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palliative care and pediatric

Maureen E Lyon, Patricia A Garvie, Lawrence J D'Angelo, Ronald H Dallas, Linda Briggs, Patricia M Flynn, Ana Garcia, Yao I Cheng, Jichuan Wang
OBJECTIVES: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms. METHODS: In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips)...
October 19, 2018: Pediatrics
Melissa Cindy Kong, Helen Ruth Nadel
A 15-year-old boy with autism and swallowing dysfunction presented with a 6-month history of fatigue, intermittent abdominal pain, and weight loss. He later became febrile and had multiple episodes of coffee ground emesis and melena stools. An upper endoscopy showed an esophageal mass, and a subsequent F-FDG PET/CT scan confirmed this finding. PET/CT also revealed metastatic disease in local lymph nodes, thus upstaging the patient and indicating poor prognosis. Consideration of these severe results and the patient's quality of life helped guide decision making in patient management, with the ultimate decision to pursue palliative care...
October 15, 2018: Clinical Nuclear Medicine
Peter H Baenziger, Karen Moody
Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills, which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice, can and should be developed by all providers of neuro-oncology care...
October 13, 2018: Bioengineering
Megan Jordan, Patricia M Keefer, Yu-Lin Amy Lee, Kristin Meade, Jennifer M Snaman, Joanne Wolfe, Arif Kamal, Abby Rosenberg
Given the limited number of pediatric-specific palliative care programs, palliative care providers of all disciplines may be called on to care for infants, children, and adolescents with serious illness. This article provides a review of the unique components of pediatric palliative care, including key roles within an interdisciplinary team, pediatric developmental considerations, use of medical technology and complexities of symptom management in children with serious illness, hospice utilization, as well as pointers for discussions with families regarding a patient's quality of life and goals of care...
October 5, 2018: Journal of Palliative Medicine
Meaghann Shaw Weaver, Anna Powell, Sue Bace, Dale Wratchford
No abstract text is available yet for this article.
September 26, 2018: Journal of Pain and Symptom Management
J Toulouse, M Hully, D Brossier, M-L Viallard, L de Saint Blanquat, S Renolleau, M Kossorotoff, I Desguerre
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital...
September 14, 2018: European Journal of Paediatric Neurology: EJPN
Pierina Lazzarin, Elena Marinelli, Marcello Orzalesi, Luca Brugnaro, Franca Benini
AIM: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the implementation of those principles in hospital. MATERIALS AND METHODS: A multicenter, cross-sectional study to observe the nurses' positions about the 10 rights outlined in the Charter, using an online questionnaire in 5 pediatric hospitals in northern Italy...
September 25, 2018: Journal of Palliative Medicine
Nathalie Gaucher, Nago Humbert, France Gauvin
OBJECTIVES: The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. METHODS: This retrospective chart review was conducted from April 1, 2007, to March 31, 2012, in a tertiary care pediatric university-affiliated hospital. Eligible patients had initial PPC consultations during the study period; all ED visits by these patients were included...
September 25, 2018: Pediatric Emergency Care
Amandine Bertrand, Anna Marcault-Derouard, Yves Devaux, Yves Bertrand, Christophe Bergeron, Véronique Veyet, Marie Cervos, Shirley Filion, Florence Goy, Matthias Schell
BACKGROUND/OBJECTIVE: Our home-care unit (HCU) is specialized for pediatric cancer patients and has a strong palliative care activity. We believe that the introduction of home-care services can influence the place of palliative care and of death as well as the length of hospitalization. We aimed at describing characteristics and care course of patients treated in our HCU, and tried to identify some factors contributing to home care at the end of life. DESIGN/METHODS: We conducted a retrospective, observational, monocentric study about patients in pediatric onco-hematology, treated at least one day in our home-care unit, who died between July 1st 2013 and December 31st 2015...
September 2018: Bulletin du Cancer
Meaghann S Weaver, Colleen Pawliuk, Christopher Wichman
CONTEXT: Implementation of pediatric palliative care as a primary practice relevant for all pediatricians and pediatric subspecialists requires a grounding, shared knowledge. This study reports on the innovative application of a monthly Palliative Care E-Journal Club (Pal Care Club) to foster shared palliative care knowledge hospital wide. OBJECTIVES: To explore the impact of a monthly electronic journal club to increase the number of palliative care-relevant articles read and discussed and to enhance provider comfort with the integration and introduction of palliative care...
