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Neonatal palliative care

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https://www.readbyqxmd.com/read/28711963/transfer-of-neonates-with-critical-congenital-heart-disease-within-a-regionalized-network
#1
Michael F Swartz, Jill M Cholette, Jennifer M Orie, Marshall L Jacobs, Jeffrey P Jacobs, George M Alfieris
Regionalization of pediatric cardiac surgical care varies between and within states. In most geographic regions, at least some neonates with critical heart disease are transferred from their birth hospital to a different hospital for surgery. The impact of neonatal transfer for surgery, particularly over a considerable distance (>10 miles), has been largely unexplored. We sought to examine the impact of transferring neonates for cardiac surgery. We queried the New York State Cardiac Surgery database (2005-2014) from a single institution to identify neonates born within the cardiac surgery center and those transferred for surgery...
July 15, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28695444/severe-fetal-abnormality-and-outcomes-of-continued-pregnancies-a-french-multicenter-retrospective-study
#2
Marine Bourdens, Julie Tadonnet, Laura Hostalery, Laurent Renesme, Barthélémy Tosello
Objectives To describe a population choosing to continue with their pregnancy despite being eligible to receive a medical termination of pregnancy (TOP). Methods Nine-year retrospective study of data (01/01/2006 to 31/12/2014) from three French prenatal diagnostic centers describing the perinatal outcomes of these pregnancies. Pregnancies were classified according to etiology and severity of its fetal pathology. Several perinatal parameters were described: maternal characteristics, parental prenatal choices and information on the pregnancy and neonatal outcomes...
July 10, 2017: Maternal and Child Health Journal
https://www.readbyqxmd.com/read/28667041/placental-fetal-thrombotic-vasculopathy-occurring-in-association-with-megacystis-microcolon-intestinal-hypoperistalsis-syndrome-a-case-report
#3
Anneliese Vélez-Pérez, Pamela Younes, Nina Tatevian
Megacystis-microcolon-intestinal hypoperistalsis syndrome (MMIHS) is a rare disease of functional obstruction affecting the bladder and intestines, characterized by a markedly distended bladder, microcolon, and decreased or absent intestinal peristalsis. Afflicted neonates have very poor prognosis, usually with fatal outcomes in first days to months of life. Placental fetal thrombotic vasculopathy (FTV) is a thrombo-occlusive disorder of the chorionic plate and fetal circulation. Herein, we describe an undocumented association of MMIHS and placental FTV...
May 2017: Annals of Clinical and Laboratory Science
https://www.readbyqxmd.com/read/28490381/palliative-care-in-the-neonatal-unit-neonatal-nursing-staff-perceptions-of-facilitators-and-barriers-in-a-regional-tertiary-nursery
#4
Meegan Kilcullen, Susan Ireland
BACKGROUND: Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators...
May 11, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28476218/-bioethics-in-end-of-life-decisions-in-neonatology-unresolved-issues
#5
Juan Arnaez, Juan Carlos Tejedor, Sonia Caserío, María Teresa Montes, María Teresa Moral, Javier González de Dios, Alfredo García-Alix
This document is the result of previous work carried out by different expert groups and submitted to multidisciplinary debate at a Conference about controversial, deficient, or new aspects in the field of neonatal palliative care, such as: 1) the deliberative decision-making process, 2) hospital and domiciliary palliative care, 3) donation after controlled cardiac death, and 4) moral stress in professionals. The most relevant conclusions were: the need to instruct professionals in bioethics and in the deliberative method to facilitate thorough and reasonable decision-making; the lack of development in the field of perinatal palliative care and domiciliary palliative care in hospitals that attend newborns; the need to provide neonatal units with resources that help train professionals in communication skills and in the management of moral distress, as well as delineate operational procedure and guidelines for neonatal organ donation...
May 2, 2017: Anales de Pediatría: Publicación Oficial de la Asociación Española de Pediatría (A.E.P.)
https://www.readbyqxmd.com/read/28466610/neonatal-cardiac-surgery-in-the-new-era-lessons-learned-from-1000-consecutive-cases
#6
Gabriel Amir, Georgy Frenkel, Elchanan Bruckheimer, Alexander Lowenthal, Amichay Rotstein, Jacob Katz, Yelena Zeitlin, Ofer Schiller, Einat Birk
BACKGROUND: neonatal cardiac surgery has evolved over the last 50 years with a large percentage of the patients achieving complete physiological repair in the neonatal period. The remaining patients achieve staged palliation with an increasing amount of success. OBJECTIVES: To report our experience with 1000 neonatal cardiac surgical procedures performed in the last 10 years. METHODS: We conducted a retrospective analysis of surgical outcome in all neonatal patients who underwent cardiac surgery between January 2007 and July 2016 at Schneider Children's Medical Center of Israel...
