The breaking of bad news in a hospital setting, particularly to patients in a terminal condition, highlights some complex and often emotive ethical issues for nurses. One theory that examines the way in which individuals react to bad news such as a terminal illness, is the theory of awareness contexts. However, this theory may be limited by failing to recognize the complexity of the situation and the ethical issues involved for nurses caring for terminally ill patients. Furthermore, contexts (...) of awareness are influenced to a much greater extent by relationships with nurses than simply by the delivery of medical information. Even when information is given to the client and the family, the nurse is involved in helping them to know the meaning of this information. In a hospital, the nurse is faced with emotional demands by clients, families and colleagues, complex issues of advocacy, and professional boundaries and responsibilities. It is the author’s wish to examine the reality of clinical practice for nurses, thus further extending the theory of awareness contexts. (shrink)

Truth-telling for terminally ill patients is a challenging ethical and social issue for Chinese health care professionals. However, despite the existence of ethical and moral standards for nurses, they frequently encounter moral dilemmas when making decisions about truth-telling to patients with end-stage diseases in China. This article aims to provide ethical strategies for clinical nurses in China regarding truth-telling decisions for terminally ill patients on the basis of their individual autonomy. This article first presents a common case scenario in (...) China and then critically discusses ethical issues related to ethical principles and philosophical theories. The aim is to provide the much needed strategy for truth-telling for nurses who are terminally ill rather than to focus on attitudes toward disclosure. This article focuses on nursing morality, ethics, norms, and philosophy in health care and discusses countermeasures taken by nurses in truth-telling decision-making in combination with Chinese Confucian culture. The analysis identifies key ethical strategies tailored to Chinese nurses’ practices, emphasizing individual autonomy, cultural sensitivity, and family dynamics in truth-telling decisions. The complexity of end-of-life illness requires Chinese nurses to strengthen the communication training needed to deliver bad news, as well as critical and autonomous thinking and good communication skills when implementing patient- and family-centered care, to achieve true delivery of bad news, thereby increasing patient autonomy and promoting more successful collaboration among patients, families, and providers. To improve the quality of care. Chinese nurses should integrate ethical principles with Confucian values to enhance patient-centered communication, respecting autonomy while adapting to cultural nuances in end-of-life care. (shrink)

A lot of medical procedures can be justified in terms of the number of quality-adjusted life-years (QALYs) they can be expected to generate; that is, the number of extra years that the procedure will provide, with the quality of life during those extra years factored in. QALYs are a crude tool, but good enough for many decisions. Notoriously, however, they cannot justify spending any money on terminal care (and indeed on older people in general). In this paper I (...) suggest a different way of construing ‘quality’ (as meaningfulness rather than physical comfort) and ‘life’ (as both backward-looking and forward-looking), so that the terminal patient's efforts to find meaning in his life could in principle generate plenty of ‘retrospective QALYs’ to justify funding. (shrink)

The nursing profession in Germany is facing a public debate on legal and ethical questions concerning euthanasia on request and physician-assisted suicide. However, it seems questionable if the profession itself, individual nurses or the professional associations are prepared to be involved in such a public debate. To understand this hesitation, the present situation is considered in the light of the tradition and history of professional care in Germany. Obedience to medical as well as to religious authorities was long part (...) of nurses' professional identity, but is no longer relevant. The lack of reflection and discussion on how to take a balanced view of ethical and political questions concerning nursing, and the role and responsibility of nurses in end-of-life decisions and situations of caring for dying people are discussed using the situation of nurses in the Netherlands as a comparison. (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)

Palliative care is a recent branch of health care. The doctors, nurses, and other professionals involved in it took their inspiration from the medieval idea of the hospice, but have now extended their expertise to every area of health care: surgeries, nursing homes, acute wards, and the community. This has happened during a period when patients wish to take more control over their own lives and deaths, resources have become scarce, and technology has created controversial life-prolonging treatments. (...) Palliative care is therefore faced with more ethical problems that other areas of health care. This book, by a clinician, teacher, and writer on health care ethics, has been written to provide all those who care for the terminally ill--doctors, nurses, social workers, clergymen, physiotherapists--with the concepts and principles which will assist them with difficult decisions. It challenges many received doctrines of palliative care, but its well-illustrated central theme is that technical expertise must be controlled by humane, non-technical judgments. (shrink)

