Low prevalence of palliative care and ethics consultations for children with chronic critical illness
childhood disease th [Therapy];Chronic disease;critical illness;Ethics;Palliative therapy;article;artificial ventilation;consultation;hospital admission;Human;intensive care unit;Length of Stay;prevalence;priority journal;tracheostomy
Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from premature birth and genetic syndromes has improved such that more clinicians offer, and more families request, interventions to prolong their child's life. While some interventions promise cure, others result in chronic disease states that require ongoing medical care.
Paediatric intensive care units (ICUs) across the United States (U.S.) report increasing numbers of children with prolonged and recurrent hospitalisations and medical complexity 1. We have suggested that this population be considered ‘chronically critically ill (CCI)’ 2. The CCI designation for adult ICU patients signals to families and clinicians alike that the patient's prognosis is poorer than predicted by their primary diagnosis alone.
Boss RD;Falck A;Goloff N;Hutton N;Miles A;Shapiro M;Weiss EM;Donohue PK
Acta Paediatrica, International Journal of Paediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.14394" target="_blank" rel="noreferrer noopener">10.1111/apa.14394</a>
Pediatric End-of-Life Care Skills Workshop: A novel, deliberate practice approach
End-of-Life; Simulation; Deliberate Practice; Pediatric Fellows; Pediatrics
INTRODUCTION: Pediatric end of life (EOL) care skills are a high acuity, low occurrence skill set required by pediatric clinicians. Gaps in education and competence for this specialized care can lead to suboptimal patient care and clinician distress when caring for dying patients and their families. METHODS: A half-day workshop using a deliberate practice approach was designed by an inter-professional workgroup including bereaved parent consultants. Pediatric fellows (neonatal-perinatal medicine, critical care, hematology oncology, blood and marrow transplant) and advanced practice providers learned and practiced EOL skills in a safe simulation environment with instruction from interprofessional facilitators and standardized patients. Participant perceived competence (self-efficacy) was measured before, immediately-post, and 3 months post workshop. RESULTS: There were 28 first-time (of 34 total) participants in 4 pilot workshops. Participants reported significantly increased self-efficacy post-workshop for 6 of 9 ratings, which was sustained 3 months afterwards. Most (92%, n=22 of 24 respondents) reported incorporating the workshop training into clinical practice at 3-month follow-up. CONCLUSIONS: With early success of the pilot workshops, future iterative work includes expanding workshops to earlier, interprofessional learners and collecting validity evidence for a competency-based performance checklist tool. A project website (https://z.umn.edu/PECS) was developed for local and collaborative efforts.(1).
Scheurer JM; Norbie E; Bye JK; Villacis-Calderon D; Heith C; Woll A; Shu D; McManimon K; Kamrath H; Goloff N
Acad Pediatr
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.acap.2022.11.006" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2022.11.006</a>