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Decision Making at the Border of Viability and in Critically...
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Decision Making at the Border of Viability and in Critically Ill Newborn Infants

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Pediatric Neonatology".

Deadline for manuscript submissions: closed (5 April 2024) | Viewed by 16091

Special Issue Editors

Prof. Dr. Harald Ehrhardt

E-Mail Website
Guest Editor
Department of Pediatrics & Adolescent Medicine, Divisional Head Neonatology & Pediatric Intensive Care Medicine, University Medical Center Ulm, Ulm University, Eythstraße 24, D-89075 Ulm, Germany
Interests: bronchopulmonary dysplasia; respiratory distress; non-invasive ventilation; lung development; lung injury; microbiome; neonatal infection; preterm follow-up; long-term outcome of preterm infants; parental psychosocial support
Dr. Silke Mader

E-Mail Website
Guest Editor
Founder and Chairwoman of the Board - European Foundation for the Care of Newborn Infants, Hofmannstr. 7A, 81379 Munich, Germany
Interests: family centered care; quality indicators, implementation processes; human milk banks; all topics and information related to improving maternal and newborn health - breastfeeding, ROP, RSV, etc.

Special Issue Information

Dear Colleagues,

The tremendous advances in neonatal medicine in recent years have made it possible for very immature preterm infants to survive. Newborn infants with complex and severe congenital disorders and malformations can be offered therapeutic interventions to prolong life and possibly even fully repair congenital defects. In the care of preterm and ill newborns, parents and the professional team have to consider neurodevelopmental outcome, disability-free survival, and quality of life in addition to survival alone when deciding on initiation, continuation, or discontinuation of active therapy. The right to live might come into conflict with the idea of perfect health in a situation where the patient´s presumed will cannot be determined. On the other hand, the right to die in a futile situation might come into conflict with parents’ or the professional team’s resistance to end therapy.

Professional teams together with parents are facing an increasing number of situations where the therapeutic options have to be considered in the light of all these challenges and in situations where it is difficult to give a definite prognosis for the individual child. The broad heterogeneity of guidelines toward initiation, continuation, and discontinuation of active therapy across Europe and the industrialized world reflects the differences in legal, ethical, cultural, religious, and personal convictions. During parental counselling, all these aspects need to be taken into account to meet the parental needs. The term “decision-making process” best reflects the thorough and repeated consideration of all aspects in order to come to a well-founded decision and treatment consensus of the specialized interdisciplinary hospital team and the child’s parents.

In this Special Issue, we aim to look at these difficult ethical questions from the perspective of Christian Catholic and Protestant churches, Judaism, and Islam, as well as from a legal perspective in the context of actual outcome data of these vulnerable patient populations. Palliative care as a treatment option will also be discussed, as well as the very important view of parents of preterm and critically ill newborn infants. While it will not be possible to fully answer all questions, we hope to help clinicians through this Special Issue to be able to better counsel parents and guide them through the “decision-making process”.

Prof. Dr. Harald Ehrhardt
Dr. Silke Mader
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • critically ill newborn
  • extremely preterm infant
  • decision making
  • ethical
  • legal
  • catholic
  • protestant
  • Islamic
  • Jewish
  • palliative care
  • border of viability

Published Papers (9 papers)

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Research

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9 pages, 1672 KiB  
Article
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
by Béatrice Boutillier, Nicholas D. Embleton, Sophie Bélanger, Alexie Bigras-Mercier, Audrey Larone Juneau, Keith J. Barrington and Annie Janvier
Children 2023, 10(8), 1407; https://0-doi-org.brum.beds.ac.uk/10.3390/children10081407 - 18 Aug 2023
Viewed by 1227
Abstract
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to [...] Read more.
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: “I feel a lot more confident in supporting parents in this situation”. In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre–post training. Audits revealed that 100% of cases were identified on the incubator and the baby’s/babies’ admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)
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18 pages, 485 KiB  
Article
“We Absolutely Had the Impression That It Was Our Decision”—A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making
by Maria Florentine Beyer, Katja Kuehlmeyer, Pezi Mang, Andreas W. Flemmer, Monika Führer, Georg Marckmann, Mirjam de Vos and Esther Sabine Schouten
Children 2023, 10(1), 46; https://0-doi-org.brum.beds.ac.uk/10.3390/children10010046 - 26 Dec 2022
Cited by 2 | Viewed by 1762
Abstract
Background: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit [...] Read more.
Background: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. Methods: We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. Results: The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. Discussion: Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. Conclusion: SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents’ individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)
9 pages, 227 KiB  
Article
Catholic Perspective on Decision-Making for Critically Ill Newborns and Infants
by Annie B. Friedrich and Jason T. Eberl
Children 2022, 9(2), 207; https://0-doi-org.brum.beds.ac.uk/10.3390/children9020207 - 06 Feb 2022
Viewed by 1408
Abstract
In this paper, we discuss the foundational values informing the Catholic perspective on decision-making for critically ill newborns and infants, particularly focusing on the prudent use of medical technologies. Although the Church has consistently affirmed the general good of advances in scientific research [...] Read more.
In this paper, we discuss the foundational values informing the Catholic perspective on decision-making for critically ill newborns and infants, particularly focusing on the prudent use of medical technologies. Although the Church has consistently affirmed the general good of advances in scientific research and medicine, the technocratic paradigm of medicine may, particularly in cases with severely ill infants, lead to decision-making conflicts and breakdowns in communication between parents and providers. By exploring two paradigm cases, we offer specific practices in which providers can engage to connect with parents and avoid common technologically mediated decision-making conflicts. By focusing on the inherent relationality of all human persons, regardless of debility, and the Christian hope in the life to come, we can make decisions in the midst of the technocratic paradigm without succumbing to it. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)