This article deals with making decisions about starting terminal care. The results are part of a larger survey on nurses’ conceptions of terminal care in community health centres in Finland. The importance, frequency and timing of decision making as well as communication and the number of investigations and procedures carried out are examined. The relationship between decision making and the size of a health centre’s catchment population is also discussed. The results make it possible to compare (...) the current situation in Finland with the national law on patients’ rights. The sample consisted of 328 nurses who worked on the wards of 32 community health centres. The data were collected by means of a structured questionnaire and processed with the Statistical Package for Social Sciences software. The nurses agreed that explicit decision making and documentation about starting terminal care were necessary, but it was highlighted that the practice had many shortcomings. Decisions were often made too late and the patients were not always aware of their situation; family members and the nursing staff were mostly better informed. It was noted that many investigations and other procedures were carried out on terminally ill patients, often at the request of family members. Decision making was found to have some relationship to the size of a health centre’s catchment area. (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.

Objectives: Treatment decisions in ethically complex situations are known to depend on a physician's personal characteristics and medical experience. We sought to study variability in decisions to withdraw or withhold specific life-supporting treatments in terminal care and to evaluate the association between decisions and such background factors.Design: Readiness to withdraw or withhold treatment options was studied using a terminal cancer patient scenario with alternatives. Physicians were asked about their attitudes, life values, experience, and training; sociodemographic data were (...) also collected.Setting: Finnish physicians, postal survey.Survey sample: Five hundred general practitioners, 300 surgeons, 300 internists, and 82 oncologists.Results: Treatments most often forgone were blood transfusion and thrombosis prophylaxis . Least willingly abandoned were intravenous hydration and supplementary oxygen . Female doctors were less likely to discontinue thrombosis prophylaxis and supplementary oxygen , but more readily x ray and laboratory examinations. Young doctors were more likely to continue antibiotics , thrombosis prophylaxis , supplementary oxygen and laboratory tests . Oncologists comprised the specialty most ready to forgo all studied treatments except antibiotics and blood transfusion. The family's wishes significantly increased treatment activity. Young and female practitioners and oncologists were most influenced by family appeal. Advance directives made decisions significantly more reserved and uniform. Different factors in the physician's background were found to predict decisions to withdraw antibiotics or IV hydration.Conclusion: The considerable variation observed in doctors' decisions to forgo specific life-sustaining treatments was seen to depend on their personal background factors. Experience, supervision, and postgraduate education seemed to be associated with more reserved treatment decisions. To increase the objectivity of end of life decisions, training, and research are of prime significance in this ethically complex area of medicine. (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)

Essays examine various sides of medical ethics issues such as euthanasia, organ transplants, and living wills.

This article applies the anthropological concept of liminality to reconceptualize palliative care ethics. Liminality possesses both spatial and temporal dimensions. Both these aspects are analyzed to provide insight into the intersubjective relationship between patient and caregiver in the context of palliative care. Aristotelian practical wisdom, or phronesis, is considered to be the appropriate model for palliative care ethics, provided it is able to account for liminality. Moreover, this article argues for the importance of liminality for (...) providing an ethical structure that grounds the doctrine of double effect and overcomes the impasse of phronesis in the treatment of the terminally ill. (shrink)

Beginning with a focus on the ethical foundations of caregiving in health and expanding towards problems of ethics and justice implicated in a range of issues, this book develops and expands the notion of care itself and its connection to practice. Organised around the themes of culture as a restraint on caregiving in different social contexts and situations, innovative methods in healthcare, and the way in which culture works to position care as part of a rhetorical approach (...) to dependency, responsibility, and justice, The Ethics of Carepresents case studies examining institutional responses to end-of-life issues, the notion of informed consent, biomedicine, indigenous rights and postcolonialism in care and theoretical approaches to the concept of care. Offering discussions from a variety of disciplinary approaches, including sociology, communication, and social theory, as well as hermeneutics, phenomenology, and deconstruction, this book will appeal to scholars across the social sciences with interests in healthcare, medicine, justice and the question of how we think about care as a notion and social form, and how this is related to practice. (shrink)

