Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

ABSTRACTThis report on end‐of‐life decision‐making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters.Chapter 1 reviews what is known about end‐of‐life care and opinions about assisted dying in Canada.Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death.Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order.Chapter 4 (...) reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form.Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. (shrink)

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based on a medical (...) model and are restrictive in terms of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers. (shrink)

With disagreement, doubts, or ambiguous grounds in end–of-life decisions, doctors are advised to involve a clinical ethics committee. However, little has been published on doctors’ experiences with discussing an end-of-life decision in a CEC. As part of the quality assurance of this work, we wanted to find out if clinicians have benefited from discussing end-of-life decisions in CECs and why. We will disseminate some Norwegian doctors’ experiences when discussing end-of-life decisions in CECs, based on semi-structured interviews (...) with fifteen Norwegian physicians who had brought an end-of-life decision case to a CEC. Almost half of the cases involved conflicts with the patients’ relatives. In a majority of the cases, there was uncertainty about what would be the ethically preferable solution. Reasons for referring the case to the CEC were to get broader illumination of the case, to get perspective from people outside the team, to get advice, or to get moral backing on a decision already made. A great majority of the clinicians reported an overall positive experience with the CECs’ discussions. In cases where there was conflict, the clinicians reported less satisfaction with the CECs’ discussions. The study shows that most doctors who have used a CEC in an end-of-life decision find it useful to have ethical and/or legal aspects illuminated, and to have the dilemma scrutinized from a new perspective. A systematic discussion seems to be significant to the clinicians. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making (...) in pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Background Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. Aim This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. Research design and participants (...) This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer’s philosophical hermeneutics. Ethical considerations Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. Results The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. Conclusion and final considerations The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices. (shrink)

With the advancement of medical technology, various life-sustaining treatments are available at the end of life. Older adults should be encouraged to establish their end-of-life treatment preferences (ELTP) while they are physically and mentally able to do so. The purpose of this study was to explore ELTP among older adults and to compare those preferences in a subset of individuals who had reported their ELTP in a survey completed the previous year. This was a descriptive study of (...) 191 older adults living in a continuing care retirement community. Approximately half of the participants did not want cardiopulmonary resuscitation, to be put on a respirator, or to receive dialysis. The findings in this study suggest that many older adults do not want aggressive interventions at the end of life, but choose rather those measures that will keep them comfortable. Moreover, treatment choices may change over time. Health care providers should initiate discussions about ELTP at regular intervals (yearly) to assist older adults in dictating their end-of-life care. (shrink)

The conditions of transport and slaughter at the end of their lives are a major challenge to the welfare of agricultural animals. • End-of-life experiences should be of a greater ethical concern than others of similar intensity and duration, due to their position in the animal’s life. • End-of-life welfare can have both internal importance to the animals and external ethical importance to human decision-makers. • We should pay extra care to ensure that the conditions during transport (...) and slaughter are as positive as possible. (shrink)

The prospect of death, for Confucians, creates particular social and familial duties. Short of end‐of‐life issues, children, as a matter of general filial duty, certainly have a duty to provide care and comfort for parents as they experience the limitations of old age. Death is a major theme of Zhuangzi. At various points in the text, we are counseled to embrace the inevitable, to detach ourselves from the desire to preserve life beyond its natural bounds. When a loved (...) one dies, however he or she has died, feelings of loss and grief naturally arise in those closest to the deceased. Confucianism believes that these emotions are the deepest wellsprings of humanity, the most fundamental sentiments of human love. Instead of denying grief, Confucius and Mencius tell us to cultivate it, to bring it into the center of our daily lives through conscientious mourning. (shrink)

The emergency department (ED) is a fast-paced, highly stressful environment where clinicians function with little or suboptimal information and where time is measured in minutes and hours. In addition, death and dying are phenomena that are often experienced in the ED. Current end-of-life care models, based on chronic illness trajectories, may be difficult to apply in the ED. A philosophical approach examining end-of-life care may help us understand how core medical and nursing values are embodied as care practices (...) and as ethical comportment. The integration of Aristotle's notions of phronesis and praxis with Merleau-Ponty's ontological notions of intentional arc and maximum grip in the context of the culture and practices of the ED offers a unique view of clinical and ethical practice at the end-of-life in the emergency setting. Caring for people at the end-of-life calls us to act virtuously based on previous experience, meanings and local practices. The maximum grip of the ultimate particulars of the situation combined with one's experiential and theoretical knowledge opens up situated possibilities for the expert clinician. (shrink)

