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

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

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

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

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as (...) a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

Continuous sedation until death is an increasingly common practice in end-of-life care. However, it raises numerous medical, ethical, emotional and legal concerns, such as the reducing or removing of consciousness, the withholding of artificial nutrition and hydration, the proportionality of the sedation to the symptoms, its adequacy in actually relieving symptoms rather than simply giving onlookers the impression that the patient is undergoing a painless 'natural' death, and the perception that it may be functionally equivalent to euthanasia. This book (...) brings together contributions from clinicians, ethicists, lawyers and social scientists, and discusses guidelines as well as clinical, emotional and legal aspects of the practice. The chapters shine a critical spotlight on areas of concern and on the validity of the justifications given for the practice, including in particular the doctrine of double effect. (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)

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)

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)

This title offers an ethical framework for end-of-life decision making in healthcare settings. Its objective is to foster and support ethically and legally sound clinical practice in end-of-life treatment and care in Ireland.

ABSTRACT Clear guidelines addressing the ethically appropriate use of anti‐infectives in the setting of hospice care do not exist. There is lack of understanding about key treatment decisions related to infection treatment for patients who are eligible for hospice care. Ethical concerns about anti‐infective use at the end of life include: (1) delaying transition to hospice, (2) prolonging a dying process, (3) prescribing regimens incongruent with a short life expectancy and goals of care, (4) increasing the reservoir of (...) potential resistant pathogens, (5) placing unreasonable costs on a capitated hospice system. Although anti‐infectives are thought to be relatively safe, they can place a burden on patients and be inconsistent to particular care plans. The current complex, and at times fragmented, medical care often fails to address these issues in decision‐making. In many ways, the ethics governing the end of life decisions related to dialysis, hydration/nutrition, and hypercalcemia parallel those of anti‐infectives. In this article we articulate important elements in ethical decision‐making in the application of anti‐infectives for patients who are eligible for hospice care, and we point to the need for prospective studies to help refine particular guidelines in these cases. (shrink)

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost (...) effectiveness and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (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)

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)

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

ABSTRACT This paper explores one of the most politically sensitive and intellectually neglected issues in bioethics – the interface between the history of contemporary end‐of‐life ethics and the economics of life and death. It suggests that contrary to general belief, economic impulses have increasingly become part of the conditions in which contemporary end‐of‐life ethics continues to evolve. Although this conclusion does not refute the philosophical justifications provided by the ethics for itself, it may cast (...) new light upon its social role. (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)

BackgroundCompetent end-of-life care is an essential component of total health care provision, but evidence suggests that it is often deficient. This study aimed to evaluate the knowledge and attitudes about key end-of-life issues and principles of good death among doctors in clinical settings.MethodsA cross-sectional study was conducted among allopathic medical doctors working in in-ward clinical settings of tertiary care hospitals in Sri Lanka using a self-administered questionnaire with open- and close-ended questions as well as hypothetical clinical scenarios. Univariate (...) and logistic regression analysis were used to identify the independent factors associated with knowledge and attitudes.ResultsOf the responders who had not been a caregiver for a terminally ill relative (n = 390), 57.9% were men with a mean age of 36.5 years (SD = 8.2). Compared to undergraduate (65.6%; n = 256), only 27.4% (n = 107) had received end-of-life care training at postgraduate level. Only 65.9% of doctors favoured disclosing terminal prognosis to patients; 27.7% of doctors were aware of advance directives; 14.6% were aware of the correct time of death when certifying brain death; 70.3% felt more comfortable in withholding than withdrawing life-sustaining treatment; 61.3% were aware of do-not-attempt cardiopulmonary resuscitation (DNACPR) decisions while 26.7% felt reluctant to administer it; 15.1% thought that all life-sustaining therapy should be withdrawn with a DNACPR decision; and only17.9% were able to name the four principles of medical ethics while 57.9% could not name a single. Participants scored a mean of 9.2 (SD = 3.9) of a maximum 14 points when tested on principles of a ‘good death’. Doctors who had pursued postgraduate studies were more likely to be aware of breaking bad news (adjusted-Odds-Ratio:1.99; 95%CI = 1.19–3.32), advance directives (adjusted-OR: 4.15; 95%CI = 2.49–6.94), aware of certifying the correct time of death (adjusted-OR:2.37; 95%CI = 1.33–4.2) and less reluctant to make DNACPR decisions (adjusted-OR:1.74; 95%CI = 1.13–2.68). Doctors who had worked in ICU were more comfortable withholding than withdrawing treatment (adjusted-OR:1.99; 95%CI = 1.2–3.31).ConclusionsKnowledge and attitudes about end-of-life care, good death and principles of medical ethics among doctors in Sri Lanka were suboptimal. Structured training of end-of-life care needs to be integrated within curricula and in-service training. (shrink)

