Ethics and palliative care in the perinatal world
Counseling; Ethics; Neonatal; Palliative Care; Perinatal Decision-making
The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute considerations for the woman as autonomous patient. From prenatal diagnostics, which may be quite extensive, to potential interventions prenatally, postnatal resuscitation, and neonatal management, the fetus and newborn may be anticipated to survive with or without special needs and technology, to have a questionable or guarded prognosis, or to live only minutes to hours. This review will address the ethical ramifications for prenatal diagnostics, parental values and goals clarification, birth plans, the fluidity of decision-making over time, and the potential role of prenatal and postnatal palliative care support.
Marty CM; Carter BS
Seminars in Fetal and Neonatal Medicine
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).
10.1016/j.siny.2017.09.001
Improving neonatal care with the help of veteran resource parents: An overview of current practices
Infant Newborn; Humans; Parents; Intensive Care Units Neonatal; Neonatology; Family-centered care; Neonatal intensive care unit; Patient-centered research; Peer-to-peer support; Resource parents; Intensive Care Neonatal/standards; Neonatology/standards; Quality of Health Care/standards
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administration and/or teaching, but those roles are rarely described in the literature. This article reviews many of the activities performed by resource parents in neonatology. These activities were identified/examined and classified according to the location of involvement (hospital or not), the presence/absence of direct interaction with families and providers, and the topic of involvement. We have also identified gaps in knowledge relative to recruitment and training, development and evaluation of programs, structuring of responsibilities, and remuneration of resource parents. Future research is needed to measure the impact of resource parents on neonatal care.
Bourque CJ; Dahan S; Mantha G; Robson K; Reichherzer M; Janvier A
Seminars in Fetal and Neonatal Medicine
2018
<a href="http://doi.org/10.1016/j.siny.2017.10.005" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2017.10.005</a>
Personalized support of parents of extremely preterm infants before, during and after birth
Communication; Family Integrated Care; Parent; Peer-peer support; Personalization; Prematurity
The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person’s characteristics, preferences, and values. Laurence did not expect this. He life used to be perfect: just married, new baby, happy family. Then it happened. Her membranes ruptured and here she was, being told she was in labor at 23 weeks. She was lost when she met the neonatologist; she felt that all she heard were the bad things that could happen to her baby including terrifying statistics about death and disability. This was horribly shocking, and nothing made sense in her mind. She kept thinking was “how did this happen?” Why did her body fail? It must have been her fault… she should have slept more and eaten better or maybe she was just too old… Or maybe it was the doctor’s fault for not listening to her when she had cramps 2 weeks earlier? Her husband kept telling her they would be OK, but she could not be positive. He was the optimistic one in the couple, he seemed to cope much better than her. He was in action mode, organizing child care for the other two children, but she felt paralyzed. This was not like her. What was going to happen to her, her marriage, her child, her dreams? How could she let all this happen? What could she had done to prevent this? In another part of the hospital, Clyde was born in the early morning hours. He had come into this world too early but somehow made it through the delivery despite Mel being told he might not. Mel didn’t really understand what had happened. They had given her some materials to read but the words were complicated to understand, the pictures were scary, and she could not concentrate. She was used to deal with difficulties, but not this one. She had been in foster homes since she was a child, then she lived on her own for a year. She turned 18 last week and has lived in a domestic violence shelter for the past 20 days. Clyde was attached to machines to help him breathe. He had wires all over his little body and alarms kept beeping while nurses did not seem to notice. Mel was afraid to get in the way of all the people at his bedside. She didn’t know what was happening and was embarrassed to ask. She felt like an intruder in her son’s room. When she had tried to touch Clyde, she was told: “He is sleeping, he needs to stay calm”. She was asked later if she wanted to hold him, but she was scared. What if she dropped him? What would she do, where would they go if he survived?