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares (...) poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. (shrink)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated (...) the different needs of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients’ quality of death. (shrink)

Those are the words of Pope John Paul II, speaking in March 2004 to an international congress held in Rome. The conference was on "Life-sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas," and it was organized by the World Federation of Catholic Medical Associations and the Pontifical Academy for Life. The pope was able to cut through all the ethical dilemmas. Although he acknowledged that a patient in a persistent vegetative state, or PVS, "shows no evident sign of (...) selfawareness or of awareness of the environment, and seems unable to interact with others or to react to specific stimuli," he said that they should be kept alive indefinitely. Such patients, he insisted, "retain their human dignity in all its fullness" and "the loving gaze of God the Father continues to fall upon them." For this reason, he said, it is obligatory to continue to provide them with food and water, even if this can only be done through a tube. The pope added that to withdraw the tube, knowing that it will lead to the death of the patient, is "euthanasia by omission.". (shrink)

This article is based on the findings of a study that elicited the views of terminally ill patients ( n = 15), their carers ( n = 10) and bereaved carers ( n = 19) on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive (...) and negative aspects. Of concern was the reported lack of sensitivity to the role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field. (shrink)

Background There are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in Toronto, Ontario, Canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto Joint (...) Centre for Bioethics. The panel was asked the question, what do you think are the top ten ethical challenges that Canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the Delphi process and consensus was reached after three rounds. Discussion The top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions. The second highest ranked challenge was waiting lists. The third ranked challenge was access to needed resources for the aged, chronically ill, and mentally ill. Summary Although many of the challenges listed by the panel have received significant public attention, there has been very little attention paid to the top ranked challenge. We propose several steps that can be taken to help address this key challenge. (shrink)

"The cases are presented in a concise and interesting manner... highlights the emerging consciousness of the importance of the contractual arrangement between physician and patient... " --Journal of the American Medical Association "The cases presented are interesting ones, and the commentaries are uniformly lucid.... Highly recommended... " --Religious Studies Review "Cohen contributes a well-selected collection of cases and commentaries which are presented in a crisp style... it is likely to have a real impact." --Ethics Twenty-six reports based on actual (...) cases with expert commentary that illuminate the ethical, medical, legal, and psychological contours of dilemmas surrounding termination of treatment decisions. Cases involve patients, families, physicians, nurses, lawyers, and health care administrators. A companion volume to the Hastings Center's Guidelines. See Guidelines for ad quotes when advertising both books. (shrink)

Background Discussions on ethical aspects of life-and-death decisions within the hospital are often made in plenary. The prehospital physician, however, may be faced with ethical dilemmas in life-and-death decisions when time-critical decisions to initiate or refrain from resuscitative efforts need to be taken without the possibility to discuss matters with colleagues. Little is known whether these considerations regarding ethical issues in crucial life-and-death decisions are documented prehospitally. This is a review of the ethical considerations documented in the prehospital medical records (...) of patients in a Danish prehospital setting for whom the decision to resuscitate or not was made at the scene. Methods The study is based on discharge summaries of all patients subjected to crucial life-and-death decisions by the Mobile Emergency Care Unit in Odense in the years 2010 to 2014. The medical records with possible documentation of ethical issues were independently reviewed by two philosophers in order to identify explicit ethical or philosophical considerations pertaining to the decision to resuscitate or not. Results In total, 1275 patients were either declared dead at the scene without exhibiting layman’s reliable signs of death or admitted to hospital following resuscitation. In a total of 62 patients, 85 specific ethical issues related to resuscitation were documented. The expressions of the ethical considerations were generally vague or unclear and almost exclusively concerned the interests of the patient and not the relatives. In the vast majority of cases where an ethical content was identified, the ethical considerations led to a decision to terminate treatment. Conclusions A strengthened practice of documenting ethical considerations in prehospital life-and-death decision-making in the patient’s medical records is required. We suggest that a template be implemented in the prehospital medical records describing the basis for any ethical decisions. This template should contain information regarding the persons involved in the deliberations and notes on ethical considerations. The documentation should include considerations concerning the patient’s end-of-life wishes, the estimations of the quality of life before and after the incident, and a summary of other ethical concerns taken into account, such as the integrity of the patient and frame of mind of relatives. (shrink)

