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Neonatal palliative

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https://www.readbyqxmd.com/read/29452600/patterns-of-paediatric-end-of-life-care-a-chart-review-across-different-care-settings-in-switzerland
#1
Karin Zimmermann, Eva Cignacco, Sandra Engberg, Anne-Sylvie Ramelet, Nicolas von der Weid, Katri Eskola, Eva Bergstraesser, Marc Ansari, Christoph Aebi, Reta Baer, Maja Beck Popovic, Vera Bernet, Pierluigi Brazzola, Hans Ulrich Bucher, Regula Buder, Sandra Cagnazzo, Barbara Dinten, Anouk Dorsaz, Franz Elmer, Raquel Enriquez, Patricia Fahrni-Nater, Gabi Finkbeiner, Bernhard Frey, Urs Frey, Jeannette Greiner, Ralph-Ingo Hassink, Simone Keller, Oliver Kretschmar, Judith Kroell, Bernard Laubscher, Kurt Leibundgut, Reta Malaer, Andreas Meyer, Christoph Stuessi, Mathias Nelle, Thomas Neuhaus, Felix Niggli, Geneviève Perrenoud, Jean-Pierre Pfammatter, Barbara Plecko, Debora Rupf, Felix Sennhauser, Caroline Stade, Maja Steinlin, Lilian Stoffel, Karin Thomas, Christian Vonarburg, Rodo von Vigier, Bendicht Wagner, Judith Wieland, Birgit Wernz
BACKGROUND: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland...
February 16, 2018: BMC Pediatrics
https://www.readbyqxmd.com/read/29448010/improved-outcomes-in-management-of-hypoplastic-left-heart-syndrome-associated-with-congenital-diaphragmatic-hernia-an-algorithmic-approach
#2
Kaitlin Balduf, T K Susheel Kumar, Umar Boston, Shyam Sathanandam, Marc V Lee, Tim Jancelewicz, Christopher J Knott-Craig
BACKGROUND: Hypoplastic left heart syndrome (HLHS) is the second most common congenital heart disease associated with congenital diaphragmatic hernia (CDH). The reported survival of neonates with CDH and HLHS is only 1-5%. We review our experience with CDH and HLHS and compare our outcomes to published literature. METHODS: Retrospective review of all neonates with CDH and HLHS at our institution over a 10 year period was performed. The morphology of cardiac and diaphragm defects, clinical course, treatment strategies and outcomes were reviewed and an algorithmic approach is proposed...
February 12, 2018: Seminars in Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/29425520/giessen-procedure-as-comprehensive-stage-ii-palliation-with-aortic-arch-reconstruction-after-hybrid-bilateral-pulmonary-artery-banding-and-ductal-stenting-for-hypoplastic-left-heart-syndrome
#3
REVIEW
Uygar Yörüker, Hakan Akintürk
This article reviews our experience using hybrid stage I palliation in the neonatal period and subsequently with comprehensive stage II palliation for hypoplastic left heart syndrome. Between June 1998 and April 2017, 154 patients with the diagnosis of hypoplastic left heart syndrome and variants underwent a hybrid stage I palliation (bilateral pulmonary artery banding and ductal stenting). One hundred thirty-nine patients could be further univentricularly palliated. One hundred twenty-one patients underwent a comprehensive stage II operation with an operative mortality of 6...
March 2018: Seminars in Thoracic and Cardiovascular Surgery. Pediatric Cardiac Surgery Annual
https://www.readbyqxmd.com/read/29414846/pediatric-palliative-care-in-infants-and-neonates
#4
REVIEW
Brian S Carter
The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns' short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely...
February 7, 2018: Children
https://www.readbyqxmd.com/read/29406374/cerebral-oxygen-metabolism-before-and-after-rbc-transfusion-in-infants-following-major-surgical-procedures
#5
Felix Neunhoeffer, Michael Hofbeck, Martin Ulrich Schuhmann, Jörg Fuchs, Christian Schlensak, Martin Esslinger, Ines Gerbig, Vanya Icheva, Ellen Heimberg, Matthias Kumpf, Jörg Michel
OBJECTIVE: Although infants following major surgery frequently require RBC transfusions, there is still controversy concerning the best definition for requirement of transfusion in the individual patient. The aim of this study was to determine the impact of RBC transfusion on cerebral oxygen metabolism in noncardiac and cardiac postsurgical infants. DESIGN: Prospective observational cohort study. SETTING: Pediatric critical care unit of a tertiary referral center...
