As increasing numbers of young people with chronic illness reach adulthood, their ongoing medical care must evolve to be delivered in an adult rather than paediatric setting, a process known as transition. Towards this goal, increasing numbers of…
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…
In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that…
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and…
OBJECTIVE: Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to…
Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the…
One of the most difficult decisions that doctors and parents must make is the decision to withdraw life-sustaining treatment. Doctors find it easier to withdraw treatments in situations where withdrawal will be rapidly fatal rather than in situations…
The aim of this integrative review was to increase knowledge about parents' experiences of palliative care when their child is dying or has died due to illness using Whittemore and Knafl (2005) analysis process. Computerized databases were used to…
OBJECTIVES: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and…
Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of…
Introduction: There is very little data about pediatric palliative care (PPC) patients’ visits to the emergency department (ED). This study’s goal was to determine the characteristics of PPC patients who consult the ED. Methods: A five-year…
OBJECTIVE: The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care. METHODS: We systematically searched online databases to identify articles relating to differences/disparities in…
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's…
PURPOSE: This phenomenological analysis was conducted to explore the experiences of college student volunteers in the field of pediatric palliative care. METHODS: In-depth interviews were conducted with nine study participants who had experience…
OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric…
BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network…
OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…
Venous thromboembolism (VTE) is a leading cause of morbidity and mortality among hospitalized patients, including children. In recent years, it has become clear that hospitalization and critical illness bestow an increased VTE risk in pediatrics and…
OBJECTIVES: The objectives are as follows: 1) estimate palliative care consult rates and trends among critically ill children and 2) characterize which children receive palliative care consults, including those meeting previously proposed…
This study examined the differences in the prescription and administration of analgesics in eight pediatric specialty units. Medical records of patients (n = 153) who were reported by nurses to be having pain were reviewed. Results showed that there…
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about…
Purpose: Preliminary validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) for motor skill assessment in spinal muscular atrophy type I. Methods: A total of 27 subjects 3 to 260 months old (mean =…
Background: The care of pediatric patients with cancer and their families is complex and evolving. Despite significant advances in outcomes, symptoms of disease and complications of therapy continue to cause pain and other symptoms that could be…
OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these…
BACKGROUND: It is important to document the domains surrounding end-of-life (EOL) care in the electronic health record (EHR). No pediatric navigator exists for these purposes. MEASURES: Medical charts were reviewed for documentation surrounding code…
BACKGROUND: Despite the increasing number of studies using photo-elicitation for data collection in qualitative research, there is a need to further explore its use among families of children and adolescents living with chronic illness. OBJECTIVE(S):…
BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context…
BACKGROUND: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational…
New regulatory initiatives have been designed to ensure that new drugs and biologicals include adequate pediatric labeling for the claimed indications at the time of, or soon after, approval. However, because such labeling may not immediately be…
OBJECTIVES: Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to…
BACKGROUND: Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their…
BACKGROUND AND PURPOSE: In the United States, 57,000 children (newborn to 18 years) die annually. Bereaved parents may rely on religious or spiritual beliefs in their grief. The study's purpose was to examine differences in parents' use of spiritual…
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…
OBJECTIVES:
To quantify the use of adult-trained medical subspecialists by children and to determine the association between geographic access to pediatric subspecialty care and the use of adult-trained subspecialists. Children with limited access to…
Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.
A unilateral do not attempt resuscitation (DNAR) order is written by a physician without permission or assent from the patient or the patient's surrogate decision-maker. Potential justifications for the use of DNAR orders in pediatrics include the…
