Fragile lives with fragile rights: Justice for babies born at the limit of viability (original) (raw)
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The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making
Frontiers in Pediatrics, 2020
Care of the preterm infant has improved tremendously over the last 60 years, with attendant improvement in outcomes. For the extremely preterm infant, <28 weeks' gestation, concerns related to survival as well as neurodevelopmental impairment, have influenced decision-making to a much larger extent than seen in older children. Possible reasons for conferring a different status on extremely preterm infants include: (1) the belief that the brain is a privileged organ, (2) the degree of medical uncertainty in terms of outcomes, (3) the fact that the family will deal with the psychological, emotional, physical, and financial consequences of treatment decisions, (4) that the extremely preterm looks more like a fetus than a term newborn, (5) the initial lack of relational identity, (6) the fact that extremely preterm infants are technology-dependent, and (7) the timing of decision-making around delivery. Treating extremely preterm infants differently does not hold up to scrutiny. They are owed the same respect as other pediatric patients, in terms of personhood, and we have the same duties to care for them. However, the degree of medical uncertainty and the fact that parents will deal with the consequences of decision-making, highlights the importance of providing a wide band of discretion in parental decision-making authority. Ethical principles considered in decision-making include best interest (historically the sine qua non of pediatric decision-making), a reasonable person standard, the "good enough" parent, and the harm principle, the latter two being more pragmatic. To operationalize these principles, potential models for decision-making are the Zone of Parental Discretion, the Not Unreasonable Standard, and a Shared Decision-Making model. In the final analysis shared decision-making with a wide zone of parental discretion, which is based on the harm principle, would provide fair and equitable decision-making for the extremely preterm infant. However, in the rare circumstance where parents do not wish to embark upon intensive care, against medical recommendations, it would be most helpful to develop local guidelines both for support of health care practitioners and to provide consistency of care for extremely preterm infants.
Ethical aspects of the extreme premature newborn
2005
As neonatology continues to advance medical knowledge and situations surrounding the care of ill and premature newborns, each step introduces ill-defined methodologies, unknown outcomes, and increasing costs. In countries such as Mexico, the government hospitals assume the cost of such treatments. It is, therefore, incumbent on the entire society, rather than simply the medical community, to enter into the debate about which of these tiny patients should be treated, how aggressive such treatment should be, and what outcomes are acceptable.We suggest an appropriate strategy for countries like Mexico, with an intermediate policy between treating all the very low birth weight babies (VLBW) and offering strict limits, where all the parts are involved in the decision making process.
Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient's life expectancy with treatment. It may affect whether treatment is in a patient's best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. Wilkinson D, Savulescu J. Disability, discrimination and death. Monash Bioethics Review 2014; 32(1-2): 43-62 doi: 10.1007/s40592-014-0002-y
Pediatric Reports
Ethical debates about the life-prolonging treatment of extremely premature infants and infants with congenital abnormalities with poor prognoses have long been held. We will examine approaches in Norway and Japan as examples because Norway is a well-known welfare state. By comparing the traditional Norwegian approach, the newly proposed approach of postponed withholding (PPWH) and the Japanese approach, we will revisit shared decision making in neonatology in general, where patients (i.e., newborns) inevitably have no decision-making capacity. We argue that in shared decision making, the process is critical, and that it is important to clarify who will be the final decision-maker and whose benefits are most important. In addition, we argue that the issue of cost cannot be avoided in this current time of economic disparities in global health. Shared decision making should not be a mere formality. These are significant examples of new ethical debates to be discussed in the modern era ...
Cutting the cord: Can society over-invest in extremely premature and critically impaired infants?
This article provides a critical examination of the allocation of scarce public health care funds in relation to extremely premature and sick neonates. Decisions to withdraw or withhold life-sustaining treatment from neonates born extremely premature are generally informed by arbitrary and often subjective considerations of those involved in their care – namely parents and medical practitioners. This article argues for a sharp and immediate focus in decisions to treat such neonates based on the allocation of limited health care resources. Accordingly, decisions to save and preserve the lives of imperilled neonates should not be limited to the immediate financial costs of medical treatment. More explicitly there should be a full appreciation of the cost of disability to the family, requirements for long-term care, and the benefits and associated costs of life, not only to the patient, but also to society: Journal of Law and Medicine, 2015, 23 (4)
Physicians can justifiable euthanize certain severely disabled neonates
Clinicians in a scenario involving a neonate with heterotaxy syndrome would not have included euthanasia as an option for the parents had they believed surgical procedures would likely be successful and permit the infant to live a reasonably healthy life. Legislators in the jurisdiction where the case scenario played out concluded that there are circumstances where infanticide is morally acceptable. They legislated that physician-assisted death be made available in their jurisdiction for certain severely impaired neonates, including apparently the infant under consideration. A majority of practicing neonatologists in Europe concurs that intensive care is only acceptable if it will result not merely in the survival of an infant but also in an acceptable future quality of life.1 In the United States the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research also concluded that there can be conditions sufficiently serious ‘‘that continued existence would not be a net benefit to the infant.’’2 There appear to be some cases, then, where continuing existence is not in a severely impaired neonate’s best interest. Terminating its life, based on parent choice, seems a prima facie reasonable option.
BMC pediatrics, 2018
In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between...