November 2016: Israel Medical Association Journal: IMAJ
https://www.readbyqxmd.com/read/28416424/-first-requests-for-a-regional-pediatric-palliative-care-team-a-prospective-and-observational-study
#7
L Marty, F Bernard, M Pierre, S Bringuier-Branchereau, N Sirvent, A Ribrault
INTRODUCTION: In France, 26 regional pediatric palliative care teams (ERRSPP) were created between 2008 and 2012. We conducted the first prospective French study to describe the main specifications of the initial contact with an ERRSPP and to analyze the responses given. DESIGN AND METHODS: All the requests for interventions on the part of the ERRSPP were collected between September 2013 and September 2014. We prospectively completed a questionnaire on the patient's clinical and demographic data (age, sex, disease), details regarding the request (type of applicant, unit's specialty, request pattern), and the answers provided (interval between diagnosis and request, duration of care by ERRSPP, death, changes compared to the initial request)...
April 14, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28413896/congenital-malformations-palliative-care-and-postnatal-redirection-to-more-intensive-treatment-a-review-at-a-swiss-tertiary-center
#8
Ulrich Pfeifer, Deborah Gubler, Eva Bergstraesser, Dirk Bassler
PURPOSE: The so-called lethal malformations pose ethical challenges. Most affected fetuses die before or at birth. Live-born neonates commonly receive palliative care. If the postnatal course is better than expected, redirection towards more treatment may occur. We aimed to analyze this in a Swiss patient cohort. MATERIALS AND METHODS: Over 6 years, fetal malformation was suspected in 1113 cases. We identified patients prenatally assigned to palliative care, assessed pre- and postnatal diagnoses, and outcomes...
April 16, 2017: Journal of Maternal-fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/28390923/ethical-considerations-in-perinatal-palliative-care
#9
Joana Mendes, Jesse Wool, Charlotte Wool
Clinicians may face new ethical considerations when parents continue pregnancies after receiving life-limiting fetal diagnoses and desire palliative care. In this article we present four ethical considerations in perinatal palliative care: ambiguous terminology in relation to diagnosis or prognosis, differences between bereavement support and palliative care, neonatal organ donation, and postdeath cooling. In this article, we enable readers to consider current topics from different perspectives and reflect on care when confronted with sensitive clinical scenarios...
May 2017: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
https://www.readbyqxmd.com/read/28358379/children-s-outcomes-at-2-year-follow-up-after-4-years-of-structured-multi-professional-medical-ethical-decision-making-in-a-neonatal-intensive-care-unit
#10
J C de Boer, L Gennissen, M Williams, M van Dijk, D Tibboel, I Reiss, S Naghib, J Sol
OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's outcomes at 2-year follow-up. STUDY DESIGN: In an explorative observational study, 61 cases were evaluated. The children involved had been discussed in such a structured way from 2009 to 2012 in a level III-D neonatal intensive care unit...
March 30, 2017: Journal of Perinatology: Official Journal of the California Perinatal Association
https://www.readbyqxmd.com/read/28329111/hypoplastic-left-heart-syndrome-a-novel-surgical-strategy-for-small-volume-centres
#11
Margaux Pontailler, Régis Gaudin, Marien Lenoir, Ayman Haydar, Diala Kraiche, Damien Bonnet, Pascal Vouhé, Olivier Raisky
OBJECTIVES: We describe in a prospective study, a novel surgical technique for the management of hypoplastic left heart syndrome inspired by the hybrid Norwood approach. METHODS: This new neonatal palliation comprises replacement of the patent ductus arteriosus (PDA) and aortic arch plasty with a pulmonary homograft associated with the banding of both pulmonary arteries and atrial septectomy, under cardiopulmonary bypass without aortic clamping and cardioplegia...
May 1, 2017: European Journal of Cardio-thoracic Surgery
https://www.readbyqxmd.com/read/28293976/evolution-of-hybrid-interventions-for-congenital-heart-disease
#12
REVIEW
Hitesh Agrawal, Wail Alkashkari, Damien Kenny
Surgical and transcatheter interventions have seen a tremendous evolution in last three decades. Hybrid technology combines the achievements of both disciplines to bring substantial hemodynamic benefit to patients with congenital heart disease (CHD) in a minimally invasive manner. This collaboration between surgeons and interventionalists will continue to grow as the technology evolves to meet the demands of CHD patients, potentially avoiding cardiopulmonary bypass and vascular access complications as well as optimizing immediate technical outcomes with exit angiography...
April 2017: Expert Review of Cardiovascular Therapy
https://www.readbyqxmd.com/read/28289851/withdrawal-of-artificial-nutrition-and-hydration-in-neonatal-intensive-care-parents-and-healthcare-practitioners-views
#13
Véronique Fournier, Elisabeth Belghiti, Laurence Brunet, Marta Spranzi
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals (HCP) perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 different clinical neonatology departments...
