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 We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

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)

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)

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)

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)

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)

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)

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)

Existing regulation of end-of-life care is flawed. Problems include poorly-designed laws, policies, ethical codes, training, and funding programs, which often are neither effective nor helpful in guiding decision-making. This leads to adverse outcomes for patients, families, health professionals, and the health system as a whole. A key factor contributing to the harms of current regulation is a siloed approach to regulating end-of-life care. Existing approaches to regulation, and research into how that regulation could be improved, have tended to (...) focus on a single regulatory instrument (e.g., just law or just ethical codes). As a result, there has been a failure to capture holistically the various forces that guide end-of-life care. This article proposes a response to address this, identifying “regulatory space” theory as a candidate to provide the much-needed holistic insight into improving regulation of end-of-life care. The article concludes with practical implications of this approach for regulators and researchers. (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 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 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 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)

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)

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)

Most physicians confront the moral and technical challenges of treating persons who are coming to the natural end of their lives. At the level of the health system, this issue becomes a more pressing area for reform as premature death decreases and more people live a full life span. Well-developed countries and international organizations such as the World Health Organization and the Organisation of Economic Cooperation and Development have made recommendations for improving healthcare problems in aging societies. Turkey belongs (...) to the WHO and the OECD. This article describes end-of-life healthcare in Turkey, the design of the healthcare system to meet this need, challenges that should be addressed, and solutions that would be appropriate to Turkish culture and resources. (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)

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)

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)

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: 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)

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: 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)

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)

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)

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)

Health-care professionals in end-of-life care are frequently confronted with patients who seem to be ‘ambivalent’ about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers (...) need to understand when contradictory statements point to tensions in a patient’s moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements. (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)

a relatively more sympathetic attitude among younger judges, many of them women, and among trainees, may reflect a historical evoluti.

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)

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)

Bioethics, and indeed much ethicalwriting generally, makes its point throughnarratives. The religious parable no less thanthe medical teaching case uses a simple storyto describe appropriate action or theapplication of a critical principle. Whilepowerful, the telling story has limits. In thispaper the authors describe a simple teachingcase on ``end-of-life'' decision making that wasill received by its audience. The authors ill-receivedexample, involving the disconnection ofventilation in a patient with ALS (Lou Gherig'sDisease) was critiqued by audience members withlong-term experience as ventilation users. (...) Inthis case, the supposedly simple narrative ofthe presenters conflicted with the lifehistories of the audience. The lessons of thisstory, and the conflict that resulted, speakcritically to the limits of simple teachingcases as well as the strengths of narrativeanalysis as a tool for the exploration ofbioethical case histories. (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)

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.

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)

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)

Wojtasiewicz (2006) brings up an important topic in medical ethics: end-of-life care for the terminally ill. This issue came to the public eye most recently in the Terri Schiavo case. Wojtasiewicz...

This brief paper presents an Aristotelian-inspired approach to end-of-life decision making. The account focuses on the importance of teleology, in particular, the telos of eudaimonia understood as the goal of human flourishing as well as the telos of medicine when a person’s eudaimonia is threatened by serious illness and death. We argue that an Aristotelian bioethics offers a better alternative to a “fundamentalist bioethics” since the telos of eudaimonia offers a more realistic conception of the self and the realities (...) of frailty and mortality, provides a more objective basis for making decisions regarding end-of-life treatment and care, and is better able to resist the pull of the Technological Imperative. In addition, this teleological concept is flexible enough for it to be employed in multicultural and pluralistic societies. (shrink)

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)

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)

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)

In nearly all aspects of life, humans are crossing lines of no return. Modern science is leading us into vast uncharted territory—far beyond the invention of nuclear weapons or taking us to the moon.Today, in labs all over the world, scientists are performing experiments that threaten to fundamentally alter the practical character and ethical color of our everyday lives. In The End of Life as We Know It, bestselling author Michael Guillen takes a penetrating look at how the (...) scientific community is pushing the boundaries of morality, including: • Scientists who detached the head of a Russian man from his crippled, diseased body, and stitching it onto a healthy new donated body. • Fertility experiments aimed at allowing designer babies to be conceived with the DNA from three or more biological parents. • The unprecedented politicization of science – for example, in the global discussion about climate change that is pitting “deniers” against “alarmists” and inspiring Draconian legislation, censorship, and legal prosecutions. • The integration of Artificial Intelligence into communications and the economy. The End of Life as We Know It takes us into labratories and boardrooms where these troubling advances are taking place and asks the question no scientists seem to be asking: What does this mean for the future of humanity? (shrink)

