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palliative care and pediatric

Megan J Thorvilson, Aubrey J Manahan, Brenda M Schiltz, Christopher A Collura
For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home to achieve family-centered goals of care. Palliative transport may also present an opportunity to prioritize cultural care and rituals at end of life which cannot be provided in the hospital. We describe a case series of pediatric patients from communities espousing markedly diverse cross-cultural values and limited financial resources...
December 4, 2018: Journal of Palliative Medicine
Abhay Srinivasan, Anthony K Guzman, Elizabeth B Rand, Jack Rychik, David J Goldberg, Pierre A Russo, Anne Marie Cahill
BACKGROUND: Patients who have undergone the Fontan operation for palliation of congenital heart disease with single-ventricle pathophysiology are at high risk for developing progressive liver fibrosis. Pathological assessment from percutaneous liver biopsy is central to the management of Fontan-associated liver disease, but liver biopsy in this vulnerable population poses unique challenges and potential risks. OBJECTIVE: This retrospective study describes our experience with percutaneous liver biopsy performed to assess changes of Fontan-associated liver disease, with particular regard to procedural outcomes...
November 30, 2018: Pediatric Radiology
Charlene M T Robertson, Karin T Bork, Gerda Tawfik, Gwen Y Bond, Leonora Hendson, Irina A Dinu, Elham Khodayari Moez, Ivan M Rebeyka, Gonzalo Garcia Guerra, Ari R Joffe
OBJECTIVE: To reduce bilateral delayed-onset progressive sensory permanent hearing loss using a systems-wide quality improvement project with adherence to best practice for the administration of furosemide. DESIGN: Prospective cohort study with regular audiologic follow-up assessment of survivors both before and after a 2007-2008 quality improvement practice change. SETTING: The referral center in Western Canada for complex cardiac surgery, with comprehensive multidisciplinary follow-up by the Complex Pediatric Therapies Follow-up Program...
November 26, 2018: Pediatric Critical Care Medicine
Ross Pinkerton, Leigh Donovan, Anthony Herbert
Meeting shortfalls in the provision of care to adolescents and young adults with cancer has focused largely on improving outcomes and psychosocial support. A significant percentage of adolescents and young adults with cancer will die of disease because of initial poor prognosis conditions or disease relapse. In adults, progress has been made in the concept of an integrated cancer/palliative care service. In pediatric oncology, the application of this philosophy of care has lagged behind somewhat. In the case of adolescents, particularly those with advanced cancer, the palliative care needs, in a broader sense than only end-of-life care, are often not adequately met, irrespective of whether treatment is delivered in a pediatric or adult cancer service...
November 2018: Cancer Journal
Meaghann S Weaver, Christopher Wichman
Palliative care competencies at the pediatric resident training level expand learned knowledge into behavior. The objective of this study was to investigate mode of palliative care education delivery preferred by pediatric residents and to report on participatory approach to resident palliative care curriculum design. A one-hour monthly palliative care curriculum was designed and implemented in a participatory manner with 20 pediatric residents at a free-standing Midwestern children's hospital. Outcome measures included pediatric residents' personal attitude and perceived training environment receptivity before and after implementation of a palliative care competency-based curriculum...
November 22, 2018: Children
Taelyr Weekly, Beverly Riley, Christopher Wichman, Melissa Tibbits, Meaghann Weaver
CONTEXT: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital. OBJECTIVES: To explore the impact of massage therapy on pediatric palliative care patients' symptom burden and medication use pattern, to describe the impact of massage therapy on family caregiver distress, and to report on bedside nursing staff perception of massage therapy for children and their families. METHODS: A 1-time point, single-center exploratory study offering 10-minute bedside massage to children receiving palliative care and 10-minute massage to their family caregivers...
November 22, 2018: Journal of Palliative Care
Sara Rhodes Short, Rachel Thienprayoon
This article reviews the state and practice of pediatric palliative care (PC) within the pediatric intensive care unit (PICU) with specific consideration of quality issues. This includes defining PC and end of life (EOL) care. We will also describe PC as it pertains to alleviating children's suffering through the provision of "concurrent care" in the ICU environment. Modes of care, and attendant strengths, of both the consultant and integrated models will be presented. We will review salient issues related to the provision of PC in the PICU, barriers to optimal practice, parental, and staff perceptions...