In this provocative book, a professor of philosophy examines the arguments for and against euthanasia, analyzes specific case studies, including those of Baby Jane Doe and Barney Clark, and offers an alternate theory on the morality of euthanasia. Various traditional distinctions--between "human" and "non-human," intentional and nonintentional, killing and "letting die"--are taken into account to determine whether euthanasia is permissible or not. Rachels presents a systematic argument against the traditional view, defending an alternative position based on the belief that there (...) is a profound difference between having a life and merely being alive. (shrink)

Rid and Wendler propose the development of a Patient Preference Predictor (PPP), an actuarial model for predicting incapacitated patient’s life-sustaining treatment preferences across a wide range of end-of-life scenarios. An actuarial approach to end-of-life decision making has enormous potential, but transferring the logic of actuarial prediction to end-of-life decision making raises several conceptual complexities and logistical problems that need further consideration. Actuarial models have proven effective in targeted prediction tasks, but no evidence supports their effectiveness in (...) the kind of broad spectrum prediction task that is the proposed goal of the PPP. We argue that a more focused approach, targeting specific medical conditions and generating treatment predictions based on the preferences of individuals with actual disease experience, is both more firmly grounded in past research and is a more prudent initial strategy for exploring the efficacy of actuarial prediction in end-of-life decision making. (shrink)

As is evident from the other articles in this special issue, end-of-life treatment has engendered a vigorous dialogue in the United States over the past few decades because decision making at the end of life raises broad and difficult ethical issues that touch on health professionals, patients, and their families. This concern is exacerbated by the high cost related to the end of life in the U.S. Moreover, in light of demographic patterns, progressively scarce health care resources, (...) and an expanding array of life-saving technologies, decisions at the end of life are becoming problematic matters of public and, thus, scholarly concern in most countries. Issues at the end of life are central not only to bioethics but also raise important ancillary policy dimensions. (shrink)

The Liverpool Care Pathway for the Dying has recently been the topic of substantial media interest and also been subject to the independent Neuberger Review. This review has identified clear failings in some areas of care and recommended the Liverpool Care Pathway be phased out. I argue that while the evidence gathered of poor incidences of practice by the Review is of genuine concern for end of life care, the inferences drawn from this evidence are inconsistent with the causes (...) for the concern. Seeking to end an approach that is widely seen as best practice and which can genuinely deliver high quality care because of negative impressions that have been formed from failing to implement it properly is not a good basis for radically overhauling our approach to end of life care. I conclude that improvements in training, communication, and ethical decision-making, without the added demand to end the Liverpool Care Pathway would have resulted in a genuine advance in end of life care. (shrink)

In a recent article,1Riisfeldt attempts to show that the principle of double effect (PDE) is unsound as an ethical principle and problematic in its application to palliative opioid and sedative use in end-of-life care. Specifically, he claims that (1) routine, non-lethal opioid and sedative administration may be “intrinsically bad” by PDE’s standards, (2) continuous deep palliative sedation (or “terminal sedation”) should be treated as a bad effect akin to death for purposes of PDE, (3) PDE cannot coherently be applied (...) in cases where death “indirectly” furthers an agent’s intended end of pain relief via medically appropriate palliative care, and (4) application of PDE requires sacrificing common beliefs about the sanctity of human life. I respond by showing that Riisfeldt’s understanding of PDE is seriously mistaken: he misattributes Kantian and Millian reasoning to the principle and conflates acts’ intrinsic properties with their effects. Further, a corrected understanding of PDE can address Riisfeldt’s case-specific objections. (shrink)

