The Pope and the Possibilities of the Path Less Traveled.

Pope Francis's Address to the participants of the conference "Yes to Life! Taking Care of the Precious Gift of Life in Its Frailty" powerfully touches on multiple important aspects of the care of children experiencing "extreme frailty." It is a deeply moral account of the challenges that health-care providers, families, and patients confront in the technologically sophisticated and confusing world of modern medicine. This commentary draws upon a clinical case to contextualize the Pope's words in the hope of achieving a nuanced understanding of what pediatric palliative care offers to children experiencing extreme frailty. In his Address, the Pope asks health-care providers to consider an approach to frailty and suffering that allows for the opportunity to experience transcendent meaning and transpersonal value, and recognizes that it would be difficult to achieve these goals without the comprehensive and capable care offered by pediatric palliative care specialists.

[To act or not to act? Developments in prenatal and postnatal care for children with spina bifida aperta]. / Handelen of niet handelen?

To act or not to act? Developments in prenatal and postnatal care for children with spina bifida aperta Until the middle of the twentieth century, newborns with spina bifida aperta had low chances of survival. Advances in the treatment of hydrocephalus, among other conditions, led to increased chances of survival during the 1960s. This also revealed the downsides of the treatment of spina bifida patients since some considered the quality of life of a number of these patients to be unacceptable. But withholding treatment also had negative consequences, leading to an ethical deadlock. Over the past thirty years - besides postnatal closure of the neural tube defect - more emphasis has been put on selective pregnancy termination and sporadic active termination of life in newborns with very severe forms of spina bifida. At the same time, new treatment strategies, such as foetal surgery, are being developed. With this historical overview, we illustrate the way in which technological developments and ethical dilemmas are constantly affecting each other.

Euthanasia and assisted dying: what is the current position and what are the key arguments informing the debate?

Assisted dying is a highly controversial moral issue incorporating both physician-assisted dying (PAD) and voluntary active euthanasia. End-of-life practices are debated in many countries, with assisted dying receiving different consideration across various jurisdictions. In this paper, we provide an analytic framework of the current position and the main arguments related to the rights and moral principles concerning assisted dying. Assisted dying proponents focus on the respect of autonomy, self-determination and forestalling suffering. On the other hand, concerns are raised regarding the interpretation of the constitutional right to life and balancing this with the premise of assisted dying, alongside the impacts of assisted dying on the doctor-patient relationship, which is fundamentally based on trust, mutual respect and the premise of 'first do no harm'. Our review is underpinning the interpretation of constitutional rights and the Hippocratic Oath with the premise of assisted dying, alongside the impacts of assisted dying on the doctor-patient relationship. Most clinicians remain untrained in such decision making, with fears against crossing key ethical divides. Due to the increasing number of cases of assisted dying and lack of consensus, our review enables the integration of ethical and legal aspects and facilitates decision making.

Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands.

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.

Pediatric Euthanasia and Palliative Care Can Work Together.

Since the Netherlands produced the Groningen protocol describing the methods to be used for pediatric euthanasia and Belgium passed laws authorizing euthanasia for children who consent to it, the issue of pediatric euthanasia has become a relevant topic to discuss. Most rejections of pediatric euthanasia fall into 1 or more of 3 categories, each of which has problems. This article shows how several recent arguments against pediatric euthanasia fail to prove that pediatric euthanasia is unacceptable. It does not follow from this that the practice is permissible but rather that if one is to reject such a practice, stronger arguments will need to be made, especially in countries where adult euthanasia or assisted suicide is already permitted.

Child euthanasia: should we just not talk about it?

Belgium has recently extended its euthanasia legislation to minors, making it the first legislation in the world that does not specify any age limit. I consider two strands in the opposition to this legislation. First, I identify five arguments in the public debate to the effect that euthanasia for minors is somehow worse than euthanasia for adults--viz, arguments from weightiness, capability of discernment, pressure, sensitivity and sufficient palliative care--and show that these arguments are wanting. Second, there is another position in the public debate that wishes to keep the current age restriction on the books and have ethics boards exercise discretion in euthanasia decisions for minors. I interpret this position on the background of Velleman's 'Against the Right to Die' and show that, although costs remain substantial, it actually can provide some qualified support against extending euthanasia legislation to minors.

[Attitudes towards euthanasia: The impact of experiencing end-of-life care]. / Einstellungen zur Sterbehilfe.Welchen Einfluss hat die Pflege eines sterbenskranken Angehörigen?