BackgroundBioethics and law distinguish between the practices of "physician-assisted death" and "allowing the patient to die."DiscussionAdvances in biotechnology have allowed medical devices to be used as destination therapy that are designed for the permanent support of cardiac function and/or respiration after irreversible loss of these spontaneous vital functions. For permanent support of cardiac function, single ventricle or biventricular mechanical assist devices and total artificial hearts are implanted in the body. Mechanical ventilators extrinsic to the body are used for permanent support (...) of respiration. Clinical studies have shown that destination therapy with ventricular assist devices improves patient survival compared to medical management, but at the cost of a substantial alteration in end-of-life trajectories. The moral and legal assessment of the appropriateness and permissibility of complying with a patient's request to electively discontinue destination therapy in a life-terminating act in non-futile situations has generated controversy. Some argue that complying with this request is ethically justified because patients have the right to request withdrawal of unwanted treatment and be allowed to die of preexisting disease. Other commentators reject the argument that acceding to an elective request for death by discontinuing destination therapy is 'allowing a patient to die' because of serious flaws in interpreting the intention, causation, and moral responsibility of the ensuing death.SummaryDestination therapy with cardiac and/or ventilatory medical devices replaces native physiological functions and successfully treats a preexisting disease. We posit that discontinuing cardiac and/or ventilatory support at the request of a patient or surrogate can be viewed as allowing the patient to die if--and only if--concurrent lethal pathophysiological conditions are present that are unrelated to those functions already supported by medical devices in destination therapy. In all other cases, compliance with a patient's request constitutes physician-assisted death because of the pathophysiology induced by the turning off of these medical devices, as well as the intention, causation, and moral responsibility of the ensuing death. The distinction between allowing the patient to die and physician-assisted death is pivotal to the moral and legal status of elective requests for death by discontinuing destination cardiac and/or ventilatory medical devices in patients who are not imminently dying. This distinction also represents essential information that must be disclosed to patients and surrogates in advance of consent to this type of therapy. (shrink)

Voluntary active euthanasia and physician-assisted suicide remain technically illegal in the Netherlands, but the practices are openly tolerated provided that physicians adhere to carefully constructed guidelines. Harsh criticism of the Dutch practice by authors in the United States and Great Britain has made achieving a balanced understanding of its clinical, moral, and policy implications very difficult. Similar practice patterns probably exist in the United States, but they are conducted in secret because of a more uncertain legal and ethical climate. In (...) this manuscript, we plan to compare end-of-life care in the United States and the Netherlands with regard to underlying values, justifications, and practices. We will explore the risks and benefits of each system for a real patient who was faced with a common end-of-life clinical dilemma, and close with challenges for public policies in both countries. (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)

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)

A book for nurses, doctors and all who provide end of life care, this essential volume guides readers through the ethical complexities of such care, including current policy initiatives, and encourages debate and discussion on their controversial aspects. dived into two parts, it introduces and explains clinical decision making-processes about which there is broad consensus, in line with guidance documents issued by WHO, BMA, GMC, and similar bodies. The changing political and social context where 'patient choice' has become a (...) central idea, and the broadened scope of potients' best interests, have added to the complexity of decision-making in end of life care. The authors discuss issues widely encountered by GPs, nurses, and hospital clinicians. These include patient choice, consent, life-prolonging treatment, and symptom relief including sedation. Part rwo explores the more controversial current end of life care initiatives, such as advance care planning preferred place of care and death, euthanais and assited suicide, extended ideas of 'best interests', and the view that there are therapeutic duties to the relatives of Throughout their discussion the authors draw attention to loose ends and contradictions in some of the proposals. Examining the current policy of comsumerist choice, they reject its place in the health service, proposing a a realistic, fair, humane and widely adoptable system of end of life care. As knowledge of ethical theories is required in training courses, and the vocabulary of ethical theory is widespread in current discussions a substantial appendix on ethical theories and terms is available online. Written by the same authors as The Philosophy of Palliative Care: Critique and Reconstruction, which won the Medical Journalists' Association Specialits Book Award 2007, this new book for non-specialists is essential reading for all health care professionals involved in providing end of life care. (shrink)

Medical assistance in dying was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians’ willingness to provide MAiD and patients’ legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of this (...) paper was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians. (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)