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Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infa...

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Autores principales: Friedrichsdorf, Stefan J., Bruera, Eduardo
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162556/
https://www.ncbi.nlm.nih.gov/pubmed/30200370
http://dx.doi.org/10.3390/children5090120
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author Friedrichsdorf, Stefan J.
Bruera, Eduardo
author_facet Friedrichsdorf, Stefan J.
Bruera, Eduardo
author_sort Friedrichsdorf, Stefan J.
collection PubMed
description Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.
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spelling pubmed-61625562018-10-16 Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive Friedrichsdorf, Stefan J. Bruera, Eduardo Children (Basel) Editorial Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation. MDPI 2018-08-31 /pmc/articles/PMC6162556/ /pubmed/30200370 http://dx.doi.org/10.3390/children5090120 Text en © 2018 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Editorial
Friedrichsdorf, Stefan J.
Bruera, Eduardo
Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
title Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
title_full Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
title_fullStr Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
title_full_unstemmed Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
title_short Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
title_sort delivering pediatric palliative care: from denial, palliphobia, pallilalia to palliactive
topic Editorial
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162556/
https://www.ncbi.nlm.nih.gov/pubmed/30200370
http://dx.doi.org/10.3390/children5090120
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