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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...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2018
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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. |
format | Online Article Text |
id | pubmed-6162556 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
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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