This article is an attempt by Japanese physicians to introduce the practice patterns and moral justification of Japanese critical care to the world. Japanese health care is characterized by the fact that the fee schedule does not reward high technology medicine, such as surgery and critical care. In spite of the low reimbursement, our critical care practice pattern is characterized by continuing futile treatment for terminal patients in the intensive care unit (ICU). This apparently (...) wasteful practice can be explained by fundamental Japanese cultural values, social factors in Japan, the availability of extensive insurance coverage, physicians' psychological factors, lack of cost-benefit considerations and the pragmatic approach the Japanese take to situations. We attempt to make some brief suggestions regarding the improvement of our critical care practices. Although we can not fully present quantitative data to support our argument, this article represents our real-world approaches to the ethical issues in the ICU in Japan. (shrink)

Hospice is the premiere end of life program in the United States, but its requirement that patients forgo disease-directed therapies and that they have a prognosis of 6 months or less means that it serves less than half of dying patients and often for very short periods of time. Palliative care offers careful attention to pain and symptom management, added support for patients and families, and assistance with difficult medical decision making alongside any and all desired medical treatments, but (...) it does not include a comprehensive system of care as is provided by hospice. The practice of palliative care and hospice is filled with sometimes overt (requests for hastened death in an environment where such acts are legally prohibited) and other times covert (the delay in palliative care referral because the health care team believes it will undermine disease directed treatment) ethical issues. The contributors to this volume use a series of case presentations within each chapter to illustrate some of the palliative care and hospice challenges with significant ethical dimensions across the three overarching domains: 1) care delivery systems; 2) addressing the many dimensions of suffering; and 3) difficult decisions near the end of life. The contributors are among the most experienced palliative care, hospice and ethics scholars in North America and Western Europe. Each has been given relatively free reign to address what they feel are the most pressing ethical challenges within their domain, so a wide range of positions and vantage points are represented. As a result, the volume provides a very diverse ethical exploration of this relatively young field that can deepen, stretch, and at times confront any simple notion of the challenges facing patients, their families, professional caregivers, and policy makers. (shrink)

: This paper examines the main Jewish sources relevant to end-of-life ethics, two Talmudic stories, the early modern code of law (Shulhan Aruch), and contemporary Halakhaic (religious law) responsa. Some Orthodox rabbis object to the use of artificial life support that prolongs the life of a dying patient and permit its active discontinuation when the patient is suffering. Other rabbis believe that every medical measure must be taken in order to prolong life. The context of the discussion is the (...) recent release of the "Steinberg Report," which proposes a law regulating end-of-life issues in Israel. It is argued that the Orthodox rabbis base their views on a strongly positivist concept of the religious law. The rabbis deliberate the law as a manifestation of the will of God and try to stretch the law as much as possible in order to benefit the patient, even when it is good for the patient to die. Direct and active actions that kill are prohibited; certain forms of passive euthanasia and contrivances that terminate life support without needing direct human action are accepted. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad that also includes the parents or guardians. The multifactorial (...) nature of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

Effective palliative care that rests on a sound ethical foundation requires ongoing discussions about patient and family values and preferences. This is especially important when addressing care at end-of-life including artificial nutrition and hydration, withdrawal of life-sustaining therapies and palliative sedation as well as requests for assistance in hastening death. The eighth volume in the HPNA Palliative Nursing Manuals series, Legal and Ethical Aspects of Palliative Care, provides an overview of critical communication skills and formal organizational mechanisms, (...) such as ethics committees and interdisciplinary rounds, required for decisions in ethical dilemmas which respect diversity in the views of colleagues, as well as patients. The content of the concise, clinically focused volumes in the HPNA Palliative Nursing Manuals series is one resource for nurses preparing for specialty certification exams and provides a quick-reference in daily practice. (shrink)

