Perceptions of physicians caring for pediatric patients with cancer in Europe: insights into the use of palliative care, its timing, and barriers to early integration.

Background: Integrating pediatric palliative care (PPC) into pediatric oncology standard care is essential. Therefore, it is important to assess physicians' knowledge and perceptions of PPC to optimize its practice.

Objective: To evaluate the knowledge, comfort levels, and perspectives of physicians regarding the timing and perceived barriers to integrating PPC into pediatric cancer care across Europe.

Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years.

Background: Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the antenatal period.

Methods: A single-centre retrospective chart review of all antenatal referrals to a quaternary children's palliative care service over a 14-year period from 2007 to 2021.

Embracing paediatric palliative care in paediatric oncology from diagnosis onwards.

Paediatric palliative care aims to support children and young people with life-limiting or life-threatening conditions, and their families, from the time of diagnosis. Early integration within oncology has been recognised as having benefits for all involved, whatever the outcome may be. Through improved communication and advance care planning, it enables user-centred care, where concerns about quality of life, preferences and values are given the same relevance as cutting-edge therapy.

Paediatric palliative care in the NICU: A new era of integration.

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS.

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).

Palliative care for children and young people with stage 5 chronic kidney disease.

Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience.

Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents.

Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving pediatric palliative care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015.

Palliative medicines for children - a new frontier in paediatric research.

Objectives: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo.

Key Findings: Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population.

Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: results from a London cohort study and international survey.

Background: More than 90% of patients with diffuse intrinsic pontine glioma (DIPG) will die within 2 years of diagnosis. Patients deteriorate rapidly during the disease course, which severely impairs their quality of life. To date, no specific research on this clinically important subject has been conducted.

Management of respiratory symptoms in paediatric palliative care.

Purpose Of Review: Respiratory symptoms in children with life-limiting and life-threatening conditions are common, distressing and have a lasting impact, yet there is a paucity of evidence to guide clinicians in their management. This article makes a series of recommendations for the management of the most frequent and distressing respiratory symptoms encountered in paediatrics (dyspnoea, cough, haemoptysis and retained secretions) with attention to the evidence from research.

Recent Findings: There are very few paediatric studies exploring any aspect of respiratory symptoms in paediatric palliative care, so much of the evidence base has been drawn from adult studies, few of which have been published in the past 12-18 months.

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice.

Objective: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice.

Methods: Retrospective 10-year (2003-2012) case note review of intensive care patients whose parents elected to withdraw ventilation in another setting. Demographic and clinical data revealed common themes and specific incidents relevant to local guideline development.

Palliative care education in neonatal units: impact on knowledge and attitudes.

Objective: To facilitate improved and earlier access to palliative care for babies, a 4-h workshop on the principles, practice and resources in palliative care was delivered in 21 neonatal units across London. This paper assesses the impact of these workshops.

Design: As part of mixed methods, processual evaluation of a series of education workshops, a pre and post survey instrument was developed, consisting of open and closed questions assessing knowledge of services and attitudes towards palliative care.

Experiences of healthcare professionals in the community dealing with the spiritual needs of children and young people with life-threatening and life-limiting conditions and their families: report of a workshop.

Objective: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.

Method: We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare.

Results: (1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world.

Underlying barriers to referral to paediatric palliative care services: knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom.

Referrals to children's palliative care services typically occur late in the illness trajectory, with many children who would benefit not referred at all. Previous studies report health care professionals' (HCPs) assessment of various parent-related factors as barriers to referral. We conducted a cross-sectional survey of HCPs working in a paediatric tertiary care hospital in the United Kingdom, with an established paediatric palliative care team, to explore staff perceptions of barriers, knowledge and attitudes, with the aim of developing interventions to increase patient access to palliative care services.

Can we truly offer a choice of place of death in neonatal palliative care?

In the developed world, more than 90% of neonatal deaths occur in hospital and most deaths on the neonatal unit follow the planned withdrawal of ventilation. In this paper we look at what choices of place of death can be considered, the support that is available outside the hospital environment and the practicalities of achieving parental choice. We conclude that choices of place of death are usually possible, although there may be practical or resource restraints that affect which choices are available or can be achieved.

Pediatric palliative care: use of opioids for the management of pain.

Pediatric palliative care (PPC) is provided to children experiencing life-limiting diseases (LLD) or life-threatening diseases (LTD). Sixty to 90% of children with LLD/LTD undergoing PPC receive opioids at the end of life. Analgesia is often insufficient.

Paediatric palliative care: coming of age in oncology?

Palliative care in children has been emerging as a clinical subspecialty of paediatrics for many years. It requires the knowledge and experience of a paediatrician, combined with the skills of a palliative care specialist. Both are essential, as a paediatrician may not have advanced knowledge of palliative care and a palliative care specialist is unlikely to be familiar with the complexity of working with families where the child is the patient.

Characteristics of deaths occurring in hospitalised children: changing trends.

Background: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation.

Objectives: To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children.

Methods: Routine administrative data from one large tertiary-level UK children's hospital was examined over a 7-year period (1997-2004) for children aged 0-18 years.