End-of-life Decision Making For Parents Of Extremely Preterm Infants
End-of-life; Extremely Preterm Infants; Parental Involvement; Qualitative Research; Shared Decision Making
OBJECTIVE: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks). DESIGN: Hermeneutically oriented qualitative research design with in-depth interviews. SETTING: Level III NICU in Switzerland. PARTICIPANTS: Purposive sample of seven couples, five mothers, and one father (20 parents). METHODS: Qualitative content analysis was used to categorize and interpret themes from parents' narratives. RESULTS: Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical model, few parents recalled being involved in the decision-making process. Some parents experienced a dissociative state of mind that hindered their involvement, whereas others felt actively involved. CONCLUSIONS: Our results suggest the need for careful and continuous professional evaluation of parents' wishes about involvement in the decision-making process, along with descriptions of medical facts and treatment options. A lack of attentive listening and dialogue may cause paternalistic decision trajectories.
Hendriks M J; Abraham A
Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
2017
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).
DOI: 10.1016/j.jogn.2017.06.006
Ethical Dilemmas in Neonatal Care at the Limit of Viability
end-of-life decisions; extremely preterm infants; Infant Newborn; limit of viability; shared decision-making
Advances in neonatal care have pushed the limit of viability to incrementally lower gestations over the last decades. However, surviving extremely premature neonates are prone to long-term neurodevelopmental handicaps. This makes ethics a crucial dimension of periviable birth management. At 22 weeks, survival ranges from 1 to 15%, and profound disabilities in survivors are common. Consequently, there is no beneficence-based obligation to offer any aggressive perinatal management. At 23 weeks, survival ranges from 8 to 54%, and survival without severe handicap ranges from 7 to 23%. If fetal indication for cesarean delivery appears, the procedure may be offered when neonatal resuscitation is planned. At a gestational age ≥24 weeks, up to 51% neonates are expected to survive the neonatal period. Survival without profound neurologic disability ranges from 12 to 38%. Beneficence-based obligation to intervene is reasonable at these gestations. Nevertheless, autonomy of parents should also be respected, and parental consent should be sought prior to any intervention. Optimal counselling of parents involves harmonized cooperation of obstetric and neonatal care providers. Every fetus/neonate and every pregnant woman are different and have the right to be considered individually when treatment decisions are being made.
Kornhauser CL; Lucovnik M
Children
2023
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://doi.org/10.3390/children10050784" target="_blank" rel="noreferrer noopener">10.3390/children10050784</a>
Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Parents; Neurodevelopmental Outcomes; Child; Composite End-points; Birth; Down-syndrome; Obstetrics & Gynecology; Extremely Preterm Infants; Of-life Decisions; Pediatrics; Gestational Age
Extreme Prematurity; Congenital Anomalies; Neonatal Intensive Care Unit; Life-sustaining Interventions; End-of-life Decision Making; Disability; Screening; Palliative Care; Family-centered Care; Communication; Empathy
Abstract
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understand the effects of neonatal conditions and/or interventions on organs and/or long-term health, and finally (6) to better prepare parents for the future. However, the outcomes evaluated have been selected by investigators, based on feasibility, availability, cost, stability, and on what investigators consider to be important. Many of the routinely measured outcomes have major limitations: they may not correlate well with long-term difficulties, they may artificially divide continuous outcomes into dichotomous ones, and may have no clear relationship with quality of life and functioning of children and their families. Several investigations, such as routine term cerebral resonance imaging for preterm infants, have also not yet been shown to improve the outcome of children nor their families. In this article, the most common variables used in neonatology as well as some variables which are rarely measured but may be of equal importance for families are presented. The manner in which these outcomes are communicated to families will be examined, as well as recommendations to optimize communication with parents.
Abbreviations
BPD, bronchopulmonary dysplasia; BSID, Bayley Scales of Infant Development; GA, gestational age; NDI, neurodevelopmental impairment; NICU, neonatal intensive care unit; ROP, retinopathy of prematurity
Keywords
Extreme prematurity; Congenital anomalies; Neonatal intensive care unit; Life-sustaining interventions; End-of-life decisions; Disability; Screening; Palliative care; Family-centered care; Communication; Empathy
Annie Janviera; Barbara Farlow; Jason Baardsnesf; Rebecca Pearceg; Keith J Barringtona
Seminars In Perinatology
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).
http://dx.doi.org/10.1053/j.semperi.2016.09.009