AbstractDoes the principle of nonmaleficence in medicine need updating? And if so, what should such an updating look like? This article engages with these questions by critically discussing the relation-centered view of nonmaleficence presented by Christopher Crenner and Skylar Bird. It contends that an adequate account of the principle must do two things: It must establish the integrity of the principle as one that is distinct from the more general principle of beneficence, and it must show it to have sufficient content to warrant its inclusion as a fundamental principle in clinical medical ethics. The proposal to focus on relational harms in the medical relationship is a good one, but such a proposal must be integrated into a more comprehensive account of the principle of nonmaleficence. This more comprehensive account relates relational harms to medical professionalism and derives the content of the principle of nonmaleficence from the standards of acceptable medical practice. After clarifying this more comprehensive view of medical nonmaleficence, the article concludes by responding to an important autonomy-based objection to it. This response raises large and difficult questions about the nature and point of medical practice in modern societies.
AbstractThis article argues that the ethical principle of nonmaleficence, to "do no harm," has become conceptually thin. Harm in medical settings is ubiquitous and typically in balance with beneficent intent, making nonmaleficence subsidiary to beneficence. Other independent applications of nonmaleficence have lost some of their original force. We propose to expand the conventional concept of nonmaleficence to add the obligation and the goal to avoid harm to the medical relationship. We offer scenarios demonstrating how connecting nonmaleficence to the ethics of care and relational autonomy helps to address key weaknesses in conventional principlism. We pose these relational obligations in prohibitory form because optimal clinical relationships remain context dependent, varying by setting and condition. In addition, this reframing of nonmaleficence foregrounds the risk of relational harm posed by an increasingly fragmented and compartmentalized medical realm that still relies heavily on trust, open communication, and confidentiality between clinicians and patients.
AbstractWhether and how patients should participate in clinical ethics discussions is an important contemporary debate. Murdoch recently reported clinicians' and ethics service members' views from England and the United States on patient participation in ethics consultation. In response to the call for further understanding, we report parents' and clinicians' experiences of active parental and child involvement in ethics case reviews (ECRs), including the then-novel use of videoconference ECRs during the pandemic in a UK tertiary children's hospital. Between January 2018 and May 2023, parents attended 59 of 85 hospital ECRs and provided positive anecdotal feedback. To better understand their perspectives, we interviewed three families (two couples and one single parent) and four clinicians involved in ECRs, conducted via videoconference because of pandemic restrictions, between March and December 2020. All reviews concerned proposals for innovative COVID-19 therapies. Reflexive thematic analysis identified six themes: (1) parental presence at ECRs is essential; (2) preparation is vital; (3) ECRs support complex decision-making; (4) videoconferencing worked well, although choice of format is important; (5) ECRs offer wider benefits; (6) the ECR process was generally smooth but could still be improved. Although this evaluation focused on videoconference ECRs during the pandemic, the findings remain relevant to current debates. Unlike Murdoch, we found that both parents and clinicians highly valued ECR and supported active participation by parents and, where possible, children and young people. However, we agree that clear guidance is needed to support patients' involvement in ethics processes, including preparation and support that promote inclusive, effective reviews.
AbstractObjective: To explore parents' understanding of clinical ethics consults, what might influence their openness to an ethics consult in the future, and what they define as medical ethics. STUDY DESIGN:Electronic survey of parents of children with complex medical conditions. Questions were adapted from a study of adult patients' and family members' experiences of ethical concerns in the healthcare setting. Respondents were also invited to participate in subsequent interviews. RESULTS:We surveyed 218 parents and interviewed 28. Most respondents (63%) were not familiar with ethics consults and did not know how to request one (88%). For those reporting interest in a future ethics consult, knowing more about how ethics consults could help (71%) and a doctor's recommendation (58%) would most influence their interest. Hesitancy in speaking with an ethics consultant most often stemmed from worry that their child/family would not be understood (77%). Parents defined "medical ethics" as relating to serious medical conditions (67%), communication with the medical team (61%), and goals of care (57%). Interviews demonstrated generally consistent themes with the survey. CONCLUSIONS:Pediatric ethics consultation is not a commonly recognized or utilized resource for families facing medical complexity and ethical challenges. More needs to be understood about how best to meet patient and family needs via ethics consults.
AbstractOrganizational ethics (OE) in healthcare has gained prominence, particularly during the COVID-19 pandemic. This article provides detailed guidance for establishing OE services and conducting OE consultations, drawing on examples from Seattle Children's Hospital. We define OE, compare it with clinical ethics, and describe consultation processes and procedures. Examples illustrate OE's role in guiding institutional decisions, promoting equity, and managing resource constraints. We conclude with recommendations for OE program development and integration.
