Pediatric Decision-Making: ethical aspects specific to neonates.

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

Teenage Development and Parental Authority: applying consensus recommendations to adolescent care.

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.

Associations of Patient and Parent Characteristics With Parental Decision Regret in the PICU: A Secondary Analysis of the 2015-2017 Navigate Randomized Comparative Trial.

OBJECTIVES: To identify self-reported meaningful decisions made by parents in the PICU and to determine patient and parent characteristics associated with the development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity. DESIGN: Secondary analysis of the Navigate randomized comparative trial (NCT02333396). SETTING: Two tertiary, academic PICUs. PATIENTS: Spanish- or English-speaking parents of PICU patients aged less than 18 years who were expected to remain in the PICU for greater than 24 hours from time of enrollment or who had a risk of mortality greater than 4% based on Pediatric Index of Mortality 2 score. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Between April 2015 and March 2017, 233 parents of 209 patients completed a survey 3-5 weeks post-PICU discharge which included the Decision Regret Scale (DRS), a 5-item, 5-point Likert scale tool scored from 0 (no regret) to 100 (maximum regret). Two hundred nine patient/parent dyads were analyzed. The decisions parents reported as most important were categorized as: procedure, respiratory support, medical management, parent-staff interactions and communication, symptom management, fluid/electrolytes/nutrition, and no decision. Fifty-one percent of parents had some decision regret (DRS > 0) with 19% scoring in the moderate-severe range (DRS 26-100). The mean DRS score was 12.7 (sd 18.1). Multivariable analysis showed that parental Hispanic ethnicity was associated with greater odds ratio (OR 3.12 [95% CI, 1.36-7.13]; p = 0.007) of mild regret. Being parents of a patient with an increased PICU length of stay (LOS) or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR 1.03 [95% CI, 1.009-1.049]; p = 0.004 and OR 2.91 [95% CI, 1.22-6.94]; p = 0.02, respectively). CONCLUSIONS: Decision regret was experienced by half of PICU parents in the 2015-2017 Navigate study. The characteristics associated with decision regret (parental ethnicity, PICU LOS, and respiratory disease) are easily identifiable. Further study is needed to understand what contributes to regret in this population and what interventions could provide support and minimize the development of regret.

Open Notes Experiences of Parents in the Pediatric ICU.

OBJECTIVE: We examined how parents experience and navigate open access to clinical notes ("open notes") in their child's electronic health record and explored their interactions with clinicians during an ICU admission. METHODS: We performed a qualitative analysis using semistructured interviews of English-speaking parents who accessed their child's clinical notes during a pediatric ICU (general or cardiac) admission. We included patient-parent dyads with an ICU admission ≥48 hours between April 2021 and December 2022, note access by proxy timestamp during the ICU course, and either patient age <12 years or incapacitated adolescent ages 12 to 21 years. Purposive sampling was based on sociodemographic and clinical characteristics. Phone interviews were audio-recorded, transcribed, and analyzed using inductive thematic codebook analysis. RESULTS: We interviewed 20 parents and identified 2 thematic categories, outcomes and interactions, in parents accessing clinical notes. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. The ICU context and power dynamics were a meta-theme, influencing multiple themes. All parents reported positive qualities of note access despite negative consequences related to content, language, burdens, and lack of support. Parents suggested practice and design improvements surrounding open note access. CONCLUSIONS: Parental experiences with open notes reveal new, unaddressed considerations for documentation access, practices, and purpose. Parents leverage open notes by negotiating between the power dynamics in the ICU and the uncertain boundaries of their role and authority in the electronic health record.

Ethical considerations in the use of RhD-positive blood products in trauma.

BACKGROUND: Prehospital and early in-hospital use of low titer group O whole blood (LTOWB) for life-threatening bleeding has been independently associated with improved survival compared to component therapy. However, when RhD-positive blood products are administered to RhD-negative females of childbearing potential (FCP), there is a small future risk of hemolytic disease of the fetus and newborn (HDFN). This raises important ethical questions that must be explored in order to justify the use of RhD-positive blood products, including LTOWB, both in clinical practice and research. METHODS: This essay explores the ethical challenges related to RhD-positive blood product administration to RhD-negative or RhD-unknown FCPs as a first-line resuscitation fluid in the trauma setting. These ethical issues include: issues related to decision-making, ethical analysis based on the doctrine of double effect (DDE), and attendant obligations incurred by hospitals that administer RhD-positive blood to FCPs. RESULTS: Ethical analysis through the use of the DDE demonstrates that utilization of RhD-positive blood products, including LTOWB, in the early resuscitation of FCPs is an ethically appropriate approach. By accepting the risk of HDFN, hospitals generate obligations to promote blood donation, evaluate for alloimmunization and counsel patients on the future risk of HDFN, and maintain an understanding of the ethical rationale for RhD-positive blood transfusion.

Ritual and Power in Medicine: Questioning Honor Walks in Organ Donation.

Honor walks are ceremonies that purportedly honor organ donors as they make their final journey from the ICU to the OR. In this paper, we draw on Ronald Grimes' work in ritual studies to examine honor walks as ceremonial rituals that display medico-technological power in a symbolic social drama (Grimes, 1982). We argue that while honor walks claim to honor organ donors, ceremonies cannot primarily honor donors, but can only honor donation itself. Honor walks promote the quasi-religious idea of donation as a "good death," and mask the ambiguity and discomfort inherent in organ donation to promote greater acceptance by the medical community. While some goods may be achieved through honor walks, particularly for donor families, it is still important to examine the negative work done by this practice.

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.

Triage Policies at U.S. Hospitals with Pediatric Intensive Care Units.

