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. (shrink)

This paper presents ethical dilemmas concerning the termination of pregnancy, the management of childbirth, and the withdrawal of life-support from infants in special care, for a small sample of British Pakistani Muslim parents of babies diagnosed with fatal abnormalities. Case studies illustrating these dilemmas are taken from a qualitative study of 66 families of Pakistani origin referred to a genetics clinic in Southern England. The paper shows how parents negotiated between the authoritative knowledge of their doctors, religious experts, and (...) senior family members in response to the ethical dilemmas they faced. There was little knowledge or open discussion of the view that Islam permits the termination of pregnancy for serious or fatal abnormality within 120 days and there was considerable disquiet over the idea of ending a pregnancy. For some parents, whether their newborn baby would draw breath was a main worry, with implications for the baby's Muslim identity and for the recognition of loss the parents would receive from family and community. This concern sometimes conflicted with doctors' concerns to minimize risk to future pregnancies by not performing a Caesarean delivery if a baby is sure to die. The paper also identifies parents' concerns and feelings of wrong-doing regarding the withdrawal of artificial life-support from infants with multiple abnormalities. The conclusion considers some of the implications of these observations for the counselling and support of Muslim parents following the pre- or neo-natal diagnosis of fatal abnormalities in their children. (shrink)

A significant portion of newborns cared for in the neonatal intensive care unit or other ICUs, such as the cardiac ICU, have a medical condition with a genetic component, including congenital malformations, the leading cause of death in the NICU. In many cases, however, it is not clear which condition the child has or what can be done to help him or her. Genomic sequencing of sick newborns has the potential to bypass the prolonged journey to a diagnosis, improving the (...) medical care of individual infants. Sequencing also has the potential to benefit others beyond the child whose genome is sequenced and his or her immediate family. Sequence data from sick newborns will expand medicine's understanding of genetic diseases, leading to improvements in clinicians’ ability to counsel family and to provide even more targeted care. Not only will more frequent use of sequencing lead to discovery of new genes; it will also provide unique insights into the full spectrum of known Mendelian genetic diseases, so‐called phenotypic expansion, when a gene previously recognized as associated with a phenotype is found to be associated with an expanded set of clinical features. Genetic and environmental changes that modify the expression of a genetic disease may also be elucidated. (shrink)

There is a broadly held view that neonatologists are ethically obligated to act to override parental nontreatment decisions for imperiled premature newborns when there is a reasonable chance of a good outcome. It is argued here that three types of uncertainty undercut any such general obligation: (1) the vagueness of the boundary at which an infant’s deficits become so intolerable that death could be reasonably preferred; (2) the uncertainty about whether aggressive treatment will result in the survival of a reasonably (...) healthy child or, alternatively, the survival of a child with intolerable deficits; and (3) the inability to determine an acceptable ratio between the likelihoods of those two outcomes. It is argued that the broadly held view accords insufficient weight to the fact that newborn intensive care increases the likelihood of harm to the child by effecting survival with intolerable deficits. Though treatment may offer a reasonable chance of a good outcome, it is argued that there are situations in which neonatologists should nonetheless defer to parental nontreatment decisions. (shrink)

Newborn screening has evolved to include an increasingly complex spectrum of diseases, raising concerns that screening should be optional and require parental consent. Early detection of disorders like PKU and MCAD is essential to prevent serious disability and death in affected children. These are examples of high benefit-risk ratio disorders because of the irrefutable health benefits of early detection, coupled with the low risks of treatment. The dire consequences of not diagnosing an infant with a treatable disorder because of (...) parental refusal to screen are wholly unacceptable. Thus, we believe that newborn screening for disorders with high benefit-risk ratios should continue to be mandatory. (shrink)

It has recently been suggested that doctors have a duty to act in their patient's best interest and that this duty demands that life-sustaining treatment—including food and fluids—should sometimes be withheld or withdrawn and the patient allowed to die. In this article, the author explores the scope of the ‘best interests principle’ in the context of treatment decisions for seriously handicapped newborn infants. She argues that those who hold that it is permissible to starve or dehydrate an infant (...) to death are mistaken to think that this course of action is in the infant's best interests. While it may be true that there are times whendeath is, everything considered, in an infant's best interests, a slow and distressingmethod of bringing death about is not. Since death by dehydration and starvation is not benign, the withholding of food and fluids is generally not in an infant's best interests. The author concludes by suggesting thatwhenever the withdrawal or non-employment of life-sustaining means imposes a heavy burden on the infant, the ‘best interests principle’ would demand that the infant be killed rather than allowed to die. (shrink)