Since Oregon implemented its Death with Dignity Act, many additional states have followed suit demonstrating a growing understanding and acceptance of aid in dying processes. Traditionally, the patient has been the one to request and seek this option out. However, as Death with Dignity acts continue to expand, it will impact the role of physicians and bring up questions over whether physicians have the ethical obligation to facilitate a conversation about AID with patients during end of life discussions. Patients (...) have the right to make informed decisions about their health, which implies that physicians have an obligation to discuss with and inform patients of the options that will accomplish the patients’ goals of care. We will argue that physicians have an ethical obligation to inform certain patients about AID during end of life care discussions. We will also address what this obligation encompasses and explore guidelines of when and how these conversations should occur and proceed. Earlier guidelines, presented by various palliative care and ethics experts, for proceeding with such conversations have mostly agreed that the discussion of hospice and end of life care with patients should be initiated early and that the individual goals of a patient during the remaining duration of life should be thoroughly examined before discussion of appropriate options. In discussing AID, physicians should never recommend but inform patients about the basics so that they can make an informed decision. If patients express further interest in AID, the physician should open up the dialogue to address the reasoning behind this decision versus other possible treatments to ensure that patients clearly comprehend the process and implications of their decision. Ultimately, any end of life choice should be made by patients with the full capacity to express what they envision for the remaining duration of life and to comprehend the advantages and disadvantages of all the possible options. (shrink)

There has been much debate regarding the 'double-effect' of sedatives and analgesics administered at the end-of-life, and the possibility that health professionals using these drugs are performing 'slow euthanasia.' On the one hand analgesics and sedatives can do much to relieve suffering in the terminally ill. On the other hand, they can hasten death. According to a standard view, the administration of analgesics and sedatives amounts to euthanasia when the drugs are given with an intention to hasten death. In (...) this paper we report a small qualitative study based on interviews with 8 Australian general physicians regarding their understanding of intention in the context of questions about voluntary euthanasia, assisted suicide and particularly the use of analgesic and sedative infusions (including the possibility of voluntary or non-voluntary 'slow euthanasia'). We found a striking ambiguity and uncertainty regarding intentions amongst doctors interviewed. Some were explicit in describing a 'grey' area between palliation and euthanasia, or a continuum between the two. Not one of the respondents was consistent in distinguishing between a foreseen death and an intended death. A major theme was that 'slow euthanasia' may be more psychologically acceptable to doctors than active voluntary euthanasia by bolus injection, partly because the former would usually only result in a small loss of 'time' for patients already very close to death, but also because of the desirable ambiguities surrounding causation and intention when an infusion of analgesics and sedatives is used. The empirical and philosophical implications of these findings are discussed. (shrink)

Those involved in end-of-life decision making must take into account both legal and ethical issues. This book starts with a critical reflection of ethical principles including ideas such as moral status, the value of life, acts and omissions, harm, autonomy, dignity and paternalism. It then explores the practical difficulties of regulating end-of-life decisions, focusing on patients, healthcare professionals, the wider community and issues surrounding 'slippery slope' arguments. By evaluating the available empirical evidence, the author identifies preferred ways (...) to regulate decisions and minimise abuses at the end of life, and outlines an ethical theory which can provide practical guidance for those engaged in end-of-life decisions"--Provided by publisher. (shrink)

End-of-life care is the only major reference to systematically explore the unique medical, social, legal, political, and ethical issues to consider while providing care to adults and children with intellectual and developmental disabilities who are facing terminal illness or life-limiting conditions.

This study investigated Finnish nurses’ experiences and views on end-of-life decision making and compared them with physicians’ views. For this purpose, a questionnaire was sent to 800 nurses, of which 51% responded. Most of the nurses had a positive attitude towards and respect for living wills, more often than physicians. Most also believed that a will had an effect on decision making. Almost all of the nurses considered it their responsibility to talk to physicians about respecting living wills. Do-not-resuscitate (...) (DNR) orders were often interpreted to imply partial or complete palliative (symptom-orientated) care, which may cause confusion. Half of the nurses reported that a DNR decision was discussed always or often with a patient who was able to communicate; physicians were more positive in this respect. Surprisingly, many nurses (44%) stated that active treatment continued too long. Two-thirds thought that their opinions were taken into account sufficiently, even though only half believed that, in general, they had some impact. (shrink)

