Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC. A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in English over the past 5 years (2016-2020), but older articles were considered when relevant. The consensus on the fundamental points, standards of care and paper contents was reached by open discussion. Fundamental points were defined regarding the definition of PPC, eligibility criteria and the magnitude of the need for PPC, while standards were redefined for the following six areas: 1) clinical, developmental, psychological, social, ethical and spiritual needs; 2) end-of-life care; 3) care models and settings of care; 4) PPC in humanitarian emergencies; 5) care tools; and 6) education and training for healthcare providers. The present document, developed with the contribution of an international group of experts from different countries, experiences and models of care, provides fundamental points and standards for a wider implementation of PPC worldwide.
During the COVID-19 pandemic, evidence-based resources have been sought to support decision-making and strategically inform hospitals’ policies, procedures, and practices. While greatly emphasizing protection, most guiding documents have neglected to support and protect the psychosocial needs of frontline health care workers and patients and their families during provision of palliative and end-of-life care. Consequently, the stage has been set for increased anxiety, moral distress, and moral injury and extreme moral hazard. A family-centered approach to care has been unilaterally relinquished to a secondary and nonessential role during the current crisis. This phenomenon violates a foundational public health principle, namely, to apply the least restrictive means to achieve good for the many. Instead, there has been widespread adoption of utilitarian and paternalistic approaches. In many cases the foundational principles of palliative care have also been neglected. No circumstance, even a global public health emergency, should ever cause health care providers to deny their ethical obligations and human commitment to compassion. The lack of responsive protocols for family visitation, particularly at the end of life, is an important gap in the current recommendations for pandemic triage and contingency planning. A stepwise approach to hospital visitation using a tiered, standardized process for responding to emerging clinical circumstances and individual patients’ needs should be considered, following the principle of proportionality. A contingency plan, based on epidemiological data, is the best strategy to refocus health care ethics in practice now and for the future.
11 January 2022 in Journal of Pain and Symptom Management
Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment. Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures. This study aims to assess topics related to the end of life care in Brazilian pediatric intensive care units from the perspective of a multidisciplinary team. The authors used a tested questionnaire, utilizing Likert-style and open-ended questions. After ethics committee approval, it was sent by email from September to November/2019 to three Pediatric Intensive Care Units in the South and Southeast of Brazil. One unit was exclusively dedicated to oncology patients; the others were mixed units. From 144 surveys collected (23% response rate) 136 were analyzed, with 35% physicians, 30% nurses, 21% nurse technicians, and 14% physiotherapists responding. Overall, only 12% reported enough end-of-life care training and 40% reported never having had any, albeit this was not associated with the physician's confidence in forgoing life-sustaining treatment. Furthermore, 60% of physicians and 46% of other professionals were more comfortable with non-escalation than withdrawing therapies, even if this could prolong suffering. All physicians were uncomfortable with palliative extubation; 15% of all professionals have witnessed it. The oncologic team uniquely felt that "resistance from the teams of specialists" was the main barrier to end-of-life care implementation. Most professionals felt unprepared to forego life-sustaining treatment. Even for terminally ill patients, withholding is preferred over the withdrawal of treatment. Socio-cultural barriers and the lack of adequate training may be contributing to insecurity in the care of terminally ill patients, diverging from practices in other countries.
Acute necrotizing encephalopathy of childhood (ANEC) is a rare inflammatory neurological disease with characteristic neuroimaging findings commonly leading to disability or death. It is associated with a variety of infectious agents, most commonly influenza. This study is a retrospective case series describing three children presenting with ANEC during the 2023-2024 influenza season. All patients were influenza A positive with a variable duration of prodromal infectious symptoms. Each presented with witnessed or suspected seizures and persistent encephalopathy. Initial computed tomography (CT) was unremarkable in two patients; however, on follow-up neuroimaging all evolved multifocal brain lesions, including symmetric bilateral thalamic involvement consistent with ANEC. All patients received intravenous pulse methylprednisolone, but the timing and selection of additional immunomodulatory interventions differed between patients. Outcomes spanned from slight disability to death. These patients illustrate the spectrum of ANEC presentations and outcomes and underscore the importance of prompt investigations in children with persistent encephalopathy and prodromal infectious symptoms, even with unremarkable findings on initial CT. The variability in treatment and outcomes within a single center emphasizes the need for further research to establish a better pathophysiologic understanding of ANEC and optimal treatment protocols.
29 June 2023 in Antimicrobial Stewardship & Healthcare Epidemiology
We examined the effect of an antimicrobial stewardship program (ASP), procalcitonin testing and rapid blood-culture identification on hospital mortality in a prospective quality improvement project in critically ill septic adults. Secondarily, we have reported antimicrobial guideline concordance, acceptance of ASP interventions, and antimicrobial and health-resource utilization.
About Me
Clinical Professor of Pediatrics, Div of Critical Care, Uof ALberta. Edmonton. AB Canada.
Clinical Professor of Pediatrics, Div of Critical Care, Uof ALberta. Edmonton. AB Canada.