AbstractAn emerging area of interest in healthcare ethics consultation (HEC) is the potential for moral injury and trauma to surrogate decision makers (SDMs). Introduced by Anani, Lanphier, and Fiester, trauma-informed ethics consultation (TIEC) recognizes that these encounters frequently involve exigent circumstances and the stressful misalignment between the provider's goals and the expectations of SDMs. Moral injuries sustained in HEC can be intensified by perceived feelings of mistrust, fear, betrayal, and failure. Recognizing signs of emotional, physical, and mental distress resulting from prolonged exposure to anxiety can create opportunities for redirection or referral. This article builds on the contributions of Anani, Lanphier, and Fiester by examining a specific kind of moral injury that is likely to be encountered in HEC and the process by which injuries may develop into post-traumatic stress disorder (PTSD). By narrowing the definition of moral injury and distinguishing between fast and slow trauma, it will be argued that trauma arising in HEC is more closely aligned with slow trauma characterized by a cumulative cognitive burden leading to psychological decompensation and identifiable clinical breakpoints. Different from sudden or violent trauma, associated with PTSD, slow trauma is linked to complications of post-traumatic embitterment disorder (PTED); these have separate pathologies with different causes, clinical presentations, and treatment strategies. The pathophysiological model of slow trauma proposed in this article seeks to elucidate a more nuanced understanding of how moral injury, the effects of unrecognized cumulative stress, and risk factors for emotional and cognitive dysfunction can lead to a richer dialogue in TIEC.
AbstractEthics resources have the potential to help parents of children with medical complexity understand and navigate ethics concerns relevant to their child's care. This study conducted 28 semi-structured individual interviews with parents of children with chronic critical illness to learn about current ethics resources use patterns. Parents universally attested to encountering ethics concerns relevant to their child's care. These parents described ethics resources as helpful for navigating ethics challenges, including obtaining information, clarifying goals, advocating for access, and improving relationships. Parents described relying on lay (relational and experiential) resources not informed by ethics-specific guidance when facing ethics challenges. The majority of parents (93%) do not recall the treatment team using, referencing, or sharing ethics-relevant resources. Parents described wanting ethics resources and recognized the current lack of accessible ethics-specific resources.
AbstractMany pediatric bioethics committees were formed in the wake of the infamous "Baby Doe" cases of the early 1980s. In this article, we review a historical cohort of pediatric ethics consultations at our institution from 1984 to 2007 and compare them to more modern reviews of pediatric ethics consultation. In our sample, the majority of consultations (87%) involved limitation of life-sustaining treatments, whether by do-not-resuscitate orders, withholding of further interventions, or withdrawing of interventions. A minority of consultations (23%) involved disagreement between the family and the care team. Comparison to modern cohorts of pediatric ethics consultation suggests that the predominant case type has changed over time.
AbstractResearchers who focus on the ethical, legal, and social implications (ELSI) of genetics have tried to anticipate and mitigate the unique risks of genetic testing. To that end, ELSI scholars have focused on the unique predictive power and the subtle ambiguities of genetic test results. Much of this work has assumed that genomic results accurately predict future health problems and has considered the implications of these accurate predictions for the benefits and harms that may result from access to such test results. In this article, we consider a different type of risk-a type of exceptionalism we term "genetic bias." Genetic bias occurs when genomic results have uncertain implications but are perceived as more accurate and accurately predictive than is warranted. Such bias can lead to inappropriate clinical decisions. Specifically, if the genomic results are thought to be more definitive than they really are, they may lead to undue limitations in care. We explore genetic bias through the lens of neonatology, where burgeoning use of genetic testing routinely impacts everyday medical decision-making. Our concerns are supported by preliminary evidence that both neonatologists and parents harbor genetic biases. We examine the implications of this bias and suggest ways that the detrimental effect of such biases could be mitigated.
