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.

Policy Feedback and the Politics of Childhood Vaccine Mandates: Conflict and Change in California, 2012-2019.

CONTEXT: In 2012, California instituted a new requirement for parents to consult with a clinician before receiving a personal belief exemption to its school entry vaccine mandate. In 2015, the state removed this exemption altogether. In 2019, legislators cracked down on medical exemptions to address their misuse by vaccine refusers and supportive clinicians. This paper explores these political conflicts using 'policy feedback theory,' arguing that personal belief exemptions informed the emergence and approaches of two coalitions whose conflict reshaped California's vaccination policies. METHODS: We analysed legal, policy, academic and media documents; interviewed ten key informants; and deductively analysed transcripts using NVivo 20 transcription software. FINDINGS: California's long-standing vaccination policy inadvertently disseminated two fundamentally incompatible social norms: vaccination is a choice; vaccination is not a choice. Over time, the culture and number of vaccine refusers grew, at least in part because the policy state-sanctioned the norm of vaccine refusal. CONCLUSIONS: The long-term consequences of California's 'mandate + PBE' policy - visible, public, and socially sanctioned vaccine refusal - undermined support for it over time, generating well-defined losses for a large group of people (the vaccinating public) and specifically for the parent activists whose experiences of personal grievance drove their mobilisation for change.

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.

Making salient ethics arguments about vaccine mandates: A California case study.

Vaccine mandates can take many forms, and different kinds of mandates can implicate an array of values in diverse ways. It follows that good ethics arguments about particular vaccine mandates will attend to the details of individual policies. Furthermore, attention to particular mandate policies-and to attributes of the communities they aim to govern-can also illuminate which ethics arguments may be more salient in particular contexts. If ethicists want their arguments to make a difference in policy, they should attend to these kinds of empirical considerations. This paper focuses on the most common and contentious vaccine mandate reform in the contemporary United States: the elimination of nonmedical exemptions (NMEs) to school and daycare vaccine mandates. It highlights, in particular, debates about California's Senate Bill 277 (SB277), which was the first successful recent effort to eliminate NMEs in that country. We use media, secondary sources, and original interviews with policymakers and activists to identify and evaluate three ethics arguments offered by critics of SB277: parental freedom, informed consent, and children's rights to care and education. We then turn to one ethics argument often offered by advocates of SB277: harm prevention. We note, however, that three arguments for mandates that are common in the immunization ethics literature-fairness/free-riding, children's rights to vaccination, and utilitarianism-did not play a role in debates about SB277.

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.

COVID-19 Vaccine Hesitancy Among Healthcare Personnel Who Generally Accept Vaccines.

To identify psychological antecedents of COVID-19 vaccine hesitancy among healthcare personnel (HCP). We surveyed 4603 HCP to assess psychological antecedents of their vaccination decisions (the '5 Cs') for vaccines in general and for COVID-19 vaccines. Most HCP accept vaccines, but many expressed hesitancy about COVID-19 vaccines for the psychological antecedents of vaccination: confidence (vaccines are effective), complacency (vaccines are unnecessary), constraints (difficult to access), calculation (risks/benefits), collective responsibility (need for vaccination when others vaccinate). HCP who were hesitant only about COVID-19 vaccines differed from HCP who were consistently hesitant: those with lower confidence were more likely to be younger and women, higher constraints were more likely to have clinical positions, higher complacency were more likely to have recently cared for COVID-19 patients, and lesser collective responsibility were more likely to be non-white. These results can inform interventions to encourage uptake of COVID-19 vaccines in HCP.

Imperfect Immunization Communication on School District Websites: A Mixed-Methods Review.

Schools and school districts are key to U.S. vaccination policies: They communicate immunization enrollment requirements and enforce them during registration. This article presents a mixed-methods study of how Michigan's 537 districts communicate about vaccine mandates through public-facing websites. It reports the results of a qualitative analysis (n = 50) of websites from Southeast Michigan and a quantitative analysis of all (n = 537) Michigan's district websites. School district websites engage in diverse health promotion practices surrounding immunization, from encouraging vaccination to neutral messaging and to encouraging exemptions. Most provide scant immunization information and few promote the importance of immunization for individual and community health. We recommend that school nurses, district staff, and health authorities collaborate to ensure that school district communication promotes immunization and does not promote nonmedical exemptions. This can lead schools to embrace immunization as an essential activity for their own functioning rather than as an unwelcome requirement imposed by outside agents.

Pox Parties for Grannies? Chickenpox, Exogenous Boosting, and Harmful Injustices.

Some societies tolerate or encourage high levels of chickenpox infection among children to reduce rates of shingles among older adults. This tradeoff is unethical. The varicella zoster virus (VZV) causes both chickenpox and shingles. After people recover from chickenpox, VZV remains in their nerve cells. If their immune systems become unable to suppress the virus, they develop shingles. According to the Exogenous Boosting Hypothesis (EBH), a person's ability to keep VZV suppressed can be 'boosted' through exposure to active chickenpox infections. We argue that even if this hypothesis were true, immunization policies that discourage routine childhood varicella vaccination in order to prevent shingles for other people are unethical. Such policies harm children and treat them as mere means for the benefit of others, and are inconsistent with how parents should treat their children and physicians should treat their patients. These policies also seem incompatible with institutional transparency.

Perspectives of public health nurses on the ethics of mandated vaccine education.

