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"Perinatal palliative care"

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...
April 6, 2017: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
Laura Hostalery, Barthélémy Tosello
PURPOSE: To describe a population choosing to continue their pregnancy despite a severe fetal abnormality and to evaluate the role of antenatal neonatology consultation in perinatal decision-making. METHODS: A 10-year (2005-2015) retrospective descriptive study in a single Multidisciplinary Prenatal Diagnosis Center in South France. A series of pregnancies with severe fetal abnormalities were collected by a person outside the decision making process and/or the child's care...
March 23, 2017: Fetal and Pediatric Pathology
Susan L Hasegawa, Jessica T Fry
Perinatal palliative care programs seek to support parents expecting a baby diagnosed with a serious medical condition. Clinicians have increasingly recognized the importance of parental perspectives on the medical care mothers and their fetuses and live-born children receive, especially regarding factors influencing individual choices and knowledge of the medical community. We describe, using literature on trisomy 13 and trisomy 18, how information shared between parents and providers can improve perinatal counseling and family support...
February 23, 2017: Seminars in Perinatology
Peter Sidgwick, Emily Harrop, Brenda Kelly, Ana Todorovic, Dominic Wilkinson
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplinary support for families. In this paper we define and describe one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors.
November 14, 2016: Archives of Disease in Childhood. Education and Practice Edition
Sarah Meaney, Paul Corcoran, Keelin O'Donoghue
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy. OBJECTIVES: To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy...
March 2017: Journal of Palliative Medicine
Brian S Carter
No abstract text is available yet for this article.
November 2016: Acta Paediatrica
Charlotte Wool, Beth Perry Black, Anne B Nancy Woods
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed...
October 2016: ANS. Advances in Nursing Science
Erin Denney-Koelsch, Beth Perry Black, Denise Côté-Arsenault, Charlotte Wool, Sujeong Kim, Karen Kavanaugh
BACKGROUND: Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development. OBJECTIVE: To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes. DESIGN: Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP)...
October 2016: Journal of Palliative Medicine
Rana Limbo, Charlotte Wool
No abstract text is available yet for this article.
September 2016: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
B Tosello
Severe congenital or morphologic anomalies are one of the main causes of infant morbidity and mortality. Some of these prenatally-diagnosed pathologies are incompatible with postnatal survival. In this context, some women choose to continue with pregnancy. Subsequently, perinatal palliative care seems to be a constructive answer to offer in such situations. At international level, this is a new clinical practice where decision dilemmas exist (prognostic uncertainty, prolonged survival, and attachment to the infant)...
September 2016: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
Barthélémy Tosello, Grace Haddad, Catherine Gire, Marie-Ange Einaudi
OBJECTIVE: Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case. METHODS: We sent by emails a questionnaire to 434 maternal-fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis...
March 2017: Journal of Maternal-fetal & Neonatal Medicine
Denise Côté-Arsenault, Erin Denney-Koelsch
SIGNIFICANCE: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. METHODS: This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis...
April 2016: Social Science & Medicine
Charlotte Wool, Denise Côté-Arsenault, Beth Perry Black, Erin Denney-Koelsch, Sujeong Kim, Karen Kavanaugh
BACKGROUND: Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis. OBJECTIVE: To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs...
March 2016: Journal of Palliative Medicine
C Kenner, J Press, D Ryan
Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care...
December 2015: Journal of Perinatology: Official Journal of the California Perinatal Association
Sandra J Mixer, Lisa Lindley, Heather Wallace, Mary Lou Fornehed, Charlotte Wool
BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study addresses. OBJECTIVE: To evaluate the relationship between the nurse work environment and the delivery of culturally sensitive perinatal hospice care. METHOD: This retrospective, correlational study used data from the National Home and Hospice Care Survey, which includes a nationally representative sample of hospice care providers...
September 2015: International Journal of Palliative Nursing
Alli Ryan, Heather Bernhard, Beth Fahlberg
No abstract text is available yet for this article.
October 2015: Nursing
Charlotte Wool
BACKGROUND: Despite a life-limiting fetal diagnosis, prenatal attachment often occurs in varying degrees resulting in role identification by an individual as a parent. Parents recognize quality care and report their satisfaction when interfacing with health care providers. OBJECTIVE: The aim was to test an instrument measuring parental satisfaction and quality indicators with parents electing to continue a pregnancy after learning of a life-limiting fetal diagnosis...
October 2015: Journal of Palliative Medicine
Melanie Chichester, Charlotte Wool
Feeding an infant is a bonding experience for parents, particularly for women from cultures in which breastfeeding is the norm. When an infant is unexpectedly ill, or his or her life is expected to be brief, challenges surrounding infant feeding can occur. Regardless of ethnicity or culture, parents facing the death of their infant have difficult decisions to make and need time to process those decisions. Given the social, cultural and spiritual nature of food and water, withdrawing or withholding nutrition and/or hydration for infants can be one of the most difficult decisions for parents...
June 2015: Nursing for Women's Health
Barthélémy Tosello, Lionel Dany, Pierre Bétrémieux, Pierre Le Coz, Pascal Auquier, Catherine Gire, Marie-Ange Einaudi
BACKGROUND: When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropriate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality...
2015: PloS One
Ciara Chamberlain, Sharron Spicer, Kathryn daSilva Curiel
No abstract text is available yet for this article.
April 2015: Paediatrics & Child Health
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