Editors' Note: This White Paper is being advance-released to coincide with the publication of the Nuffield Council's report, "Critical Care Decisions in Fetal and Neonatal Medicine." The White Paper will appear in the December issue of The Scientist.
***Ethical controversy about the appropriate care of severely ill newborns is far from new. In recent years very different approaches have been taken to decisions about critical care. In a number of issues related to neonatal medicine, an analysis of ethical concepts and arguments is important. These include: the value of human life; the role of best interests; the deliberate ending of life; and the withholding and withdrawing of treatment. In 2004, the Nuffield Council on Bioethics convened a Working Party to discuss these issues. Although the members held a range of differing views on questions concerning the nature and sanctity of human life, they were unanimous on the...
- The moment of birth, which is easy to identify and usually represents a significant threshold in potential viability, is the significant point of transition not just for legal judgments about preserving life but also for moral ones. The newborn baby has no lesser moral status than any older child or adult can enjoy.
- For some babies, whose quality of life is what we have described as 'intolerable', an insistence on imposing burdensome and invasive life-sustaining treatments, regardless of suffering, is inhumane and of no possible benefit to them.
- Although many people, including clinicians, perceive a moral difference between withholding and withdrawing treatment, the Working Party concluded that there are no good reasons to draw a moral distinction between them, provided these actions are motivated in each case by an assessment of the best interests of the baby.
- The Working Party unreservedly rejected the active ending of neonatal life, for example by lethal injection, even when that life is intolerable.
- The views of the parents of a baby must be accorded proper weight, not because parents in any sense own a child but because of the bond formed with a baby even before birth, and because the care parents can provide for their child makes a substantial difference to the life that child can enjoy.
- The Working Party took the view that, provided treatments using sedatives and analgesics are guided by the best interests of the baby, and have been agreed upon by means of a joint decision-making process, potentially life-shortening but pain-relieving treatments are morally acceptable.
- The Working Party offered some criteria to clarify how the best interests of a baby might be judged. When a critical-care decision must be made, a number of questions should be considered, including: For how much longer is it likely that the baby will survive if treatment is continued? What degree of suffering will such treatment inflict on the child? What benefits will the child gain from the treatment in the future?
- Finally, the Working Party considered that all participants in decision-making should strive to reach agreement about what is best.
- At 25 weeks of gestation and above: The relatively high rate of survival and the relatively low risk of severe disability are such that intensive care should be initiated and the baby admitted to a neonatal intensive care unit, unless the baby has a severe abnormality incompatible with any significant period of survival.
- Between 24 weeks 0 days, and 24 weeks 6 days: Normal practice should be that a baby will be offered full invasive intensive care and support from birth and admitted to a neonatal intensive care unit, unless the parents and the clinicians agree that in view of the baby's condition, it would not be in the baby's best interests to start intensive care.
- Between 23 weeks 0 days and 23 weeks 6 days: It is very difficult to predict the future outcome for an individual baby. Precedence should be given to the wishes of the parents regarding resuscitation and treatment of their baby with invasive intensive care. However, where the condition of the baby indicates that he or she will not survive for long, clinicians should not be obliged to proceed with treatment wholly contrary to their clinical judgment, if they judge that treatment would be futile.
- Between 22 weeks 0 days and 22 weeks 6 days: Standard practice should be not to resuscitate the baby. However, if parents request resuscitation and reiterate this request after thorough discussion with an experienced pediatrician about the risks and long-term outcomes, resuscitation should be attempted and intensive care offered.
- Before 22 weeks: At this stage, the Working Party regarded any intervention as experimental. Attempts to resuscitate should take place only within a clinical research study that has been assessed and approved by a research ethics committee and with informed parental consent.
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