The care of elderly people with dementia poses ethical problems in several respects. This paper considers the problems in relation to treatment, withdrawal of treatment (including nutrition and hydration) in terminal care, and consent to involvement in research. It is ultimately the responsibility of the physician to take the decision about whether or not to proceed with treatment, according to the best interests of the patient, but nurses, families and significant others can be involved in making the (...) decision. When withdrawal of treatment or withdrawal of nutrition and hydration in the terminal stages of dementia are being considered it is necessary to take into account the nature of the treatment, whether or not it is extraordinary, and the goals of continued nutrition. In some circumstances it may be possible for them to be withdrawn. Only research which is aimed at evaluating treatment for dementia may involve subjects who are suffering from dementia. Soigner des personnes âgés souffrant de la démence pose plusieurs problèmes éthiques. Cet article considère les problèmes concernant le traitement, cessation de traitement (y inclus nutrition et hydration) dans la phase terminale, et consentement de participation dans les recherches. C'est ultimement la décision du docteur si oui ou non de continuer avec le traitement selon les meilleurs intérêts du malade, mais les infirmiers/ères, les familles et les personnes importantes autour du malade peuvent jouer un rôle dans les décisions. Si la cessation de traitement ou cessation de nutrition et hydration dans la phase terminale de démence est envisagée il est nécessaire de tenir compte de la nature du traitement, s'il est 'extraordinaire' ou non, et le but de nutrition si on continuait. Dans quelques circonstances il est possible de les discontinuer. Seuls les recherches qui ont pour but d'évaluer les traitements pour la démence peuvent utiliser des personnes souffrant de démence. Die Pflege von älteren Personen mit Demenz stellt einige ethische Probleme. Dieser Artikel betrachtet die Probleme in Beziehung auf die Pflege, Zurückziehung von Pflege (auch von Nahrung und Getrank) der Sterbenden und der Entscheidung, in der Forschung beteiligt zu sein. Der Arzt hat die schlussendliche Verantwortung über die Entscheidung ob mit der Pflege weitergefahren werden soll oder nicht nach dem besten Interesse der Patienten. Aber das Krankenpflegepersonal, die Familie und bedeutende Andere können auch an dieser Entscheidung teilnehmen. Wenn es sich um Zurückziehung der Pflege, oder Zurückziehung von Nahrung oder Getrank in der Sterbepflege von Personen mit Demenz handelt, is es nötig, das Wesen der Pflege und die Ziele einer fortfahrenden Nahrung zu kennen. In gewissen Fällen ist es möglich, diese zurück zu ziehen. Es sollen nur Patienten mit Demenz an Forschungen teilnehmen die über die Pflege der Demenz einschätzt. (shrink)

This paper is focused on the ethical dimension of palliative care for the terminally ill. I agree with other authors that the value of human dignity shall be acknowledged as the most important value in this setting. Recognition of the value of dignity as the central value requires responsible palliative care where the relational aspect between care-givers and care-receivers is of the greatest importance. In order to achieve this, dignity as a concept and the notion of (...) dignity in subjective, objective and normative worlds has to be in harmony. In reality, often these separate worlds present various threats to the notion of dignity and to dignified end-of-life care. I think that if we want our palliative care to be of high quality and humane, we have to urge medicine together with medical ethics to search for solutions to these threats to the dignity of patients. I, therefore, propose Leuven personalism to be one of the possible fruitful methodologies for medical ethics and for the promotion of dignity in a palliative care setting. (shrink)

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing (...) differences and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Design: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia. (shrink)

BackgroundIn cancer care, do not resuscitate (DNR) orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. (...) Previous studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care.MethodsA qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants.ResultsThe participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work.ConclusionThe study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and “natural” death with dignity for their dying patients. A preference for the expression “allow for natural death” instead of the traditional term “do not resuscitate” was found in the material. (shrink)

The book offers an introduction to the moral concepts and value of health care. It is written by a moral philosopher, a doctor and a nurse and contains questions, cases and exercises which are suitable for medical, nursing and all students and commentators on health care. Moral dilemmas include consent, confidentiality, the giving or withholding of information, and the economics of health care. The issues of artificial reproduction, terminal care and the research and testing of (...) drugs are addressed. (shrink)

