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Neonatal palliative care

Joseph Sacco, Rebecca Virata
The discontinuation of life sustaining medical treatment (LSMT) in severely and permanently impaired neonates, especially artificial nutrition and hydration (ANH) is subject to uncertainty and controversy. Definitive clinical guidelines are lacking, clinical research is limited, ethical disagreement is commonplace, and while case and statutory law provide legal underpinning for the practice in defined circumstances, uncertainty in this realm likely influences clinical practice. We use the case of a neurologically devastated neonate to highlight and review these arenas, and show how, using available legal, ethical, and clinical standards and practice, the case of Baby O was resolved, and to underline the need for further research in neonatal palliative care...
October 11, 2016: American Journal of Hospice & Palliative Care
Deborah Gilmour, Mark W Davies, Anthony R Herbert
AIM: End-of-life care remains part of the scope of practice in all neonatal units. This study aimed to characterise the end-of-life care provided in an Australian tertiary neonatal centre, where paediatric palliative care was accessible via a consultative service. METHODS: This retrospective cohort study examined indicators of quality palliative care provided to 46 infants born within a 30-month period. The cohort included four infants who received palliative care consultations additional to usual neonatal care...
October 4, 2016: Journal of Paediatrics and Child Health
Melanie J Cozad, Lisa C Lindley, Sandy J Mixer
The use of agency nurses offers flexibility in filling registered nurse (RN) openings during times of shortage, yet little is known about their use in specialized palliative care. In an effort to fill this knowledge gap, this study determined whether significant relationships existed between full-time and part-time RN vacancies and the use of agency RNs within specialized hospices that deliver perinatal end-of-life care to women and their families in the event of miscarriage, ectopic pregnancy, or other neonatal complications resulting in death...
September 27, 2016: Policy, Politics & Nursing Practice
Chloe Shaw, Elizabeth Stokoe, Katie Gallagher, Narendra Aladangady, Neil Marlow
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed...
September 25, 2016: Sociology of Health & Illness
Stephanie Kukora, Nathan Gollehon, Naomi Laventhal
BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in perinatal decision-making. METHODS: A single-centre retrospective cohort study was undertaken for patients referred for outpatient antenatal counselling by a neonatologist over a two-and-half-year period. Patients also receiving APCC were compared with infants with similar prognoses who did not...
September 16, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
J Downing, R Kiman, S Boucher, B Nkosi, B Steel, C Marston, E Lascar, J Marston
The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care...
2016: Ecancermedicalscience
Bahaaldin Alsoufi, Scott Gillespie, William T Mahle, Shriprasad Deshpande, Brian Kogon, Kevin Maher, Kirk Kanter
Significant noncardiac and genetic abnormalities (NC and GA) are common in neonates with congenital heart defects. We sought to examine current-era effect of those abnormalities on early and late outcomes following cardiac surgery. The method from 2002-2012, 1538 neonates underwent repair (n = 860, 56%) or palliation (n = 678, 44%) of congenital heart defects. Regression models examined the effect of NC and GA on operative results, resource utilization, and late outcomes. Neonates with NC and GA (n = 312, 20%) had higher incidence of prematurity (21% vs 13%; P < 0...
2016: Seminars in Thoracic and Cardiovascular Surgery
Jumana Khan, Sian Gaze, Stephen Tomlin
AIM: To explore what involvement pharmacists in the UK have in paediatric palliative care OBJECTIVES: 1. To determine the current roles and services provided by pharmacists to paediatric palliative care patients.2. To establish how other members of the multidisciplinary team perceive the pharmacist's role and the extent to which they value the pharmacist's contributions.3. To identify the references used by the multidisciplinary team to make clinical decisions about medication use in paediatric palliative care patients...
September 2016: Archives of Disease in Childhood
Xavier Durrmeyer, Claire Scholer-Lascourrèges, Laurence Boujenah, Pierre Bétrémieux, Olivier Claris, Micheline Garel, Monique Kaminski, Laurence Foix-L'Helias, Laurence Caeymaex
OBJECTIVE: Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France. DESIGN, SETTING, PATIENTS: Prospective study including neonates, who were liveborn between 22(+0) and 26(+6) weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates...
August 16, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
Mary Longmore
No abstract text is available yet for this article.
May 2016: Nursing New Zealand, Kai Tiaki
Erin R Currie, Becky J Christian, Pamela S Hinds, Samuel J Perna, Cheryl Robinson, Sara Day, Karen Meneses
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death...