OBJECTIVES: To characterize the prevalence and content of pediatric triage policies. METHODS: We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators. RESULTS: Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children's hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions. CONCLUSIONS: While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities.

Caring for Critically Ill Adults With Coronavirus Disease 2019 in a PICU: Recommendations by Dual Trained Intensivists.

OBJECTIVE: In the midst of the severe acute respiratory syndrome coronavirus 2 pandemic, which causes coronavirus disease 2019, there is a recognized need to expand critical care services and beds beyond the traditional boundaries. There is considerable concern that widespread infection will result in a surge of critically ill patients that will overwhelm our present adult ICU capacity. In this setting, one proposal to add "surge capacity" has been the use of PICU beds and physicians to care for these critically ill adults. DESIGN: Narrative review/perspective. SETTING: Not applicable. PATIENTS: Not applicable. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The virus's high infectivity and prolonged asymptomatic shedding have resulted in an exponential growth in the number of cases in the United States within the past weeks with many (up to 6%) developing acute respiratory distress syndrome mandating critical care services. Coronavirus disease 2019 critical illness appears to be primarily occurring in adults. Although pediatric intensivists are well versed in the care of acute respiratory distress syndrome from viral pneumonia, the care of differing aged adult populations presents some unique challenges. In this statement, a team of adult and pediatric-trained critical care physicians provides guidance on common "adult" issues that may be encountered in the care of these patients and how they can best be managed in a PICU. CONCLUSIONS: This concise scientific statement includes references to the most recent and relevant guidelines and clinical trials that shape management decisions. The intention is to assist PICUs and intensivists in rapidly preparing for care of adult coronavirus disease 2019 patients should the need arise.

Suffering and the moral orientation of presence: lessons from Nazi medicine for the contemporary medical trainee.

Medical trainees should learn from the actions of Nazi physicians to inform a more just contemporary practice by examining the subtle assumptions, or moral orientations, that led to such heinous actions. One important moral orientation that still informs contemporary medical practice is the moral orientation of elimination in response to suffering patients. We propose that the moral orientation of presence, described by theologian Stanley Hauerwas, provides a more fitting response to suffering patients, in spite of the significant barriers to enacting such a moral orientation for contemporary trainees.

Clerkship Ethics: Unique Ethical Challenges for Physicians-in-Training.

Three ethical conflicts in particular are paradigmatic of what we define as "clerkship ethics." First, a distinction that differentiates the clerkship student from the practicing physician involves the student's principal role as a learner. The clerkship student must skillfully balance her commitment to her own education against her commitment to patient care in a fashion that may compromise patient care. While the practicing physician can often resolve the tension between these two goods when they come into conflict, the clerkship student is left with a more ambiguous set of choices. Second, evaluative scrutiny during clinical clerkships often forces medical students to balance doing what is morally fitting against the perceived expectations of the medical teams in which they work. Third and finally, a deeply entrenched culture of medical hierarchy presents a particular challenge to innovation and improvement in ethics education during the clerkship years. Students regard faculty as exemplars, but are not provided with the tools to assess when technical medical competence is not matched by moral competence; moreover, these faculty are unlikely to have experienced the ethics education in which students are asked to demonstrate mastery.

Blood cultures in the evaluation of uncomplicated skin and soft tissue infections.

BACKGROUND: Blood cultures are often obtained in children hospitalized with skin and soft tissue infections (SSTIs). Because little evidence exists to validate this practice, we examined the yield of blood cultures in the evaluation of immunocompetent children with SSTIs. METHODS: Medical records were reviewed for all children admitted between January 1, 2007 and December 31, 2009 after emergency department evaluation and diagnosis of cellulitis or abscess. We compared patients with SSTIs (n = 482) with those with complicated SSTIs (cSSTIs; n = 98). A cSSTI was defined as surgical or traumatic wound infection, need for surgical intervention, or infected ulcers or burns. The SSTI group included patients without complicating factors. RESULTS: None of the patients in the SSTI group had a positive blood culture. In the cSSTI group, 12.5% of blood cultures were positive. The mean length of hospital stay (LOHS) of children with SSTIs was shorter than that of those with cSSTIs (P < .001). In the SSTI group, obtaining a blood culture was associated with a higher mean LOHS (P = .044). CONCLUSIONS: Blood cultures are not useful in evaluating immunocompetent children who are admitted to the hospital with uncomplicated SSTIs, and they are associated with a nearly 1-day increase in mean LOHS.

Interpeduncular fossa lipoma: a novel cause of oculomotor nerve palsy in childhood.

Oculomotor nerve palsy is a rare finding in children and, when reported, is most frequently either congenital or acquired from postnatal trauma, infection, aneurysm, or migraine. Intracranial lipomas also represent an uncommon finding in children, and although their development is not completely understood, they are now thought to be congenital in nature. Here, we describe the case of a 23-month-old boy presenting to the emergency department with left-sided, complete, pupil-involving oculomotor nerve palsy. On magnetic resonance imaging, he was found to have an intracranial lipoma of the left interpeduncular fossa. The patient had gradual and spontaneous improvement of symptoms, with complete resolution reported at the 4-month follow-up visit. However, a second magnetic resonance image at 6 months revealed that the lipoma did not change in size. To our knowledge, intracranial lipomas have been previously reported as a possible cause of partial oculomotor nerve palsy in only one adult and have never been reported in a child. In addition, we did not find any reports of intracranial lipomas as a cause of complete, pupil-involving oculomotor palsy, although they are known to cause other cranial nerve pathology. We conclude that intracranial lipomas, although rare, should be considered in the differential diagnosis for oculomotor nerve palsy in children. Further investigation is needed to determine the true incidence of this association.