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 We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.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)

The aim of this study was to assess attitudes of intensive care nurses to selected ethical issues related to end-of-life decisions in paediatric intensive care units. A self-administered questionnaire was distributed in 2005 to intensive care nurses at two different scientific occasions in Turkey. Of the 155 intensive care nurse participants, 98% were women. Fifty-three percent of these had intensive care experience of more than four years. Most of the nurses failed to agree about withholding (65%) or withdrawing (60%) (...) futile treatment. In addition, 68% agreed that intravenous nutrition must continue at all costs. In futile treatment cases, the nurses tended to leave the decision to parents or act maternalistically. The results showed that intensive care nurses could ignore essential ethical duties in end-of-life care. We suggest that it is necessary to educate Turkish intensive care nurses about ethical issues at the end of life. (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)

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)

French end-of-life law aims at protecting patients from unreasonable treatments, but has been used to force caregivers to prolong treatments deemed unreasonable. We describe six cases (five intensi...

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)

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)

Objective—To determine the objectivity, consistency and professional unanimity in the initiation, continuation and withdrawal of life-prolonging procedures in intensive care–to determine methods, time-scale for withdrawal and communication with both staff and relatives–to explore any professional unease about legality, morality or professional defensibility.Design—A structured questionnaire directed at clinical nurse managers for intensive care.Setting—All intensive care units in the Yorkshire region.Results—The survey reported a lack of consistency and objectivity in decision making in this area, with accompanying unease amongst staff.Conclusions—There is a (...) need to work towards more consistent care, both before and during admission, for the protection of the individual patient and to allow rational assessment of intensive care need. Comprehensive audit should lead to objective defensible decisions and facilitate informed choice. More open debate and better communication should minimise this issue as a source of stress amongst staff in intensive care. (shrink)

This article will explore some previously unrecognised legal and ethical issues associated with informal care-giving and criminal justice in the context of end of life decision-making. It was prompted by a recent case in Leeds Crown Court, which raises important issues for the people who care for their loved ones at home and for the criminal justice system more generally. Government figures estimate that over 5.2 million Britons are responsible for the care of relatives or loved ones. In order (...) to evaluate some of the ways in which they might find themselves exposed to unexpected criminal liability we have characterised this group as untrained carers who assume responsibility. (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)

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)

Even more so than in other areas of medicine, issues at the end of life elucidate the importance of religion and culture, as well as the role of the family and other social structures, in how these issues are framed. This article presents an overview of the variation in end-of-life treatment issues across 12 highly disparate countries. It finds that many assumptions held in the western bioethics literature are not easily transferred to other cultural settings.

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)

End-of-life care became an important issue in the late 1960s and early 1970s. It was in great part driven by complaints about the care of the dying: lack of patient autonomy, indifferent or insensitive physicians, and inadequate pain control. The main task of those who worked to improve the situation centered on changing each of those variables, assuming that would do the job. But it has worked to a moderate extent only and the problem is not fully solved. The (...) main omission has been a failure to confront the medical enterprise itself, which believes in endless progress and conducts a war against death. Only a change in those underlying values can bring about further significant change. (shrink)

In a recent article, 1 Riisfeldt attempts to show that the principle of double effect 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 routine, non-lethal opioid and sedative administration may be “intrinsically bad” by PDE’s standards, continuous deep palliative sedation should be treated as a bad effect akin to death for purposes of PDE, 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 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)

Objectives: To analyse the decision making for end of life care for patients with cancer at a teaching hospital in Japan at two periods 10 years apart.Design and setting: Retrospective study conducted in a 550 bed community teaching hospital in Okinawa, Japan.Patients: There were 124 terminally ill cancer patients admitted either in 1989 and 1999 for end of life care with sufficient data to permit analysis.Main measurements: Basic demographic data, notification to the patient that he or she had (...) cancer, patient involvement in do not resuscitate orders, and various medical interventions which were performed in the month prior to the patient’s death were evaluated.Results: In 1989 none of the patients were notified of their diagnosis; in 1999 five patients were informed . Of the 113 patients with a written DNR order, none were involved in consenting to the DNR order. In the month before death, patients in both groups received non-palliative treatments such as feeding tube placements , total parenteral nutrition , and intravenous albumin infusion . Morphine use increased significantly in 1999 compared with the 1989 group.Conclusions: The majority of patients dying of cancer were still not informed of their diagnosis and were seldom involved in DNR decision making at a teaching hospital in Japan. There was no change in the number of potentially futile interventions that were performed but morphine use increased. Modern ethical education is urgently needed in Japanese medical practice to improve decision making process in the end of life care. (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)

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)

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.

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)

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)

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)

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)

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.