October 2018: Translational Pediatrics
Kevin Madden, Diane Liu, Eduardo Bruera
CONTEXT: Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. OBJECTIVES: To better understand the attitudes, beliefs, and practices of pediatric palliative care physicians regarding the use of methadone in children with advanced cancer. METHODS: A survey was sent to The American Academy of Pediatrics Section of Hospice and Palliative Medicine LISTSERV®...
November 14, 2018: Journal of Pain and Symptom Management
Abdulaleem Alatassi, Silvia Fernández Mulero, Nancy Massoud, Zainab Alzayer, Ahmed Haroun Mahmoud
Patients with single ventricle physiology (SVP) are a particularly challenging population with congenital heart disease (CHD); they will go for staged, palliation ending in the Fontan circulation. Nowadays, with improvement in surgical procedures for CHD, these patients become growing population, and noncardiac surgeries become not uncommon. The authors report different anesthesia approaches for four pediatric patients with SVP underwent ten noncardiac procedures done under general anesthesia following the different stages of palliation at King Abdulaziz Medical City, Riyadh, Kingdom of Saudi Arabia, between 2009 and 2015 and do a brief review of the literature on this topic...
October 2018: Saudi Journal of Anaesthesia
Maryam Pakseresht, Shahram Baraz, Maryam Rassouli, Nahid Rejeh, Shahnaz Rostami, Leila Khanali Mojen
Aim: The aim of this study is to describe the experiences of other countries regarding the status of pediatric palliative care in the field of symptom management and to compare it with the current status in Iran to achieve an appropriate level of symptom management for children with cancer. Materials and Methods: This is a comparative study. The research population includes the palliative care systems of Jordan, England, Australia, and Canada, which were ultimately compared with Iran's palliative care system...
October 2018: Indian Journal of Palliative Care
Arunangshu Ghoshal, Pradnya Talawadekar, Anil Palleri, Joan Marston, MaryAnn Muckaden
Background: The "Children's Palliative Care Project" was initiated in October 2010 in the Indian state of Maharashtra with a view to improve the quality of life of children with life-limiting conditions. This study evaluates its education and training component through a questionnaire. Materials and Methods: A cross-sectional survey was carried out pre-/post-training among 258 doctors, nurses, social workers, and counselors at three sites in Maharashtra in March 2015...
October 2018: Indian Journal of Palliative Care
Sarah B Green, Adelais Markaki
OBJECTIVE: Clinician education and expertise in palliative care varies widely across pediatric oncology programs. The purpose of this evidence-based practice review was to identify interprofessional palliative care education models applicable to pediatric oncology settings as well as methods for evaluating their impact on clinical practice. RESULTS: Based on a literature search in PubMed, CINAHL and Embase, which identified 13 articles meeting inclusion/exclusion criteria, the following three themes emerged: (1) establishment of effective modalities and teaching strategies, (2) development of an interprofessional palliative care curriculum, and (3) program evaluation to assess impact on providers' self-perceived comfort in delivering palliative care and patient/family perceptions of care received...
November 7, 2018: BMC Research Notes
Erica C Kaye, Melanie Gattas, Ashley Kiefer, Jason Reynolds, Kristina Zalud, Chen Li, Zhaohua Lu, Justin N Baker
CONTEXT: Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. OBJECTIVE: To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community. METHODS: A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement...
October 31, 2018: Journal of Pain and Symptom Management
Jori F Bogetz, Maggie C Root, Lisa Purser, Christy Torkildson
OBJECTIVE: This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system. METHODS: Anonymous validated surveys were sent electronically to inpatient nursing unit distribution lists (n = 1315). Reminders were sent through e-mail twice over a two-month data collection period. RESULTS: Response rate was 20...
November 2, 2018: Journal of Palliative Medicine
Eve Namisango, Katherine Bristowe, Matthew J Allsop, Fliss E M Murtagh, Melanie Abas, Irene J Higginson, Julia Downing, Richard Harding
BACKGROUND: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. OBJECTIVE: This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes. METHOD: This is a systematic literature review across multiple databases for identification of eligible primary evidence...
October 26, 2018: Patient
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)...
November 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
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