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.
Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision ...support.
To assess parents' perceptions regarding the relative importance of 12 good-parent attributes.
A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness.
Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics.
The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions.
Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
To determine the association between admission Functional Status Scale (FSS) category and perceived extracorporeal membrane oxygenation (ECMO) candidacy for pediatric acute respiratory failure.
...Prospective, cross-sectional study.
Single-center, quaternary, and ECMO referral academic children's hospital between March 2021 and January 2022.
Pediatric intensivists directly caring for patients admitted with acute respiratory failure secondary to shock or respiratory disease.
None.
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).
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.
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and ...integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy.
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