Objectives: The objective of this study is to estimate the proportion of different types of end‐of‐life decisions (ELDs) of physicians in the city of Hasselt (Flanders, Belgium). The question is addressed to what degree these ELD meet legal constraints and the ethical requirements for prudent practice. Methodology: All physicians of the city of Hasselt who signed at least one death certificate in 1996 (N=166) received an anonymous self‐administered mail questionnaire per death case (max. 5/doctor) Results: the response rate was (...) 55% (N=269). In 37.3% of all cases at least one ELD was made (16.5% non‐treatment decisions; 16% potential life‐shortening by intensifying the treatment of pain and symptoms; 4.8% administration, supply or prescription of lethal drugs). In 59.5% of the cases were an ELD was made that decision was legally questionable. Patient characteristics were clearly related to the type of ELD. There was no influence of physician characteristics, except for commitment to life‐stance. In 71.3% of the cases the ELD was in no way discussed with the patient. 8.1% of the ELD‐cases were in response to a direct request from the patient Conclusions: The incidences of ELDs in Hasselt are consistent with earlier findings. The study shows that religious commitment influences the behaviour of physicians at the end of their patients' life. The patient's and her family's entitlements to participation in the decision making process were rather poorly respected. (shrink)

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded (...) as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context‐specific and culture‐specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end‐of‐life decision‐making. (shrink)

Background Nurses providing care to patients with end-of-life or terminal illnesses often encounter ethically challenging situations leading to moral distress. However, existing quantitative studies have examined moral distress using instruments that address general clinical situations rather than those specific to end-of-life care. Furthermore, qualitative studies have often been limited to participants from a single unit or those experiencing moral distress-induced circumstances. A comprehensive and integrated understanding of the overarching process of moral distress is vital to discern the unique (...) circumstances surrounding end-of-life care and its consequential impacts. Research objectives To explore the moral distress experiences of nurses who are frequently involved in caring for patients with end-of-life or terminal illnesses and apply it to two existing theories: the model of moral distress and the ecological model. Research design A qualitative descriptive approach was employed. Participants and research context Seven focus group interviews involving 30 nurses were performed. The subsequent transcriptions underwent rigorous content analysis. Ethical considerations We obtained Institutional Review Board approval from a university. Focus group interviews were conducted with nurses who agreed to participate and signed the consent form. Findings The moral distress-inducing factors and nurses’ perceived impact of moral distress were identified and categorized based on moral distress theories and ecological models. A total of 15 categories and 30 subcategories across the following 4 domains were derived: (1) intrapersonal, (2) interpersonal, (3) organizational, and (4) structural factors. Conclusions End-of-life-specific circumstances induced moral distress among nurses, with both negative and positive impacts identified. Effective organizational and policy support is essential to manage conflicts, form a healthy organizational culture, provide training, and prevent unnecessary expenses due to the negative consequences of moral distress. (shrink)

Objectives: To discover the current state of opinion and practice among doctors in Victoria, Australia, regarding end-of-life decisions and the legalisation of voluntary euthanasia. Longitudinal comparison with similar 1987 and 1993 studies.Design and participants: Cross-sectional postal survey of doctors in Victoria.Results: 53% of doctors in Victoria support the legalisation of voluntary euthanasia. Of doctors who have experienced requests from patients to hasten death, 35% have administered drugs with the intention of hastening death. There is substantial disagreement among doctors concerning (...) the definition of euthanasia.Conclusions: Disagreement among doctors concerning the meaning of the term euthanasia may contribute to misunderstanding in the debate over voluntary euthanasia. Among doctors in Victoria, support for the legalisation of voluntary euthanasia appears to have weakened slightly over the past 17 years. Opinion on this issue is sharply polarised. (shrink)