AbstractThis case series presents three instances where care teams grappled with how to reconcile the two ethical principles of beneficence and patient autonomy when incapacitated patients actively resisted life-sustaining treatment. Readers are invited to consider how differences in patient demographics, psychiatric comorbidities, urgency and duration of recommended medical interventions, and clinical contexts impacted clinical decision-making and outcomes in each case. Physicians should consider the risks and benefits of proposed interventions, including the risks of the means necessary to force interventions in nonassenting patients, and include these factors in consent discussions with patients' legal next of kin. Physicians should also reflect on how their own potential biases may impact what treatments they offer and when, and they should seek consultation with hospital ethics committees when members of the care team have differing views on how best to proceed with patient care. Momentary capacity assessments should not be universally applied in evolving clinical scenarios when risks versus benefits of proposed interventions rapidly shift, nor should lack of availability of next of kin prevent emergent lifesaving treatment or interventions that could restore a patient's capacity and ability to have more nuanced discussions about the long-term care trajectory.
AbstractIdiopathic normal pressure hydrocephalus presents distinctive ethical challenges, since its treatment requires lifelong device-based therapy in the setting of diagnostic and prognostic uncertainty. Although randomized controlled trials and pooled analyses demonstrate that cerebrospinal fluid shunting can substantially improve gait, and often continence and cognition, outcomes remain variable, and complications requiring revision occur in a significant minority of patients. These realities complicate informed consent, capacity assessment in cognitively vulnerable older adults, and just allocation of neurosurgical resources. Employing principlism, this article argues that clinical uncertainty should not preclude intervention but rather be governed through structured processes. These include a comprehensive consent framework incorporating surrogate decision-making when appropriate, an explicit discussion of shunt nonresponsiveness and revision probabilities, a transparent device selection policy, and guaranteed access to postoperative follow-up and programmable shunt adjustment. This article proposes a practical checklist for neurology and neurosurgery that balances beneficence with nonmaleficence, advances equity for geriatric populations, preserves the possibility of substantial functional recovery, and honors both patient autonomy and responsible resource stewardship.
AbstractIn this issue of The Journal of Clinical Ethics (JCE), two studies identify a so-called critical "disconnect" in the discourse between parents and ethics consultants seeking an optimal outcome regarding children. Parents, these authors report, lack specific ethics-informed resources geared to their understanding as lay people that would enable them to advocate effectively for what they think and feel is best for their children and thus what they also want most. These authors call for new materials to be written, especially for these parents. These might be best conceptualized as "primers" for these parents. This piece, then, is not like the usual initial article that expands on one or two articles also in the issue. Rather, it is written for parents but includes recommendations for ethics consultants and other providers related to the many disparate discussions intended for parents. These include the limits of ethics and ethical expertise, the disability paradox, mutual pretense, selected ethical problems that arise at children's different ages, suicide, sick children's siblings, and parents' own grief. This primer, written in response to the above studies' call, is an initial effort that hopefully will be followed by others and may serve as a model for these future endeavors.
AbstractIn the article "Slow Trauma: Reframing Concepts of Moral Injury in Trauma-Informed Ethics Consultation," Charles Love argues that family members are at significant risk for "moral injury and trauma" through the experience of the hospitalization of their loved ones. But Love adds an important insight about the type of moral injuries experienced by family members, distinguishing between what psychologists refer to as "fast" trauma and "slow" trauma. Love's detailed exposition of slow trauma is an important refinement of my article "TIEC, Trauma Capacity, and the Moral Priority of Surrogate Decision Makers in Futility Disputes," in which I argue that families involved in disputed futility cases have very high potential for medical traumatic stress. Love's argument is important given both the demise of family-centered care (FCC) and the weakening of family-focused trauma-informed care (TIC). While there has been myopia around family trauma over the past five years, there is a renewed acknowledgment that the harms of healthcare encounters can extend beyond the patient. Love's article is part of an emerging body of work that once again recognizes the trauma capacity of families and is attempting to reverse the regression of FCC and TIC.
AbstractEpistemic injustice is a concept capturing the way people are treated as knowers. In healthcare, epistemic injustice involves evaluation of a series of underlying knowledge-based conditions at the core of patient interactions. This article describes a case study demonstrating different forms of epistemic injustice as it manifests for Hispanic and Spanish-speaking people in healthcare settings characterized by English language dominance. The analysis provided here differentiates epistemic injustice in terms of hermeneutical injustice, testimonial injustice (including testimonial smothering), epistemic oppression, and epistemic colonialism. This discussion is tailored to provide a resource for bioethicists and clinical teams at the bedside and to advance an increased voice for patients and families in U.S. healthcare. While potential avenues for pursuing and assuring epistemic justice in healthcare systems are beyond the scope of this examination, we focus on using epistemic injustice to name oppression and opportunities for resistance in the current healthcare environment. An overview of how patients can be treated unfairly as knowers is also situated within a broader national discourse about other forms of injustice and is imperative to redress U.S. health disparities.
