Pediatric Decision-Making for Children in State Custody.

In summer 2022, six points of consensus emerged from a symposium addressing the question, "In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of children removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers.

Addressing Unmet Social Needs and Social Risks - A Qualitative Interview-Based Assessment of Parent Reported Outcomes and Impact from a Medical Legal Partnership.

Medical legal partnerships address individual legal needs that can create impediments to health. Little is known about outcomes from medical legal partnerships and their relationship to access to justice. This paper reports outcomes from one medical legal partnership from the perspective of the client, with specific emphasis on impact on health and concepts related to access to justice. We suggest a conceptual model for incorporating medical legal partnerships into a broader framework about access to justice.

Pediatric Decision Making: Consensus Recommendations.

Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium "Best Interests and Beyond: Standards of Decision Making in Pediatrics" in St Louis, MO. Over the course of this 3-day symposium, 17 expert scholars (see author list) deliberated on the question "In the context of US pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" The symposium and subsequent discussion generated 6 consensus recommendations for pediatric decision making, constructed with the primary goals of accessibility, teachability, and feasibility for practicing clinicians, parents, and legal guardians. In this article, we summarize these recommendations, including their justification, limitations, and remaining concerns.

Addressing Racism in the Healthcare Encounter: The Role of Clinical Ethics Consultants.

Clinical ethicists move in different environments and interface with a variety of stakeholders, and are therefore uniquely positioned to answer the call for equity and anti-racism. We describe why a clinical ethicist should contribute to anti-racism efforts and describe general approaches for addressing racism across institutional contexts, including: (1) addressing racism as bedside clinical ethics consultant, (2) addressing wider lens of anti-racism work across multiple ethics consults over time, and (3) addressing racism at the organizational level.

Pediatric Intensivist and Pediatric Neurologist Perspectives and Practices on Death by Neurologic Criteria.

Controversies surrounding the determination of death by neurologic criteria (DNC), also known as brain death, have become increasingly common over the last decade, occasionally leading to parental refusal of all or part of an evaluation or declaration of DNC. We performed a prospective, cross-sectional study of pediatric neurologists and intensivists who participate in professional listservs to ascertain perspectives and practices concerning the evaluation of DNC, specifically on obtaining permission for evaluations and managing refusals. Of the 334 respondents who had performed an evaluation for DNC, 35 percent reported they had experienced at least one parental refusal, and 64.4 percent reported that they did not seek permission to perform an evaluation. Pediatric neurologists, careproviders who had less experience doing evaluations, and careproviders who had experienced parental refusal of an evaluation were more likely to obtain permission from parents. Most (80.8 percent) of respondents reported that their institution had a DNC policy. We found variability in many aspects of DNC evaluations and declarations, as well as the handling of refusals. Lack of consistency may make it more difficult for careproviders and families. Greater understanding of parental refusal of DNC evaluation is essential to inform efforts to increase consistency.

Creating a Research Ethics Consultation Service: Issues to Consider.

This article provides pragmatic advice for organizations interested in creating a research ethics consultation service (RECS). A robust RECS has the potential to build capacity among investigators to identify and consider the ethical issues they encounter while conducting their research. Determining whether to establish an RECS should begin with an institutional-needs assessment that includes three key questions: What are the current resources available to research teams to navigate ethical concerns that arise from their research? Is there a demand or perceived need for more resources? Is there institutional support (financial and otherwise) to establish and maintain an RECS? If this results in the decision to establish the consultation service, relevant institutional stakeholders must be identified and consulted, and personnel with the requisite skills recruited. The next step is to establish an RECS and build the infrastructure to process and respond to requests. The RECS's long-term sustainability will depend on a stable source of funding and a mechanism to receive constructive feedback to ensure that the service is meeting the institutional needs it set out to address.

In the Wake of a Pandemic: Revisiting School Approaches to Nonmedical Exemptions to Mandatory Vaccination in the US.

Mandatory school vaccination policies with exclusion of unvaccinated students can be a powerful tool in ensuring high vaccination rates. Some parents may object to mandatory vaccination policies, claiming exemptions based on medical, religious, or philosophical reasons. Individual schools, school systems, or local or regional governments have different policies with respect to whether, and what kind of, exemptions may be allowed. In the setting of the current pandemic, questions regarding the acceptability of exemptions have resurfaced, as schools and local governments struggle with how to safely return children to school. Anticipating that school attendance will be facilitated by the development of a vaccine, school systems will face decisions about whether to mandate vaccination and whether to permit exemptions. The American Academy of Pediatrics promulgates policy favoring the elimination of nonmedical exemptions generally in schools. This discussion considers whether schools should eliminate nonmedical exemptions to vaccination as proposed in the American Academy of Pediatrics policy, ultimately concluding that broad elimination of exemptions is not justified and advocating a more nuanced approach that encourages school attendance while promoting vaccination and broader public health goals.

Ethical and legal considerations related to disorders of consciousness.

