Neonatal suffering has been the focus of recent debate in pediatric bioethics and suffering theory. How to access and conceptualize the suffering that can be attributed to newborns? How to discern the suffering of newborns who, due to being non-neurotypical, may have a short life and severe neurocognitive disabilities, in addition to being entirely dependent on people or life-sustaining technologies? Phenomenology has provided valuable tools for analysing human experiences of suffering, but its application to (...) the neonatal suffering experience is not without fundamental challenges. In this article, I will consider recent contributions to elucidating the phenomenon of neonatal suffering, especially those in the field of non-experiential theories of suffering. Based on this review, a recent phenomenological approach to suffering will be examined. Explicitly directed toward narrative persons, this approach appears to be inherently limited in elucidating the phenomenon of neonatal pediatric suffering. Nevertheless, a suggestion will be offered to partially elaborate the theoretical foundations of a phenomenological theory of neonatal suffering. This suggestion points to the program of a phenomenology of the existential feelings of newborns. (shrink)

The growing support for voluntary active euthanasia is evident in the recently approved Dutch Law on Termination of Life on Request. Indeed, the debate over legalized VAE has increased in European countries, the United States, and many other nations over the last several years. The proponents of VAE argue that when a patient judges that the burdens of living outweigh the benefits, euthanasia can be justified. If some adults suffer to such an extent that VAE is justified, then one may (...) conclude that some children suffer to this extent as well. In an attempt to alleviate the suffering of extremely ill neonates, the University Medical Center Groningen developed a protocol for neonatal euthanasia. In this article, I first present the ethical justifications for VAE and discuss how these arguments relate to euthanizing ill neonates. I then argue that, even if one accepts the justification for VAE in adults, neonatal euthanasia cannot be supported, primarily because physicians and parents can never accurately assess the suffering of children. I argue that without the testament of the patient herself as to the nature and magnitude of her suffering, physicians can never accurately weigh the benefits and burdens of a child’s life, and therefore any such system would condemn to death some children whose suffering is not unbearable. I conclude that because the primary duty of physicians is to never harm their patients, neonatal euthanasia cannot be supported. (shrink)

My aim is to suggest that there is a case for using a randomised consent design in some neonatal trials. As an example I use the trials of extracorporeal membrane oxygenation (ECMO) in neonates suffering pulmonary hypertension. In some trials the process of obtaining consent has the potential to harm the subject, for example, by disappointing those who end in the control group and by creating additional anxiety at times of acute illness. An example of such were the (...) trials of extracorporeal membrane oxygenation (ECMO) in neonates suffering pulmonary hypertension. Pre-randomised consent could avoid or lessen these harms. However, a number of ethical objections are made to these research designs. They involve denial of information, using people, denial of choice, and "overselling" of allocated treatment. Furthermore, they are the wrong response; better communication might be the answer, for example. I argue that these objections are not completely persuasive. However, they are enough to suggest caution in the use of such designs. (shrink)

The Dutch rules governing neonatal euthanasia, known as the Groningen Protocol, require parental consent for severely disabled infants with poor prognoses to have their lives terminated. This paper questions whether parental consent should be dispositive in such cases, and argues that the potential suffering of the neonate or pediatric patient should be the decisive factor under such unfortunate circumstances.

Representatives from eight European countries compared the legal, ethical and professional settings within which decision making for neonates takes place. When it comes to limiting treatment there is general agreement across all countries that overly aggressive treatment is to be discouraged. Nevertheless, strong emphasis has been placed on the need for compassionate care even where cure is not possible. Where a child will die irrespective of medical intervention, there is widespread acceptance of the practice of limiting aggressive treatment or alleviating (...) suffering even if death may be hastened as a result. Where the infant could be saved but the future outlook is bleak there is more debate, but only two countries have tested the courts with such cases. When it comes to the active intentional ending of life, the legal position is standard across Europe; it is prohibited. However, recognising those intractable situations where death may be lingering and unpleasant, Dutch paediatricians have reported that they do sometimes assist babies to die with parental consent. Two cases have been tried through the courts and recent official recommendations have set out standards by which such actions may be assessed. (shrink)

The American Academy of Pediatrics recently released a policy statement and technical report on circumcision, in both of which the organisation suggests that the health benefits conferred by the surgical removal of the foreskin in infancy definitively outweigh the risks and complications associated with the procedure. While these new documents do not positively recommend neonatal circumcision, they do paradoxically conclude that its purported benefits ‘justify access to this procedure for families who choose it,’ claiming that whenever and for whatever (...) reason it is performed, it should be covered by government health insurance. The policy statement and technical report suffer from several troubling deficiencies, ultimately undermining their credibility. These deficiencies include the exclusion of important topics and discussions, an incomplete and apparently partisan excursion through the medical literature, improper analysis of the available information, poorly documented and often inaccurate presentation of relevant findings, and conclusions that are not supported by the evidence given. (shrink)

