Limits on Parental Discretion in Medical Decision-Making: pediatric intervention principles converge.

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents' medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence between intervention principles-or at least an absence of conflict between them-matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making.

Clinical Ethics Fellowship Programs in the U.S. and Canada: A Descriptive Study of Program Characteristics and Practices.

To address the current lack of knowledge about clinical ethics fellowship programs (CEFPs), we surveyed all 36 programs in the U.S. and Canada. The number of CEFPs has grown exponentially over the last 40 years and far exceeds previous estimates. Commonalities among CEFPs include: 88.8% require an advanced degree or rarely accept applicants without one; 91.7% of programs do not restrict applicants to a specific background such as medicine or philosophy; and 88.9% of programs compensate fellows. CEFPs vary widely on numbers of fellows trained in the last 3 years (1-111), numbers of consultations performed by each fellow (0-450), and salaries paid ($0-$95,000). Less than half of programs meet CEFP standards established by ABPD. Nonpaying programs and larger programs tend to have lower admission standards and lower expectations for fellows. We hope these data will help inform CEFP standards that promote quality and consistency without stifling desirable diversity and innovation.

The Impact of a Study Trip to Auschwitz: Place-based Learning for Bioethics Education and Professional Identity Formation.

There are increasing calls for coverage of medicine during the Holocaust in medical school curricula. This article describes outcomes from a Holocaust and medicine educational program featuring a study trip to Poland, which focused on physician complicity during the Holocaust, as well as moral courage in health professionals who demonstrated various forms of resistance in the ghettos and concentration camps. The trip included tours of key sites in Krakow, Oswiecim, and the Auschwitz-Birkenau concentration camps, as well as meeting with survivors, lectures, reflective writings, and discussions. In-depth interviews and reflective writings were qualitatively analyzed. Resulting themes centered on greater understanding of the relationship between bioethics and the Holocaust, recognizing the need for moral courage and social awareness, deeper appreciation for the historical roles played by dehumanization and medical power and their contemporary manifestations, and the power of presence and experiential learning for bioethics education and professional identity formation. These findings evidence the significant impact of the experience and suggest broader adoption of pedagogies that include place-based and experiential learning coupled with critical reflection can amplify the impact of bioethics and humanism education as well as the process of professional identity formation of medical students.

Conscientious Objection to Aggressive Interventions for Patients in a Vegetative State.

Some physicians refuse to perform life-sustaining interventions, such as tracheostomy, on patients who are very likely to remain permanently unconscious. To explain their refusal, these clinicians often invoke the language of "futility", but this can be inaccurate and can mask problematic forms of clinical power. This paper explores whether such refusals should instead be framed as conscientious objections. We contend that the refusal to provide interventions for patients very likely to remain permanently unconscious meets widely recognized ethical standards for the exercise of conscience. We conclude that conscientious objection to tracheostomy and other life-sustaining interventions on such patients can be ethical because it does not necessarily constitute a form of invidious discrimination. Furthermore, when a physician frames their refusal as conscientious objection, it makes transparent the value-laden nature of their objection and can better facilitate patient access to the requested treatment.

It's Worth What You Can Sell It for: A Survey of Employment and Compensation Models for Clinical Ethicists.

This article reports results of a survey about employment and compensation models for clinical ethics consultants working in the United States and discusses the relevance of these results for the professionalization of clinical ethics. This project uses self-reported data from healthcare ethics consultants to estimate compensation across different employment models. The average full-time annualized salary of respondents with a clinical doctorate is $188,310.08 (SD=$88,556.67), $146,134.85 (SD=$55,485.63) for those with a non-clinical doctorate, and $113,625.00 (SD=$35,872.96) for those with a masters as their highest degree. Pay differences across degree level and type were statistically significant (F = 3.43; p < .05). In a multivariate model, there is an average increase of $2,707.84 for every additional year of experience, controlling for having a clinical doctorate (ß=0.454; p < .01). Our results also show high variability in the backgrounds and experiences of healthcare ethics consultants and a wide variety of employment models. The significant variation in employment and compensation models is likely to pose a challenge for the professionalization of healthcare ethics consultation.

The capacity to designate a surrogate is distinct from decisional capacity: normative and empirical considerations.

The capacity to designate a surrogate (CDS) is not simply another kind of medical decision-making capacity (DMC). A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases (eg, Alzheimer's disease). That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions.

Practising what we preach: clinical ethicists' professional perspectives and personal use of advance directives.