This study investigates the possible effects of pre-term births and low birth weight on infant mortality rates (IMRs) over a 15-year period in Ribeirão Preto, Brazil, based on surveys carried out in 1978/79 and 1994. The 1978/79 survey included 6750 births over a 12-month period and the 1994 survey 2846 births over a 4-month period. Infant deaths were retrieved monthly from the city register. Infant mortality rate decreased from 36·6 to 16·9 deaths per 1000 over 15 years. The decrease in (...) IMR was larger in the 25000·63); it increased to 0·57 (95% CI 0·350·97) when adjusted for length of gestation and other variables. The increase in pre-term births and low birth weight may have had, at most, a marginal effect on the IMR. Progress in the care of newborns may have decreased the mortality risk, but even mild pre-term birth still has an impact on infant mortality. There is room for further improvement in IMR by tackling the high rates of pre-term birth. (shrink)

Birth asphyxia is the most common single cause of death in term newborn infants. The majority of deaths in developed countries follow decisions to withdraw intensive care. Recent technological advances, particularly the use of magnetic resonance imaging (MRI) of the brain, may affect the process of prognostication and decision-making. There is little existing evidence about how prognosis is determined in newborn infants and how this relates to treatment withdrawal decisions.An exploratory qualitative study was performed using in-depth (...) semi-structured interviews with a sample of ten neonatologists from tertiary intensive care units in the UK. Participants were purposively selected to ensure a range of experience and type of unit. They were asked about the process of prognostication for infants with birth asphyxia and decisions about treatment withdrawal. Interviews were transcribed and thematically analysed.MRI played a significant role in decision-making about life-sustaining treatment for a number of clinicians. Clinicians did not identify particular ethical concerns related to MRI, though wider discussion revealed issues relating to uncertainty around predictions, the timing of prognostication and decision-making, and difficulty in predicting quality of life. (shrink)

Introduction In 2007, a national review committee was instituted in The Netherlands to review cases of active ending of life for newborns. It was expected that 15–20 cases would be reported. To date, however, only one case has been reported to this committee. Reporting is essential to obtain societal control and transparency; the possible explanations for this lack of reporting were therefore explored. Methods Data on end-of-life decision-making were scrutinised from Dutch nation-wide studies (1995, 2001 and 2005), before institution of (...) the committee. Physicians received a questionnaire about their medical decision-making for stratified samples of deceased infants up to 1 year, drawn from the central death registry. Results In 2005, 58% of all deaths were preceded by an end-of-life decision, compared with 68% in 2001 and 62% in 1995. The use of drugs with a possible life-shortening effect tended to be lower. In 2005, all four cases in the study in which an infants' life was actively ended were preceded by a decision to forego life-prolonging treatment. In three cases, the infant's life expectancy was short; one case involved a longer life expectancy. Discussion The expected number of cases is probably an overestimation due to changes in medical practice such as the tendency to attribute less life-shortening effects to opioids. The lack of reports is probably also associated with requirements in the regulation; it may be difficult to fulfil them due either to time constraints or the nature of the suffering that is addressed. If societal control of active ending of life is considered useful, changes in the regulation may be needed. (shrink)

In the twenty-first century, decisions to withhold or withdraw life-supporting measures commonly precede death in the neonatal intensive care unit without major ethical controversy. However, caregivers often feel much greater turmoil with regard to stopping medical hydration and nutrition than they do when considering discontinuation of mechanical ventilation or circulatory support. Nevertheless, forgoing medical fluids and food represents a morally acceptable option as part of a carefully developed palliative care plan considering the infant’s prognosis and the burdens of continued treatment. (...) Decisions to stop any form of life support should focus on the clinical circumstances, not the means used to sustain life. (shrink)

ABSTRACTThis article reports the first results of a survey, by mail questionnaire, of the attitudes and practices of paediatricians with respect to the nontreatment of newborn infants with severe defects. Questionnaires were sent to 500 paediatricians in senior positions throughout the United Kingdom. 263 questionnaires, were completed and returned. The survey was an attempt to identify areas of consensus amongst paediatric specialists, and to discover some of the factors which influence their practice. A preliminary analysis of the data (...) has revealed variations in attitudes and practices in some areas, and a broad consensus in others. The following report is not an endorsement of any particular point of view. (shrink)