The increasing life expectancy of terminally-ill people has raised many public policy concerns about end-of-life care. Due to increased longevity and the lack of cures for illnesses like cancer and heart disease, palliative care, particularly pain management, has become an important mode OF medical therapy. Palliative care providers feel that “[h]ealth care professionals have a moral duty to provide adequate palliative care and pain relief, even if such care shortens the patient’s life.” Practitioners of forensic medicine grapple (...) with determining when to classify the death of a person formerly receiving palliative care as a non-natural death. Such classification may be paramount in the enforcement of new statutes that aim at preventing assisted suicide or monitoring the quality of health care, but it potentially places forensic medicine and palliative medicine in adversarial roles. (shrink)

Caring for seriously ill patients and their families during times of extreme stress is a privilege, but it can also bring much sadness and ethical turmoil for everyone involved, particularly at end of life. Patients and their families and the nurses and physicians who care for them are uniquely bonded together as they discuss, discern, and deliberate on some of the most heart-wrenching life and death decisions any patient, parent, family member, or partner can make. Shifting from a (...) curative mode of thinking is never easy, simple, or clear-cut. All of us share hopeful moments with our patients when we see, for example, an unexpected limb movement, a period of lucidity, or short-term physiological stability in... (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)

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)

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 patientConclusions: 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)

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)

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)

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)

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)

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 decisions concerning euthanasia, stopping life-support machines, or handling advance directives are very complex and highly disputed in industrialized, democratic countries. A main controversy is how to balance the patient’s autonomy and right to self-determination with the doctor’s duty to save life and the value of life as such. These EoL dilemmas are closely linked to legal, medical, religious, and bioethical discourses. In this paper, we examine and deconstruct these linkages in Germany and Israel, moving beyond (...) one-dimensional constructions of ethical statements as “social facts” to their conflicting and multifaceted embedding within professional, religious, and cultural perspectives. (shrink)

This study examines the impact of the level of religious observance on the attitudes toward end‐of‐life (EOL) decisions and euthanasia of Jews in Israel—where euthanasia is illegal—as compared to Jews living in the USA, in the states where euthanasia is legal. A self‐reporting questionnaire on religiosity and personal beliefs and attitudes regarding EOL care and euthanasia was distributed, using a convenience sample of 271 participants from Israel and the USA. Findings show that significant differences were found in attitudes between (...) Jews of different levels of religious observance with respect to patient autonomy, right to die with dignity, and dying in familiar and supportive surroundings. The USA and Israeli Jews have similar knowledge regarding EOL care and expressed similar attitudes and perceptions toward the issues of authority of medical staff and religious figures and patient's autonomy. Findings indicate that the level of religious observance has more potency in shaping their attitudes and perceptions of EOL decisions than the state law. We conclude by discussing the implications of our findings with regard to multicultural health systems and providing practical recommendations. (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)

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical challenges faced by HCPs in (...) these circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (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)

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)

In this paper, we consider three arguments for the irrelevance of the doctrine of double effect in end-of-life decision making. The third argument is our own and, to that extent, we seek to defend it. The first argument is that end-of-life decisions do not in fact shorten lives and that therefore there is no need for the doctrine in justification of these decisions. We reject this argument; some end-of-life decisions clearly shorten lives. The second is that the (...) doctrine of double effect is not recognized in UK law ; therefore, clinicians cannot use it as the basis for justification of their decisions. Against this we suggest that while the doctrine might have dubious legal grounds, it could be of relevance in some ways, e.g. in marking the boundary between acceptable and unacceptable practice in relation to the clinician's duty to relieve pain and suffering. The third is that the doctrine is irrelevant because it requires there to be a bad effect that needs justification. This is not the case in end-of-life care for patients diagnosed as dying. Here, bringing about a satisfactory dying process for a patient is a good effect, not a bad one. What matters is that patients die without pain and suffering. This marks a crucial departure from the double-effect doctrine; if the patient's death is not a bad effect then the doctrine is clearly irrelevant. A diagnosis of dying allows clinicians to focus on good dying and not to worry about whether their intervention affects the time of death. For a patient diagnosed as dying, time of death is rarely important. In our conclusion we suggest that acceptance of our argument might be problematic for opponents of physician-assisted death. We suggest one way in which these opponents might argue for a distinction between such practice and palliative care; this relies on the double-effect doctrine's distinction between foresight and intention. (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)

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)

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)

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)

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)

This book is a compilation of the work published by the present authors in various scientific journals mainly focused on understanding how quantum physics could decipher the experiences observed and reported during near-death and end-of-life situations. The authors claim that various theories and models proposed herein (though not propounding to be a complete one) are just an attempt to understand few aspects associated with such experiences connected to the phenomenon of death. They investigate the possible role of the quantum (...) phenomenon in the occurrence of these events and call for a detailed scientific investigation to validate any hypotheses made. (shrink)