A literature review of 98 articles concerning clinical pain research in newborn infants was conducted to evaluate how researchers report the ethical issues related to their studies and how journals guide this reporting. The articles were published in 49 different scientific journals. The ethical issues most often mentioned were parental informed consent (94%) and ethical review approval (87%). In 75% of the studies the infants suffered pain during the research when placebo, no treatment or otherwise inadequate pain management was applied. (...) Discussion about benefits versus harm to research participants was lacking. A quarter of the journals did not have any ethical guidelines for submitted manuscripts. We conclude that ethical considerations did not play a significant role in the articles studied. Missing and superficial guidelines enable authors to offer studies with fragile research ethics. (shrink)

Background: Limited knowledge of the experiences of conflicts of conscience found in nursing literature. Objectives: To explore the individual experiences of a conflict of conscience for neonatal nurses in Alberta. Research design: Interpretive description was selected to help situate the findings in a meaningful clinical context. Participants and research context: Five interviews with neonatal nurses working in Neonatal Intensive Care Units throughout Alberta. Ethical consideration: Ethics approval from the Health Research Ethics Board at the University of Alberta. (...) Findings: Three common themes emerged from the interviews: the unforgettable conflict with pain and suffering, finding the nurse’s voice, and the unique proximity of nurses. Discussion and conclusion: The nurses described a conflict of conscience when the neonate in their care experienced undermanaged pain and unnecessary suffering. During these experiences, they felt guilty, sad, hopeless, and powerless when they were unable to follow their conscience. Informal ways to follow their conscience were employed before declaration of conscientious objection was considered. This study highlights the vital importance of respecting a conflict of conscience to maintain the moral integrity of neonatal nurses and exposes the complexities of conscientious objection. (shrink)

The concept of suffering is discussed among those who are cognitively aware and verbally capable to express their suffering. Due to immaturity, preterm infants’ abilities to express suffering are limited. Relieving suffering is an ethical and juridical demand of good nursing care. The purpose of this study is to describe nurses’ perceptions of the suffering of preterm infants. A descriptive qualitative approach was selected. Data were collected from essays written by nurses (n = 19) working (...) in the neonatal intensive care unit. Inductive content analysis guided by the research question was performed. The nurses described individually determined suffering of the preterm infants according to four categories: suffering ruled by maturation, existence of suffering, individual threshold of suffering and interpreting the cues of suffering. Suffering of preterm infants is manifested by population-specific features, emphasising the need to develop sensitive interventions for relieving their suffering. (shrink)

Maternal opioid use during pregnancy is a growing national problem and can lead to newborns developing neonatal opioid withdrawal syndrome soon after birth. Recent data demonstrates that nearly every 15 min a baby is born in the United States suffering from NOWS. The primary treatment for NOWS is opioid replacement therapy, commonly oral morphine, which has neurotoxic effects on the developing brain. There is an urgent need for non-opioid treatments for NOWS. Transcutaneous auricular neurostimulation, a novel and non-invasive (...) form of electrostimulation, may serve as a promising alternative to morphine. tAN is delivered via a multichannel earpiece electrode worn on and around the left ear, targeting two cranial nerves—the vagus and trigeminal nerves. Prior research suggests that auricular neurostimulation exerts an anxiolytic effect on the body by releasing endogenous opioids and reduces withdrawal symptoms in adults actively withdrawing from opioids. In this first-in-human prospective, open-label trial, we investigated tAN as an adjuvant to morphine therapy in eight infants >33 weeks gestational age suffering from NOWS and receiving oral morphine treatment. Infants received tAN for 30 min 1 h before receiving a morphine dose. tAN was delivered at 0.1 mA below perception intensity at two different nerve targets on the ear: Region 1, the auricular branch of the vagus nerve; and Region 2, the auriculotemporal nerve. tAN was delivered up to four times daily for a maximum of 12 days. The primary outcome measures were safety [heart rate monitoring, Neonatal Infant Pain Scale, and skin irritation] and morphine length of treatment. tAN was well-tolerated and resulted in no unanticipated adverse events. Comparing to the national average of 23 days, the average oral morphine LOT was 13.3 days and the average LOT after tAN initiation was 7 days. These preliminary data suggest that tAN is safe and may serve as a promising alternative adjuvant for treating NOWS and reducing the amount of time an infant receives oral morphine. (shrink)

Decisions to override a parental request to withhold or withdraw treatment in the neonatal intensive care unit are often made based on the harm standard, with death being cast as the ultimate harm. However, often the treatment itself is not without harm, and the suffering engendered is undergone by an infant who is neither able to understand it nor express its presence. We can draw upon anticipated future quality of life to justify the present suffering, but are (...) in a quandary when that future is not guaranteed or is likely to hold little but further suffering. I propose that conflicts over continuing treatment are based both on disagreements about the desirability of possible futures, and on differing perceptions of the infant’s current level of suffering. Those of us who witness the suffering of these tiny, mute infants all bear some responsibility to insure that their suffering is not without purpose. (shrink)