Nurses are obliged to provide quality nursing care that meets the ethical standards of their profession. However, clear descriptions of ethical practice are largely missing in the literature. Qualitative research using a phenomenological approach was conducted to explicate ethical nursing practice in Japanese end-of-life care settings and to discover how ethical practices unfold in clinical situations. Two paradigm cases and contrasting narratives of memorable end-of-life care from 32 Japanese nurses were used to reveal four levels of ethical practice: (...) ethical, distressed, uncertain, and unethical. Having the ability to actualize, justify, and recognize what is the good and/or right differentiated between these levels of ethical practice, empirical descriptions of which are given, followed by discussion of how nurses gain the skilled knowledge necessary for ethical practice. (shrink)

Background The impact of healthcare ethics educational interventions on participants’ ethical development is rarely reported on and assessed; even less attention is paid to educational interventions that focus on end-of-life ethical issues. Aim To evaluate the impact of the Ethical Framework for End-of-Life Care Study Sessions Programme ( EOLCSS) on the moral development of healthcare staff who are delivering end-of-life care. Methods The EOLCSS was delivered to 20 multi-disciplinary health care staff in Ireland in May 2013. (...) Effect on moral reasoning was measured pre and post education using the Defining Issues Test 2 (DIT2). Inferential statistics were used to examine the relationships between change in DIT2 scores and demographic variables. Results Participants experienced moral reasoning development following receipt of EOLCSS. Age and previous ethics education contributed to the observed changes in moral reasoning. Conclusions Receipt of the EOLCSS may contribute to moral reasoning development in practicing healthcare professionals. (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)

Clinical trials are required in order to develop new treatments and improve both patient life expectancy and quality of life. In this respect the last 10 years proved their efficiency. However clinical research shows one of the most difficult dilemmas from an ethical point of view. Patients included in clinical trials are submitted to known and unknown risks and hazards, but rarely benefit from the results. This is even more evident when clinical trials use children who are terminally (...) ill. The core consideration becomes how far should we go with research when considering the child best interest. (shrink)

The paper presents an account of suffering as a multi-level phenomenon based on concepts such as mood, being-in-the-world and core life value. This phenomenological account will better allow us to evaluate the hardships associated with dying and thereby assist health care professionals in helping persons to die in the best possible manner. Suffering consists not only in physical pain but in being unable to do basic things that are considered to bestow meaning on one’s life. The suffering can (...) also be related to no longer being able to be the person one wants to be in the eyes of others, to losing one’s dignity and identity. These three types of suffering become articulated by a narrative that holds together and bestows meaning on the whole life and identity of the dying person. In the encounter with the patient, the health-care professional attempts to understand the suffering-experience of the patient in an empathic and dialogic manner, in addition to exploring what has gone wrong in the patient’s body. Matters of physician assisted suicide and/or euthanasia—if it should be legalized and if so under which conditions—need to be addressed by understanding the different levels of human suffering and its positive counterpart, human flourishing, rather than stressing the respect for patient autonomy and no-harm principles, only. In this phenomenological analysis the notions of vulnerability and togetherness, ultimately connecting to the political-philosophical issues of how we live together and take care of each other in a community, need to be scrutinized. (shrink)

Background In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient’s quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients’ and their relatives’ needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life. (...) Aim The aim of this study was to explore nurses’ experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care. Research design, participants, and research context The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis. Ethical considerations Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study. Findings A main theme and four subthemes emerged. The main theme was “Deep co-creative relationships are needed to manage ethical and existential issues at the end of life.” A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care. Discussion Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses’ ethical competence within this context. Conclusion The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients’ perspective. (shrink)

