Browse Items · Pediatric Palliative Care Library

The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes

Background and objectives: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery,…

Physician Perceptions of and Barriers to Pediatric Palliative Care for Children with Cancer in Brazil

PURPOSEEarly integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early…

Tags: 2023, 2025 SE2 - LRS, Adult, Agulnik A, Antunes Geronutti Ayub D, Article, Baker JN, Beatriz Costa Neves Do Amaral A, Bereavement, Boldrini E, Brazil, Cancer Palliative Therapy, Child, Childhood Cancer, clinical assessment, Consultation, Cristina Cunha Ferreira EFonseca I, De Oliveira Junior A, Devidas M, emotional support, Esmeraldo Andrade De Almeida A, Female, Francisco Oliveira De Lima A, Friedrich P, Godfrey A, Grief, Health Care Access, health care need, Health Education, Health Survey, Home Care, Human, JCO Global Oncology, Job G, Loggetto P, Lopes Garcia J, Male, McNeil MJ, Medical Expert, Metzger ML, Pediatric Palliative Care, Pediatrics, physical activity, Physician, Physician Attitude, professional knowledge, Qualitative Analysis, Quality Of Life, Regina Costa Murra G, Spiritual Care, World Health Organization

Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing

Abstract Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into…

Pediatric palliative care in patients with cardiovascular disease: The basics of why, when, where, who and how

Abstract Background Pediatric Palliative Care (PPC) has been shown to offer a wide berth of supportive services for families as they navigate life with pediatric heart disease. PPC assists families in medical decision making, symptom management,…

Utilization of a prenatal palliative care consultation pathway for congenital heart disease

Background: A large Midwestern hospital has no consistent process for prenatal integration of palliative care for parents carrying a fetus diagnosed with complex congenital heart disease. The palliative care team is typically consulted postnatally…

Demographic and clinical profile of children with congenital heart diseases receiving palliative care

Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on…

Effect of timing of palliative care consultation on end-of-life care for children with advanced cardiac disease

Background: Pediatric patients with advanced cardiac disease often receive high intensity medical care at the end of life (EOL). Specialized pediatric palliative care (PPC) has been shown to improve symptom management and EOL goal-concordant care,…

Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers

BACKGROUND: Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but…

Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit

Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional…

Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021

Objective: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various…

Moral Distress and Pediatric Palliative Care

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional…

Translation and cultural adaptation of the Italian version of the Paediatric Palliative Screening Scale

The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The Paediatric Palliative Screening Scale is a dedicated German, English, and Portuguese…

Factors associated with family decision-making after pediatric out-of-hospital cardiac arrest

Aim: This study aims to identify demographic factors, area-based social determinants of health (SDOH), and clinical features associated with medical decision-making after pediatric out-of-hospital cardiac arrest (OHCA). Methods: This is a…

Characterizing Pain in Pediatric Palliative Care Clinical Documentation

Outcomes: 1. Attendees will be able to identify the methods used to abstract and characterize pain from the electronic health record of children and adolescents with cancer receiving palliative care services. 2. Attendees will be able to describe the…

Role of Pediatric Palliative Care in German-Speaking Centers for Heart Transplantation

Background: Pediatric palliative care (PPC) aims to improve quality of life for patients with life-limiting diseases and complex symptoms irrespective of cure-directed therapy. Generally an early integration of PPC is recommended. This is also the…

Gastrointestinal symptoms and problems in children cared by pediatric palliative care teams. Observational study

Gastrointestinal symptoms and problems (GI-SP) frequently cause discomfort and suffering in pediatric patients with life-threatening and/or life-limiting illnesses (LTI/LLI). Pediatric palliative care (PPC) professionals should be aware of them and…

Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement

Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal…

Palliative care for infants with life-limiting conditions: Integrative review

Background: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist…

Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients

The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric…

Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic

Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020,…

Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment

Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…

A One Day Paediatric Palliative Care Study Day Improves Skills

Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological…

Early Integration of Pediatric Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Patients

Topic significance and study purpose/background/rationale: Patients undergoing hematopoietic stem cell transplant (HSCT) are at risk for significant morbidity and mortality and experience distressing psychological and physical symptoms. Access to…

Maternal-fetal surgery as part of pediatric palliative care

Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face…

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…

Social Workers in Pediatric Intensive Care Units: A Physician Perspective

Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…

Bereaved Parents' Perspective on Communication of Transition to Palliative Care in Pediatric Oncology - Hungarian Experience

Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore…

Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort

BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed…

Inequities in Pediatric Palliative Care: Where Are the Consults?*

acial and ethnic inequities are well documented in medicine (1). Patients from historically marginalized groups have consistently reported medical mistrust, poor communication, and perceived discrimination as barriers to the care that they receive…

Fifteen-minute consultation: How to communicate with parents who have a child on life support with no hope of recovery

A child on life support with no hope of recovery is the worst nightmare for parents and for paediatricians. Unfortunately, some children have illnesses or injuries that are not compatible with life. Being in a vegetative state with no meaningful…

Tags: 2022, Archives of Disease in Childhood, Article, August 2022 List, Child, Child Psychiatry, Consultation, counter transference, court, Ethics, Human, motivational interviewing, Palliative Therapy, Psychology, Swanepoel A, transference, Trust

An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers

Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for…

Tags: 2022, Consultation, Cook LJ, DeCourcey DD, Delgado-Corcoran C, Extracorporeal Membrane Oxygenation, Flaherty B, Journal of Palliative Medicine, Mansfield KJ, May 2022 List, Moore D, Olson LM, Pediatric Palliative Care, Survey, Ullrich CK, Wawrzynski SE

Validation of Administrative Codes for Palliative Care Consultation Among Critically Ill Children

OBJECTIVES: To determine the validity of palliative care (PC) administrative codes (V66.7 and Z51.5) among critically ill pediatric patients. METHOD(S): In this single-center retrospective cohort study, we included all hospitalizations with a PICU…

Tags: 2021, administrative codes, April 2021 List, Consultation, Critically Ill Children, Czaja AS, Hospital Pediatrics, O'Keefe S, Pediatric Palliative Care, Picu

Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital

BACKGROUND: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. PURPOSE: The…

Tags: 2020, Advances in Neonatal Care, Consultation, Hertzberg V, Infants, May 2020 List, McLaughlin S N, Neonatal Palliative Care, Palliative Care, Piazza A J, Song M K

GPs' role in caring for children and young people with life-limiting conditions: a retrospective cohort study

Background GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic…

Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study

Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in…

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