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.

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.

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.

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.

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.

Deception, Pain, and Placebo: Applying the Brummett-Salter Deception Framework.

In this commentary, I explore the usefulness of the framework Abram Brummett and Erica K. Salter present in their article "Mapping the Moral Terrain of Clinical Deception." Deception cases are divisive because they nearly always evoke the metadilemma of clinical ethics: a clash between duties (in these cases, truth telling) and consequences (whatever good might come of the lie). Here, I describe a patient case in which the clinical team considered deceiving a patient about his pain-medicine dosage in exchange for his allowing the clinicians to properly care for his percutaneous endoscopic gastrostomy tube stoma, so as to prevent infection. Applying the framework that Brummett and Salter have developed helped our clinical team parse the numerous complex issues involved. The nuances of our case also illustrated additional ways in which the ethics of deception needs to be further refined.

Paradoxical experiences of healthcare workers during COVID-19: a qualitative analysis of anonymous, web-based, audio narratives.

PURPOSE: To gain a deeper understanding of healthcare workers experiences during COVID-19 using an anonymous, web-based, audio narrative platform. METHODS: Data were collected from healthcare workers in the midwestern United States using a web-enabled audio diary approach. Participant recordings were analysed using a narrative coding and conceptualization process derived from grounded theory coding techniques. RESULTS: Fifteen healthcare workers, in direct patient care or non-patient care roles, submitted 18 audio narratives. Two paradoxical themes emerged: 1) A paradox of distress and meaningfulness, where a harsh work environment resulted in psychological distress while simultaneously resulting in new rewarding experiences, sense of purpose and positive outlooks. 2) A paradox of social isolation and connection, where despite extreme isolation, healthcare workers formed intense and meaningful interpersonal connections with patients and colleagues in new ways. CONCLUSIONS: A web-enabled audio diary approach provided an opportunity for healthcare workers to reflect deeper on their experiences without investigator influence, which led to some unique findings. Paradoxically, amid social isolation and extreme distress, a sense of value, meaning and rewarding human connections emerged. These findings suggest that interventions addressing healthcare worker burnout and distress might be enhanced by leveraging naturally occurring positive experiences as much as mitigating negative ones.

Prevalence of traumatic brain injury among the guests at a low-barrier homeless shelter.

OBJECTIVE: This study aimed at determining the prevalence of traumatic brain injuries (TBI) among guests staying at a low-barrier homeless shelter who represent an especially vulnerable subset of individuals experiencing homelessness. RESULTS: A total of 21 out of 35 shelter guests participated in the survey. We found that 17 (81.0%) had experienced at least one traumatic brain injury in their lifetime and 15 (71.3%) had TBI associated with loss of consciousness. In addition, 7 (33.3%) of the participants had experienced TBIs rated as moderate to severe. Of the participants with head trauma history, 16 (94.1%) experienced their injury before their first onset of homelessness. Compared to both the general population and the broader population of individuals experiencing homelessness, those in this sample were significantly more likely to experience TBI (95% CI 0.0000:0.2857; p < 0.001 and 95% CI 0.3333:0.7619; p < 0.015, respectively) and significantly more likely to experience severe TBI (95% CI 0.0000:0.09524; p < 0.001).

Centrifuged-Concentrated Intravitreal Slurry Triamcinolone Acetonide: An Inexpensive, Easy, and Viable Alternative to Long-Term Steroid Delivery.

Purpose: This work reports the duration, safety, and viability of intravitreal slurry triamcinolone acetonide (TA; 1.0 mL of 40-mg/mL TA centrifuge concentrated into a 0.1-mL pellet) to treat cystoid macular edema (CME). Methods: A retrospective, consecutive review was conducted of patients undergoing intravitreal slurry TA injections, July 2009 to December 2018. Results: In 143 eyes of 120 patients, slurry TA resolved CME for a mean of 327.15 (SD = 213.11) days, or 10.76 (SD = 7.00) months, per intravitreal injection (n = 466). In 100 eyes requiring multiple injections (n = 423), mean duration was 270.95 (SD = 177.14) days, or 8.91 (SD = 5.82) months, between injections. In 43 single-injection eyes, duration was 749.30 (SD = 483.17) days, or 24.63 (SD = 15.88) months. Mean duration decreased from 337.89 (SD = 210.46) days, or 11.11 (SD = 6.92) months, in nonvitrectomized eyes to 279.74 (SD 179.63) days, or 9.20 (SD = 5.91) months, in vitrectomized eyes (n = 74 injections, t = 2.24, P = .014, 1-tailed). Central foveal thickness as shown on optical coherence tomography decreased by 173.89µ (SD = 147.56µ), from 459.16µ (SD = 47.14µ) to 285.27µ (SD = 77.27µ; t = -25.31, P < .001), within 43.41 days (SD = 36.86). Visual acuity improved from 20/100 (logMAR 0.70, SD = 0.33) to 20/74 (logMAR 0.57, SD = 0.31; SD = 0.21; t = -11.01, P < .001), within 33.98 (SD 24.98) days. Fifteen of 31 phakic eyes (48.39%) underwent cataract extraction. Fifty-seven eyes (39.86%) developed a steroid response (> 10 mm Hg increase from baseline) 94.79 days (SD = 85.52 days), or 3.11 (SD = 2.81) months, following injection. Conclusions: A single injection of slurry TA lasted on average 10.76 months with significant improvement of CME and visual acuity. Adverse ocular effects were comparable to currently available, long-term, implantable steroids. Slurry TA appears to be an easily reproducible, safe, and cost-effective alternative to long-term intraocular steroid delivery.