End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium
Brussels Capital Region; prematurity; Wallonia; article; clinical practice; female; gestational age; human; infant; major clinical study; male; neonatologist; neonatology; newborn; palliative therapy; perinatal period; qualitative research; questionnaire; terminal care; uncertainty
Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.Copyright © 2018 The Author(s).
Aujoulat I; Henrard S; Charon A; Johansson AB; Langhendries JP; Mostaert A; Vermeylen D; Verellen G; Maton P; Van Overmeire B; Kalenga M; Broux I; Henrion E; Dussart A; Muller MF; Cavatorta E; Marechal Y; Vanden ES; Lecart C; Haumont D; Van Herreweghe I; Vlieghe V; Debauche C; Flausch M; Sepulchre B
BMC Pediatrics
2018
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/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1168-x</a>
Possibilities and challenges of perinatal hospice-palliative care. [Hungarian]
hospice palliative care; neonatology; perinatal loss; perinatal period
Perinatal hospice care is a special form of paediatric palliative care, with a focus on prenatally diagnosed malformation, providing physical, psychological and mental support with a holistic approach for the families. Our aim was to analyse how perinatal hospice-palliative care can be implemented and what opportunities it may provide on the basis of available professional guidelines. We introduce study and analysis of the professional guidelines and protocols, mainly from Anglo-Saxon countries, and describe some examples of best practices. Perinatal hospice is a specially demanding care regarding professional and personal challenges. Standardised guidelines based on consensus can serve as starting points, describing proper care and its conditions. Moreover, they can facilitate communication and coordinative processes between the collaborating specialists. Challenging conditions and possible solutions to them can be identified during supportive formative courses. Continuous formation means competency development in palliative care as well as in adequate communication. Copyright © 2020 Akademiai Kiado Rt.. All rights reserved.
Eva Z; Katalin H
Orvosi Hetilap
2020
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/10.1556/650.2020.31636" target="_blank" rel="noreferrer noopener">10.1556/650.2020.31636</a>
Accessibility and challenges of perinatal palliative care in Poland
Palliative Care; female; human; palliative therapy; review; Poland; health care access; psychologist; law; primary medical care; perinatal period; prenatal diagnosis; pregnant woman; perinatal care; budget; fetus malformation/di [Diagnosis]; midwife; obstetric procedure
Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s): The desk research was based on information obtained from the National Health Fund regarding the number of units that signed a contract for the provision of guaranteed PPC services from 2018 to the first half (January-June) of 2022; the number of parents receiving the service from 2018 to 2022; and the number of services provided by a doctor, a psychologist and by primary care midwives (PCMs). In addition, the Map of Health Needs and National Transformation Plan data were used to prepare the data. Result(s): In Poland, since 2018, PPC services have been provided with public funds under contracts signed with the National Health Fund. Since 2022, these type of services has been provided by 17 centres. Care was provided to 1,860 pregnant women diagnosed with lethal foetal anomaly and to four fathers. There are still voivodeships in which there is a lack of provision of PPC services that are financed from the state budget. Conclusion(s): In Poland, there is no full accessibility to publicly funded PPC in every voivodeship. The lack of a sufficient number of PPC centres and the lack of a uniform national standard of practice for this type of care - provided in hospices, hospitals and home settings - prevents women from having continuity of professional perinatal care. There is a need to ensure the quality of the services provided and make progress towards the employment of midwives in PPC facilities by service providers to ensure that women receive obstetric care from the moment of an adverse diagnosis, professional preparation for childbirth and the postnatal period.Copyright © 2023 Via Medica.
Tataj-Puzyna U; Szlendak B; Kaptacz I; Sys D; Wegrzynowska M; Baranowska B
Palliative Medicine in Practice
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/10.5603/PMPI.a2023.0015" target="_blank" rel="noreferrer noopener">10.5603/PMPI.a2023.0015</a>