March 13, 2017: Medicine, Health Care, and Philosophy
https://www.readbyqxmd.com/read/28262296/duration-of-mechanical-ventilation-and-perioperative-care-quality-after-neonatal-cardiac-operations
#14
Joshua J Blinder, Ravi Thiagarajan, Kathryn Williams, Meena Nathan, John Mayer, Thomas J Kulik
BACKGROUND: This study was conducted to determine whether the duration of mechanical ventilation (DOMV) could be used to benchmark the overall quality of care after neonatal congenital heart operations. METHODS: Children aged younger than 30 days undergoing cardiac operations were reviewed. Technical adequacy was assessed using the Technical Performance Score (TPS), a previously validated tool for determining the adequacy of a palliative or corrective surgical procedure that uses echocardiography criteria and need for unplanned reintervention to determine technical adequacy...
June 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28255137/clinical-spectrum-of-children-receiving-palliative-care-in-malaysian-hospitals
#15
L A Chong, F Khalid, T B Khoo, S H Teh, G L Kuan, A M Aina Mariana, E Alias, C H Chieng, H Razali, G B Ong, S H Zainah, I N C Shukor, J J Wong
INTRODUCTION: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. METHODS: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out...
February 2017: Medical Journal of Malaysia
https://www.readbyqxmd.com/read/28206733/end-of-life-decisions-in-34-slovene-intensive-care-units-a-nationwide-prospective-clinical-study
#16
Miha Orazem, Urh Groselj, Manca Stojan, Neza Majdic, Gaj Vidmar, Stefan Grosek
BACKGROUND: To determine how end-of-life decisions (EOLD) on limitations of life- sustaining treatment (LST) are made in three different types of intensive care units (ICUs) in Slovenia. METHODS: A national multicenter prospective study among 31 adult and three pediatric/neonatal ICUs (PICUs). The questionnaire form on EOLD was designed to assess the clinical practice. Data were collected between January 1, 2013, and March 31, 2013. For statistical analysis we used IBM® SPSS® Statistics 20 software package...
February 15, 2017: Minerva Anestesiologica
https://www.readbyqxmd.com/read/28168999/palliative-care-approaches-to-neonates-with-chronic-respiratory-failure
#17
Nicolas F M Porta
Neonates with chronic respiratory failure have uncertain prognosis and can face significant treatment burden. As the trajectory of the illness becomes more concerning, consultation with a pediatric palliative service should be considered, especially as therapeutic options shift from standard to "innovative." Benefits include as follows: supporting emotionally conflicted providers and parents, maintaining transparency in determination of goals, and balancing medical progress with each individual patient's and family's best interests...
March 2017: Seminars in Perinatology
https://www.readbyqxmd.com/read/28162789/primary-palliative-care-in-neonatal-intensive-care
#18
Krishelle L Marc-Aurele, Nancy K English
This article explores the 2014 Institute of Medicine׳s recommendation concerning primary palliative care as integral to all neonates and their families in the intensive care setting. We review trends in neonatology and barriers to implementing palliative care in intensive care settings. Neonatal primary palliative care education should address the unique needs of neonates and their families. The neonatal intensive care unit needs a mixed model of palliative care, where the neonatal team provides primary palliative care and the palliative subspecialist consults for more complex or refractory situations that exceed the primary team׳s skills or available time...
March 2017: Seminars in Perinatology
https://www.readbyqxmd.com/read/28140755/when-one-knows-a-fetus-is-expected-to-die-palliative-care-in-the-context-of-prenatal-diagnosis-of-fetal-malformations
#19
Taisa Rocha Catania, Lisandra Stein Bernardes, Glaucia Rosana Guerra Benute, Maria Augusta Bento Cicaroni Gibeli, Nathalia Bertolassi do Nascimento, Tercilia Virginia Aparecida Barbosa, Vera Lucia Jornada Krebs, Rossana P V Francisco
BACKGROUND: Fetal malformations occur in 2% of gestations and are the fifth most common cause of neonatal death in the world. In many cases, fetal malformations result in neonatal death or long stay in intensive care facilities. Families that continue the pregnancy in such a situation need to make choices and cope with an overwhelming number of potential issues. Palliative care starting at the prenatal period is a growing field that allows the entire family to prepare for this difficult situation...
January 31, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28116951/neonatal-respiratory-failure-caused-by-congenital-diffuse-intrinsic-pontine-glioma
#20
Katie M Satrom, Rachel A Phelan, Christopher L Moertel, H Brent Clark, Dana E Johnson, Thomas N George
The authors present a case of diffuse intrinsic pontine glioma presenting in a newborn with stridor and respiratory distress that progressed to respiratory failure. Magnetic resonance imaging (MRI) of the brain revealed findings compatible with the diagnosis of diffuse intrinsic pontine glioma. The family pursued palliative care and postmortem examination confirmed WHO grade III astrocytoma.
May 2017: Journal of Child Neurology
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