Issues of life and death such as abortion, assisted suicide, capital punishment, and others are among the most contentious in many societies. Whose rights are protected? How do these rights and protections change over time and who makes those decisions? Based on the author's award-winning and hugely popular undergraduate course at The University of Texas, this book explores these questions and the fundamentally sociological processes that underlie the quest for morality and justice in human societies. The author's goal is not (...) to advocate any particular moral "high ground," but to shed light on the social movements and social processes that are at the root of these seemingly personal moral questions"--Provided by publisher. (shrink)

This paper examines one particular justification for the screening and termination of embryos/fetuses which possess genetic features known to cause disability. The particular case is that put forward in several places by John Harris. He argues that the obligation to prevent needless suffering justifies the prevention of the births of disabled neonates. The paper begins by rehearsing Harris's case. Then, drawing upon claims advanced in a recent paper in the Journal of Medical Ethics, it is subjected to critical scrutiny, (...) focusing on Harris's “suffering claim” .1 It is argued that the suffering claim must be false if understood as an empirical claim. And, even if understood as a conceptual truth, it mistakenly assimilates the concepts of harm and suffering. Finally, again focusing on Harris's recent work in this area, his characterisation of disability as a “harmed condition” is shown not to apply in the case of at least some moderate forms of intellectual disability. (shrink)

The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.

This Dissertation argues for a care-centrically grounded account of relational personhood and widely realized diachronic personal identity. The moral distinction between persons and non-persons is arguably one of the most salient ethical lines we can draw since many of our most fundamental rights are delineated via the bounds of personhood. The problem with drawing such morally salient lines is that the orthodox, rationalistic definition of personhood, which is widespread within philosophical, medical, and colloquial spheres, excludes, and thereby de-personifies, a large (...) number and a great variety of human beings such as neonates, young children, the elderly who suffer from dementia, individuals with severe cognitive disabilities, and patients in vegetative states. The reconceptualization of personhood necessary for a more inclusive definition ought to originate with an appropriate moral grounding. To this end, this Dissertation grounds the notion of personhood in the care ethical sphere, thereby emphasizing the role of care relations in the maintenance of the moral consideration of vulnerable individuals. This Dissertation argues that grounding the concept of a person in care relations entails a relational account of personhood, which, along with the insights of the Extended Mind and Social Manifestation Theses, leads to an extended and externalized understanding of diachronic identity, which allows fragile people to be held in their personal identities even if they themselves lack the capacities usually associated with moral personhood. As we trace a person’s identity through time, we track the various relational properties, which constitute personal narratives and thus act as a glue that binds such dynamic and often unique properties into stable, trackable narratives. Since care relations are morally relevant on a care-centric account of personhood, what is lost in cases where such care relating ceases is not merely of sentimental value, but of great moral importance as well. Morally meaningful care relations are not replaceable, and, by extension, neither are the narratives that are constituted by such unique and irreplaceable instances of relating. This Dissertation argues that the constitutive care relational nature of personal narratives makes such narratives irreplaceable and is precisely what makes persons so morally precious. (shrink)

In January 2012, the Journal of Medical Ethics published online Giubilini and Minerva's paper, ‘After-birth abortion. Why should the baby live?’.1 The Journal publishes articles based on the quality of their argument, their contribution to the existing literature, and relevance to current medicine. This article met those criteria. It created unprecedented global outrage for a paper published in an academic medical ethics journal. In this special issue of the Journal, Giubilini and Minerva's paper comes to print along with 31 articles (...) from some of the best scholars in the world, from the broadest range of perspectives on abortion and infanticide, including those strongly critical of Giubilini and Minerva.The killing of a baby is among the most shocking of human practices. I am strongly opposed to the legalisation of infanticide along the lines discussed by Giubilini and Minerva. But I would like to explain why a journal of medical ethics published an article examining infanticide and now devotes a special issue to bringing a wide range of perspectives for further examination of these issues.Infanticide has been practised throughout human history for various reasons and continues to be practised today throughout the world. In rare cases, infanticide can be practised openly and legally—for example, as specified under the ‘Groningen Protocol’, in the Netherlands. The Groningen Protocol allows doctors to end the life of neonates at the request of their parents if the infant is experiencing hopeless and unbearable suffering.2But medical infanticide arguably occurs elsewhere other than in the Netherlands today.In neonatal intensive care, it is not uncommon for a doctor to withdraw artificial ventilation with the consequence that a baby dies.3 If anyone else performed that act, including the parents of the child, it would be viewed as an act of homicide, in some cases …. (shrink)

This research explores the causes of early marriage and assesses the consequences of early marriage on maternal and child well-being in a district of Nepal. A two week long field operation was carried out to collect data where 126 respondents were selected through convenience sampling methods on the basis of two criteria, including 1) being a married women only who got married before 19 years of age; and 2) those who have children below three years. The interviews were mainly focused (...) on those who have a neonatal child. A structured interview schedule found that early marriage is still prevalent among the illiterate group. A paradigm shift was found in some aspects, such as the shift in decision-making from parents to children, a shift from arranged to love marriages, and from parental pressure to marry to love and fulfillment of sexual desire as reasons for marrying. Most of the respondents have no idea about the legal marriage age and punishment for underage marriage. Most of the respondents suffered from different physical health-related problem including poor maternal and child well-being, weakness, immaturity, miscarriage, sexual problems, no prenatal check up, and/or low birth weight. To deal with the problem a number of strategies have been suggested, mainly providing economic opportunities to young girls, improving the strictness of legal strategies about marriage age, promoting education of girls, and using mass media to increase the awareness of the whole community about the consequences of early marriage on girls themselves and on her children along with their family. Efforts need to be made in the community and other parts of Nepal where early marriage and child marriage is prevalent. (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)

