Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18
Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Using mixed methods, we asked parents about their prenatal experience, their hopes, the life of their affected child, and their family experience. 332 parents answered questions about 272 children; 128 experienced PND. These parents, despite feeling pressure to terminate (61%) and being told that their baby would likely die before birth (94%), chose to continue the pregnancy. Their reasons included: moral beliefs (68%), child-centered reasons (64%), religious beliefs (48%), parent-centered reasons (28%), and practical reasons (6%). At the time of the diagnosis, most of these parents (80%) hoped to meet their child alive. By the time of birth, 25% chose a plan of full interventions. A choice of interventions at birth was associated with fewer major anomalies (P < 0.05). Parents describe "Special" healthcare providers as those who gave balanced and personalized information, respected their choice, and provided support. Parents make decisions to continue a pregnancy and choose a plan of care for their child according to their beliefs and their child's specific medical condition, respectively. Insights from parents' perspective can better enable healthcare providers to counsel and support families. © 2013 Wiley Periodicals, Inc.
2013-12
Guon J; Wilfond BS; Farlow B; Brazg T; Janvier A
American Journal Of Medical Genetics.Part A
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/ajmg.a.36298" target="_blank" rel="noreferrer">10.1002/ajmg.a.36298</a>
Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
Emotions; Communication; Neonatology; empathy; cardiopulmonary resuscitation; gestational age; NICU; bronchopulmonary dysplasia; CPR; end of life decisions; Extreme prematurity; extremely low-gestational-age infants; Family Centered Care; Life-sustaining interventions; necrotizing enterocolitis; Personalized medicine; Withhold and withdraw intensive care
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.
2014-02
Janvier A; Barrington K; Farlow B
Seminars In Perinatology
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1053/j.semperi.2013.07.007" target="_blank" rel="noreferrer">10.1053/j.semperi.2013.07.007</a>
End-of-life Decisions for Fragile Neonates: Navigating between Opinion and Evidence-based Medicine
Ethics; Mortality; Neonatology; Palliative Care; Patient Perspective
The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs). Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous investigations shed some light on this topic. Durrmeyer et al systematically described the management of 73 delivery room deaths in the EPIPAGE-2 cohort. The vast majority of neonates had LSI withheld, at a median gestational age of 24 weeks. Pain was usually assessed: 50% of infants received comfort medication, the administration of which was not associated with the evaluation of pain but rather with the presence of gasping. Satisfaction of healthcare providers was strongly associated with the occurrence of parent-child contact, which frequently occurred. Aladangady et al describe the short-term outcome of LSI-limitation discussions with parents in a prospective multicentre trial in the UK (the WILST study). Half of the parents did not agree with providers and opted to continue LSI. When this occurred, it was not rare for the neonates to survive. When parents and providers agreed that LSI should be limited, neonates rarely survived.
Janvier A; Farlow B; Verhagen E; Barrington K
Archives of Disease in Childhood
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://dx.doi.org/10.1136/archdischild-2016-311123">10.1136/archdischild-2016-311123</a>