February 5, 2018: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/29406007/hyperinsulinism-in-the-neonate
#6
REVIEW
Katherine Lord, Diva D De León
Hyperinsulinism (HI) is the leading cause of persistent hypoglycemia in infants. Prompt recognition and treatment, independent of whether infants have transient or permanent HI, are essential to decrease risk of neurologic damage. The most common form of congenital HI is due to inactivating mutations of the β-cell ATP-sensitive potassium (KATP ) channel (KATP -HI) and is typically diazoxide unresponsive. KATP -HI occurs in diffuse and focal forms. Distinguishing between the 2 forms is crucial, because pancreatectomy is curative in the focal form but palliative in the diffuse form...
March 2018: Clinics in Perinatology
https://www.readbyqxmd.com/read/29378757/systemic-right-ventricle-in-adults-with-congenital-heart-disease-anatomic-and-phenotypic-spectrum-and-current-approach-to-management
#7
REVIEW
Margarita Brida, Gerhard-Paul Diller, Michael A Gatzoulis
The systemic right ventricle (SRV) is commonly encountered in congenital heart disease representing a distinctly different model in terms of its anatomic spectrum, adaptation, clinical phenotype, and variable, but overall guarded prognosis. The most common clinical scenarios where an SRV is encountered are complete transposition of the great arteries with previous atrial switch repair, congenitally corrected transposition of the great arteries, double inlet right ventricle mostly with previous Fontan palliation, and hypoplastic left heart syndrome palliated with the Norwood-Fontan protocol...
January 30, 2018: Circulation
https://www.readbyqxmd.com/read/29375078/nurturing-futility-in-the-nicu-the-dutch-perspective
#8
A A Eduard Verhagen
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a good opportunity to examine how end-of-life decisions are made in Dutch neonatal intensive care units and how medical futility is defined. The Dutch equivalent of medical futility in the context of NICU care has grown and developed rather independently, within the typical legal, ethical, and cultural framework of Dutch society...
2018: Perspectives in Biology and Medicine
https://www.readbyqxmd.com/read/29351695/reasons-for-failure-of-systemic-to-pulmonary-artery-shunts-in-neonates
#9
Keti Vitanova, Cornelius Leopold, Jelena Pabst von Ohain, Cordula Wolf, Elisabeth Beran, Rüdiger Lange, Julie Cleuziou
BACKGROUND:  Systemic-to-pulmonary artery shunt placement is an established palliative procedure for congenital heart disease. Although it is thought to be a simple operation, it is associated with significant morbidity and mortality. METHODS:  Data for all neonates who underwent surgery for a systemic-to-pulmonary artery shunt between 2000 and 2016 were reviewed. The study endpoints were shunt failure and shunt-related mortality. Shunt failure was defined as a shunt dysfunction because of thrombosis or stenosis requiring intervention or reoperation; shunt mortality was defined as death because of a shunt dysfunction...
January 19, 2018: Thoracic and Cardiovascular Surgeon
https://www.readbyqxmd.com/read/29331209/ethical-and-end-of-life-considerations-for-neonates-requiring-ecmo-support
#10
REVIEW
Roxanne Kirsch, David Munson
ECMO has proven to be a life-saving intervention for a variety of disease entities with a high rate of survival in the neonatal population. However, ECMO requires clinical teams to engage in many ethical considerations. Even with ongoing improvements in technology and expertise, some patients will not survive a course of ECMO. An unsuccessful course of ECMO can be difficult to accept and cause a great deal of angst. These questions can result in real conflict both within the care team, and between the care team and the family...
January 10, 2018: Seminars in Perinatology
https://www.readbyqxmd.com/read/29316996/a-randomised-trial-of-early-palliative-care-for-maternal-stress-in-infants-prenatally-diagnosed-with-single-ventricle-heart-disease
#11
Hayley S Hancock, Ken Pituch, Karen Uzark, Priya Bhat, Carly Fifer, Maria Silveira, Sunkyung Yu, Suzanne Welch, Janet Donohue, Ray Lowery, Ranjit Aiyagari
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge...
January 10, 2018: Cardiology in the Young
https://www.readbyqxmd.com/read/29310561/endotoxin-activity-in-neonates-undergoing-cardiac-surgery-cohort-study
#12
Zaccaria Ricci, Simona Benegni, Cristiana Garisto, Isabella Favia, Roberta Haiberger, Luca Di Chiara
BACKGROUND: Endotoxemia in pediatric cardiac surgical patients is poorly understood. The endotoxin activity assay (EAA) levels were examined in neonates undergoing cardiac surgery in order to assess their reference levels and their association with other pre-, intra-, and postoperative risk factors for gut hypoperfusion. We finally observed if refeeding was associated with modification of endotoxin levels. METHODS: In a prospective cohort study, neonates undergoing surgery for correction or palliation were enrolled...
