Extracorporeal membrane oxygenation (ECMO) is typically viewed as a time-limited intervention—a bridge to recovery or transplant—not a destination therapy. However, some patients with decision-making capacity request continued ECMO support despite a poor prognosis for recovery and lack of viability as a transplant candidate. In response, critical care teams have asked for guidance regarding the ethical permissibility of unilateral withdrawal over the objections of a capacitated patient. In this article, we evaluate several ethical arguments that have been made in favor of (...) withdrawal, including distributive justice, quality of life, patients’ rights, professional integrity, and the Equivalence Thesis. We find that existing justifications for unilateral withdrawal of ECMO support in capacitated patients are problematic, which leads us to conclude that either: (1) additional ethical arguments are necessary to defend this approach or (2) the claim that it is not appropriate to use ECMO as a destination therapy should be questioned. (shrink)

Efforts to professionalize the field of bioethics have led to the development of the Healthcare Ethics Consultant-Certified (HEC-C) Program intended to credential practicing healthcare ethics consultants (HCECs). Our team of professional ethicists participated in the inaugural process to support the professionalization efforts and inform our views on the value of this credential from the perspective of ethics consultants. In this paper, we explore the history that has led to this certification process, and evaluate the ability of the HEC-C Program to (...) meet the goals it has set forth for HCECs. We describe the benefits and weaknesses of the program and offer constructive feedback on how the process might be strengthened, as well as share our team’s experience in preparing for the exam. (shrink)

As a practicing clinical ethicist at a major teaching hospital, I found it reassuring to learn that ethics consultation activity has increased overall. However, it was disheartening to see tha...

Developing a care plan in a critical care context can be challenging when the therapeutic alliance between clinicians and families is compromised by anger. When these cases occur, clinicians often turn to clinical ethics consultants to assist them with repairing this alliance before further damage can occur. This paper describes five different reasons family members may feel and express anger and offers concrete strategies for clinical ethics consultants to use when working with angry families acting as surrogate decision makers for (...) critical care patients. We reviewed records of consults using thematic analysis between January 2015 and June 2016. Each case was coded to identify whether the case involved a negative encounter with an angry family. In our review, we selected 11 cases with at least one of the following concerns or reasons for anger: perceived or actual medical error, concerns about the medical team’s competence, miscommunication, perceived conflict of interest or commitment, or loss of control. To successfully implement these strategies, clinical ethics consultants, members of the medical team, and family members should share responsibility for creating a mutually respectful relationship. (shrink)

The development of ethical guidelines and regulations regarding human subjects research has focused upon protection of vulnerable populations by relying on a limited typology of vulnerabilities. This results in several challenges: First, Institutional Review Boards struggle to interpret and apply the regulations because they are often vague and inconsistent. Second, applying the regulations to subjects who fit within multiple categories of vulnerability can lead to contradictions and the rejection of research that would be permissible if only one category were applicable. (...) Finally, some potential subjects have social and other context-based vulnerabilities that are not described in the federal regulations... (shrink)

Throughout its fifty-year history, the role of the medical humanist and even the name “medical humanities” has remained raw, dynamic and contested. What do we mean when we call ourselves “humanists” and our practice “medical humanities?” To address these questions, we turn to the concept of origin narratives. After explaining the value of these stories, we focus on one particularly rich origin narrative of the medical humanities by telling the story of how a group of educators, ethicists, and scholars struggling (...) to define their relatively new field rediscovered the studia humanitatis, a Renaissance curriculum for learning and teaching. Our origin narrative is composed of two intertwined stories—the history of the studia humanitatis itself and the story of the scholars who rediscovered it. We argue that as an origin narrative the studia humanitatis grounds the medical humanities as both an engaged moral practice and pedagogical project. In the latter part of the paper, we use this origin narrative to show how medical humanists working in translational science can use their understanding of their historical roots to do meaningful work in the world. (shrink)

Illness narratives convey a person’s feelings, thoughts, beliefs, and descriptions of suffering and healing as a result of physical or mental breakdown. Recognized genres include fiction, nonfiction, poetry, plays, and films. Like poets and playwrights, musicians also use their life experiences as fodder for their art. However, illness narratives as expressed through popular music are an understudied and underutilized source of insights into the experience of suffering, healing, and coping with illness, disease, and death. Greater attention to the value of (...) music within medical education is needed to improve students’ perspective-taking and communication. Like reading a good book, songs that resonate with listeners speak to shared experiences or invite them into a universe of possibilities that they had not yet imagined. In this article, we show how uncovering these themes in popular music might be integrated into medical education, thus creating a space for reflection on the nature and meaning of illness and the fragility of the human condition. We describe three kinds of illness narratives that may be found in popular music (autobiographical, biographical, and metaphorical) and show how developing skills of close listening through exposure to these narrative forms can improve patient-physician communication and expand students’ moral imaginations. (shrink)

This essay proposes an expansion of the concept of narrative competence, beyond close reading, to include two more skills: the collaborative construction and compelling performance of stories. To show how this enhanced form of narrative competence can be attained, the essay describes Off Script, a cocurricular medical storytelling program with three phases: 1) creative writing workshop, 2) dress rehearsal, and 3) public performance of stories. In these phases, Off Script combines literary studies, creative writing, reflective practice, collegial feedback, and drama. (...) With increased narrative competence, Off Script participants are likely better equipped to engage in more impactful health advocacy and partner with patients more effectively. (shrink)

Mrs. Duong had coronary artery disease, ischemic cardiomyopathy, and mildly altered mental status when her case was presented before an advanced heart therapy medical review board. She was accepted for left ventricular assist device placement pending additional insight into her cognitive state. Before the LVAD could be implanted, however, Mrs. Duong went into cardiogenic shock, and her heart failure team placed an intra‐aortic balloon pump in her subclavian artery. Within two weeks, Mrs. Duong became IABP dependent and deconditioned. The attending (...) deemed her as lacking capacity to make complex medical decisions, and the medical review board officially declined her for LVAD placement. The heart failure and CICU teams feel that Mrs. Duong is not being helped by the care they are giving her. They recommend terminal weaning of the IABP and initiation of comfort care. Her family disagrees, pointing to activities like continued eating and interacting with family. At an impasse after yet another family meeting, the attending for the heart failure team asks the clinical ethics consultant, “Do we have to replace the balloon pump when it fails?”. (shrink)

Understanding a patient’s story is integral to providing ethically supportable and practical recommendations that can improve patient care. Important skills include how to elicit an individual’s story, how to weave different narrative threads together, and how to assist the care team, patients, and caregivers to resolve difficult decisions or moral dilemmas. Narrative approaches to ethics consultation deepen dialogue and stakeholders’ engagement to reveal important values, preferences, and beliefs that may prove critical in resolving care challenges. Recognizing barriers to narrative inquiry, (...) such as patients who are unable or refuse to share their story, is also important. In this article we offer specific steps and guidelines that ethicists can follow to systematically elicit and construct patients’ stories. We provide a case example to illustrate how a narrative approach to ethics consultation illuminates salient ethical issues that may otherwise go unnoticed. We argue that this approach should be part of every consultant’s tool kit. (shrink)