The field of clinical bioethics strongly advocates for the use of advance directives to promote patient autonomy, particularly at the end of life. This paper reports a study of clinical bioethicists' perceptions of the professional consensus about advance directives, as well as their personal advance care planning practices. We find that clinical bioethicists are often sceptical about the value of advance directives, and their personal choices about advance directives often deviate from what clinical ethicists acknowledge to be their profession's recommendations. Moreover, our respondents identified a pluralistic set of justifications for completing treatment directives and designating surrogates, even while the consensus view focuses on patient autonomy. Our results suggest important revisions to academic discussion and public-facing advocacy about advance care planning.

Three Kinds of Decision-Making Capacity for Refusing Medical Interventions.

According to a standard account of patient decision-making capacity (DMC), patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical condition and can comparatively evaluate all offered treatment options. We argue instead that some patient refusals can be capacitated, and therefore ethically authoritative, without meeting the strict criteria of this standard account-what we call comparative DMC. We describe how patients may possess burdens-based DMC for refusal if they have an overriding objection to at least one burden associated with each treatment option or goals-based DMC for refusal if they have an overriding goal that is inconsistent with treatment. The overridingness of a patient's objections to burdens, or of their commitment to a goal, can justify the moral authority of their refusal, even when a patient lacks some of the cognitive capacities that standard accounts of DMC involve.

On Triggering and Being Triggered: Civil Society and Building Brave Spaces in Medical Education.

IssueHow educators should respond to student reports of intense emotional reactions to curricular content-i.e., being triggered-invites intense debate. There are claims of insensitivity on one side and calls to "toughen up" on the other. These polemics aside, such instances sometimes represent a true dilemma, particularly within medical education where engaging highly sensitive content is essential to future patient care and where managing one's own emotions is a core competency. Parsing this convoluted and emotional debate into these domains illustrates how medical educators can simultaneously legitimize the lived experiences of students, engage in honest dialogue, and maintain a shared commitment to education. Evidence: While substantial energy has been spent debating the legitimacy of students' emotional reactions, the discourse lacks a clear conceptual framework and we often end up talking past each other. The concept of brave spaces offers an important alternative where sensitive subject matter can be engaged with civility. Implications: This paper offers a model for building brave spaces within medical education by clarifying the rights and responsibilities of both teachers and learners in each of three intersecting domains: intrapersonal, interpersonal, and civic. This model is exemplified in a case where students reported being triggered by course content. By parsing this case across the three domains, we can clarify how responses are multifaceted and we can simultaneously avoid indictment of another's lived experiences while preserving the pedagogical integrity of the curriculum.

Guidance and Intervention Principles in Pediatrics: The Need for Pluralism.

Two core questions in pediatric ethics concern when and how physicians are ethically permitted to intervene in parental treatment decisions (intervention principles), and the goals or values that should direct physicians' and parents' decisions about the care of children (guidance principles). Lainie Friedman Ross argues in this issue of The Journal of Clinical Ethics that constrained parental autonomy (CPA) simultaneously answers both questions: physicians should intervene when parental treatment preferences fail to protect a child's basic needs or primary goods, and both physicians and parents should be guided by a commitment to protect a child's basic needs and primary goods. In contrast, we argue that no principle-neither Ross's CPA, nor the best interest standard or the harm threshold-can serve as both an intervention principle and a guidance principle. First, there are as many correct intervention principles as there are different kinds of interventions, since different kinds of interventions can be justified under different conditions. Second, physicians and parents have different guidance principles, because the decisions physicians and parents make for a child should be informed by different values and balanced by different (potentially) conflicting commitments.

Reasons to Amplify the Role of Parental Permission in Pediatric Treatment.

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics (AAP) expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may (1) reveal facts and values relevant to their child's treatment, (2) encourage resistance to suboptimal default practices, (3) improve adherence to treatment, (4) nurture children's autonomy, and (5) promote the interests of other family members.

When Respecting Autonomy Is Harmful: A Clinically Useful Approach to the Nocebo Effect.

Nocebo effects occur when an adverse effect on the patient arises from the patient's own negative expectations. In accordance with informed consent, providers often disclose information that results in unintended adverse outcomes for the patient. While this may adhere to the principle of autonomy, it violates the doctrine of "primum non nocere," given that side-effect disclosure may cause those side effects. In this article we build off previous work, particularly by Wells and Kaptchuk ( 2012 ) and by Cohen ( 2013 ), to suggest ethical guidelines that permit nondisclosure in the case when a nocebo effect is likely to occur on of the basis of nonmaleficence. We accept that that autonomy vis-à-vis informed consent must be forestalled, but salvage much of its role by elaborating a practical clinical approach to postencounter follow-up. In doing so, we reconcile a clinically practicable process of determining conditions of disclosure with long-standing ethical commitments to patients.

