Exploring Ethical Dimensions in Neuropalliative Care.

Neurologic illnesses can be challenging to diagnose, involve changes in consciousness, and are often complicated by prognostic uncertainty. These disorders can affect how individuals interact with their environment, and as a result, many ethical concerns may arise related to their medical care. Key ethical issues in neuropalliative care include shared decision-making, evolving autonomy and capacity, best interest and harm principles, beneficence and nonmaleficence, futile and inappropriate care, justice and equity, and ableism. The four core principles of medical ethics, beneficence, nonmaleficence, justice, and autonomy, are foundational in considering approaches to these ethical challenges. Shared decision-making is rooted in the principle of autonomy. Evolving autonomy and capacity evoke autonomy, beneficence, and nonmaleficence. The best interest and harm principles are rooted in beneficence and nonmaleficence. Questions of futility and inappropriate care are founded in the principles of nonmaleficence, autonomy, and justice. Ableism invokes questions of nonmaleficence, autonomy, and justice. Practitioners of neurology will encounter ethical challenges in their practice. Framing decisions around the core ethical principles of beneficence, nonmaleficence, autonomy, and justice will help clinicians navigate challenging situations while acknowledging and respecting each patient's individual story.

Ventilator Weaning and Terminal Extubation: Withdrawal of Life-Sustaining Therapy in Children. Secondary Analysis of the Death One Hour After Terminal Extubation Study.

OBJECTIVE: Terminal extubation (TE) and terminal weaning (TW) during withdrawal of life-sustaining therapies (WLSTs) have been described and defined in adults. The recent Death One Hour After Terminal Extubation study aimed to validate a model developed to predict whether a child would die within 1 hour after discontinuation of mechanical ventilation for WLST. Although TW has not been described in children, pre-extubation weaning has been known to occur before WLST, though to what extent is unknown. In this preplanned secondary analysis, we aim to describe/define TE and pre-extubation weaning (PW) in children and compare characteristics of patients who had ventilatory support decreased before WLST with those who did not. DESIGN: Secondary analysis of multicenter retrospective cohort study. SETTING: Ten PICUs in the United States between 2009 and 2021. PATIENTS: Nine hundred thirteen patients 0-21 years old who died after WLST. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: 71.4% ( n = 652) had TE without decrease in ventilatory support in the 6 hours prior. TE without decrease in ventilatory support in the 6 hours prior = 71.4% ( n = 652) of our sample. Clinically relevant decrease in ventilatory support before WLST = 11% ( n = 100), and 17.6% ( n = 161) had likely incidental decrease in ventilatory support before WLST. Relevant ventilator parameters decreased were F io2 and/or ventilator set rates. There were no significant differences in any of the other evaluated patient characteristics between groups (weight, body mass index, unit type, primary diagnostic category, presence of coma, time to death after WLST, analgosedative requirements, postextubation respiratory support modality). CONCLUSIONS: Decreasing ventilatory support before WLST with extubation in children does occur. This practice was not associated with significant differences in palliative analgosedation doses or time to death after extubation.

Harnessing the Humanities to Foster Staff Resilience: An Annual Arts and Humanities Rounds at a Children's Hospital.

Working in healthcare can be fulfilling, meaningful, and sometimes exhausting. Creative endeavors may be one way to foster personal resilience in healthcare providers. In this article, we describe an annual arts and humanities program, the Ludwig Rounds, developed at a large academic children's hospital. The event encourages staff to reflect on resilience by sharing their creative work and how it had an impact on their clinical careers. The multidisciplinary forum also allows staff to connect and learn about each other. We discuss the development of the program, its format and logistics, and lessons learned over the past 15 years.

Admission Functional Status is Associated With Intensivists Perception of Extracorporeal Membrane Oxygenation Candidacy for Pediatric Acute Respiratory Failure.