ABSTRACT This article reports the first results of a survey, by mail questionnaire, of the attitudes and practices of paediatricians with respect to the nontreatment of newborn infants with severe defects. Questionnaires were sent to 500 paediatricians in senior positions throughout the United Kingdom. 263 questionnaires, (52.6%) were completed and returned. The survey was an attempt to identify areas of consensus amongst paediatric specialists, and to discover some of the factors which influence their practice. A preliminary analysis of (...) the data has revealed variations in attitudes and practices in some areas, and a broad consensus in others. The following report is not an endorsement of any particular point of view. (shrink)

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because (...) of inadequate resources has seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the ‘social quality of life (sQOL)’ model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal ‘quality of life’ and Camosy's ‘sQOL’ should factor into these decisions, and I outline two practical proposals. (shrink)

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a (...) do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of ‘DNR’ to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed. (shrink)

In this article I criticize the recommendations of some prominent statisticians about how to estimate and compare probabilities of the repeated sudden infant death and repeated murder. The issue has drawn considerable public attention in connection with several recent court cases in the UK. I try to show that when the three components of the Bayesian inference are carefully analyzed in this context, the advice of the statisticians turns out to be problematic in each of the steps.

The sudden infant death syndrome (SIDS) is the sudden, unexpected death of an infant that is not explained by autopsy, death scene examination, and history. The etiology is unknown. Recent postmortem studies have discovered abnormalities in brainstem serotonergic neurons, but how these translate into dysfunction and cause SIDS is uncertain. Recently, lethal effects in transgenic mice with overexpression of the serotonin 1A autoreceptor have been described. Many die spontaneously between postnatal day 40 (P40) and P80, and some spontaneously exhibit bradycardias (...) and drops in body temperature. The severity of the autonomic dysfunction and its age dependence suggest relevance to SIDS. However, SIDS cases have decreased serotonin 1A autoreceptor binding, which is opposite to its overexpression in the mice, and the peak incidence of SIDS is between 2 and 6 months of age, which is arguably younger (in relative terms) than the ages at which the mice die. Nevertheless, the description of an animal model with serotonin defects that has autonomic dysfunction and spontaneous mortality at a young age is an exciting finding of possible importance for understanding SIDS. (shrink)

If a disabled newborn infant dies, her parents may be able to conceive another child without impairment. This is sometimes referred to as 'replacement'. Some philosophers have argued that replacement provides a strong reason for disabled newborns to be killed or allowed to die. In this paper I focus on the case for replacement as it relates to decisions about life support in newborn intensive care. I argue (following Jeff McMahan) that the impersonal reason to replace is weak (...) and easily outweighed. I assess and reject several possible ways in which the impersonal reason to replace could be defended. I then address an alternative justification for replacement - as an individual-affecting benefit. The strongest justification for replacement may be the interests of parents. In the latter part of the paper I look at a related question. What role should replacement play in decisions about the funding of newborn intensive care? (shrink)

This paper and its subsequent parts (Part II and Part III) build on an earlier publication (McKenna 1986). They suggest that important clinical data on the relationship between infantile constitutional deficits and microenvironmental factors relevant to SIDS can be acquired by examining the physiological regulatory effects (well documented among nonhuman primates) that parents assert on their infants when they sleep together.I attempt to show why access to parental sensory cues (movement, touch, smell, sound) that induce arousals in infants (...) while they sleep could possibly help one of many different subclasses of infants either to override certain kinds of sleep-induced breathing control errors suspected to be involved in SIDS or to avoid them altogether. I do not suggest that solitary nocturnal sleep “causes” SIDS, that all parents should sleep with their infants, or that traditional SIDS research strategies should be abandoned. However, using evolutionary data, I do suggest that an adaptive fit exists between parent-infant sleep contact and the natural physiological vulnerabilities of the neurologically immature human infant, whose breathing system is more complex than that of other mammals owing to its speech-breathing abilities. This “fit” is best understood, it is argued, in terms of the 4–5 million years of human evolution in which parent-infant contact was almost certainly continuous during at least the first year of an infant’s life. Thus, to dismiss the idea that solitary sleep has no physiological consequences for infants does not accord with scientific facts. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of (...) well-being. I present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