To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation decisions for these (...) patients are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made. (shrink)

Abortion, particularly late‐term abortion, and neonaticide, selective non‐treatment of newborns, are feasible management strategies for fetuses or newborns diagnosed with severe abnormalities. However, policy varies considerably among developed nations. This article examines abortion and neonatal policy in four nations: Israel, the US, the UK and Denmark. In Israel, late‐term abortion is permitted while non‐treatment of newborns is prohibited. In the US, on the other hand, late‐term abortion is severely restricted, while treatment to newborns may be withdrawn. Policy in the (...) UK and Denmark bridges some of these gaps with liberal abortion and neonatal policy. Disparate policy within and between nations creates practical and ethical difficulties. Practice diverges from policy as many practitioners find it difficult to adhere to official policy. Ethically, it is difficult to entirely justify perinatal policy in these nations. In each nation, there are elements of ethically sound policy, while other aspects cannot be defended. Ethical policy hinges on two underlying normative issues: the question of fetal/newborn status and the morality of killing and letting die. While each issue has been the subject of extensive debate, there are firm ethical norms that should serve as the basis for coherent and consistent perinatal policy. These include 1) a grant of full moral and legal status to the newborn but only partial moral and legal status to the late‐term fetus 2) a general prohibition against feticide unless to save the life of the mother or prevent the birth of a fetus facing certain death or severe pain and suffering and 3) a general endorsement of neonaticide subject to a parent's assessment of the newborn's interest broadly defined to consider physical harm as well as social, psychological and or financial harm to related third parties. Policies in each of the nations surveyed diverging from these norms should be the subject of public discourse and, where possible, legislative reform. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:How We Keep Caring While Walking Through Our PainOla Ziara and Rachel CoghlanAuthor Dedication. To my dear brother Omar Ziara, a bright doctor, entrepreneur, and community advocate who was killed in an Israeli bombing in November 2023.May your soul rest in peace and may your memory remain alive in our hearts. May your unborn child grow up to become the wonderful man that you were. Forever loved by all.Palestinian-American (...) poet, Suheir Hammad, writes:Occupation means that every day you die, and the world watches in silence. As if your death was nothing, as if you were a stone falling in the earth, water falling over water.And if you face all of this death and indifference and keep your humanity, and your love and your dignity and you refuse to surrender to their terror, then you know something of the courage that is Palestine.I am a doctor from the Gaza Strip in Palestine. I live through acute war and protracted occupation. I work under missiles and through scant resources. I experience risks and dangers and face abominable choices made from nightmares. I know heartbreaking death.As doctors here, we fear, suffer, cry, and grieve alongside our patients and their families. This is my story of how we continue to care.Summer 2014 A Fifty-Two-Day War: How To Stay And How To Keep Them SafeThe huge bombardment strikes close to the hospital, scattering glass and rubble. It brings an abrupt end to my rare, quiet pause for coffee. Are the babies hit? We sprint to the Neonatal Intensive Care Unit, our full attention only on those infants, hastily checking every crib. My thoughts are frenzied. What if the next missile strikes us? Will I be able to rescue them? Will I have time to carry their tiny bodies outside through wreckage and fire? How will I choose who to save, and who to leave behind? Could I choose? Will I even be able to think lucidly, act logically for those babies if the fire consumes us? We stay.Somewhere, a house razed to the ground, a mother and her children dead. This time, our babies are safe.Summer 2014 A Fifty-Two-Day War: How To Cast Off Danger And How To Find ConsolationA missile shatters our neighbour’s roof. I am about to leave home for my evening shift. I check on my shaking mum; she is okay, not hurt at least. I ring the senior doctor. I am sorry. I am coming. I will be a little late. Two further missiles hit, wiping out the next-door building completely. No, do not send an ambulance for me. It is too dangerous. I will come [End Page 153] alone. Trembling through the dust and darkness, I leave on foot to reach those babies. I must compose myself. We are needed there to bring calm, to keep caring.And we gamble our lives to seek distraction and comfort for ourselves. We find solace through unbearable pain in our caring.Winter, Spring, Autumn, Summer, Any Day: How To Question Purpose And How To Feel HelplessIt is an ordinary night shift in ‘quiet’ times. Tonight, all the beds are occupied. All the ventilators are taken, forcing life into small, sick faces. At dawn, the phone call comes. A new baby struggling to breathe is on his way. I call around. No more beds to take him here or anywhere. No more ventilators—here or anywhere. Bring him here. We will care for him.He is in a very bad way. He needs immediate life-saving care. We take turns manually ventilating him, working to the hissing rhythm of the Ambu Bag1—inflating, deflating, inflating. Our arms ache. We keep pumping the bag. Do not stop. The moment when the morning shift arrives is our moment of salvage. We can go home. We have made it through the night without medicines, machines, disposables, or enough manpower, our arms throbbing. We have kept him alive.But he is so fragile, the system is fragile, we are fragile. Dare I even ask—is it worth it? Is it worth a baby surviving the... (shrink)