BACKGROUND: It is a matter of debate whether euthanasia should be part of medical practice. OBJECTIVES: The current study investigates the attitudes of bereaved family members of cancer patients towards euthanasia. MATERIALS AND METHODS: We conducted a survey with 211 people who had recently lost a close relative to cancer. Participants were asked whether euthanasia should be part of medical practice.Two logistic regression models were calculated in order to determine the factors influencing the attitude towards active euthanasia and assisted suicide. RESULTS: About 70% and 75% of the respondents approved active euthanasia and assisted suicide, respectively. Religious denomination and psychological distress had a significant impact on the attitude towards active euthanasia. About 10%of the deceased patients had asked for active euthanasia. CONCLUSIONS: There was no difference between bereaved family members and the general population regarding the acceptance of euthanasia. Attitudes towards active euthanasia are associated with psychological distress and shaped by cultural values rather than by the experience of end-of-life care.

[When letting-be is more important than actions. Plea for a new culture of dying]. / Wenn das Annehmen wichtiger wird als das Machen. Plädoyer für eine neue Kultur des Sterbens.

The fact of "being mortal" and mortality are of an existential meaning for every human being. The knowledge of death and the imagination of a finiteness of life have a crucial impact on the whole life. Today it has become a common approach to plan death, to organize and to regulate it. We tend to reduce death to a duty of management. With this rationalization of death we try to get within distance of it. Active euthanasia and assisted suicide seem to be the adequate answers to this approach but is death really well understood if we only try to handle it this way? Is autonomy really the only relevant principle to respect the concerns of dying individuals or desperate people who want to die? This contribution pleads for an emphasis on a new ethics of caring, because a truly human medicine is not possible without caring. It shows that care does not necessarily get in conflict with autonomy but that it is the prerequisite for autonomy.

End-of-life decisions and the reinvented Rule of Double Effect: a critical analysis.

The Rule of Double Effect (RDE) holds that it may be permissible to harm an individual while acting for the sake of a proportionate good, given that the harm is not an intended means to the good but merely a foreseen side-effect. Although frequently used in medical ethical reasoning, the rule has been repeatedly questioned in the past few decades. However, Daniel Sulmasy, a proponent who has done a lot of work lately defending the RDE, has recently presented a reformulated and more detailed version of the rule. Thanks to its greater precision, this reinvented RDE avoids several problems thought to plague the traditional RDE. Although an improvement compared with the traditional version, we argue that Sulmasy's reinvented RDE will not stand closer scrutiny. Not only has the range of proper applicability narrowed significantly, but, more importantly, Sulmasy fails to establish that there is a morally relevant distinction between intended and foreseen effects. In particular, he fails to establish that there is any distinction that can account for the alleged moral difference between sedation therapy and euthanasia.

[The practices of withdrawing artificial nutrition and hydration in the neonatal intensive care unit: a preliminary study]. / Étude pilote sur les pratiques de l'arrêt de la nutrition/hydratation artificielle en réanimation néonatale.

INTRODUCTION: Prematurity is one of the etiologies for severe neurological complications. Decisions to withdraw therapeutics, including artificial nutrition and hydration (ANH), are sometimes discussed. But can one withdraw ANH if the patient is a child suffering from severe neurological conditions, based on his best interests? The aim of this study was to further the understanding of the complexity of the withdrawal of ANH and its implementation in the neonatal intensive care unit (NICU). METHOD: This qualitative preliminary study based on a questionnaire was conducted on the staff in the NICU of the Pontoise medical center (France) in February 2012. The results were compared with the current knowledge on this issue and sociological data. RESULTS: Ten of the hospital staff members responded to the questionnaire: 60% considered ANH as a treatment, but the status of ANH (i.e., treatment or care) remained undefined for several respondents. Comparison with the withdrawal of mechanical ventilation or adult practices seemed to be inadequate. The staff had little experience in the domain and therefore few certainties on practices. Half of the respondents indicated that terminal sedation needed to be used. For the other half, it depended on the patient's pain. Timing was also an important notion given that the newborn is a being developing and evolving each in its own way. CONCLUSION: The withdrawal of ANH remains controversial in the NICU. Humanity, culture, and the relationship to others are ever present in the decision-making process, creating a moral opposition above and beyond ethical reflection.

Euthanasia and end-of-life practices in France and Germany. A comparative study.

The objective of this paper is to understand from a sociological perspective how the moral question of euthanasia, framed as the "right to die", emerges and is dealt with in society. It takes France and Germany as case studies, two countries in which euthanasia is prohibited and which have similar legislation on the issue. I presuppose that, and explore how, each society has its own specificities in terms of practical, social and political norms that affect the ways in which they deal with these issues. The paper thus seeks to understand how requests for the "right to die" emerge in each society, through both the debate (analysis of daily newspapers, medical and philosophical literature, legal texts) and the practices (ethnographic work in three French and two German hospitals) that elucidate the phenomenon. It does so, however, without attempting to solve the moral question of euthanasia. In spite of the differences observed between these two countries, the central issue at stake in their respective debates is the question of the individual's autonomy to choose the conditions in which he or she wishes to die; these conditions depend, amongst others, on the doctor-patient relationship, the organisation of end-of-life care in hospital settings, and more generally, on the way autonomy is defined and handled in the public debate.

