to resolve, including her respiratory function, the patient indicated that she wanted all treatments stopped, but in the past she had accepted treatments after initial reluctance. She pointed to her trach, saying she wanted it to be removed. Upon questioning by the ethics consultant, her discomfort was with the tube, not the ventilator per se. Reducing the diameter of the trach tube eased her comfort and she consented to a two-day trial. She was subsequently weaned from the vent. The author reflects on professional boundaries in ethics consultations and the risk that ethics consultants can inadvertently become stewards of the "culture of death" when they make premature assumptions.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author describes a 24-year-old woman who was comatose with a devastating neurological injury after suffering a cardiac arrest soon after receiving chemotherapy for acute myelogenous leukemia. The treating team recommended discontinuing ICU level care and shifting to comfort care. The patient’s mother declined, saying this course of action did not align with the patient’s and her Islamic faith and requesting transfer, which was impossible due to the patient’s medical instability. The author reflects on the culture of adult medicine, in contrast to her pediatric practice. She is haunted because she worries she did a good job as an ethics consultant but was lacking as a physician. This case raises the complexities of the dual role some consultants play as clinicians and ethics consultants.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the authors describe a patient in her twenties who had a left ventricular assist device implanted in an acute circumstance to save her life before completing a heart transplant evaluation. After being delayed for being placed on the transplant list because of nonadherence to appointment, the patient asked for the device to be shut off, which would result in her death. The authors reflect on better ways to support patients in these circumstances.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the authors explore care for a patient with history of being abused, borderline personality disorder, substance use disorder, and a complex psychiatric history who was labeled by staff as a "hateful patient." He presents frequently after self-harming, requiring surgery and short-term psychiatric treatment. Complex behavioral issues and erratic acceptance of nursing and medical care led to staff frustration and unprofessional chart notes. Transfer to a long-term treatment setting was difficult to negotiate. Several months after discharge, the patient died. The authors are haunted by the patient’s desperation and deep loneliness. He wished he could remain hospitalized where he felt cared for. Authors wondered what more could have been done to help him.
Clinical ethics consultations can be haunting. Ethics consultants have few opportunities to reflect on the affective impact of their work. This book offers detailed cases, confessions, reflections, regrets, and triumphs experienced by ethics consultants. The authors bravely share what haunts them about the complex and demanding work of ethics consultation. Consultants experience moral distress but it’s rarely discussed. Our values are woven into the consultation. We’re not always sure if this is for better or worse. One poignant case may haunt us for our entire career. The second edition of the book includes the cases written by original authors regarding neonatology, pediatrics, palliative care, psychiatry, religious and cultural values, clinical innovation, professionalism, and organizational ethics. The book includes educational activities for ethics committees, consultants, and students at all levels of study. In the second edition, new authors reflect on clinical ethics practice, highlight how our practices have changed, and reflect on equity and diversity dimensions of patient care and ethics consultations.
In this chapter of Complex Ethics Consultations: Cases that Haunt Us, the author discusses a dying patient’s adult children in disagreement about a care plan. The issue of when home herbal remedies can be provided for a patient was central to the discussion. In addition, the ethics consultant had family members see a counselor to attempt to resolve their dispute, which is not a common approach.