Abortion for life-limiting foetal anomaly is often an intensely painful choice for the parents; though widely offered and supported, it is surprisingly difficult to defend in ethical terms. Abortion on this ground is sometimes defended as foetal euthanasia but has features which sharply differentiate it from standard non-voluntary euthanasia, not least the fact that any suffering otherwise anticipated for the child may be neither severe nor prolonged. Such abortions may be said to reduce suffering for the family including (...) siblings – a consideration rarely stated so explicitly in defences of postnatal euthanasia – or for the woman who must in any case face the eventual loss of her baby, and for whom the abortion is seen as therapeutic in minimising pain. Finally, the abortion may be said to constitute the cessation of morally optional life support on the part of the woman, and/or to be a ‘social’ choice she is entitled to make, whether or not this in fact promotes her interests or those of her child. These defences need honest exploration: the intense parental suffering caused by the choice to end an often much-wanted pregnancy should not preclude but rather encourage the question whether this choice can indeed be ethically proposed to couples, especially compared with the neonatal palliative care (‘perinatal hospice’) approach so well received by parents who experience it. (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)

Giubilini and Minerva argue that, in cases where in utero abortion is currently condoned, ‘after-birth abortion’, or infanticide, ought also to be permitted.1 For example, a third-trimester abortion might be defended on the basis of foetal genetic abnormality, or through appeal to unacceptable parental suffering should the child live. On the authors’ formulation, infanticide in neonates of the same corrected age, in otherwise identical circumstances, ought also to be defended. The paper has, unsurprisingly, provoked public criticism, and even revulsion. (...) I argue that the distress evoked is a moral consideration in its own right. Community interests ought to inform …. (shrink)

Religion and medicine -- Theology and medical ethics -- The profession and its integrity -- Life and its sanctity -- Health and healing -- Death and its (in)dignity -- Nature and its mastery -- Care of patients and their suffering -- Respect for persons and their agency -- Contraception -- Technological reproduction -- Genetic control -- Abortion -- Choosing death and letting die -- Care of neonates -- The physician-patient relationship: advise and consent -- Psychiatric care: professional commitments and (...) social responsibilities -- Research and experimentation -- Allocation and distribution.; This collection includes a wide range of contemporary theological essays dealing with medicine ethics, as well as some material from Scripture and from classical theologians. It contains the work of Catholics and Protestants, "liberals" and "evangelicals," as well as some contemporary essays not written by Christian theologians but of great importance for theological reflection. Together the essays provide a rich introduction to theological reflection on medical ethics and a convincing demonstration of the contribution theology can make to the consideration of issues in medical ethics. (shrink)

Introduction: Congenital myasthenic syndromes refer to a heterogenic group of neuromuscular transmission disorders. CMS-subtypes are diverse regarding exercise intolerance and muscular weakness, varying from mild symptoms to life-limiting forms with neonatal onset. Long-term follow-up studies on disease progression and treatment-response in pediatric patients are rare.Patients and Methods: We analyzed retrospective clinical and medication data in a cohort of 32 CMS-patients including the application of a standardized, not yet validated test to examine muscular strength and endurance in 21 patients at (...) the last follow-up. Findings obtained in our cohort were compared with long-term follow-up studies of CMS-cohorts from the literature by considering the underlying molecular mechanisms. Outcomes of CMS-ST were compared to results of normal clinical assessment.Results: Thirty-two pediatric patients with defects in eight different CMS-genes were followed by a median time of 12.8 years. Fifty-nine percentage of patients manifested with first symptoms as neonates, 35% as infants. While 53% of patients presented a reduced walking distance, 34% were wheelchair-bound. Even under adequate therapy with pyridostigmine and 3,4-diaminopyridine, CHAT-mutations led to the progression of muscular weakness partly in combination with persistent respiratory and bulbar symptoms. RAPSN, CHRND, and CHRNB1 patients with neonatal manifestation, early respiratory problems, and bulbar symptoms showed a good and maintained treatment response. CHAT and CHRNE patients required higher PS dosages, whereas RAPSN patients needed a lower mean dosage at the last follow-up. The benefits of short-term medication and long-term progression of symptoms were highly dependent on the specific genetic defect. CMS-ST was carried out in 17/21 patients, determined affected muscle groups including bulbar and ocular symptoms, some of which were not reported by the patients.Conclusions: Our findings and comparison with the literature- suggest a better treatment-response and less severe progression of symptoms present in patients suffering from mutations in CMS-genes directly associated with receptor deficiency, while patients with defects leading to synaptopathy and presynaptic defects tend to have worse outcomes. Assessment of affected muscular groups and clinical symptoms by CMS-ST may be a useful tool for optimal therapeutic management of the patients, especially for future clinical studies. (shrink)