OBJECTIVES: To determine the association between admission Functional Status Scale (FSS) category and perceived extracorporeal membrane oxygenation (ECMO) candidacy for pediatric acute respiratory failure. DESIGN: Prospective, cross-sectional study. SETTING: Single-center, quaternary, and ECMO referral academic children's hospital between March 2021 and January 2022. SUBJECTS: Pediatric intensivists directly caring for patients admitted with acute respiratory failure secondary to shock or respiratory disease. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Pediatric intensivists were surveyed about current patients within 72 hours of initiation or escalation of invasive mechanical ventilation on whether they would offer ECMO should their patient deteriorate. Baseline functional status was assessed using trichotomized admission FSS: 1) normal/mild dysfunction (6-9), 2) moderate dysfunction (10-15), and 3) severe dysfunction (> 16). Multivariable logistic regression clustered by physician was used to assess the association between admission FSS category with perceived ECMO candidacy. Thirty-seven intensivists participated with 76% (137/180) of survey responses by those with less than 10 years of experience. 81% of patients (146/180) were perceived as ECMO candidates and 19% of patients (34/180) were noncandidates. Noncandidates had worse admission FSS scores than candidates (15.5 vs. 9, p < 0.001). After adjustment for age, admission FSS category of severe dysfunction had lower odds of perceived ECMO candidacy compared with normal to mild dysfunction (odds ratio [OR] 0.18 [95% CI, 0.06-0.56], p < 0.003). Patients with an abnormal communication subscore domain had the lowest odds of being considered a candidate (unadjusted OR 0.44 [95% CI, 0.29-0.68], p < 0.0001). CONCLUSIONS: In this prospective, single-center, cross-sectional study, admission FSS category indicating worse baseline functional status impacted pediatric intensivists' perceptions of ECMO candidacy for patients with acute respiratory failure. Abnormal FSS subscores in the neurocognitive domains were the most important considerations. Future studies should better seek to define the decision-making priorities of both parents and medical specialists for the utilization of ECMO in children with acute respiratory failure.

Development of the perceived miscommunication measure in the pediatric intensive care unit.

PURPOSE: Miscommunication between parents and healthcare providers in the Pediatric Intensive Care Unit (PICU) can affect family-provider relationships and outcomes. This paper reports on the development and psychometric testing of a measure for parent perceived miscommunication, defined as the failure to communicate clearly as perceived by relevant stakeholders in the PICU. DESIGN AND METHODS: Miscommunication items were identified through a review of the literature with interdisciplinary experts. In a cross-sectional quantitative survey, the scale was tested with 200 parents of children discharged from a PICU at a large Northeastern Level 1 Pediatric hospital. The psychometric properties of a 6-item miscommunication measure were assessed using exploratory factor analysis and internal consistency reliability. RESULTS: Exploratory factor analysis yielded one factor explaining 66.09% of the variance. Internal consistency reliability in the PICU sample was α = 0.89. As hypothesized, there was a significant correlation between parental stress, trust, and perceived miscommunication in the PICU (p < .001). Confirmatory factor analysis supported good fit indices in testing the measurement model (χ2/df = 2.57, Goodness of Fit Index (GFI) = 0.979, Confirmatory Fit Index (CFI) =0.993 and Standardized Mean Residual (SMR) = 0.0136). CONCLUSIONS: This new six-item miscommunication measure shows promising psychometric properties including content and construct validity, which can be further tested and refined in future studies of miscommunication and outcomes in PICU. PRACTICE IMPLICATIONS: Awareness of perceived miscommunication in the PICU can benefit stakeholders within the clinical environment by recognizing the importance of clear and effective communication and how language affects the parent-child-provider relationship.

"Death as the One Great Certainty": ethical implications of children with irreversible cardiorespiratory failure and dependence on extracorporeal membrane oxygenation.

Introduction: Advances in medical technology have led to both clinical and philosophical challenges in defining death. Highly publicized cases have occurred when families or communities challenge a determination of death by the irreversible cessation of neurologic function (brain death). Parallels can be drawn in cases where an irreversible cessation of cardiopulmonary function exists, in which cases patients are supported by extracorporeal cardiopulmonary support, such as extracorporeal membrane oxygenation (ECMO). Analysis: Two cases and an ethical analysis are presented which compare and contrast contested neurologic determinations of death and refusal to accept the irreversibility of an imminent death by cardiopulmonary standards. Ambiguities in the Uniform Determination of Death Act are highlighted, as it can be clear, when supported by ECMO, that a patient could have suffered the irreversible cessation of cardiopulmonary function yet still be alive (e.g., responsive and interactive). Parallel challenges with communication with families around the limits of medical technology are discussed. Discussion: Cases that lead to conflict around the removal of technology considered not clinically beneficial are likely to increase. Reframing our goals when death is inevitable is important for both families and the medical team. Building relationships and trust between all parties will help families and teams navigate these situations. All parties may require support for moral distress. Suggested approaches are discussed.

Organ Donation From Patients on Extracorporeal Membrane Oxygenation at the Time of Death.