AbstractWhile palliative medicine has a clear mandate to address the somatic suffering of patients, it remains less clear how palliative medicine should intervene-if at all-in the management of existential suffering. We detail the case of a patient with terminal gastrointestinal cancer. Through consideration of this case, we make determinations regarding what is ethically required, as well as ways in which these implications may generalize to appropriately similar cases. Specifically, we draw two conclusions. First, standard risk-benefit calculus must be recalibrated to account for the irrelevance of certain imagined harm in imminently terminal cases. Additionally, respect for autonomy in the context of a "good death" entails respecting consistent, well-considered preferences on the part of the patient.
AbstractThis article reports on a pilot study soliciting patient and caregiver views on trauma-informed principles to influence the provision of trtauma-informed ethics consultation (TIEC). The study conducted case-based focus groups with participants (1) to assess the feasibility and efficacy of focus group methodology for collecting information to better understand and describe patient and family perspectives relevant to TIEC and (2) to analyze participant reflections so as to further conceptualize and operationalize TIEC. Overall, the case-based focus group methodology was generally effective. Findings show that patients and families conceptualize trauma-informed principles in ways that overlap with and reinforce each other. For example, safety supports inclusion, and inclusion supports a sense of safety. Preliminary thematic analysis suggests that how one may construe actions and practices as "trauma informed" in ethics consultation is influenced by the individual's identity, background, and experiences, suggesting that TIEC is an active, iterative process.
AbstractThis article explores the ethical, religious, and process complexities surrounding the use of animal-derived products in medicine, using the case of a 19-year-old Muslim patient with homozygous familial hypercholesterolemia, receiving lifesaving LDL apheresis with porcine-derived heparin. Despite the critical role of LDL apheresis to manage her high cholesterol levels over the past year, the charge nurse has recently raised concerns owing to the porcine origin of the anticoagulant used in her treatment, recognizing that this may conflict with her religious beliefs. This case raises critical questions about the disclosure of ethically sensitive information during the consent process. Should providers disclose the origin of such products, even when they are essential and no alternatives exist? Balancing respect for patient autonomy with concerns about moral distress and potential treatment refusal highlights the challenges in culturally informed care. The article examines the broader implications of these dilemmas, emphasizing the necessity of cultural humility in healthcare. While Islamic bioethics and other faith traditions may permit the use of prohibited substances in lifesaving situations, interpretations vary widely. Providers must engage patients in open, respectful dialogues to understand their individual values, avoiding harmful generalizations.
AbstractIn this piece, I address two topics, both built on articles in this issue. The first involves a new, possibly more effective approach that ethics consultants may use when they want to tell the providers consulting them that they think they should treat a patient differently. These authors call this approach "curious engagement." The second topic I discuss involves what moved the above authors to want to imagine and then propose this new approach, since what moved them may similarly move others to also want to innovate. I suggest that the best way to identify ethical practices needing improvement is to look to painful emotions experienced by oneself or others. I give two clinical examples further illustrating how providers may do this. The first involves the provider evaluating a patient for the interests of a third party, not for this patient's interests. The patient here feels frightened and alone. The second is taken from another article in this issue and involves a patient just waiting to die and experiencing existential angst. Both cases show how our looking to painful emotions may suggest areas in which new and better ethical practices are needed, as well as whether, once proposed, providers will adopt them or not.
AbstractIt has become increasingly difficult to distinguish between human subject research and before-after quality improvement projects that do not require informed consent. Is there a boundary between human subject research and quality improvement projects? If so, is it a sharp line or a gray zone?
AbstractWe present a case of an incarcerated patient who attempted suicide while in police custody for less than 24 hours. He sustained a C1 vertebra fracture resulting in quadriplegia, poor prognosis, and little chance of neurologic recovery. The patient's urine drug screen was positive for multiple substances, indicating likely intoxication at the time of the attempt. While in the intensive care unit he was only able to communicate through eye movements and blinking. He consistently expressed a wish to withdraw life-sustaining care. This case highlights the ethical challenges involved in assessing decision-making capacity after a suicide attempt in an incarcerated individual, the impact of substance use on capacity, the complexities and potential biases in surrogate decision-making, and the emotional and moral burden of end-of-life care decisions on healthcare providers. We used a deliberate approach involving time for information gathering and deliberation, identification of surrogate decision makers, and engagement of multidisciplinary teams to reach a consensus that upheld ethical principles and protected clinicians from moral injury.
