Browse Items · Pediatric Palliative Care Library

Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study

BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…

Lung disease in Niemann-Pick disease

BACKGROUND: Lung involvement in children with Niemann-Pick disease has rarely been studied systematically. OBJECTIVE: To assess the involvement of the lung and the value of bronchoalveolar lavage in children with Niemann-Pick diseases. DESIGN:…

Longitudinal Understanding of Prognosis among Adolescents with Cancer

OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative…

Long-term follow-up, neurological outcome and survival rate in 28 Nordic patients with glutaric aciduria type 1

All 28 patients, 13 females and 15 males, with glutaric aciduria type 1 diagnosed between 1975 and 2001 in Denmark, Finland, Norway and Sweden were identified and studied retrospectively until 2001. Mass screening was not performed. Three were…

Long-term follow-up of neonatal mitochondrial cytopathies: a study of 57 patients

OBJECTIVES: We sought to determine the long-term clinical and biochemical outcome of newborns with mitochondrial cytopathies (MCs) and to identify possible prognostic factors that may modify the course of these diseases. MATERIAL AND METHODS:…

Legal and ethical issues in neonatal nursing

Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being…

Tags: 2016, Anonymous, Gestational Age, Human, January 2018 List, Male, Neonatal Intensive Care Unit, Neonatal Nurse, Newborn, newborn nursing, Nursing Children and Young People, Prematurity, Prognosis

Joubert syndrome: long-term follow-up

Inter-religious perspectives on hope and limits in cancer treatment: one Buddhist chaplain's response to the case

2005

Tags: 2005, Backlog, Buddhism, Corbett-Hemeyer J, Decision Making, Family Health, Humans, Journal Article, Journal Of Clinical Oncology, Mother-child Relations, Neoplasms/drug therapy/pathology/psychology, Palliative Care, PedPal Lit, Prognosis, Religion

Infantile systemic hyalinosis: newly recognized disorder of collagen?

Four infants with stiff skin and painful joint contractures in the first few months of life are described. Other features included small papules, particularly on the face and trunk, perianal nodules, hyperpigmentation over the metacarpophalangeal…

Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit

Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all…

Impact of survival probability, life expectancy, quality of life and patient preferences on do-not-attempt-resuscitation orders in a hospital

Consensus exists that a do-not-attempt-resuscitation order (DNAR) is appropriate if a resuscitation attempt is futile. Less agreement exists when this point is reached. We investigated the influence of three major considerations for in-hospital DNAR…

Tags: 1998, Backlog, Cardiopulmonary Resuscitation, de Haan RJ, de Vos R, Decision Making, DNAR Outcomes, Journal Article, Koster RW, Prognosis, Quality Of Life, Resuscitation, Survival

Identifying futility in a paediatric critical care setting: a prospective observational study

AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care…

How Parents of Children With Cancer Learn About Their Children's Prognosis

OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of…

Tags: 2017, Child, Hospitals Pediatric, Kang TI, Mack JW, Oncology 2018 List, Only Child, Pediatrics, Prognosis, Sisk BA

Hospital care of patients with dementia.

Hope and prognostic disclosure

PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…

Guidance on forgoing life-sustaining medical treatment

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…

Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL

Gender Differences in Depressive Symptoms Following Child Death in Later

Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated…

Gastroesophageal reflux

Feeding jejunostomy in patients with neurologic disorders

A retrospective study of 54 patients who underwent feeding jejunostomy because of dysphagia on a neurologic basis was performed to determine risk factors affecting a postoperative mortality of 33% and six-month mortality of 67%. Advanced patient age,…

Family attitudes toward genomic sequencing in children with cardiac disease

Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to…

Factors related to the quality of life in adolescents with chronic pain

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit

OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU.…

Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study

OBJECTIVE: To describe doctors' prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. DESIGN: Prospective cohort study. SETTING: Five outpatient hospice programmes in Chicago. PARTICIPANTS: 343 doctors…

Tags: 2000, Backlog, Bmj, Christakis NA, Clinical Competence/standards, Cohort Studies, Human, Journal Article, Lamont EB, Male, Medical Errors/statistics & numerical data, Non-U.S. Gov't, Prognosis, Prospective Studies, Support, Survival Rate, Terminal Care/standards, Terminally Ill

Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study

Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are…

Exploring communication difficulties in pediatric hematology: oncology nurses

BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of…

Epidural analgesia for postoperative pain control in children

Ninety-eight continuous postoperative epidurals were administered to 87 children. The patients were divided into two groups: group I included 63 cases in which a 0.0625-0.25% solution of bupivacaine was continuously administered; group II included 35…

Enabling the transition to hospice through effective palliative care

The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed…

Effects of framing and level of probability on patients' preferences for cancer chemotherapy