Deborah is a thirty-three-year-old who presented to labor and delivery at thirty-seven weeks gestation with complaints of contractions. Upon arrival, she explained that her fetus, Nathan, had been diagnosed with a “lethal” condition by her primary obstetrician. At twenty-two weeks gestation, an amniocentesis confirmed trisomy 13, a chromosomal abnormality leading to miscarriage or stillbirth in nearly one-half of affected pregnancies. During the admission process, Deborah voices the worry that due to Nathan's brain and heart structure, vaginal delivery could be traumatic (...) and cause him to suffer. Deborah wishes for him to have as painless and as dignified a death as possible; cesarean section, she feels, will achieve this. Yet with her history of three prior vaginal deliveries, normally progressing labor, and poor fetal prognosis that is unlikely to improve with cesarean delivery, there is no maternal or fetal indication for a cesarean section. Should the obstetrician proceed with a cesarean delivery despite knowing that it would expose the mother to surgical risks with little or no corresponding fetal or neonatal benefit? (shrink)

[From Euthanasia to Infanticide] The paper revisits the recent controversy over Dr. Mitlőhner’s defense of infanticide, published in this journal. In section 1, I point out the weaknesses of Mitlőhner’s paper. In sections 2 and 3 I turn to the most sophisticated defense of infanticide on offer today, that of Peter Singer’s. Section 2 sums up Singer’s description of the medical practice as already having abandoned the traditional ethic of equal value of all human lives, which motivates ethical revisionism. However, (...) an explicit justification of a revision is necessary. This is the job of Singer’s Replacement Argument, examined in section 3. I argue that this justification of infanticide in completely impersonal terms fails. In section 4, I reject it in favor of Ronald Dworkin’s distinction between experiential interests, possessed by infants, and critical interests that develop later. Hence, neonatal euthanasia can sometimes be justified in terms of a newborn‘s own interests (presumably, to relieve its suffering), not in impersonal terms. The only exception is those infants that lack any capacity for cognitive activity whatsoever, and who thus lack even experiential interests. It is an open question whether their “life” differs from death, and whether by killing them we perform infanticide. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Please Help Me”Rebecca L. VolpeTwo–year–old Jay was born prematurely at 26 weeks gestation, addicted to opiates. After several months in the Neonatal ICU, he was sent home, ventilator–dependent but with a high likelihood of survival and a low chance of severe, lasting disability. When Jay was 1½, he had a cardiopulmonary arrest at home. The parents of children who are on ventilators at home receive extensive education and (...) training about how to respond to something like an arrest. They are taught that a quick response is often critical to their child’s long–term prognosis. And yet, Jay’s parents took such a long time to respond to his code that Jay now has severe hypoxic ischemic encephalopathy: his brain was deprived of oxygen for so long that he has no higher cortical function, and will never think, speak, walk, or play.Currently, Jay is ventilator–dependent and has a very poor prognosis. Jay goes back and forth between a nursing home and the hospital. During one of his many hospitalizations, the ICU team decided to call an ethics consultation, because they felt that continued aggressive intervention was no longer in Jay’s best interests. I was the person on the other end of the line when the medical team called. After having a brief conversation with the attending physician, I left my office and walked to the Pediatric ICU to visit Jay. I arrived at the bedside—really just a large crib—and saw a baby with dark hair lying flat on his back. His tongue was swollen and protruding from his mouth, his eyes were puffy and closed, and his limbs were limp. On his belly was a piece of paper with the words, “BECKY PLEASE HELP ME” typed in huge, bold font. I looked up, into the eyes of the attending physician and said, “Did you type that?” The physician nodded yes. Much could be said about this physician’s behavior. But the bottom line—from a clinical perspective, at least—is that this ICU team was desperate, and that they had significant expectations that I would be able to help them.I began the work of the consultation. I reviewed the medical record, spoke with members of the treating team, and set up a time to talk to the family. During the family meeting, I learned that Jay’s parents wanted to continue to treat aggressively, and that they believed it was not their place to decide when it was their son’s time to die. That was [End Page 122] God’s decision. They could not fathom removing interventions that were maintaining their son’s life. They acknowledged that his quality of life was not high, but, still, it was life.The preferences of the treating team were in stark contrast to the parents’ preferences. The neurologists believed Jay did not have the capacity to experience physical pain, but the ICU team believed that continuing to treat Jay was cruel. Although the ICU team acknowledged that Jay was probably not suffering, they noted that we could not know for sure, and that sometimes Jay grimaced and withdrew—signs that are often interpreted as suffering. The ICU team also argued that given all the sick children in the world, and the scarcity of healthcare resources, it didn’t make sense to invest hundreds of thousands of dollars into prolonging Jay’s life. Additionally, they discovered that Jay had osteopenia (weak, brittle bones)—which was causing multiple bone fractures. The ICU team anguished over the thought of Jay’s small, soft bones continuing to break despite their best efforts.The bioethicist in me knows that, as long as the patient isn’t suffering and the parents aren’t demanding futile interventions (they weren’t), our role as providers was not to judge the parents’ value system. I told the ICU team over and over that different people place different value on Jay’s type of life, and that it wasn’t for us to tell them that their value structure was wrong. I talked with other members of the clinical ethics consultation service. Then I brought the case to the entire institutional... (shrink)