Concepts and debates in end-of-life care.

Debates in India on end-of-life care assumed a new life after the petition in the Supreme Court in the case of Aruna Ramchandra Shanbaug, calling for withdrawal of life-sustaining therapy from a patient in a persistent vegetative state. The Court's landmark decision has led the way for discussing and developing guidelines on various situations in end-of- life care. This paper discusses some key concepts in end-of-life care - medical futility, palliative care, advance directives, surrogate decision making, physician assisted suicide and euthanasia - with reference to the guidelines of various medical associations and decisions in Indian courts.

[Bioethics of Sigmund Freud´s death: euthanasia or appropriation?]. / Bioética de la muerte de Sigmund Freud: ¿Eutanasia o apropiación?

The death of Freud raises the ethical dilemma about euthanasia. It can be characterized as indirect active euthanasia according to the rule of double effect, or terminal sedation, or palliated death. The primacy of the principle of autonomy over non maleficence, conditioned the physician's attitude toward his patient Freud. The physician assisted death was and remains punishable in western medicine. Therefore, a fundamental tradition was infringed. In contrast, the present study attempts to characterize the final position of Freud himself to his death and called it appropriation of his finitude; he assumes his being-unto-death, that is, he now projects his being not as a being-at-his-end but as a being-unto-end, indicating thereby that he understood that the end always penetrated his whole existence.

[Euthanasia and other decisions at the end of life (Proposal for a more transparent terminology and some thoughts on the legal framework of medical treatment)]. / Az életvégi orvosi döntésekrol, közöttük az eutanáziáról. (Javaslat egy áttekinthetobb terminológiára és gondolatok az orvoslás jogi szabályozásáról).

Indication of euthanasia is only one of several medical decisions at the end of life. Precise definition of this topic related to the clinical events happening around the sick-bed is not complete in the legal and medical literature. The present review attempts to classify the different end of life events with the aim of clarifying which of these do not belong to the concept of passive euthanasia. Euthanasia is not a legal category. The everyday expressions of active and passive euthanasia are simplifications, which cover actions of different purposes. Use of these in medical and legal literature can be confusing and misleading. We differentiate decisions at the end of life on basis of their purpose. Based on the definition and category of the Hungarian Doctors' Chamber, euthanasia is the act or the lack of action in order to mercifully shorten or end the life of a suffering fellow-man to help him. Concepts of active, passive and forced euthanasia are defined. The terms of indirect and intermediate euthanasia are not used in order to avoid misunderstanding. Help and participation of non-professionals in the implementation cannot be completely excluded from the concept of euthanasia, and we believe euthanasia is not merely related to doctors. We outline those medical decisions at the end of life which do not belong to the category of passive euthanasia, namely: withdrawal of ineffective and life sustaining treatments, letting go of the patient, contra-indication of therapy escalation, use of palliative therapy, pain-relieving treatment, compromise medicine, consideration of reanimation and choosing cost-effective therapy. We touch upon the subject of the living will, why it cannot be applied, and its relation to active and passive euthanasia. With reference to the legal regulation of life saving and life sustaining treatment, we deal with the expected spirit of medical legislation.

Good life good death according to Christiaan Barnard.

Christiaan Barnard (1922-2002), pioneering heart transplant surgeon, introduced his ideas on euthanasia in a well-written and researched book, Good Life Good Death. A Doctor's Case for Euthanasia and Suicide, published in 1980. His courage in analyzing this topic in a forthright and clear manner is worth reviewing today. In essence, Barnard supported and practiced passive euthanasia (the ending of life by indirect methods, such as stopping of life support) and discussed, but never practiced, active euthanasia (the ending of life by direct means). Barnard believed that "the primary goal of medicine was to alleviate suffering-not merely to prolong life-he argued that advances in modern medical technology demanded that we evaluate our view of death and the handling of terminal illness." Some in the surgical community took issue with Barnard when he publicized his personal views on euthanasia. We discuss Barnard's beliefs and attempt to clarify some misunderstandings regarding this particular controversial area of medicine.

Accessing the ethics of complex health care practices: would a "domains of ethics analysis" approach help?

This paper explores how using a "domains of ethics analysis" approach might constructively contribute to an enhanced understanding (among those without specialized ethics training) of ethically-complex health care practices through the consideration of one such sample practice, i.e., deep and continuous palliative sedation (DCPS). For this purpose, I select four sample ethics domains (from a variety of possible relevant domains) for use in the consideration of this practice, i.e., autonomous choice, motives, actions and consequences. These particular domains were chosen because of their relevance to the analysis of DCPS and their relative ease of access to those without ethics training. The analysis demonstrates that such an approach could facilitate the emergence of accessible arguments and discussion points that could enhance the understanding and appreciation of this and other health care practices with strong ethics dimensions.