Palliative Care for Children in Hospital: Essential Roles

Drake, Ross

doi:10.3390/children5020026

Cited by 9 publications

(7 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Of the 4821 children who died on the PICU during that period, 72.9% had a life-limiting condition. 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 [ 40 ].…”

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

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

Friedrichsdorf

Bruera

2018

Children

View full text Add to dashboard Cite

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.

show abstract

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

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

Friedrichsdorf

Bruera

2018

Children

View full text Add to dashboard Cite

show abstract

“…Since the establishment of the first children's hospice in 1982 (UK) and the pioneering hospital-based PPC service in 1986 at Great Ormond Street Hospital (UK), PPC has evolved to meet children's needs. 4 If ensuring comfort at the end of life remains a hallmark of PPC, its scope of practice extends way beyond this. PPC can be introduced at any time during an illness course (Figure 1).…”

Section: Discussionmentioning

confidence: 99%

“…3 The implementation of this type of care for children has been rather variable and mostly limited to high human development index countries. 4 For nearly 2 decades, the National Academy of Medicine and the American Academy of Pediatrics have recommended the involvement of PPC early in the disease trajectory and concurrent with disease-modifying treatments. 5 Nevertheless, late or absent referrals continue to be common as illustrated, for example, by a study where only 44.2% of children diagnosed with advanced cancer were referred to an available PPC team.…”

Section: Introductionmentioning

confidence: 99%

Addressing 10 Myths About Pediatric Palliative Care

Sadler

Khan

Alghamdi

et al. 2023

Am J Hosp Palliat Care

View full text Add to dashboard Cite

With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.

show abstract

“…Com a implantação dos cuidados paliativos no hospital, a morte saiu do espaço das intercorrências para o espaço do cuidado, repercutindo no conhecimento e percepção dos profissionais sobre os cuidados paliativos. Isso é relevante, pois os profissionais do hospital precisam conhecer adequadamente os cuidados paliativos e realizar a identificação precoce de crianças e famílias que poderiam se beneficiar desses cuidados, bem como a integração da abordagem paliativa ao tratamento, minimizando trajetórias fúteis e consequentes sofrimentos 27 .…”

Section: Unidade Casounclassified

Dinâmica da oferta de cuidados paliativos pediátricos: estudo de casos múltiplos

et al. 2020

View full text Add to dashboard Cite

O objetivo foi analisar a dinâmica que envolve a oferta de cuidados paliativos para crianças elegíveis, na perspectiva de profissionais e familiares. Foi realizado estudo exploratório qualitativo do tipo de casos múltiplos. Trata-se de um recorte dos dados de tese que avaliou o cuidado oferecido a crianças internadas, elegíveis para cuidados paliativos. Os dados foram coletados em hospital de ensino, referência para atendimento de alta complexidade, em São Luís, Maranhão, Brasil, entre outubro de 2016 e julho de 2017, interpretados por análise temática. Os participantes foram 18 familiares e 30 profissionais. As unidades de caso envolveram nove crianças, entre um e oito anos de idade, sendo cinco casos elegíveis para cuidados exclusivos e quatro para cuidados integrados. Três categorias emergiram das falas: (1) compreensão equivocada do conceito de cuidados paliativos; (2) comunicação da notícia; (3) integralidade e fragmentação no contexto dos cuidados paliativos. A compreensão equivocada dos cuidados paliativos pediátricos interferiu na abordagem criança/familiar e postergou o início dos cuidados. Sentimentos de insegurança, medo, resistência e culpa estiveram presentes entre os envolvidos nesse cuidado. O processo de comunicação e as relações apresentaram fragilidades. O cuidado perpassou por integralidade e fragmentação. O cuidado apresenta fragilidades e falta de conhecimento, demanda investimentos na formação e no preparo dos profissionais, no compartilhamento de decisões e no acolhimento dos familiares. Os cuidados paliativos mexem com valores culturais-religiosos de vida e morte, e a educação nesse sentido mostra-se como um caminho cheio de desafios, dentre vários outros necessários.

show abstract

Palliative Care for Children in Hospital: Essential Roles

Cited by 9 publications

References 17 publications

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

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

Addressing 10 Myths About Pediatric Palliative Care

Dinâmica da oferta de cuidados paliativos pediátricos: estudo de casos múltiplos

Contact Info

Product

Resources

About