PURPOSE OF REVIEW: The purpose of this review is to describe ethical and legal issues that arise in the management of patients with disorders of consciousness ranging from the minimally conscious state to the coma state, as well as brain death. RECENT FINDINGS: The recent literature highlights dilemmas created by diagnostic and prognostic uncertainties in patients with disorders of consciousness. The discussion also reveals the challenges experienced by the disability community, which includes individuals with severe brain injury who are classified as having a disorder of consciousness. We review current guidelines for management of patients with disorders of consciousness including discussions around diagnosis, prognosis, consideration of neuropalliation, and decisions around life sustaining medical treatment. SUMMARY: In the setting of uncertainty, this review describes the utility of applying a disability rights perspective and shared decision-making process to approach medical decision-making for patients with disorders of consciousness. We outline approaches to identifying surrogate decision makers, standards for decision-making and decision-making processes, specifically addressing the concept of futility as a less useful framework for making decisions. We also highlight special considerations for research, innovative and controversial care, brain death, organ donation, and child abuse and neglect.

Abusive Head Trauma and Parental Participation in Pediatric Decision Making.

Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There are additional concerns about the parents' capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child.

The Importance of Engaging Children in Research Decision-Making: A Preliminary Mixed-Methods Study.

Studies demonstrate deficiencies in parents' and children's comprehension of research and lack of child engagement in research decision-making. We conducted a cross-sectional and interview-based study of 31 parent-child dyads to describe decision-making preferences, experiences, and comprehension of parents and children participating in research. Parents and children reported that parents played a greater role in decisions about research participation than either parents or children preferred. The likelihood of child participation was associated with the extent of input the parent permitted the child to have in the decision-making process, the child's comprehension, whether the study team asked the child about participation, whether the child read study-related materials, the parent's marital status, and the child's race. Children had lower comprehension than adults. Comprehension was related to age, education, verbal intelligence, and reading of study-related information. Parent understanding was associated with prospect for benefit and illness severity. Child participation may be improved by increasing parent-child communication, emphasizing important relational roles between parent and child, respecting the developing autonomy of the child, increasing engagement with the study team, providing appropriate reading materials, and assessing comprehension.

Health Care Surrogacy Laws Do Not Adequately Address the Needs of Minors.

A couple and their five-year-old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a decision-maker. But in our state and the country overall, the limitations of such statutes leave hospital workers to make a judgment call among friends, family, and clergy who may come forward. While surrogate decision-making statutes comprehensively address surrogate decision-makers for adults, a patchwork of laws-permanency statutes, kinship provider statutes, standby guardianship statutes, and, in some cases, surrogate decision-making statutes-provide variable decision-making pathways for children.

Surrogate Decision Making for Children: Who Should Decide?

OBJECTIVE: To identify caregivers' views on preferred surrogate decision makers for their children. STUDY DESIGN: A respondent-anonymous survey was distributed to a convenience sample of adults who accompanied a child to general and subspecialty pediatric care at 2 different institutions or were at the bedside of a child in the pediatric intensive care unit at a third institution in Chicago. RESULTS: We collected 462 valid surveys. The average age of the legal guardian and accompanying child was 36.8 years and 6.6 years, respectively. Most legal guardians designated "other parent with legal authority" as their first choice surrogate decision maker (70%). Respondent's sex, respondent's age, child's age, and child's ethnicity had no effect on first choice surrogate decision maker. "Other parent with legal authority" was less likely to be first choice surrogate if respondents had Medicaid insurance, less than a college degree, or lived in a non-nuclear household (P<.01 for all factors). The surrogacy ladder selected by 31% of legal guardians was "other parent with legal authority," "child's grandparent(s)," and "child's aunt(s) or uncle(s)." No other sequence received more than 10% designation. Study site had no effect on surrogate preference (P = .30). CONCLUSIONS: A surrogacy priority ladder for minors needs to include relatives who are often not included in state surrogacy statutes (eg, grandparents, aunts and uncles). The most popular surrogacy ladder will not be ideal for many families. Parents need to be informed and empowered to choose alternate surrogates, and documented preferences must be easily and widely accessible.

Involving Minors in Medical Decision Making: Understanding Ethical Issues in Assent and Refusal of Care by Minors.

When caring for minors, the clinician-patient relationship becomes more ethically complex by the inclusion of parents in the clinician-parent-patient triad. As they age, children become more capable of participating in the decision-making process. This involvement may lead them to either accept or refuse proposed care, both of which are ethically acceptable positions when the minor's capacity to participate in decision making is carefully considered in the context of their age, development, and overall health. Certain conditions may be more likely to impact their capacity for participation, but it is important for clinicians to avoid categorical presumption that minors of a certain age or with certain conditions are incapable of participating in decisions regarding their care. Understanding the ethical bases for decision making in pediatric patients and considerations for the involvement of minors who both assent to and refuse proposed treatment will equip clinicians to respect the growing autonomy of minor patients.