Review

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5 pages, 195 KiB  
Review
Extremely Preterm Babies—Legal Aspects and Palliative Care at the Border of Viability
by Reinhard Dettmeyer
Children 2022, 9(10), 1594; https://0-doi-org.brum.beds.ac.uk/10.3390/children9101594 - 21 Oct 2022
Viewed by 1167
Abstract
There are various legal considerations and rare decisions of courts in western countries concerning palliative care and the border of viability in cases of extremely preterm babies. Nevertheless, on the one hand, regulations and decisions of courts describe the conditions physicians have to [...] Read more.
There are various legal considerations and rare decisions of courts in western countries concerning palliative care and the border of viability in cases of extremely preterm babies. Nevertheless, on the one hand, regulations and decisions of courts describe the conditions physicians have to accept. On the other hand, courts are also able to accept that every case can be special, and needs a unique answer. Therefore, the framework can be described as well as the medical disciplines, which should be involved in a particular case. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)
10 pages, 224 KiB  
Review
Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life
by John Wyatt and Richard Hain
Children 2022, 9(3), 344; https://0-doi-org.brum.beds.ac.uk/10.3390/children9030344 - 02 Mar 2022
Cited by 2 | Viewed by 2581
Abstract
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are [...] Read more.
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)
9 pages, 252 KiB  
Review
Neonatal Outcome and Treatment Perspectives of Preterm Infants at the Border of Viability
by Rahel Schuler, Ivonne Bedei, Frank Oehmke, Klaus-Peter Zimmer and Harald Ehrhardt
Children 2022, 9(3), 313; https://0-doi-org.brum.beds.ac.uk/10.3390/children9030313 - 24 Feb 2022
Cited by 5 | Viewed by 2653
Abstract
Decision-making at the border of viability remains challenging for the expectant parents and the medical team. The preterm infant is dependent on others making the decision that will impact them for a lifetime in hopefully their best interest. Besides survival and survival without [...] Read more.
Decision-making at the border of viability remains challenging for the expectant parents and the medical team. The preterm infant is dependent on others making the decision that will impact them for a lifetime in hopefully their best interest. Besides survival and survival without neurodevelopmental impairment, other relevant outcome measures, such as the quality of life of former preterm infants and the impact on family life, need to be integrated into prenatal counselling. Recommendations and national guidelines continue to rely on arbitrarily set gestational age limits at which treatment is not recommended, can be considered and it is recommended. These guidelines neglect other individual prognostic outcome factors like antenatal steroids, birth weight and gender. Besides individual factors, centre-specific factors like perinatal treatment intensity and the attitude of healthcare professionals significantly determine the futures of these infants at the border of viability. A more comprehensive approach regarding treatment recommendations and relevant outcome measures is necessary. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)
8 pages, 233 KiB  
Review
New Challenges with Treatment Advances in Newborn Infants with Genetic Disorders and Severe Congenital Malformations
by Rahel Schuler, Ivonne Bedei, Frank Oehmke, Klaus-Peter Zimmer and Harald Ehrhardt
Children 2022, 9(2), 236; https://0-doi-org.brum.beds.ac.uk/10.3390/children9020236 - 10 Feb 2022
Viewed by 1662
Abstract
Advances in the prognosis of relevant syndromes and severe congenital malformations in infants during the last few decades have enabled the treatment and survival of an ever-increasing number of infants, whose prospects were previously judged futile by professional health care teams. This required [...] Read more.
Advances in the prognosis of relevant syndromes and severe congenital malformations in infants during the last few decades have enabled the treatment and survival of an ever-increasing number of infants, whose prospects were previously judged futile by professional health care teams. This required detailed counselling for families, which frequently started before birth when a diagnosis was made using genetic testing or ultrasound. Predictions of the estimated prognosis, and frequently the more-or-less broad range of prospects, needed to include the chances of survival and data on acute and long-term morbidities. However, in the interest of a having an informed basis for parental decision-making with a professional interdisciplinary team, this process needs to acknowledge the rights of the parents for a comprehensive presentation of the expected quality of life of their child, the potential consequences for family life, and the couple’s own relationship. Besides expert advice, professional psychological and familial support is needed as a basis for a well-founded decision regarding the best treatment options for the child. It needs to be acknowledged by the professional team that the parental estimate of a “good outcome” or quality of life does not necessarily reflect the attitudes and recommendations of the professional team. Building a mutually trusting relationship is essential to avoid decision conflicts. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)