ABSTRACT The assumptions underlying the traditional biomedical model of health and illness and criticisms of it are described. An examination of the historical development of ideas concerning cot (crib) deaths shows how early explanations, which were congruent with this model, came to be discredited. Because subsequent explanations have also been considered unsatisfactory, cot deaths have come to be regarded as medically problematic. The relationship of models of health and illness to cot deaths has therefore been exposed to an unusual degree (...) of scrutiny. Two possible contending models, social epidemiological and socio‐economic are identified, and their status vis‐à‐vis the biomedical model is considered. The choice as to which of these models is applied to cot deaths is shown to be not only of theoretical interest but also to have ethical implications for health care policy and medical practice. (shrink)

Conscious experiences in infants remain poorly understood. In this NeuroView, Passos-Ferreira discusses recent evidence for and against consciousness in newborn babies. She argues that the weight of evidence from neuroimaging and behavioral studies supports the thesis that newborn infants are conscious.

A comprehensive study of the ethics of killing in cases in which the metaphysical or moral status of the individual killed is uncertain or controversial. Among those beings whose status is questionable or marginal in this way are human embryos and fetuses, newborn infants, animals, anencephalic infants, human beings with severe congenital and cognitive impairments, and human beings who have become severely demented or irreversibly comatose. In an effort to understand the moral status of these beings, this (...) book develops and defends distinctive accounts of the nature of personal identity, the evaluation of death, and the wrongness of killing. The central metaphysical claim of the book is that we are neither nonmaterial souls nor human organisms but are instead embodied minds. In ethical theory, one of the central claims is that the morality of killing is not unitary; rather, the principles that determine the morality of killing in marginal cases are different from those that govern the killing of persons who are self‐conscious and rational. Another important theme is that killing in marginal cases should be evaluated in terms of the impact it would have on the victim at the time rather than on the value of the victim's life as a whole. What primarily matters is how killing would affect that which would be rational for the victim to care about at the time of death. By appealing to various foundational claims about identity, death, and the morality of killing, this book yields novel conclusions about such issues as abortion, prenatal injury, infanticide, the killing of animals, the significance of brain death, the termination of life support in cases of persistent vegetative state, the use of anencephalic infants as sources of organs for transplantation, euthanasia, assisted suicide, and advance directives in cases of dementia. In particular, the book defends the moral permissibility of abortion, infanticide, and euthanasia in certain cases and argues that brain death is not the appropriate criterion of death either for a person or a human organism. (shrink)

In many forms of severe acute brain injury there is an early phase when prognosis is uncertain, followed later by physiological recovery and the possibility of more certain predictions of future impairment. There may be a window of opportunity for withdrawal of life support early, but if decisions are delayed there is the risk that the patient will survive with severe impairment. In this paper I focus on the example of neonatal encephalopathy and the question of the timing of prognostic (...) tests and decisions to continue or to withdraw life-sustaining treatment. Should testing be performed early or later; and how should parents decide what to do given the conflicting values at stake? I apply decision theory to the problem, using sensitivity analysis to assess how different features of the tests or different values would affect a decision to perform early or late prognostic testing. I draw some general conclusions from this model for decisions about the timing of testing in neonatal encephalopathy. Finally I consider possible solutions to the problem posed by the window of opportunity. Decision theory highlights the costs of uncertainty. This may prompt further research into improving prognostic tests. But it may also prompt us to reconsider our current attitudes towards the palliative care of newborn infants predicted to be severely impaired. (shrink)

Postnatal parent-infant physiological regulatory effects described in the previous paper (Part I) are viewed here as being biologically contiguous with events that occur prenatally, preparing and sensitizing the fetus to the average microenvironment into which the infant is expected, based on its evolutionary past, to be born. Following McKenna (1986), evidence (some of which is circumstantial) is presented concerning fetal hearing and fetal amniotic liquid breathing as they are affected both by maternal cardiovascular blood flow sounds in the uterus and (...) by fluctuating maternal blood sugar levels. These data are linked in turn to the infant’s postulated postnatal responsivity to parental sensory cues, including auditory and vestibular respiratory cues that may assist infants as they “learn” to breathe and, for some, to resist a SIDS event. Data on the respiratory and vocalizing behavior of normal and hearing-impaired persons are used to show that not all forms of human breathing are innate; some forms develop with experience. These data reveal how human infants learn, for example, to coordinate higher and lower brain respiratory nuclei in the context of learning initially to cry with intent and purpose and later to speak. Voluntary, cortex-based breathing emerges at the same time that infants are most likely to die from SIDS, between 2 and 4 months of age. This switch between voluntary and involuntary breathing during both sleep (while dreaming) and wake cycles, which depends on the integration of higher cortical and lower brain stem nuclei, is complex and is possibly the basis of the human species’ unique susceptibility to SIDS—a syndrome as yet unrecognized in other species. These human infant vulnerabilities, including delayed maturity, can explain in part why natural selection ought to favor increased infant sensitivity to parental sensory cues provided by a caregiver—stimuli available in the evolving parental care environment that included parent-infant co-sleeping for more than 4–5 million years of human evolution. (shrink)