January 2018: World Journal for Pediatric & Congenital Heart Surgery
https://www.readbyqxmd.com/read/29273020/trends-in-cause-and-place-of-death-for-children-in-portugal-a-european-country-with-no-paediatric-palliative-care-during-1987-2011-a-population-based-study
#13
Ana Forjaz de Lacerda, Barbara Gomes
BACKGROUND: Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care, particularly from countries without paediatric palliative care, which constitute the majority worldwide. METHODS: This is an epidemiological study analysing death certificate data of decedents aged between 0 and 17 years in Portugal, a developed Western European country without recognised provision of paediatric palliative care, from 1987 to 2011...
December 22, 2017: BMC Pediatrics
https://www.readbyqxmd.com/read/29215810/pediatric-deaths-attributed-to-complex-chronic-conditions-over-10-years-in-korea-evidence-for-the-need-to-provide-pediatric-palliative-care
#14
Min Sun Kim, Nam Gu Lim, Hyun Joo Kim, Chohee Kim, Jin Yong Lee
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs)...
January 1, 2018: Journal of Korean Medical Science
https://www.readbyqxmd.com/read/29183331/four-successful-pregnancies-in-a-patient-with-fontan-palliation-and-congenital-heart-disease-a-case-report
#15
Khalid S Al Najashi, Syed Mehdi, Shazia Mohsin, Merna Atiyah, Hafez A Abdullah, Jassim Abdulhameed, Ahmed M Al Zahrani
BACKGROUND: Fontan is a palliative procedure in patients with single ventricle. Single ventricle supports systemic cardiac output and pulmonary blood flow is passively directed to the right pulmonary artery. Women with Fontan palliation are reported to have increased maternal risk during pregnancy. There are few reports of successful pregnancies in such cases. However data on these pregnancies is lacking, we consider this to be the first reported from kingdom of Saudi Arabia. CASE PRESENTATION: We present a 35-year-old woman from the Kingdom of Saudi Arabia who had Fontan surgery and who had four successful pregnancies and multiple miscarriages...
November 28, 2017: Journal of Cardiothoracic Surgery
https://www.readbyqxmd.com/read/29179572/when-and-why-do-neonatal-and-pediatric-critical-care-physicians-consult-palliative-care
#16
Claire A Richards, Helene Starks, M Rebecca O'Connor, Erica Bourget, Taryn Lindhorst, Ross Hays, Ardith Z Doorenbos
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29132234/upcycling-umbilical-cords-bridging-regenerative-medicine-with-neonatology
#17
Alvaro Moreira, Yasmeen Alayli, Saloni Balgi, Caitlyn Winter, Samuel Kahlenberg, Shamimunisa Mustafa, Peter Hornsby
Preterm birth is a major health concern that affects 10% of all worldwide deliveries. Many preterm infants are discharged from the hospital with morbidities that lead to an increased risk for neurodevelopmental impairment, recurrent hospitalizations, and life-long conditions. Unfortunately, the treatment of these conditions is palliative rather than curative, which calls for novel and innovative strategies. Progress in regenerative medicine has offered therapeutic options for many of these conditions. Specifically, human umbilical cord mesenchymal stem cells (MSCs) and cord blood (UCB) cells have shown promise in treating adult-onset diseases...
November 27, 2017: Journal of Maternal-fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/29129740/survey-on-neonatal-end-of-life-comfort-care-guidelines-across-america
#18
Shelly Haug, Sara Farooqi, Christopher G Wilson, Andrew Hopper, Grace Oei, Brian Carter
CONTEXT: Infants of age < 1 year have the highest mortality rate in pediatrics. The American Academy of Pediatrics (AAP) published guidelines for palliative care in 2013, however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). OBJECTIVES: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America METHODS: After Institutional Review Board approval (516005), an anonymous, electronic survey was sent to members of the AAP Section on Neonatal-Perinatal Medicine...
November 9, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29128922/causes-of-renal-oligohydramnios-impact-on-prenatal-counseling-and-postnatal-outcome
#19
EDITORIAL
Sebastian Loos, Markus J Kemper
The presence of renal oligohydramnios (ROH) in a fetus has been associated in the past with a poor prognosis for survival, although recent studies have shown that survival has improved considerably due to the advances in neonatology and pediatric nephrology. In an article recently published in Pediatric Nephrology, evaluation of a large series by Mehler and colleagues confirms the improved prognosis, showing a survival rate of 32 of 38 (84%). In addition, only 12 of 35 (34%) neonates required renal replacement therapy...
November 11, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/29121791/unexpected-survivors-children-with-life-limiting-conditions-of-uncertain-prognosis
#20
Savithri Nageswaran, Anna Hurst, Andrea Radulovic
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina...
January 1, 2017: American Journal of Hospice & Palliative Care
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