During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot (...) express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported – terminating an already initiated treatment – we propose the concept of ‘evidence shift’ to clarify the ambiguous position of uncertainty in decision making. (shrink)

Policies and position statements regarding decision-making for extremely premature babies exist in many countries and are often directive, focusing on parental choice and expected outcomes. These recommendations often state survival and handicap as reasons for optional intervention. The fact that such outcome statistics would not justify such approaches in other populations suggests that some other powerful factors are at work. The value of neonatal intensive care has been scrutinized far more than intensive care for older patients and suggests that neonatal (...) care is held to a higher standard of justification. The relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives. Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? We explore this question from a legal and ethical perspective and offer several hypotheses pertaining to personhood, reproductive choices, “precious children,” and probable evolutionary and anthropological factors. (shrink)

Neonatal intensive care units represent simultaneously one of the great success stories of modern medicine, and one of its most controversial developments. One particularly controversial issue is the resuscitation of extremely preterm infants. Physicians in the United States generally accept that they are required to resuscitate infants born as early as 25 weeks and that it is permissible to resuscitate as early as 22 weeks. In this article, I question the moral pressure to resuscitate by criticizing the idea that resuscitation (...) in this context “saves” a human life. Our radical medical advancements have allowed us to intervene in the life of a human before it makes sense to say that such an intervention “saves” someone; rather, what the physician does in resuscitating and treating an extremely preterm infant is to take over creating it. This matters, I argue, because “rescues” are much more morally urgent than “creations.”. (shrink)

Background In the last years, there has been an increase in publication of systematic reviews of normative literature or of normative information in bioethics. The aim of a systematic review is to search, select, analyse and synthesise literature in a transparent and systematic way in order to provide a comprehensive and unbiased overview of the information sought, predominantly as a basis for informed decision-making in health care. Traditionally, one part of the procedure when conducting a systematic review is an appraisal (...) of the quality of the literature that could be included. Main text However, while there are established methods and standards for appraising e.g. clinical studies or other empirical research, quality appraisal of normative literature in the context of a systematic review is still rather a conundrum – not only is it unclear how it could or should be done, but also the question whether it necessarily must be done is not settled yet. Based on a pragmatic definition of “normative literature” as well as on a typology of different types of systematic reviews of normative literature/information, this paper identifies and critically discusses three possible strategies of conducting quality appraisal. Conclusions The paper will argue that none of the three strategies is able to provide a general and satisfying solution to the problems associated with quality appraisal of normative literature/information. Still, the discussion of the three strategies allows outlining minimal conditions that elaborated strategies have to meet in future, and facilitates sketching a theoretically and practically promising strategy. (shrink)

In the United Kingdom women have access to termination of pregnancy for maternal reasons until 24 weeks’ completed gestation, but it is accepted practice for children born at or beyond 25 weeks’ gestation to be treated according to the child’s perceived best interests even if this is not in accordance with parental wishes. The authors present a case drawn from clinical practice which highlights the discomfort that parents may feel about such an abrupt change in their rights over their child, (...) and argue that parents should have greater autonomy over treatment decisions regarding their prematurely born children. (shrink)

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness (...) and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (shrink)

Prolonging neonatal lifeThe paradox that medicine’s success breeds medicine’s problems is well known to readers of the Journal of Medical Ethics. Advances in neonatal medicine have worked wonders. Not long ago, extremely premature birth babies, or those born with very serious health problems, would inevitably have died. Today, neonatologists can resuscitate babies born at ever-earlier stages of gestation. And very ill babies also benefit from advances in neonatal intensive care. Infant lives can be prolonged. Unfortunately, several such babies will not (...) survive for long whatever is done for them. Others will live to leave hospital, but face severe health problems. Doctors have gained the ability to prolong neonatal life. But should they always do so? This question is central to the recent report of the Nuffield Council on Bioethics, Critical care decisions in fetal and neonatal medicine.1 In many quarters, the report received a very positive response, commended in The Lancet as “thoughtful, sensitive and sensible” and welcomed by the premature baby charity BLISS. Critics attacked on both flanks. The report goes too far—ushering in a culture of “throw away babies”. Or it does not go far enough—failing to endorse the Dutch precedent to sanction active neonatal euthanasia.TOO FAR?One of the key recommendations of the report is that guidelines be developed in relation to the institution of intensive neonatal care. It is these guidelines, which have been savaged by some parts of the media. The BMA called them “blanket rules” smothering clinical discretion. The guidelines on resuscitation at birth apply to babies born at the borderline of viability, that is, at or before a gestational age of 25 weeks 6 days. The earlier the baby is born, the lower are the chances that he/she will survive to leave hospital. Before 21 weeks 6 days, none of …. (shrink)

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These (...) policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial. (shrink)

The clinical ethics literature is striking for the absence of an important genre of scholarship that is common to the literature of clinical medicine: systematic reviews. As a consequence, the field of clinical ethics lacks the internal, corrective effect of review articles that are designed to reduce potential bias. This article inaugurates a new section of the annual "Clinical Ethics" issue of the Journal of Medicine and Philosophy on systematic reviews. Using recently articulated standards for argument-based normative ethics, we provide (...) a systematic review of the literature on concealed medication for the management of psychiatric disorders. Four steps are completed: identify a focused question; conduct a literature search using key terms relevant to the focused question; assess the adequacy of the argument-based methods of the papers identified; and identify conclusions drawn in each paper and whether they apply to the focused question. We identified seven papers and provide an assessment of them. While none of the papers fully meet the standards of argument-based ethics, they did provide rationales for the use of concealed medications, with the important requirement such a practice be accountable in explicit organizational policy to prevent abuse of patients with mental illness or dementia. (shrink)

Background: There are no universally agreed rules of healthcare ethics. Ethical decisions and standards tend to be linked to professional codes of practice when dealing with complex issues. Objectives: This paper aims to explore the ethical complexities on who should decide to give infants born on the borderline of viability lifesaving treatment, parents or the healthcare professionals. Method: The paper is a discussion using the principles of ethics, professional codes of practice from the UK, Nursing Midwifery Council and UK legal (...) case law and statute. Healthcare professionals' experiences that influence parental decision are also considered. Findings & Discussion: There are considerable barriers to an effective discussion taking place in an environment where clinical decisions have to be made quickly once the baby is born. This is compounded by the need and respect for parental autonomy and the difficulties they face when making a best interest's decision knowing that this could cause more harm than good for their infant child and balancing any decision they make with quality of life. Conclusion: On deciding whether to give lifesaving treatment born at the borderline of viability, it should be a joint decision between the parents and the neonatal team. (shrink)

During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot (...) express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported – terminating an already initiated treatment – we propose the concept of ‘evidence shift’ to clarify the ambiguous position of uncertainty in decision making. (shrink)