Although most clinicians agree that patients should be informed about treatment alternatives, little is known about the way patients perceive probabilistic information about treatment outcomes and how it influences the choices they make. The purpose…

Effect of severity of disability on survival in north east England cerebral palsy cohort

AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of…

Early mortality in children with acute lymphoblastic leukemia in a developing country: the role of malnutrition at diagnosis. A multicenter cohort MIGICCL study

Tags: 2017, Adolescent, Age Factors, Alvarez-Rodriguez FJ, Amador-Sanchez R, Body Weights and Measures, Bolea-Murga V, Cardenas-Cardos R, Child, Child Preschool, Children, Comorbidity, de Diego Flores-Chapa J, Developing Countries, Developing World 2018 List, Dorantes-Acosta EM, Duarte-Rodriguez DA, Espinosa-Elizondo RM, Fajardo-Gutierrez A, Female, Flores-Lujano J, Flores-Villegas LV, Gil-Hernandez AE, Gonzalez-Bonilla CR, Humans, Infant, Infant Newborn, Jimenez-Hernandez E, Leukemia, Leukemia & Lymphoma, Male, malnutrition, Malnutrition/diagnosis/epidemiology, Martin-Trejo JA, Martinez-Avalos A, Medina-Sanson A, Mejia-Arangure JM, Mexico/epidemiology, Mortality, Nunez-Enriquez JC, Nunez-Villegas NN, Paredes-Aguilera R, Penaloza-Gonzalez JG, Perez-Saldivar ML, Population Surveillance, Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology/ mortality/therapy, Prevalence, Prognosis, Proportional Hazards Models, Rangel-Lopez A, Remission Induction, Reyes-Zepeda NC, Rivera-Luna R, Rodriguez-Zepeda MD, Socioeconomic Factors, Torres-Nava JR, Velazquez-Avina MM

Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis.

PURPOSE OF REVIEW: Pediatric palliative care, with its emphasis on symptom management and quality of life, is an important aspect of care of children with life-threatening illnesses. We review recent publications with implications for care of these…

Tags: 2006, Backlog, Bereavement, Child, Communication, Current Opinion In Pediatrics, Decision Making, Humans, Journal Article, Longitudinal Studies, Mack JW, Palliative Care, Prognosis, Quality Of Life, Terminal Care, Time Factors, Wolfe J

Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey

BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South…

Tags: 2020, Advance Care Planning, BMC Palliative Care, Kang S H, Kim C H, Kim M S, Lee J, Moon Y J, November 2020 List, Palliative Care, Pediatrician, Prognosis, Song I G

Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids

Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…

Delivery Room Practices For Extremely Preterm Infants: The Harms Of The Gestational Age Label.

Decision aids for advance care planning: an overview of the state of the science.

Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…

Tags: 2014, Advance Care Planning, Annals Of Internal Medicine, Backlog, Butler M, Decision Support Techniques, Humans, Internet, Journal Article, Kane RL, McCreedy E, Prognosis, Ratner E, Shippee N, Terminally Ill

Death in the neonatal intensive care unit: changing patterns of end of life care over two decades

BACKGROUND: Death remains a common event in the neonatal intensive care unit, and often involves limitation or withdrawal of life sustaining treatment. OBJECTIVE: To document changes in the causes of death and its management over the last two…

Current concepts of respiratory complications of neuromuscular disease in children

Chronic neuromuscular diseases affect the respiratory muscles in varying patterns and degrees. As a result, patients with these disorders develop restrictive pulmonary disease, ineffective cough, atelectasis and pneumonia, and chronic respiratory…

Tags: 2000, Backlog, Child, Current Opinion In Pediatrics, Humans, Journal Article, Lung Diseases/diagnosis/etiology/therapy, Neuromuscular Diseases/complications/diagnosis/therapy, Prognosis, Respiratory Insufficiency/diagnosis/etiology/therapy, Schramm CM

COVID-19 Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children and adolescents: a systematic review of critically unwell children and the association with underlying comorbidities

Data show that children are less severely affected with SARS-Covid-19 than adults; however, there have been a small proportion of children who have been critically unwell. In this systematic review, we aimed to identify and describe which underlying…

Congenital disorder of glycosylation type Ia (CDG-Ia): phenotypic spectrum of the R141H/F119L genotype

AIMS: To delineate common and variable features and outcome of children with congenital disorder of glycosylation type Ia (CDG-Ia) caused by the frequent R141H/F119L PMM2 genotype. METHODS: Clinical data on 25 patients (mean age 7.6 years, range…

Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to"

Predicting survival and disclosing the prediction to patients with advanced disease, particularly cancer, is among the most difficult tasks that physicians face. With the de-emphasis of prognosis in favor of diagnosis and therapeutics in the medical…

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