Moral Reasoning among HEC Members: An Empirical Evaluation of the Relationship of Theory and Practice in Clinical Ethics Consultation.

In light of the ongoing development and implementation of core competencies in bioethics, it is important to proceed with a clear sense of how bioethics knowledge is utilized in the functioning of hospital ethics committees (HECs). Without such an understanding, we risk building a costly edifice on a foundation that is ambiguous at best. This article examines the empirical relationship between traditional paradigms of bioethics theory and actual decision making by HEC members using survey data from HEC members. The assumption underlying the standardization of qualifications and corresponding call for increased education of HEC members is that they will base imminent case decisions on inculcated knowledge. Our data suggest, however, that HEC members first decide intuitively and then look for justification, thereby highlighting the need to re-examine the pedagogical processes of ethics education in the process of standardizing and improving competencies.

On art and science: an epistemic framework for integrating social science and clinical medicine.

Calls for incorporating social science into patient care typically have accounted for neither the logistic constraints of medical training nor the methodological fallacies of utilizing aggregate "social facts" in clinical practice. By elucidating the different epistemic approaches of artistic and scientific practices, this paper illustrates an integrative artistic pedagogy that allows clinical practitioners to generate social scientific insights from actual patient encounters. Although there is no shortage of calls to bring social science into medicine, the more fundamental processes of thinking by which art and science proceed have not been addressed to this end. As such, the art of medical practice is conceptualized as an innate gift, and thus little is done to cultivate it. Yet doing so is more important than ever because uncertainty in diagnosing and treating chronic illnesses, the most significant contemporary mortality risks, suggests a re-expanding role for clinical judgment.

Clinical Ethics Fellowship Programs in the United States and Canada: Program Directors' Opinions About Accreditation and Funding.

To succeed, an accreditation process for clinical ethics fellowship programs (CEFPs) would need support from CEFP directors. To assess CEFP directors' opinions, we surveyed all 36 CEFP directors in the United States and Canada, achieving a 100% response rate. We found that support for accreditation is strong, with 30.6% strongly supportive, 44.4% supportive, 22.2% neutral, 2.8% opposed, and 0% strongly opposed. Most directors (77.8%) would be likely to apply for accreditation within the next five years regardless of the availability of government funding; even more (86.1%) would apply if government funding became available for accredited programs. Most directors thought that lack of a national accreditation process (75.0%), lack of agreed-upon standards (90.0%), and lack of funding for CEFPs (91.7%) were at least moderate problems for the field. When directors were asked what they thought was the greatest challenge or barrier to developing an accreditation process, many mentioned the diversity of programs and the challenge of achieving consensus on accreditation standards. Directors offered a variety of suggestions for how to overcome or manage challenges or barriers, including collecting data on existing programs, mirroring standards established for other health professions, and setting clear expectations on the need for compromise. When directors were asked how they expected that accreditation and government funding would affect their own programs, the field of clinical ethics, and patient care, directors mostly had very positive expectations; no director expected negative effects in any of these areas. Overall, this study provides evidence that developing an accreditation process for CEFPs would be both possible and desirable. Our findings have immediate practical implications for the field and will inform efforts that are already underway to establish an accreditation process for CEFPs.

Comparative treatment of homeless persons with an infectious disease in the US emergency department setting: a retrospective approach.

BACKGROUND: Research has long documented the increased emergency department usage by persons who are homeless compared with their housed counterparts, as well as an increased prevalence of infectious diseases. However, there is a gap in knowledge regarding the comparative treatment that persons who are homeless receive. This study seeks to describe this potential difference in treatment, including diagnostic services tested, procedures performed and medications prescribed. METHODS: This study used a retrospective, cohort study design to analyse data from the 2007-2010 United States National Hospital Ambulatory Medical Care Survey database, specifically looking at the emergency department subset. Complex sample logistic regression analysis was used to compare variables, including diagnostic services, procedures and medication classes prescribed between homeless and private residence individuals seeking emergency department treatment for infectious diseases. Findings were then adjusted for potential confounding variables. RESULTS: Compared with private residence individuals, persons who are homeless and presenting with an infectious disease were more likely (adjusted OR: 10.99, CI 1.08 to 111.40, p<0.05) to receive sutures or staples and less likely (adjusted OR: 0.29, CI 0.10 to 0.87, p<0.05) to be provided medications when presenting with an infectious disease in US emergency departments. Significant differences were also detected in prescribing habits of multiple anti-infective medication classes. CONCLUSION: This study detected a significant difference in suturing/stapling and medication prescribing patterns for persons who are homeless with an infectious disease in US emergency departments. While some findings can likely be explained by the prevalence of specific infectious organisms in homeless populations, other findings would benefit from further research.