The provision of care to the newborn or young infant at the end of life is primarily motivated by concern and compassion. When examining the evidence base for most interventions, it is lacking - but this is not unique to this aspect of neonatal care. Nevertheless, a redirection of care from cure-oriented and life-extending measures to comfort and limitations of life-sustaining technologic interventions requires the neonatologist to apply practical knowledge skillfully and with prudence. Clinicians can acknowledge that patient needs require managing their end-of-life symptoms now; neither these patients nor their families should have to wait for research to catch up to their current needs.
[Show abstract][Hide abstract] ABSTRACT: Objective:
To describe the neonatal outcomes of a case series of infants who were prenatally diagnosed with potential life-limiting conditions and to whom individualized comfort measures were offered.
This is a retrospective analysis of the postnatal outcomes of a selected population of 49 infants prenatally diagnosed with potential life-limiting conditions whose parents were prenatally referred for counseling to the comfort care team.
The prenatal diagnosis was confirmed postnatally in 45 infants. The only four survivors had a significant discrepancy between prenatal and postnatal diagnosis. Whether they were treated with individualized comfort measures (n=28) or intensive care (n=17), all the newborns died with similar median age at death (2 days).
Diagnostic accuracy is the main determinant of outcomes. Provision of intensive care neither prevents the death of infants affected by life-limiting conditions nor prolongs life compared with that of infants treated with individualized comfort measures.
Journal of perinatology: official journal of the California Perinatal Association 03/2014; 34(6). DOI:10.1038/jp.2014.40 · 2.07 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Advances in medicine can reduce active euthanasia of newborns with severe anomalies or unusual prematurity, but they cannot eliminate it. In the Netherlands, voluntary active euthanasia among adults and adolescents has been allowed since 2002, when the so-called Groningen Protocol (GP) was formulated as an extension of the law on extremely premature and severely ill newborns. It is maintained that, at bioethical level, it serves the principle of beneficence. Other European countries do not accept the GP, including Belgium. Admissibility of active euthanasia is a necessary, though inadequate, condition for acceptance of the GP. Greece generally prohibits euthanasia, although the legal doctrine considers some of the forms of euthanasia permissible, but not active or involuntary euthanasia. The wide acceptance of passive newborns euthanasia, especially when the gestational age of the newborns is 22-25 weeks ("grey zone"), admissibility of practices within the limits between active and passive euthanasia (e.g., withholding/withdrawing), of "indirect active euthanasia" and abortion of the late fetus, the tendency to accept after-birth-abortion (infanticide) in the bioethical theory, the lower threshold for application of withdrawing in neonatal intensive care units compared with pediatric intensive care units, all the above advocate wider acceptance of the GP. However, the GP paves the way for a wide application of involuntary (or pseudo-voluntary) euthanasia (slippery slope) and contains some ambiguous concepts and requirements (e.g., "unbearable suffering"). It is suggested that the approach to the sensitive and controversial ethical dilemmas concerning the severely ill newborns is done not through the GP, but rather, through a combination of virtue bioethics (especially in the countries of the so-called "Mediterranean bioethical zone") and of the principles of principlism which is enriched, however, with the "principle of mutuality" (enhancement of all values and principles, especially with the principles of "beneficence" and "justice"), in order to achieve the "maximal" bioethical approach, along with the establishment of circumstances and alternatives that minimize or eliminate the relevant bioethical dilemmas and conflicts between the fundamental principles. Thus, the most appropriate/fairest choices are made (by trained parents and physicians), considering all interests involved as much as possible. Hippokratia 2014; 18 (3): 196-203.
[Show abstract][Hide abstract] ABSTRACT: A paucity of research has evaluated the perspectives of the broader healthcare team regarding perinatal palliative care. This study examines the views of healthcare providers involved in perinatal palliative care in 3 tertiary care hospitals in Canada. Developing an understanding of their perspectives of care provision, as well as the interactions that took place with families and other teams while providing perinatal palliative care, was of interest. Twenty-nine healthcare providers were involved in 4 focus groups and 5 individual interviews. Data were transcribed and content analysis was undertaken. The overarching theme of communication materialized from the data. Within this theme were 3 subthemes, each highlighting an aspect of communication that impacted care provision: connecting through proximity, protected time and dedicated space, and flexibility and formality. The study also describes a model of integrated perinatal palliative care program development and explains where each of the 3 sites falls along this continuum. The development of formal programs in these facilities is varied and recommendations are included to enhance communication and assist in providing improved and integrated programming.
The Journal of perinatal & neonatal nursing 07/2014; 28(4). DOI:10.1097/JPN.0000000000000020 · 1.10 Impact Factor
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