With a focus on end-of-life discussion in aging and chronically ill populations, this book offers insight into the skill of communicating in complex and emotionally charged discussions. This text is written for all clinicians and professionals in the fields of healthcare and public health who are faced with questions of ethical deliberation when a patient's illness turns from chronic to terminal. This skill is required to manage care well in an age of advanced technology, and numerous autonomous choices. With (...) a palliative care and ethics focus, the manuscript provides case studies illustrating issues which occur in the acuity and chronicity of end of life. Clear tools for clinicians, such as scripting and "the advance care planning video library" are included. The book focuses on the unique concept of outpatient ethics, including readmission prevention and shortened length of stay through good communication for clinicians who will be required to conduct this discussion with patients. The ethical undertone in this text provides a perfect opening for application in healthcare ethics classes, both in fields of public health and healthcare. Medical scholars and physicians, nurse practitioners and physician's assistants, as well as social workers, both in practice and training, will benefit from this text. (shrink)

On 19 June 2019, Victoria's 'Voluntary Assisted Dying' Act came into effect. The Act makes legal two interventions at the end of life. In most cases, it allows a doctor to prescribe a patient who meets certain criteria with a lethal substance, which it is supposed a patient will take at a time and place of their choosing to end their life. In rarer cases, where a patient is unable to ingest the lethal substance, it also allows for (...) a doctor to administer such a substance to the same end. In the Victorian legislation these interventions have been given the umbrella term of 'Voluntary Assisted Dying'. In Catholic ethics, as in most bioethical frameworks, these acts are referred to as physician-assisted suicide and euthanasia. (shrink)

Clear guidelines addressing the ethically appropriate use of anti-infectives in the setting of hospice care do not exist. There is lack of understanding about key treatment decisions related to infection treatment for patients who are eligible for hospice care. Ethical concerns about anti-infective use at the end of life include: (1) delaying transition to hospice, (2) prolonging a dying process, (3) prescribing regimens incongruent with a short life expectancy and goals of care, (4) increasing the reservoir of potential (...) resistant pathogens, (5) placing unreasonable costs on a capitated hospice system. Although anti-infectives are thought to be relatively safe, they can place a burden on patients and be inconsistent to particular care plans. The current complex, and at times fragmented, medical care often fails to address these issues in decision-making. In many ways, the ethics governing the end of life decisions related to dialysis, hydration/nutrition, and hypercalcemia parallel those of anti-infectives. In this article we articulate important elements in ethical decision-making in the application of anti-infectives for patients who are eligible for hospice care, and we point to the need for prospective studies to help refine particular guidelines in these cases. (shrink)

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

Human death is a mystery. Although scientists have identified the criteria, states, and signs of biological death, undoubtedly the issues of dying and death have a wider meaning. In this book, the authors present current research in the study of the ethical issues, practices and challenges of end-of-life care. Topics discussed include a spiritual perspective of end-of-life experiences; a veterinary oncologist's interprofessional crossover perspective of euthanasia for terminal patients; diabetes and end-of-life care; helping families to cope after (...) the death of a loved one; multidimensional aspects of nursing care for dying patients; spirituality at the end-of-life; challenges of promoting end-of-life care in residential care homes in Hong Kong; and the current situation and challenges of home end-of-life care for the elderly in Japan. (shrink)

Background: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have (...) been conducted to evaluate clinical ethics support services near the end of life. Methods: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241. Ethical Considerations: Ethical approval is not needed as it is a systematic review of published literature. Results: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results. Conclusion: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services. (shrink)

As readers of Theoretical Medicine and Bioethics undoubtedly know, edited books can be highly uneven in their quality, with some chapters excelling in content, depth, and readability while others languish in mediocrity. Volumes in an annually issued series run an even greater risk of suffering the plague of inferiority, especially after many years of fame and success. End-of-Life Ethics: A Case Study Approach clearly overcomes these maladies and provides readers with an excellent collection of well-written, thought-provoking essays.The Hospice (...) Foundation of America launched its annual bereavement teleconference two decades ago, publishing a book each year to accompany that educational event. Dubbed the “Living with Grief” series, every volume includes chapters written by a diversity of clinicians and scholars in the care of the dying and bereaved. The series has been unique in its approach to bridge scholarly understandings with practical clinical application.This volume takes a unique .. (shrink)