September 2016: Journal of Pediatric Nursing
Katrin Mehler, André Oberthuer, Titus Keller, Ingrid Becker, Markus Valter, Bernhard Roth, Angela Kribs
IMPORTANCE: Rates of survival for infants born at the border of viability are still low and vary considerably among neonatal intensive care units. OBJECTIVE: To determine whether higher survival rates and better short-term outcomes for infants born at 22 or 23 weeks' gestation may be achieved by active prenatal and postnatal care. DESIGN, SETTING, AND PARTICIPANTS: Retrospective study of 106 infants born at 22 or 23 weeks of gestation at a level III neonatal intensive care unit at the University of Cologne Medical Centre in Cologne, Germany, between January 1, 2010, and December 31, 2014...
July 1, 2016: JAMA Pediatrics
Naomi J Meesters, Monique van Dijk, Catherijne A J Knibbe, Claudia M G Keyzer-Dekker, Dick Tibboel, Sinno H P Simons
BACKGROUND: Necrotizing enterocolitis (NEC) is known as an extremely painful childhood condition. OBJECTIVES: The objective of this study was to explore pain management around NEC-related surgery in our neonatal intensive care unit (NICU) from a chart review of prospectively collected data on 60 operated NEC patients admitted between 2008 and 2013 with a median (IQR) gestational age of 28.3 (25.5-31.6) weeks. METHODS: Pain medication data and pain scores (i...
2016: Neonatology
Craig G Rusin, Sebastian I Acosta, Lara S Shekerdemian, Eric L Vu, Aarti C Bavare, Risa B Myers, Lance W Patterson, Ken M Brady, Daniel J Penny
OBJECTIVES: Sudden death is common in patients with hypoplastic left heart syndrome and comparable lesions with parallel systemic and pulmonary circulation from a common ventricular chamber. It is hypothesized that unforeseen acute deterioration is preceded by subtle changes in physiologic dynamics before overt clinical extremis. Our objective was to develop a computer algorithm to automatically recognize precursors to deterioration in real-time, providing an early warning to care staff...
July 2016: Journal of Thoracic and Cardiovascular Surgery
Koravangattu Sankaran, Erin Hedin, Heather Hodgson-Viden
OBJECTIVE: To describe the processes followed by a neonatal team engaging parents with respect to end of life care of babies in whom long term survival was negligible or impossible; and to describe feedback from these parents after death of their child. METHODS: A retrospective review was conducted of health records of neonates who had died receiving palliative care over a period of 5 years at a tertiary neonatal centre. Specific inclusion criteria were determined in advance that identified care given by a dedicated group of caregivers...
May 2016: Zhongguo Dang Dai Er Ke za Zhi, Chinese Journal of Contemporary Pediatrics
Alison J Falck, Sheela Moorthy, Brenda Hussey-Gardner
BACKGROUND AND PURPOSE: The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care...
June 2016: Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses
Bahaaldin Alsoufi, Courtney McCracken, Brian Schlosser, Ritu Sachdeva, Andrew Well, Brian Kogon, William Border, Kirk Kanter
BACKGROUND: Management of infants with heterotaxy syndrome and functional single ventricle is complicated due to associated cardiac and extracardiac anomalies. We report current era palliation results. METHODS: Between 2002 and 2012, 67 infants with heterotaxy syndrome underwent multistage palliation. Competing risks analyses modeled events after surgery (death vs Glenn procedure) and examined factors associated with survival. In addition, early and late outcomes following first-stage palliation surgery were compared with a matched contemporaneous control group of patients with nonheterotaxy single ventricle anomalies...
May 2016: Journal of Thoracic and Cardiovascular Surgery
Mary Longmore
No abstract text is available yet for this article.
February 2016: Nursing New Zealand, Kai Tiaki
Stephanie Lynema, Carlen G Fifer, Naomi T Laventhal
For premature infants with congenital heart disease (CHD), it may be unclear when the burdens of treatment outweigh potential benefits. Parents may thus have to choose between comfort care at birth and medical stabilization until surgical repair is feasible. Better defined outcome data, including risk factors for mortality, are needed to counsel expectant parents who are considering intensive care for premature infants with CHD. We sought to evaluate outcomes in this population to inform expectant parents considering intensive versus palliative care at birth...
June 2016: Pediatric Cardiology
Karin Zimmermann, Eva Bergstraesser, Sandra Engberg, Anne-Sylvie Ramelet, Katrin Marfurt-Russenberger, Nicolas Von der Weid, Chantal Grandjean, Patricia Fahrni-Nater, Eva Cignacco
BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services...
2016: BMC Palliative Care
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