Decisions about life-sustaining measures in children: in whose best interests?
ABSTRACT As the community of physicians and nurses dedicated to the care of critically ill children has gained ever more well-developed skill sets, the decision to either continue or forego life-sustaining measures has become less time-sensitive. As a result, there is greater opportunity for careful consideration and discussion. The core principle in making decisions about whether to continue or forego life-sustaining measures is the best interests of the child. However, there are many clinical situations wherein factors other than the child's best interests may influence treatment decisions. The present report seeks to examine the notion that in the arena of paediatric critical care medicine, the decision-making process regarding life-sustaining measures may place insufficient priority upon the child's best interests. We examine actual, de-identified clinical situations, encountered in the critical care arena in two categories: (i) cases that challenge the imperative to act in the child's best interests, and (ii) cases that compromise the ability of parents and caregivers to use child-centred, best-interests approaches to decision-making. Clarity surrounding the implications of a clinical decision for the patient is essential. Decisions that are not focused squarely on the child's best interests may compromise the delivery of optimally ethical end-of-life care. CONCLUSION: The cases and analysis may benefit parents and caregivers as they struggle with the difficult ethical issues that accompany decisions to continue or forego life-sustaining measures in children.
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ABSTRACT: OBJECTIVES:To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious.METHODS:All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were abstracted from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009.RESULTS:Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%.CONCLUSIONS:Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.PEDIATRICS 05/2013; 131(6). DOI:10.1542/peds.2012-0981 · 5.30 Impact Factor
Article: The Need for Dialogical Encounter: An Account of Christian Parents’ Making Decisions on Behalf of Their Severely Handicapped Child T. Mark McConnell* and Ruth A. McConnell Christian Bioethics, Oct. 2014 http://cb.oxfordjournals.org/content/early/2014/10/19/cb.cbu025.abstract?keytype=ref&ijkey=LhfRsN6TJaP91Gs[Show abstract] [Hide abstract]
ABSTRACT: In this article, a Christian couple narrates their experience of the medical system during the pregnancy, birth, and death of their severely handicapped daughter, focusing on key ethical decisions relating to prenatal testing, DNR orders, and withdrawal of treatment. The nature of the modern pluralist, consumer–patient-oriented system is reflected on and a resulting sense of isolation described. Using the work of literary theorist Mikhail Bakhtin, a paradigm of “dialogical encounter” is proposed as a way of minimizing the isolation and stress due to life and death decision making. Some practical ways of implementing such a dialogical encounter are suggested. http://cb.oxfordjournals.org/content/early/2014/10/19/cb.cbu025.abstract?keytype=ref&ijkey=LhfRsN6TJaP91GsChristian Bioethics 10/2014; DOI:10.1093/cb/cbu025