Haward MF; Luu TM; Pearce R; Janvier A
Seminars in Fetal and Neonatal Medicine
2022
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/10.1016/j.siny.2022.101335" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2022.101335</a>
Paediatric palliative care in the NICU: A new era of integration
neonatal intensive care unit; palliative therapy; child; female; human; human experiment; infant; male; newborn; Palliative Care; review; skill; social needs; standard; terminal care
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines. Palliative care is so much more than end-of-life care, offering a proactive and holistic approach which addresses the physical, emotional, spiritual and social needs of the infant and family. This is a truly interdisciplinary endeavour, relying on a harmonisation of the skills from both the neonatal and palliative care teams to deliver high-quality coordinated care.Copyright © 2023
Bertaud S; Montgomery AM; Craig F
Seminars in Fetal and Neonatal Medicine
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/10.1016/j.siny.2023.101436" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101436</a>
Maternal-fetal surgery as part of pediatric palliative care
fetus surgery; palliative therapy; child; congenital diaphragm hernia; consultation; counseling; female; fetus; human; infant; Palliative Care; review; risk assessment; surgeon
Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face a life with disability. Pediatric palliative care (PPC) is more than end of life or hospice care, it aims at helping patients with complex medical conditions live well. In this paper, we briefly discuss maternal-fetal surgery, challenges regarding counseling and benefit-risk evaluation, argue that PPC should be a routine part of prenatal consultation, discuss the pivotal role of the maternal-fetal surgeon in the PCC-team, and finally discuss some of the ethical considerations of maternal-fetal surgery. We illustrate this with a case example of an infant diagnosed with congenital diaphragmatic hernia (CDH).Copyright © 2023
De Bie FR; Tate T; Antiel RM
Seminars in Fetal and Neonatal Medicine
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/10.1016/j.siny.2023.101440" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101440</a>
Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
bioethics; conversation; decision making; ethics; neonatal intensive care unit; treatment withdrawal; active euthanasia; artificial ventilation; controlled study; critically ill patient; human; hydration; hypoxic ischemic encephalopathy; infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; neonatologist; newborn; nutrition; resuscitation; review
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than what to do. Although less obvious, they are equally as important, and may also have far-reaching ramifications. This essay presents the story of a newborn with profound hypoxic-ischemic encephalopathy, and reviews decisions regarding resuscitation, withdrawal of mechanical ventilation, withdrawal of medically administered nutrition and hydration, and active euthanasia. An overview of the ethical issues at work at each decision point is presented, as well as guidance regarding discussions with parents throughout the process, including specific wording. This may serve as a helpful guide for ethical deliberation, and helpful scripting for parental discussion, in similar cases.Copyright © 2023 Elsevier Ltd
Mercurio MR; Gillam L
Seminars in Fetal and Neonatal Medicine
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/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101438</a>
End of life care in the setting of extreme prematurity - practical challenges and ethical controversies
Palliative care; Terminal Care; Decision-making; End of life; Neonatal; Intensive care; Premature infant
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely preterm infants in the delivery room and in the neonatal intensive care unit. We identify potential justifications for differences in the end of life care in this population as well as practical and ethical challenges.
Wilkinson DJ; Bertaud S
Seminars in Fetal and Neonatal Medicine
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="https://www.sciencedirect.com/science/article/pii/S1744165X23000185?via%3Dihub">10.1016/j.siny.2023.101442</a>
Neonatal euthanasia in the context of palliative and EoL care
End-of-life care; Ethics; Palliative care; Infant Newborn; Decision-making; Nicu; Neonatal euthanasia
Neonatal deaths can be categorized in 5 modes along the dimension of intervention and physiology. This classification can be helpful to analyze the choices that can be made in end-of-life care in the NICU. In the Netherlands, neonatal euthanasia became an optional 6th mode of death since publication and legalization of the Groningen Protocol. This paper summarizes the history, legal status and ethical justification of the Groningen Protocol, and describes end-of-life practice in the subsequent years. Since the implementation of the Groningen Protocol, the practice of neonatal euthanasia has almost disappeared. Simultaneously, there has been spectacular growth in neonatal palliative care programs in the Netherlands. Is there still a need for this last-resort option?
Verhagen AAE
Seminars in Fetal and Neonatal Medicine
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="https://www.sciencedirect.com/science/article/pii/S1744165X2300015X?via%3Dihub">10.1016/j.siny.2023.101439</a>
Spiritual and cultural influences on end-of-life care and decision-making in NICU
Terminal Care; Decision Making; End-of-life; Rituals; Neonates; Cultures; Religions; Spiritual; Traditions
Understanding and respecting the spiritual beliefs, ethnic roots, cultural norms and customs of individual families is essential for neonatologists to provide clinically appropriate and humane end-of-life care. This review describes the religious/philosophical principles, cultural-related practices/rituals, and traditions in end-of-life care in major spiritual groups of today's multi-cultural, multi-faith societies. The spiritual groups include Christians, Muslims, Jewish Judaism believers and Asian religious/philosophy followers such as Buddhists, Hindus, Taoists, Confucianism devotees and ancestral worshippers. It is vital to understand that substantial variation in views and practices may exist even within the same religion and culture in different geographic locations. Ethical views and cultural practices are not static elements in life but behave in a fluidic and dynamic manner that could change with time. Interestingly, an evolving pattern has been observed in some Asian and Middle East countries that more parents and/or religious groups are beginning to accept a form of redirection of care most compatible with their spiritual belief and culture. Thus, every family must be assessed and counseled individually for end-of-life decision-making. Also, every effort should be made to comply with parents' requests and to treat infants/parents of different religions and cultures with utmost dignity so that they have no regret for their irreversible decisions.
Ng PC; Fung GPG
Seminars in Fetal and Neonatal Medicine
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="https://www.sciencedirect.com/science/article/pii/S1744165X23000136?via%3Dihub">10.1016/j.siny.2023.101437</a>
Palliative care for NICU survivors with chronic critical illness
Palliative Care; Critical Illness; Survivors
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic medical technologies, fractured post-NICU healthcare, gaps in home health services, and family strain-are common and predictable. This means that raising family and NICU team awareness of these issues, and putting plans in place to address them, should occur for every NICU infant with CCI. Pediatric palliative care is one resource that can be engaged within the NICU to support the child and family through NICU discharge and beyond. This review examines what is known about the unique needs of infants who leave the NICU with CCI and the role that NICU-initiated palliative care involvement can play for these patients, families, clinicians, and the health care system.
Boss RD
Seminars in Fetal and Neonatal Medicine
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="https://www.sciencedirect.com/science/article/pii/S1744165X23000227">10.1016/j.siny.2023.101446</a>