International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS
life-limiting conditions; Pediatric palliative care; terminal illness; life-threatening conditions; international standards for pediatric palliative care
CONTEXT: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Benini F; Pappadatou D; Bernadá M; Craig F; De Zen L; Downing J; Drake R; Freidrichsdorf S; Garros D; Giacomelli L; Lacerda A; Lazzarin P; Marceglia S; Marston J; Muckaden MA; Papa S; Parravicini E; Pellegatta F; Wolfe J
Journal of Pain and Symptom Management
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.jpainsymman.2021.12.031" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.12.031</a>
Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination
palliative care; education; survey; Pediatric; training; curriculum
CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: 2011 - 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: 172/786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across 6 continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.
Postier AC; Wolfe J; Hauser J; Remke SS; Baker JN; Kolste A; Dussel V; Bernadá M; Widger K; Rapoport A; Drake R; Chong PH; Friedrichsdorf SJ
Journal of Pain and Symptom Management
2021
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.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.017</a>
The symptoms of dying children.
Child; Female; Humans; Male; Prevalence; Longitudinal Studies; adolescent; Preschool; infant; retrospective studies; Palliative Care/psychology/statistics & numerical data; Affective Symptoms/epidemiology/psychology; Hospitalized/psychology/statistics & numerical data; Intensive Care/psychology/statistics & numerical data; Neoplasms/epidemiology/psychology; Pain/epidemiology/psychology; Respiratory Insufficiency/epidemiology/psychology
The purpose of this study was to examine the symptom prevalence, characteristics, and distress of children dying in hospital. Symptoms during the last week of life were obtained from the medical records. Symptoms and their characteristics during the last day of life were determined by nurse interview. Thirty children with an average age of 8.9 years were evaluated. The dominant disease process was cancer (n=18), most likely location of death intensive care (n=20), and major physiological disturbances at the time of death respiratory failure (n=9) and encephalopathy (n=9). The majority of children (90%) did not have a pre-existing Do Not Resuscitate (DNR) order and 58% of these children had this addressed for the first time in the last day of life. The mean (+/-SD) number of symptoms per patient in the last week of life was 11.1+/-5.6 and six symptoms occurred with a prevalence of 50% or more. The location of death had a significant (P<0.02) impact on the mean number of symptoms: ward (14.3+/-6.1) vs. intensive care (9.5+/-4.7). In general, symptoms in the last day of life were not associated with a high level of distress. In summary, the symptom burden of dying children is high. Symptoms were, at times, distressing but children were generally comfortable. The findings suggest the application of the palliative care paradigm and a more aggressive approach to symptom control to all areas of the hospital may prove beneficial to dying children.
2003
Drake R; Frost J; Collins JJ
Journal Of Pain And Symptom Management
2003
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).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(03)00202-1" target="_blank" rel="noreferrer">10.1016/s0885-3924(03)00202-1</a>