September 20, 2018: Journal of Palliative Medicine
Amy Trowbridge, Jennifer K Walter, Eric McConathey, Wynne Morrison, Chris Feudtner
: media-1vid110.1542/5804909711001PEDS-VA_2017-4182 Video Abstract BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient...
October 2018: Pediatrics
Sandra Clancy, Blyth Lord
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion...
October 2018: Child and Adolescent Psychiatric Clinics of North America
Barbara M Sourkes
Pediatric palliative care is a comprehensive treatment approach (physical, psychological, social, spiritual) for children living with life-threatening conditions. These patients and siblings, as well as children of ill parents, face extraordinary psychological challenges. Structured art techniques incorporated into psychotherapy can be powerful for children dealing with life-and-death realities. This article provides the rationale, instructions, and examples for 3 techniques that the author has adapted for children facing illness and bereavement...
October 2018: Child and Adolescent Psychiatric Clinics of North America
Bethany Lockwood, Lisa Humphrey
Mental health professionals can play a key role in helping pediatric patients and their families prepare for and endure the death of a child. Impactful interventions include assisting a family's transition toward acceptance of a child's pending death, using prognostication as a tool in emotional preparedness, and education on expectant symptoms to optimize management and sense of caregiver efficacy.
October 2018: Child and Adolescent Psychiatric Clinics of North America
Rachel Shaw, Hallie Seegal, Joy G Miller, Jessica Keim-Malpass
Current research demonstrates that pediatric symptom management care is often initiated in the late stages of disease once clinicians are no longer able to meaningfully impact symptom burden. Given that physicians or nurse practitioners are responsible for initiating palliative care referrals, it is incumbent upon registered nurses to advocate when improved symptom management care is needed. The pediatric palliative care screening instrument pilot provides a centralized instrument to document and quantify a patient's symptom profile, giving registered nurses the opportunity to objectively communicate and track a patient's need for improved symptom management care within the areas of pain, secretions, dyspnea, intractable seizures, nausea, vomiting, constipation, diarrhea, anorexia, cachexia, sleep disturbance, lethargy, anxiety, depression, and/or agitation...
October 2018: Journal of Hospice and Palliative Nursing: JHPN
Terrah Foster Akard, Verna L Hendricks-Ferguson, Mary Jo Gilmer
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature...
June 25, 2018: Annals of Palliative Medicine
Udayan K Shah, Elissa G Miller, Carly Levy
Palliation in pediatric otorhinolaryngology is a rarely discussed but important aspect of care. This review encapsulates current thinking on pediatric palliative care (PC) and demonstrates, through one case, the impact of integrating PC into clinical care. We encourage early consideration of pediatric palliative care approaches for children with complex otorhinolaryngologic disorders.
October 2018: International Journal of Pediatric Otorhinolaryngology
Jill M Cholette, Ariane Willems, Stacey L Valentine, Scot T Bateman, Steven M Schwartz
OBJECTIVES: To present the recommendations and supporting literature for RBC transfusions in critically ill children with acquired and congenital heart disease developed by the Pediatric Critical Care Transfusion and Anemia Expertise Initiative. DESIGN: Consensus conference series of 38 international, multidisciplinary experts in RBC transfusion management of critically ill children. METHODS: Experts developed evidence-based and, when evidence was lacking, expert-based clinical recommendations and research priorities for RBC transfusions in critically ill children...
September 2018: Pediatric Critical Care Medicine
Raphael Cohen-Almagor
In 2014, Belgium became the first country in the world to legislate euthanasia for children. The decision evoked questions and criticisms in Belgium and in the world at large: should children have the right to ask to die? Are children able to make reasoned and independent choices on such an important matter? Does maturity matter? Are children as autonomous as adults? Is it a logical move to grant terminally ill children who are in intolerable pain this right? What happens if there is a conflict of wishes between the child and parents? This article argues that these questions should be addressed while legislators are fully aware of the relevant medical data regarding child development...
2018: Perspectives in Biology and Medicine
E Linder, A Burguet, F Nobili, R Vieux
CONTEXT: Technological advances in fetal and neonatal medicine, recent changes in the French legal framework, and encouraging results of the long-term outcomes in children with neonatal renal failure provide elements for an ethical reflection. METHODS: We led a nationwide enquiry among French pediatric nephrologists, intensivists, and neonatologists, exploring the decision-making process when contemplating starting renal replacement therapy (RRT) or delivering palliative care to neonates or infants with pre-end-stage or end-stage renal disease; and the ethical quandaries at hand in such scenarios...
August 2018: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
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