To describe the clinical characteristics and organ donation rate of patients supported by extracorporeal membrane oxygenation (ECMO) at the time of death. DESIGN: Retrospective observational study. Pearson chi-square and Fisher exact tests were used in statistical analyses. SETTING: One hundred twenty-seven acute care hospitals in New Jersey, Pennsylvania, and Delaware. PATIENTS: Adult and pediatric patients who were on ECMO at the time of referral to a large organ procurement organization (OPO) between 2016 and 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Nineteen thousand nine hundred thirty patients were referred to the OPO between November 2016 and September 2020, of which 5,034 were medically suitable potential donors. Of this cohort, 143 patients were supported on ECMO at the time of OPO referral and 141 were included in analyses (median age 47 yr, 60% male). Thirty-three percent (46/141, median age 48 yr, 52% male) donated organs, compared with 50% of non-ECMO patients (p ≤ 0.0005). ECMO and non-ECMO patients had organs recovered but not transplanted at similar rates (11% vs 10%, p = 0.8). There were no significant differences in sex (p = 0.16) or ethnicity (p = 0.50) between organ donor and nondonor groups. Fifty-one percent (21/41) of organ donors donated after circulatory death and 49% (20/41) after brain death. Patients declared dead by neurologic criteria were more likely to donate (51%) than those declared dead by circulatory criteria (21%, p < 0.001). Frequency of cardiac arrest prior to ECMO was similar between donors and nondonors (p = 0.68). Thirty-nine percent (16/41) of donors had an out-of-hospital cardiac arrest (OHCA) and 51% (21/41) were cannulated via extracorporeal cardiopulmonary resuscitation (ECPR). The most common reason patients were not donors was that family declined (57%). CONCLUSIONS: One-third of patients referred to the OPO on ECMO at the time of death donated organs. While donation occurred less frequently after ECMO, ECMO and non-ECMO patients had organs used rather than discarded at a similar rate. Patients successfully donated following OHCA and/or ECPR. Clinicians should not consider ECMO a barrier to organ donation.

Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings From a Delphi Panel.

OBJECTIVE: To develop recommendations for pediatric shared decision-making (SDM). METHODS: We conducted a Delphi method study from 2020 to 2021 with an international panel (n = 21) of clinicians, researchers, and parents with expertise in pediatric SDM. We conducted semistructured interviews to identify the key processes of pediatric SDM. We coded the interviews using content analysis and developed a questionnaire on the potential processes of pediatric SDM. Using a Likert scale, panelists evaluated each process twice, once for simple decisions and once for complex decisions. Panelists were provided with a summary of the results and evaluated each process again. The processes that were agreed on for simple and complex decisions were reported as "fundamental processes." The processes that were agreed on for complex decisions were reported as "additional processes." RESULTS: A total of 79 recommendations were developed, including 29 fundamental processes and 14 additional processes for complex decisions. A recurring theme was the importance of personalizing the decision-making process. For example, the panel recommended that physicians should assess the family and child's desired roles in the decision-making process, assess their desired level of directiveness, and elicit and clarify their values, preferences, and goals. The panel also disagreed on several subprocesses, such as how to determine the child's role and the appropriate level of directiveness. CONCLUSIONS: An international expert panel developed recommendations for pediatric SDM for both simple and complex decisions. The recommendations highlight the importance of personalizing the decision-making process.

A Taxonomy of Objections to Brain Death Determination.

Family objections to evaluating a patient for death by neurologic criteria, or "brain death," are challenging for the family and the medical team. In this article, we categorize brain death evaluation refusals into a taxonomy: informational objections, emotional objections, and principled objections. We offer suggested approaches for clinicians to respond to refusals on the basis of the category. The category of objection may also be important in considering when accommodation of refusals should be considered. The goal in all such situations is to promote compassionate, ethical, and equitable care for the patient and family.

Pediatric brain death certification: a narrative review.

In the five decades since its inception, brain death has become an accepted medical and legal concept throughout most of the world. There was initial reluctance to apply brain death criteria to children as they are believed more likely to regain neurologic function following injury. In spite of early trepidation, criteria for pediatric brain death certification were first proposed in 1987 by a multidisciplinary committee comprised of experts in the medical and legal communities. Protocols have since been developed to standardize brain death determination, but there remains substantial variability in practice throughout the world. In addition, brain death remains a topic of considerable ethical, philosophical, and legal controversy, and is often misrepresented in the media. In the present article, we discuss the history of brain death and the guidelines for its determination. We provide an overview of past and present challenges to its concept and diagnosis from biophilosophical, ethical and legal perspectives, and highlight differences between adult and pediatric brain death determination. We conclude by anticipating future directions for brain death as related to the emergence of new technologies. It is our position that providers should endorse the criteria for brain death diagnosis in children as proposed by the Society of Critical Care Medicine (SCCM), American Academy of Pediatrics (AAP), and Child Neurology Society (CNS), in order to prevent controversy and subjectivity surrounding what constitutes life versus death.

Parents as Advocates for Pediatric Palliative Care.

Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.