This research explored the ethical issues that nurses reported in the process of elaboration and further disclosure after an initial diagnosis of a terminal illness had been given. One hundred and six hospice nurses in Norway and Denmark completed a questionnaire containing 45 items of forced-choice and open-ended questions. This questionnaire was tested and used in three countries prior to this study; for this research it was tested on Danish and Norwegian nurses. All respondents supported the ethics of (...) ongoing disclosure to terminally ill patients based on ethical principles embedded in their country’s Patients’ Rights Acts. Truth, as an intrinsic value, proved foundational to patient autonomy, the most frequent ethical principle these nurses reported to justify their ethical position on information disclosure to terminally ill people. Telling the truth about a diagnosis was not the end of ethics in hospice care, but rather the beginning because what occurs ethically in dealing with prognosis issues became central to these hospice nurses, the patients and their families. Coupled with truth-telling, compassionate interaction and care become extensions of patients’ rights. (shrink)

This book identifies and explores ethical themes in the structure and delivery of hospice care in the United States. As the fastest growing sector in the US healthcare system, in which over forty percent of patients who die each year receive care in their final weeks of life, hospice care presents complex ethical opportunities and challenges for patients, families, clinicians, and administrators. Thirteen original chapters, written by seventeen hospice experts, offer guidance and analysis that promotes best ethical (...) practice for hospice organizations and professionals. The book addresses common questions and issues faced by those who work in hospice care, a dynamic movement that, in only 30 years, has shifted from an all-volunteer care alternative at the end of life to a highly regulated industry in which over half of providers are for-profit enterprises in a very competitive health care marketplace. The chapters show how the history and philosophy of hospice care can inform the values and composition of care teams, the operations of inpatient units, and access to care for pediatric and long-term care populations. Various chapters propose frameworks for deliberating organizational approaches to ethical questions in changing regulatory and legal environments, including a model for hospice ethics committees. The final chapter outlines an expanded model of hospice as a community based, interdisciplinary, and holistic form of palliative care emphasizing advance planning, case management, and a flexible spectrum of services. This model can serve as a centrepiece for a new quality of life and social support approach, not only to terminal care, but also long-term care during the later stages of chronic illness and fraility. (shrink)

Los cuidados paliativos deben manejar los diferentes problemas que los pacientes y las familias pueden tener al final de la vida. La sedación es una maniobra terapéutica utilizada con cierta frecuencia en cuidados paliativos y constituye una buena práctica médica cuando está bien indicada; sin embargo, presenta el riesgo de conculcar algunos principios éticos. Los principios de beneficencia y autonomía son posiblemente los principios éticos mayormente afectados cuando se considera la sedación. Se deben cumplir los siguientes requisitos: síntoma refractario, enfermedad (...) terminal y consentimiento, y en lo posible estar avalada por una segunda opinión médica. La sedación paliativa no es eutanasia y las diferencias están en el objetivo, el proceso y el resultado. En el presente trabajo se discuten algunos de los aspectos para prevenir la conculcación de los principios éticos, asimismo se proporcionan algunas sugerencias para ayudar en la toma de decisiones. Palliative care to the different problems encountered by patients and their families at the end of life. Sedation is a therapeutic manoeuvre frequently used in palliative medicine, that could eventually infringe some ethical principles. From our standpoint, beneficence and autonomy are probably the most affected principles when sedation is considered. The following conditions are required in order for it to be applied: refractory symptom, terminal illness and consent, and as long as possible, the decision must be supported by a second medical opinion Palliative sedation is different from euthanasia, and the differences lie in the objective, the pro- cess and the result. Some measures to prevent such violations to occur are discussed, and suggestions intended to guide in decision making are proposed. (shrink)

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

Despite advances in palliative care, some patients still suffer significantly at the end of life. Terminal Sedation (TS) refers to the use of sedatives in dying patients until the point of death. The following limits are commonly applied: (1) symptoms should be refractory, (2) sedatives should be administered proportionally to symptoms and (3) the patient should be imminently dying. The term ‘Expanded TS’ (ETS) can be used to describe the use of sedation at the end of life outside (...) one or more of these limits.In this paper, we explore and defend ETS, focusing on jurisdictions where assisted dying is lawful. We argue that ETS is morally permissible: (1) in cases of non-refractory suffering where earlier treatments are likely to fail, (2) where gradual sedation is likely to be ineffective or where unconsciousness is a clinically desirable outcome, (3) where the patient meets all criteria for assisted dying or (4) where the patient has greater than 2 weeks to live, is suffering intolerably, and sedation is considered to be the next best treatment option for their suffering.While remaining two distinct practices, there is scope for some convergence between the criteria for assisted dying and the criteria for ETS. Dying patients who are currently ineligible for TS, or even assisted dying, should not be left to suffer. ETS provides one means to bridge this gap. (shrink)