Background: The intensive care unit environment focuses on interventions and support therapies that prolong life. The exercise by nurses of their autonomy impacts on perception of the role they assume in the multidisciplinary team and on their function in the intensive care unit context. There is much international research relating to nurses’ involvement in end-of-life situations; however, there is a paucity of research in this area in Brazil. In the Brazilian medical scenario, life support limitation generated a (...) certain reluctance of a legal nature, which has now become unjustifiable with the publication of a resolution by the Federal Medical Council. In Brazil, the lack of medical commitments to end-of-life care is evident. Objective: To understand the process by which nurses exercise autonomy in making end-of-life decisions in intensive care units. Research design: Symbolic Interactionism and Corbin and Strauss theory methodology were used for this study. Participants and research context: Data were collected through single audio-recorded qualitative interviews with 14 critical care nurses. The comparative analysis of the data has permitted the understanding of the meaning of nurse’s experience in exercising autonomy relating to end-of-life decision-making. Ethical considerations: Institutional ethics approval was obtained for data collection. Participants gave informed consent. All data were anonymized. Findings: The results revealed that nurses experience the need to exercise autonomy in intensive care units on a daily basis. Their experience expressed by the process of increase opportunities to exercise autonomy is conditioned by the pressure of the intensive care unit environment, in which nurses can grow, feel empowered, and exercise their autonomy or else can continuously depend on the decisions made by other professionals. Conclusion: Nurses exercise their autonomy through care. They work to create new spaces at the same time that they acquire new knowledge and make decisions. Because of the complexity of the end-of-life situation, nurses must adopt a proactive attitude that inserts them into the decision-making process. (shrink)

Healthcare professionals working in intensive care units are often involved in end-of-life decision-making. No research has been done so far about these processes taking place in Croatian ICUs. The aim of this study was to investigate the perceptions, experiences, and challenges healthcare professionals face when dealing with end-of-life decisions in ICUs in Croatia. A qualitative study was performed using professionally homogenous focus groups of ICU nurses and physicians of diverse professional and clinical backgrounds at three research sites. In (...) total, six institutions at the tertiary level of healthcare were included. The constant comparative analysis method was used in the analysis of the data. Differences were found between the perceptions and experiences of nurses and physicians in relation to end-of-life decisions. Nurses’ perceptions were more focused on the context and features of immediate care, while physicians’ perceptions also included the wider sociocultural context. However, the critical issues these specific professional groups face when dealing with end-of-life decisions seem to overlap. A high variability of practices, both between individual practitioners and between different organizational units, was omnipresent. The lack of adequate legal, professional, and clinical guidelines was commonly expressed as one of the most critical source of difficulties. (shrink)

Background: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses’ attitudes and involvement in end-of-life decisions are available. Research question/aim: To investigate neonatal nurses’ attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. Research design: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. Participants and (...) research context: The questionnaire was answered anonymously by 312 nurses (response rate, 71.1%) and returned to the investigators. Ethical considerations: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. Findings: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses’ religiousness ( p = 0.097), parenthood ( p = 0.093), involvement in daily practice ( p = 0.03), and position on the existing legal framework ( p < 0.002) influenced their attitude score. Discussion: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses’ attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. Conclusion: Variability in involvement in end-of-life decisions among nurses exists on a national level. (shrink)

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of (...) this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia. (shrink)

Nowadays it is increasingly common that the patients in the end of life phase choose to be cared for in their own home. Therefore it is vital to identify significant factors in order to prevent unnecessary suffering for dying patients and their families in end-of-life homecare. This study aimed to describe 10 nurses’ perceptions of significant factors that contribute to good end-of-life care in the patients own home. The transcribed texts from the interviews’ were analyzed using phenomenological (...) hermeneutical method, which focuses on the life-world of human beings. The results demonstrate that good end-of-life care presupposes that the aim of the caring staff is to provide safety, autonomy and integrity for the patient and family in order to create the respect required for as good and dignified a death as possible. (shrink)

The doctrine of double effect has a firm, respected position within Roman Catholic medical ethics. In addition, public debate often incorporates this doctrine when determining the acceptability of certain actions. This essay examines and assesses the application of this doctrine to end-of-life decisions. National Catholic Bioethics Quarterly 11.1 (Spring 2011): 99–119.

End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family’s position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult (...) decision-making processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient. (shrink)

Norwegian health professionals, elderly people and family members experience ethical problems involving end-of-life decision making for elders in the context of the values of Norwegian society. This study used ethical inquiry and qualitative methodology to conduct and analyze interviews carried out with 25 health professionals, six elderly people and five family members about the ethical problems they encountered in end-of-life decision making in Norway. All three participant groups experienced ethical problems involving the adequacy of health care for elderly (...) Norwegians. Older people were concerned about being a burden to their families at the end of their life. However, health professionals wished to protect families from the burden of difficult decisions regarding health care for elderly parents at the end of life. Strategies are suggested for dialogue about end-of-life decisions and the integration of palliative care approaches into health care services for frail elderly people. (shrink)