Objectives: To collect information on the involvement, legal understanding and ethical views of preregistration house officers regarding end-of-life decision making in clinical practice.Design: Structured telephone interviews.Participants: 104 PRHO who responded.Main outcome measures: Information on the frequency and quality of involvement of PRHO in end-of-life decision making, their legal understanding and ethical views on do-not-resuscitate order and withdrawal of treatment.Results: Most PRHO participated in team discussions on the withdrawal of treatment or a DNR order . Of them, 46 participants (...) had themselves discussed the DNR order with patients. In all, it was agreed by 84 respondents that it would be unethical to make a DNR order on any patient who is competent without consulting her or him. With one exception, it was indicated by the participants that patients who are competent may refuse tube feeding and 101 participants thought that patients may refuse intravenous nutrition. The withdrawal of artificial ventilation in incompetent patients with serious and permanent brain damage was considered to be morally appropriate by 95 and 97 thought so about the withdrawal of antibiotics. The withdrawal of intravenous hydration was considered by 67 to be morally appropriate in this case.Conclusions: PRHO are often involved with end-of-life decision making. The results on ethical and legal understanding about the limitations of treatment may be interpreted as a positive outcome of the extensive undergraduate teaching on this subject. Future empirical studies, by a qualitative method, may provide valuable information about the arguments underlying the ethical views of doctors on the limitations of different types of medical treatment. (shrink)

The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a disability perspective, and (c) (...) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals. (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)

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)

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)

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)

The 14 chapters in _Ethics at the End of Life: New Issues and Arguments_, all published here for the first time, focus on recent thinking in this important area, helping initiate issues and lines of argument that have not been explored previously. At the same time, a reader can use this volume to become oriented to the established questions and positions in end of life ethics, both because new questions are set in their context, and because most (...) of the chapters—written by a team of experts—survey the field as well as add to it. Each chapter includes initial summaries, final conclusions, and a Related Topics section. TABLE OF CONTENTS John K. Davis, "Introduction" Geoffrey Scarre, "Is it possible to be better off dead?" Taylor W. Cyr, "How Does Death Harm the Deceased?" Benjamin Mitchell-Yellin, "The Significance of an Afterlife" Jens Johansson, "The Severity of Death" John K. Davis, "Defining Death" James Stacey Taylor, "Autonomy, Competence, and End of Life" Eric Vogelstein, "Deciding for the Incompetent" Paul T. Menzel, "Change of Mind: An Issue for Advance Directives" Nancy S. Jecker, "Medical Futility and Respect for Patient Autonomy" Paul T. Menzel, "Refusing Lifesaving Medical Treatment and Food and Water by Mouth" Thomas S. Huddle, "Suicide, Physician-Assisted Suicide, the Doing-Allowing Distinction and Double Effect" Michael Cholbi, "Grief and End of Life Surrogate Decision-making" Bruce Jennings, "Solidarity near the End of Life: The Promise of Relational Decision-making in the Care of the Dying" Colin Farrelly, "Justice and the Aging of the Human Species". (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)

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...

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)

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)

This article will focus on issues concerning the provision of artificial nutrition and hydration to patients who are extremely old, completely bedridden, and totally dependent on others. These patients have no advance directives, no malignancy, suffer from persistent but unstable disturbance of consciousness as well as severe cognitive impairment, and cannot eat sufficient amounts of food to maintain their lives. Should ANH be provided? Some would agree while others would maintain otherwise. The underlying values and normative theory behind each argument (...) are quite different. In this paper, I will present opinions, comments, and arguments concerning the provision of PANH to such patients and examine each using the Takahashi‘s three levels structure analysis. Utilitarianism is a fitting ethical theory for the third level in arguments against the provision of PANH to patients in question, and the non-religious sanctity of life doctrine covers the opposite position. (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)

Background Bioethics and law distinguish between the practices of "physician-assisted death" and "allowing the patient to die." Discussion Advances 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. Summary Destination 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)