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end‐of‐life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end‐of‐life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients’ comfort and dignity were deemed most at stake and therefore commanded nurses’ primary attention. This overarching (...) commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end‐of‐life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients’ subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end‐of‐life care. (shrink)

Terminally ill people might want to discuss the options they have of hastening their deaths with their psychologists who should therefore know the law that regulates euthanasia in the jurisdictions where they practice. The legal, and therefore ethical, situation that influences psychologists’ position and terminally ill people’s options, however, differs notably across jurisdictions. Our aim is to provide a brief moral-legal historical context that explains how the law reform processes in different jurisdictions created these different legal contexts and options that, (...) in turn, influence psychologists’ ethical position. We conclude by considering 8 specific ethical issues at a conceptual level that might confront psychologists irrespective of where they practice. (shrink)

A theology of accompaniment offers insights on how to journey with and be present to those who suffer from terminal illness. In order to sustain acts of accompaniment, the companion must cultivate specific virtues through prayer and the practices of the Christian community. This ethic of accompaniment is based on a Thomistic conceptualization of the virtues of charity and fortitude. These virtues enable the companion to engage in four types of practices with and on behalf of the dying patient. (...) Ethical accompaniment offers the following contributions to end-of-life care, the companion can function as a healthcare proxy, offers a viable alternative to physician-assisted suicide, and overcomes the loss of meaning associated with death through the Christian narrative. (shrink)

At a time when even a brief hospital stay means becoming terrifyingly dependent on the kindness of strangers, this compassionate and practical book by a prominent medical ethicist gives power back to patients while providing invaluable guidance to their friends and families. "A cutting-edge book about cutting-edge issues (that) every American must know. . . ".--Alan Dershowitz.

" Journal of the American Medical Association "Walton has made a successful attempt to write about medical concerns without ever leaving the layperson to ...

Not everyone finds a in suffering. Indeed, even those who do subscribe to this interpretation recognize the responsibility of each individual to show not only sensitivity and compassion but render assistance to those in distress. Pharmacologic hypnosis, morphine intoxication, and terminal sedation provide their own type of medical to the terminally ill patient suffering unremitting pain. More and more states are enacting legislation that recognizes this need of the dying to receive relief through regulated administration of controlled substances. Wider (...) legislative recognition of this need would go far toward allowing physicians, in the exercise of their reasonable medical judgment, to administer a range of narcotics and barbiturates to the terminally ill without fear of legal sanctions. Sadly, social attitudes and governmental concerns about the spread of drug addiction provide an undeniable policy nexus that impedes unduly a rational approach or exception for the treatment of pain experienced by the dying. (shrink)

Objective: To describe the frequency of support for terminal sedation among internists, determine whether support for terminal sedation is accompanied by support for physician assisted suicide , and explore characteristics of internists who support terminal sedation but not assisted suicide.Design: A statewide, anonymous postal survey.Setting: Connecticut, USA.Participants: 677 Connecticut members of the American College of Physicians.Measurements: Attitudes toward terminal sedation and assisted suicide; experience providing primary care to terminally ill patients; demographic and religious characteristics.Results: 78% (...) of respondents believed that if a terminally ill patient has intractable pain despite aggressive analgesia, it is ethically appropriate to provide terminal sedation . Of those who favoured terminal sedation, 38% also agreed that PAS is ethically appropriate in some circumstances. Along a three point spectrum of aggressiveness in end of life care, the plurality of respondents were in the middle, agreeing with terminal sedation but not with PAS. Compared with respondents who were less aggressive or more aggressive, physicians in this middle group were more likely to report having more experience providing primary care to terminally ill patients and attending religious services more frequently .Conclusions: Support for terminal sedation was widespread in this population of physicians, and most who agreed with terminal sedation did not support PAS. Most internists who support aggressive palliation appear likely to draw an ethical line between terminal sedation and assisted suicide. (shrink)