Background: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. Objective: To describe assistant nurses’ perspectives of providing care to older persons at the end of life in a nursing home. Research design: Data were (...) collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. Participants and research context: Seven assistant nurses from a nursing home in Sweden were randomly selected. Ethical consideration: The research was approved by the local ethics committee. Results: Three main categories emerged; “Death a natural part of life”; “The older person’s well-being”; and “Care in the moment of death”; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons’ dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. Discussion: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. Conclusion: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development. (shrink)

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning (...) children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families. (shrink)

The use of Nasogastric (NG) feeding in the provision of artificial nutrition and hydration at the end of life has, for the most part, been regarded as futile by the medical community. This position has been led chiefly by prevailing medical data. In Singapore, however, there has been an increase in its utilization supported primarily by social, religious and cultural factors expressly to prolong life of the terminally ill patient. Here this article will seek to review the ethical (...) and clinical impact of this treatment and provide some understanding for such decisions in the light of the Duty of Palliative Care [DoPC]. Complemented by virtue ethics theory, the DoPC highlights and seeks to realize the individual case specific goals of care that maximize comfort and quality of life of the patient in the face of rapid attenuation of treatment options and the eminence of the final outcome by considering each of these factors individually in order to provide the best outcome for the patient and the family. (shrink)

The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right (...) of free choice entail allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (shrink)

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. (shrink)

Early in 1970, just as we were organizing The Hastings Center, we had to decide which issues on a long menu of possibilities should receive our early attention. At the top of our list was end-of-life care. Complaints about care for the dying had mounted during the 1960s, fueled by technological progress in sustaining life, by too many patients abandoned by physicians as they lay dying, by a lack of patient choice on how their lives should end, and (...) by woefully inadequate pain management. After a few years of study, the care of the dying seemed to admit of a solution: giving patients more choice by the use of living wills or appointment of a surrogate, improving the training of physicians to better deal with death and discussion with patients, and creating a hospice movement and greatly enhanced palliative care. (shrink)

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. (shrink)

Every one of us will die, and the processes we go through will be our own - unique to our own experiences and life stories. End-of-Life Care and Pragmatic Decision Making provides a pragmatic philosophical framework based on a radically empirical attitude toward life and death. D. Micah Hester takes seriously the complexities of experiences and argues that when making end-of-life decisions, healthcare providers ought to pay close attention to the narratives of patients and the communities (...) they inhabit so that their dying processes embody their life stories. He discusses three types of end-of-life patient populations - adults with decision-making capacity, adults without capacity, and children - to show the implications of pragmatic empiricism and the scope of decision making at the end of life for different types of patients. (shrink)

There has been increasing awareness of the medical and moral challenges in the care of unrepresented patients: those who cannot make their own medical decisions, do not have any surrogate decision maker, and have not indicated their treatment preferences. Most discussions have focused on procedural questions such as who should make decisions for these patients. An issue that has not gotten enough attention is the ethical standard that should govern medical decision making. I explore the question of which ethical standard (...) provides better justification for end-of-life decisions for unrepresented patients. Two options are considered: the conventional and less demanding best interest standard, and the novel and more demanding medical futility standard. I explain the similarities and differences between these two standards, examine arguments for and against each one, and suggest that the medical futility standard is ethically superior and should replace the established best interest standard. (shrink)

In the end‐of‐life context, alleviation of the suffering of a distressed patient is usually seen as a, if not the, central goal for the medical personnel treating her. Yet it has also been argued that suffering should be seen as a part of good dying. More precisely, it has been maintained that alleviating a dying patient’s suffering can make her unable to take care of practical end‐of‐life matters, deprive her of an opportunity to ask questions about and find (...) meaning in and for her existence, and detach her from reality. In this article, I argue that the aims referred to either do not support suffering or are better served by alleviating it. When the aims would be equally well served by enduring suffering and relieving it, the latter appears to be the preferable option, given that the distress a patient experiences has no positive intrinsic value. Indeed, as the suffering can be very distressing, it may not be worth bearing even if that was the best way to achieve the aims: the distress can sometimes be bad enough to outbalance the worth of achieving the goals. Having considered an objection to the effect that a patient can have a self‐regarding moral duty to endure the distress she faces at the end of life, I conclude that the burden of proof is on the side of those who maintain that the suffering experienced at the end of life ought to be endured as a part of dying well. (shrink)