This article is about the recognition of personhood when death occurs in early life. Drawing from anthropological perspectives on personhood at the beginnings and ends of life, it examines the implications of competing religious and customary definitions of personhood for a small sample of young British Pakistani Muslim women who experienced miscarriage and stillbirth. It suggests that these women's concerns about the lack of recognition given to the personhood of their fetus or baby constitute a challenge to customary practices surrounding (...) burial as a Muslim. The article suggests that these women's concerns cannot be adequately glossed as a clash of Islamic belief versus Western medicine. Rather, they represent a renegotiation of Islamic opinion and customary practices within the broader context of changes in the medical and social norms surrounding pregnancy loss and infant death in multi-ethnic British society. (shrink)

Life-sustaining treatment is sometimes withdrawn or withheld from critically ill newborn infants with poor prognosis. Guidelines relating to such decisions place emphasis on the best interests of the infant. However, in practice, parental views and parental interests are often taken into consideration.In this paper I draw on the example of newborn infants with severe muscle weakness (for example spinal muscular atrophy). I provide two arguments that parental interests should be given some weight in decisions about treatment, (...) and that they should be given somewhat more weight in decisions about newborns than for older children. Firstly, the interests of the infant and of parents intersect, and are hard to separate. Parents’ views about treatment may be relevant to an assessment of the infant’s interests, and they may also affect those interests. Secondly, the interests of the infant in her future are relatively reduced by her developmental immaturity. In some situations parents’ welfare interests outweigh those of the infant. However, I argue that this would not justify treatment limitation except in the setting of severe impairment. (shrink)

This paper and its subsequent parts (Part II and Part III) build on an earlier publication (McKenna 1986). They suggest that important clinical data on the relationship between infantile constitutional deficits and microenvironmental factors relevant to SIDS can be acquired by examining the physiological regulatory effects (well documented among nonhuman primates) that parents assert on their infants when they sleep together. I attempt to show why access to parental sensory cues (movement, touch, smell, sound) that induce arousals in (...) class='Hi'>infants while they sleep could possibly help one of many different subclasses of infants either to override certain kinds of sleep-induced breathing control errors suspected to be involved in SIDS or to avoid them altogether. I do not suggest that solitary nocturnal sleep “causes” SIDS, that all parents should sleep with their infants, or that traditional SIDS research strategies should be abandoned. However, using evolutionary data, I do suggest that an adaptive fit exists between parent-infant sleep contact and the natural physiological vulnerabilities of the neurologically immature human infant, whose breathing system is more complex than that of other mammals owing to its speech-breathing abilities. This “fit” is best understood, it is argued, in terms of the 4–5 million years of human evolution in which parent-infant contact was almost certainly continuous during at least the first year of an infant’s life. Thus, to dismiss the idea that solitary sleep has no physiological consequences for infants does not accord with scientific facts. (shrink)

This paper and its subsequent parts (Part II and Part III) build on an earlier publication (McKenna 1986). They suggest that important clinical data on the relationship between infantile constitutional deficits and microenvironmental factors relevant to SIDS can be acquired by examining the physiological regulatory effects (well documented among nonhuman primates) that parents assert on their infants when they sleep together. I attempt to show why access to parental sensory cues (movement, touch, smell, sound) that induce arousals in (...) class='Hi'>infants while they sleep could possibly help one of many different subclasses of infants either to override certain kinds of sleep-induced breathing control errors suspected to be involved in SIDS or to avoid them altogether. I do not suggest that solitary nocturnal sleep “causes” SIDS, that all parents should sleep with their infants, or that traditional SIDS research strategies should be abandoned. However, using evolutionary data, I do suggest that an adaptive fit exists between parent-infant sleep contact and the natural physiological vulnerabilities of the neurologically immature human infant, whose breathing system is more complex than that of other mammals owing to its speech-breathing abilities. This “fit” is best understood, it is argued, in terms of the 4–5 million years of human evolution in which parent-infant contact was almost certainly continuous during at least the first year of an infant’s life. Thus, to dismiss the idea that solitary sleep has no physiological consequences for infants does not accord with scientific facts. (shrink)