Other

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8 pages, 694 KiB  
Brief Report
Hospital Factors Associated with the Survival of Infants Born at Periviable Gestation: The USA National Database
by Ibrahim Qattea, Amani Quatei, Mohsen A. A. Farghaly, Alshimaa Abdalla, Mohamed A. Mohamed and Hany Aly
Children 2024, 11(1), 133; https://0-doi-org.brum.beds.ac.uk/10.3390/children11010133 - 22 Jan 2024
Viewed by 666
Abstract
Background: Reports on the survival of infants born at periviable gestation (GA of ≤24 weeks and birth weight of <500 gm) vary significantly. We aimed to determine hospital factors associated with their survival and to assess the trend for the timing of postnatal [...] Read more.
Background: Reports on the survival of infants born at periviable gestation (GA of ≤24 weeks and birth weight of <500 gm) vary significantly. We aimed to determine hospital factors associated with their survival and to assess the trend for the timing of postnatal mortality in these periviable infants. Methods: We utilized the de-identified National Inpatient Sample (NIS) dataset of the Healthcare Cost and Utilization Project (HCUP) from the Agency for Healthcare Research and Quality (AHRQ). National data were analyzed for the years 2010–2018. Hospitals were categorized according to delivery volume, USA regions, and teaching status. Results: We identified 33,998,014 infants born during the study period; 76,231 infants were ≤24 weeks. Survival at birth and first 2 days of life was greatest in urban teaching hospitals in infants <24 weeks and those who completed 24 weeks, respectively. The Northeast region has the lowest survival rate. There was a significant delay in the postnatal day of mortality in periviable infants. Conclusions: Hospital factors are associated with increased survival rates. Improved survival in large teaching hospitals supports the need for the regionalization of care in infants born at the limits of viability. There was a significant delay in the postnatal mortality day. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)
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10 pages, 271 KiB  
Perspective
Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants
by Angret de Boer, Pauline E. van Beek, Peter Andriessen, Floris Groenendaal, Marije Hogeveen, Julia S. Meijer, Sylvia A. Obermann-Borst, Wes Onland, Liesbeth (H. C. J.) Scheepers, Marijn J. Vermeulen, E. J. T. (Joanne) Verweij, Lien De Proost and Rosa Geurtzen
Children 2023, 10(10), 1712; https://0-doi-org.brum.beds.ac.uk/10.3390/children10101712 - 21 Oct 2023
Viewed by 1375
Abstract
Predicting the short- and long-term outcomes of extremely preterm infants remains a challenge. Multivariable prognostic models might be valuable tools for clinicians, parents, and policymakers for providing accurate outcome estimates. In this perspective, we discuss the opportunities and challenges of using prognostic models [...] Read more.
Predicting the short- and long-term outcomes of extremely preterm infants remains a challenge. Multivariable prognostic models might be valuable tools for clinicians, parents, and policymakers for providing accurate outcome estimates. In this perspective, we discuss the opportunities and challenges of using prognostic models in extremely preterm infants at population and individual levels. At a population level, these models could support the development of guidelines for decisions about treatment limits and may support policy processes such as benchmarking and resource allocation. At an individual level, these models may enhance prenatal counselling conversations by considering multiple variables and improving transparency about expected outcomes. Furthermore, they may improve consistency in projections shared with parents. For the development of prognostic models, we discuss important considerations such as predictor and outcome measure selection, clinical impact assessment, and generalizability. Lastly, future recommendations for developing and using prognostic models are suggested. Importantly, the purpose of a prognostic model should be clearly defined, and integrating these models into prenatal counselling requires thoughtful consideration. Full article
(This article belongs to the Special Issue Decision Making at the Border of Viability and in Critically Ill Newborn Infants)
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