Background Italy was the first European country to be involved with the COVID-19 pandemic. As a result, many healthcare professionals were deployed and suddenly faced end-of-life care management and its challenges. Aims To understand the experiences of palliative care professionals deployed in supporting emergency and critical care staff during the COVID-19 first and second pandemic waves. Research design A qualitative descriptive design was adopted, and in-depth interviews were used to investigate and analyse participants’ perceptions and points of view. Participants (...) and research context Twenty-four healthcare professionals (physicians, nurses, psychologists, physiotherapists, and spiritual support) from the most affected areas of Italy were recruited via the Italian society of palliative care and researchers’ network. Ethical considerations The University Institutional Board granted ethical approval. Participants gave written informed consent and agreed to be video-recorded. Findings The overarching theme highlighted participants’ experience supporting health professionals to negotiate ethical complexity in end-of-life care. Crucial topics that emerged within themes were: training emergency department professionals on ethical dimensions of palliative and end-of-life care, preserving dying patients’ dignity and developing ethical competence in managing end-of-life care. Conclusions Our study showed palliative care teams’ challenges in supporting health professionals’ ethical awareness in emergencies. However, while they highlighted their concerns in dealing with the emergency staff’s lack of ethical perspectives, they also reported the positive impact of an ethically-informed palliative care approach. Lastly, this study illuminates how palliative care professionals’ clinical and ethical competence might have assisted a cultural change in caring for dying patients during COVID-19 and future emergencies. (shrink)

Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars' views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, and was analyzed through (...) deductive content analysis. Analysis revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient's autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients' care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God's will, boundaries of man's authority, and the physician's ethical duties and obligations should be developed. (shrink)

While legal rights to make medical treatment decisions at the end of one's life have been recognized by the courts, particular religious traditions put axiological and metaphysical meat on the bare bones of legal rights. Mere legal rights do not capture the full reality, meaning and importance of death. End-of-life decisions reflect not only the meaning we find in dying, but also the meaning we have found in living. The Christian religions bring particular understandings of the vision of (...) life as a gift from God, human responsibility for stewardship of that life, the wholeness of the person, and the importance of the dying process in preparing spiritually for life beyond earthly life, to bear on end-of-life decisions. (shrink)

Objective To assess whether the frequency of end-of-life decisions for children under 1 year of age in the Netherlands has changed since ultrasound examination around 20 weeks of gestation became routine in 2007 and after a legal provision for deliberately ending the life of a newborn was set up that same year. Methodology This was a recurrent nationwide cross-sectional study in the Netherlands. In 2010, a sample of death certificates from children under 1 year of age was derived (...) from the central death registry. All 223 deaths that occurred in a 4-month study period were included. Physicians who had reported a non-sudden death (n=206) were sent a questionnaire on the end-of-life decisions made. 160 questionnaires were returned (response 78%). Findings In 2010, 63% of all deaths of children under 1 year of age were preceded by an end-of-life decision—a percentage comparable to other times when this study was conducted (1995, 2001, 2005). These end-of-life decisions were mainly decisions to withdraw or withhold potentially life-sustaining treatment. In 2010, the percentage of cases in which drugs were administered with the explicit intention to hasten death was 1%, while in 1995 and 2001, this was 9% and in 2005, this was 8%. Discussion and conclusion There has been a reduction of infant deaths that followed administration of drugs with the explicit intention to hasten death. One explanation for this reduction relates to the introduction of routine ultrasound examination around 20 weeks of gestation. In addition, the introduction of legal criteria and a review process for deliberately ending the life of a newborn may have left Dutch physicians with less room to hasten death. (shrink)

This case study is a retrospection of my family’s experiences that highlight several ELE facets. Following a description, we attempt to explain some of these phenomena from the perspectives of science and other germane disciplines.

Background: Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. Objectives and Methods: This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate (...) decision-making research. Findings: Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves. Discussion: Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Conclusion: Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences. (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.