BACKGROUND: Since 2015, Michigan has required parents who request nonmedical exemptions (NMEs) from school or daycare immunization mandates to receive education from local public health staff (usually nurses). This is unlike most other US states that have implemented mandatory immunization counseling, which require physicians to document immunization education, or which provide online instruction. PURPOSE: To attend to the activity and dispositions of the public health staff who provide "waiver education". METHOD: This study reports results of focus group interviews with 39 of Michigan's vaccine waiver educators (37 nurses), conducted during 2016 and 2017, and analyzed in 2018. FINDINGS: Four themes emerged from analysis of the transcripts of these interviews: Participants had (1) complex and nuanced observations and evaluations of parents' judgments and feelings about vaccines and vaccine education; (2) sympathetic attitudes about alternative vaccine schedules; (3) critical and supportive evaluations of institutional policies and the background political context of immunization education; and (4) consistent commitments to respect parents, affirm their values, and protect their rights. DISCUSSION: These results show that public health nurses are sensitive to the burdens mandatory immunization education places on families, the motivations for parents' requests for nonmedical exemptions, and the values implicated by personal immunization decisions and government immunization policies. In light of the unique training, experiences, and public reputation of nurses, there is good reason for additional investigation into the roles that nurses can play in immunization education and in vaccine mandate policies, more generally.

Childhood Vaccination Mandates: Scope, Sanctions, Severity, Selectivity, and Salience.

Policy Points We offer the first systematic conceptual framework for analyzing the operation of mandatory vaccination policies. Our multicomponent framework facilitates synthesis judgments on single issues of pressing concern to policymakers, in particular, how mandatory vaccination policies motivate people to vaccinate. We consider the impact of each component of our framework on persons who remain unvaccinated for different reasons, including complacency, social disadvantage, and more or less committed forms of refusal. CONTEXT: In response to outbreaks of vaccine-preventable disease and increasing rates of vaccine refusal, some political communities have recently implemented coercive childhood immunization programs, or they have made existing childhood immunization programs more coercive. Many other political communities possess coercive vaccination policies, and others are considering developing them. Scholars and policymakers generally refer to coercive immunization policies as "vaccine mandates." However, mandatory vaccination is not a unitary concept. Rather, coercive childhood immunization policies are complex, context-specific instruments. Their legally and morally significant features often differ, and they are imposed by political communities in varying circumstances and upon diverse populations. METHODS: In this paper, we introduce a taxonomy for classifying real-world and theoretical mandatory childhood vaccination policies, according to their scope (which vaccines to require), sanctions and severity (which kind of penalty to impose on vaccine refusers, and how much of that penalty to impose), and selectivity (how to enforce or exempt people from vaccine mandates). FINDINGS: A full understanding of the operation of a vaccine mandate policy (real or potential) requires attention to the separate components of that policy. However, we can synthesize information about a policy's scope, sanctions, severity, and selectivity to identify a further attribute-salience-which identifies the magnitude of the burdens the state imposes on those who are not vaccinated. CONCLUSION: Our taxonomy provides a framework for forensic examination of current and potential mandatory vaccination policies, by focusing attention on those features of vaccine mandates that are most relevant for comparative judgments.

Vaccine mandates, value pluralism, and policy diversity.

Political communities across the world have recently sought to tackle rising rates of vaccine hesitancy and refusal, by implementing coercive immunization programs, or by making existing immunization programs more coercive. Many academics and advocates of public health have applauded these policy developments, and they have invoked ethical reasons for implementing or strengthening vaccine mandates. Others have criticized these policies on ethical grounds, for undermining liberty, and as symptoms of broader government overreach. But such arguments often obscure or abstract away from the diverse values that are relevant to the ethical justifications of particular political communities' vaccine-mandate policies. We argue for an expansive conception of the normative issues relevant to deciding whether and how to establish or reform vaccine mandates, and we propose a schema by which to organize our thoughts about the ways in which different kinds of vaccine-mandate policies implicate various values.

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.

A survey instrument for measuring vaccine acceptance.

Accurately measuring vaccine acceptance is important, especially under current conditions in which misinformation may increase public anxiety about vaccines and politicize vaccination policies. We integrated substantive knowledge, conceptualization and measurement expertise, and survey design principles to develop an instrument for measuring vaccine acceptance across the general public. Given this broad goal, we expect our novel instrument will complement, rather than replace, existing instruments designed specifically to measure parents' vaccine hesitancy. Our instrument measures five key facets of vaccine acceptance: (1) perceived safety of vaccines; (2) perceived effectiveness and necessity of vaccines; (3) acceptance of the selection and scheduling of vaccines; (4) positive values and affect toward vaccines; and (5) perceived legitimacy of authorities to require vaccinations. We report results of analyses demonstrating the reliability and validity of this instrument. High Cronbach's alpha values for five sub-scales and for the full scale indicate the instrument's reliability, and the consistent performance of expected predictors (i.e., trust in biologists, conspiratorial ideation, and political ideology) demonstrates the instrument's construct validity. Further, scientific reasoning increases vaccine acceptance among liberals but decreases vaccine acceptance among conservatives, which is consistent with motivated cognition. Also, trust in biologists has a stronger positive effect on vaccine acceptance among conservatives than among liberals, signaling a potentially promising means to reduce political polarization on vaccines and increase vaccine acceptance across the general public. We end by identifying key ways that public health researchers, science studies scholars, and health practitioners may employ the full (or short) version of our vaccine acceptance instrument.

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.