- First book to describe what pain means in vulnerable or special groups of people - Clinical applications described in each chapter - Provides insight into the nature of pain experience across the lifespan -/- This book, the third and final volume in the Meaning of Pain series, describes what pain means to people with pain in “vulnerable” groups, and how meaning changes pain – and them – over time. -/- Immediate pain warns of harm or injury to the person (...) with pain. If pain persists over time, more complex meanings can become interwoven with this primitive meaning of threat. These cognitive meanings include thoughts and anxiety about the adverse consequences of pain. Such meanings can nourish existential sufferings, which are more about the person than the pain, such as loss, loneliness, or despair. -/- Although chronic pain can affect anyone, there are some groups of people for whom particular clinical support and understanding is urgently needed. This applies to “vulnerable” or “special” groups of people, and to the question of what pain means to them. These groups include children, women, older adults, veterans, addicts, people with mental health problems, homeless people, or people in rural or indigenous communities. Several chapters in the book focus on the lived experience of pain in vulnerable adults, including black older adults in the US, rural Nigerians, US veterans, and adults with acquired brain injury. The question of what pain experience could mean in the defenceless fetus, neonate, pre-term baby, and child, is examined in depth across three contributions. -/- This book series aspires to create a vocabulary on the “meanings of pain” and a clinical framework with which to use it. It is hoped that the series stimulates self-reflection about the role of meaning in optimal pain management. -/- Meanings of Pain is intended for people with pain, family members or caregivers of people with pain, clinicians, researchers, advocates, and policy makers. Volume I was published in 2016; Volume II in 2019. (shrink)

OBJECTIVE: We studied and compared the attitudes of pregnant women v new mothers in an attempt to confirm changing patterns of maternal response towards medical ethical decision making in critically ill or malformed neonates. DESIGN: Data were obtained by questionnaires divided into three sections: 1. sociodemographic; 2. Theoretical principles which might be utilised in the decision-making process; 3. Hypothetical case scenarios, each followed by possible treatment options. RESULTS: Pregnant women (n = 545) consistently requested less aggressive medical intervention for the (...) hypothetical cases than did new mothers (n = 250) [Trisomy 18: 57% v 42%; p = 0.0004; Asphyxia: 75% v 63%; p = 0.0017; Down's syndrome 81% v 62%; p = 0.0001; LBW 85% v 75%; p = 0.004]. Significant differences were also observed in the responses to the theoretical principles, with pregnant women attributing less importance to preserving life at all cost, while being more concerned with physical and emotional pain and suffering, with financial cost, and with the infant's potential for future productivity. (shrink)

An intellectual history of the philosophers who grappled with the problem of evil, and the case for why pessimism still holds moral value for us today In the seventeenth and eighteenth centuries, philosophers engaged in heated debates on the question of how God could have allowed evil and suffering in a creation that is supposedly good. Dark Matters traces how the competing philosophical traditions of optimism and pessimism arose from early modern debates about the problem of evil, and makes (...) a compelling case for the rediscovery of pessimism as a source for compassion, consolation, and perhaps even hope. Bringing to life one of the most vibrant eras in the history of philosophy, Mara van der Lugt discusses legendary figures such as Leibniz, Hume, Voltaire, Rousseau, Kant, and Schopenhauer. She also introduces readers to less familiar names, such as Bayle, King, La Mettrie, and Maupertuis. Van der Lugt describes not only how the earliest optimists and pessimists were deeply concerned with finding an answer to the question of the value of existence that does justice to the reality of human suffering, but also how they were fundamentally divided over what such an answer should look like. A breathtaking work of intellectual history by one of today's leading scholars, Dark Matters reveals how the crucial moral aim of pessimism is to find a way of speaking about suffering that offers consolation and does justice to the fragility of life. (shrink)

Florijn’s helpful discussion of the Heringa case illustrates the difficulties in drawing a boundary on eligibility conditions for EAS. In Heringa, the Dutch Supreme Court reaffirmed...

Volume 19, Issue 10, October 2019, Page 57-59.

This chapter contains section titled: Notes.