The reconstruction of meaning in the aftermath of sudden infant death syndrome (SIDS) is part of the grieving process but has to date been poorly understood. Earlier theorists including Freud, Bowlby and Kübler‐Ross provided a foundation for what occurs during this time using stage theories. More recent researchers, often using qualitative techniques, have provided a more complex and expanded view that enhances our knowledge of meaning reconstruction following infant loss. This overview of representative contemporary authors compares and contrasts them with (...) the longstanding models that are being supplanted within the emerging field of thanatology. Understanding parental reactions within this new framework can help healthcare professionals in dealing with those affected by SIDS and provide a more empathic and sensitive approach to individual differences. Parents’ own accounts of their post‐SIDS experience are consistent with these newer theories. Comprehending how parents cope and reconstruct their lives is an important element in providing appropriate psychological support services. (shrink)

Expert analysis is indispensable, especially in medical decision making, because it helps both physicians and patients in making rational decisions. In fact, medical expertise is the very reason pe...

Objective: To develop an approach for seeking informed consent to examine tissues retained from a previous study of sudden infant death syndrome as part of a study on asthma, and to document responses and participation rate.Design: Pilot open-ended approach to 10 volunteer SIDS parents, followed by staged approach to seek consent from the target SIDS families for the asthma study.Participants: Parents of SIDS infants known to SIDS and Kids Victoria and parents of SIDS infants from the 1991–2 SIDS (...) in Victoria case–control study.Main outcomes: Qualitative responses of the piloted parents and study parents, and participation rates.Results: The pilot group responses were used to refine the written material to be provided. Of the 72 families for which contact details were available, 45 gave verbal consent for contact by the Victorian Institute of Forensic Medicine regarding the asthma study, three refused and 24 did not respond to two letters. Thirty-three completed consent forms, all positive for participation in the asthma study, giving a positive response rate of 73% .Conclusions: The use of postmortem tissue for research is acceptable to the next of kin when an approach is sensitive to their concerns and needs and is made by experienced counsellors from a familiar organisation. Despite the painful memories evoked by the approach of the research group, the acceptance rate among those who could be contacted was high. (shrink)

Huang and colleagues provide some intriguing insights into the attitudes about end of life care of practising Taiwanese neonatal doctors and nurses.1 There are some similarities with surveys from other parts of the world. Most Taiwanese neonatologists and nurses agreed that it was potentially appropriate to withhold or limit treatment for infants who were dying. A very high proportion was opposed to active euthanasia of such infants. But there were also some striking differences. Only 21% of Taiwanese doctors (...) ‘agreed’ with withdrawal of mechanical ventilation for dying newborn infants. This proportion is lower than reported in any European country.2 More than 90% of neonatologists surveyed in the UK, the USA, The Netherlands and Sweden found withdrawal of mechanical ventilation acceptable.2 ,3 Taiwanese doctors also seemed reluctant to give analgesia or sedatives to such infants, with almost 60% disagreeing with their use in dying infants where there was a risk of hastening death.1 In contrast, two-thirds or more of European neonatologists thought this was acceptable .2The results of the survey of Huang et al highlight three beliefs about end-of-life care that are widespread, but all of which are seriously mistaken1. None are new, but …. (shrink)

After World War II, infant mortality rates started dropping steeply. We show how this was accomplished in socialist countries in East-Central Europe. Focusing on the two postwar decades, we explore comparatively how medical experts in Poland, Hungary, Czechoslovakia, and East Germany saved fragile newborns. Based on an analysis of medical journals, we argue that the Soviet Union and its medical practices had only a marginal influence; the four countries followed the recommendations of the World Health Organization instead, despite not being (...) members. Importantly, we analyze the expert clashes over definitions of livebirth, which impact infant mortality statistics. We analyze the divergent practices and negotiations between countries: since the infant mortality rate came to represent the level of socioeconomic advancement, its political significance was paramount. Analyzing the struggle to reduce infant mortality thus helps us understand how socialist countries positioned themselves within the transnational framework while being members of the “socialist bloc.”. (shrink)