Research Problem: The onset of the COVID-19 pandemic has triggered a multi-faceted crisis worldwide. Researchers and health authorities in various parts of the world echoed the dire condition of the public's mental health. This study sought to examine the mediating effect of personal meaning on the association between coronavirus -related suffering, mental health problems, and life satisfaction. Participants included 231 adults and completed measures of suffering related to COVID-19, meaning, life satisfaction, and mental health problems online.Results: Findings from (...) mediation analysis showed that suffering had significant associations with personal meaning, mental health, and well-being. Furthermore, personal meaning was significantly associated with adults' mental health and well-being and mediated the negative effect of suffering on mental health and well-being.Discussion: Overall, results from this study indicate that personal meaning is an important promotive factor that may help to understand the negative effect of coronavirus-related suffering on mental health and well-being amid the public health crisis. (shrink)

This article discusses Nietzsche's response in The Birth of Tragedy to what he calls the wisdom of Silenus, that “the very best thing is utterly beyond your reach: not to have been born, not to be, to be nothing. However, the second best thing for you is to die soon.” I begin by analyzing the view that Silenus expresses a proto-Schopenhauerian truth about the world as “Will.” I then review Bernard Reginster's interpretation of the wisdom of Silenus as an early (...) form of Nietzschean nihilism. As an alternative to these readings, I argue that, for Nietzsche, Silenus's wisdom addresses a crucial, existential dimension of ancient Greek tragic culture. I conclude by pointing out that, in BT, Nietzsche locates nihilism not in the wisdom of Silenus, but in the advent of Socratism. (shrink)

Recent events around the globe reflect the tensions and ethical dilemmas of the postmodern, postcolonial and neocolonial world that have far reaching implications for health, well-being, and human suffering. As we consider what is at stake, and what this means for local lives and human relationships, we need to examine whether the theories we draw on are adequate to further our understanding of health, and the social and material conditions of human suffering. In this paper I begin to (...) explore the question, ‘Can postcolonial feminist theories provide an inclusive scholarship that would further our understanding of human suffering and open up a path to healing?’ At issue here is whether this scholarship adds another dimension to a praxis-oriented nursing science. (shrink)

Until the 1970s, models of early infancy tended to depict the young child as internally preoccupied and incapable of processing visual-tactile data from the external world. Meltzoff and Moore's groundbreaking studies of neonatal imitation disprove this characterization of early life: They suggest that the infant is cognizant of its external environment and is able to control its own body. Taking up these experiments, theorists argue that neonatal imitation provides an empirical justification for the existence of an innate ability (...) to engage in social communication. Since later imitation is taken as a benchmark for self- and other-awareness, theorists claim that a proto- or primitive self must exist in the infant. This paper takes up the issue of whether or not neonatal imitation does provide us with a ground to argue against developmental accounts that consider self-awareness to be a later acquisition. I argue that the enthusiasm over neonatal imitation is premature. Psychological studies that claim to prove neonatal imitation do not provide sufficient grounds for dismissing alternate philosophical and psychological theories about the self as being a post-birth "event" rather than an intrinsic condition. Therefore, I argue that there is no compelling reason to suppose that we come to the world with a primitive sense of self- or other-awareness. (shrink)

A 2017 Nature report was widely touted as hailing the arrival of the artificial womb. But the scientists involved claim their technology is merely an improvement in neonatal care. This raises an under-considered question: what differentiates neonatal incubation from artificial womb technology? Considering the nature of gestation—or metaphysics of pregnancy—(a) identifies more profound differences between fetuses and neonates/babies than their location (in or outside the maternal body) alone: fetuses and neonates have different physiological and physical characteristics; (b) characterizes (...) birth as a physiological, mereological and topological transformation as well as a (morally relevant) change of location; and (c) delivers a clear distinction between neonatal incubation and ectogestation: the former supports neonatal physiology; the latter preserves fetal physiology. This allows a detailed conceptual classification of ectogenetive and ectogestative technologies according to which the 2017 system is not just improved neonatal incubation, but genuine ectogestation. But it is not an artificial womb, which is a term that is better put to rest. The analysis reveals that any ethical discussion involving ectogestation must always involve considerations of possible risks to the mother as well as her autonomy and rights. It also adds a third and potentially important dimension to debates in reproductive ethics: the physiological transition from fetus/gestateling to baby/neonate. (shrink)

Over 35 years ago, Meltzoff and Moore (1977) published their famous article ‘Imitation of facial and manual gestures by human neonates’. Their central conclusion, that neonates can imitate, was and continues to be controversial. Here we focus on an often neglected aspect of this debate, namely on neonatal spontaneous behaviors themselves. We present a case study of a paradigmatic orofacial ‘gesture’, namely tongue protrusion and retraction (TP/R). Against the background of new research on mammalian aerodigestive development, we ask: How (...) does the human aerodigestive system develop and what role does TP/R play in the neonate’s emerging system of aerodigestion? We show that mammalian aerodigestion develops in two phases: (1) from the onset of isolated orofacial movements in utero to the post-natal mastery of suckling at 4 months after birth, and; (2) thereafter, from preparation to the mastery of mastication and deglutition of solid foods. Like other orofacial stereotypies, TP/R emerges in the first phase and vanishes prior to the second. Based upon recent advances in activity-driven early neural development, we suggest a sequence of three developmental events in which TP/R might participate: the acquisition of tongue control, the integration of the central pattern generator for TP/R with other aerodigestive CPGs, and the formation of connections within the cortical maps of S1 and M1. If correct, orofacial stereotypies are crucial to the maturation of aerodigestion in the neonatal period but also unlikely to co-occur with imitative behavior. (shrink)