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)

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 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)

Religion may be an influential factor for care of terminally ill patients. Since there was no information of how Japanese religions thought of terminal care, a questionnaire survey was conducted among a total of 388 religious corporations, including 143 Shinto, 157 Buddhist, 58 Christian and 30 miscellaneous religious groups. Respondents were asked to answer questions based on their religious faith regarding a living will, and the introduction or withdrawal of life-sustaining treatments at the terminal stage. Results (...) showed that Japanese religions accepted the concept of living will and "being natural" at terminal care. Many corporations were critical about introduction of life-sustaining measures to the terminally ill patient, though some Shinto corporations were favorable to such acts. The Catholic policy denying extraordinary treatment was approved of by about three fourths of Shinto and Buddhist corporations. The present survey indicated that Japanese religions hold esteem in medicine. They advocate "being natural," when medical treatment becomes futile. Thus, religionists' views may facilitate to deepen and to expand discussion on this important issue among the general public. (shrink)

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)

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)

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)

: 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)

The pope supported his conclusion by arguing that some patients with PVS make at least a partial recovery, and, in the current state of medical science, we are still unable to predict with certainty which patients will recover and which will not. But here he seems to have been poorly advised. While it is true that in most PVS cases, we cannot definitively exclude the possibility of recovery, modern brain-imaging techniques do now enable us to know that in some PVS (...) cases, the entire cortex has been destroyed. Then, no recovery is possible, for the cortex cannot reconstitute itself. Hence the argument for preserving the lives of these patients cannot be based on medical uncertainty. (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)

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

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)

The moral importance of the ‘intention–foresight’ distinction has long been a matter of philosophical controversy, particularly in the context of end-of-life care. Previous empirical research in Australia has suggested that general physicians and surgeons may use analgesic or sedative infusions with ambiguous intentions, their actions sometimes approximating ‘slow euthanasia’. In this paper, we report findings from a qualitative study of 18 Australian palliative care medical specialists, using in-depth interviews to address the use of sedation at the end of (...) life. The majority of subjects were agnostic or atheistic. In contrast to their colleagues in acute medical practice, these Australian palliative care specialists were almost unanimously committed to distinguishing their actions from euthanasia. This commitment appeared to arise principally from the need to maintain a clear professional role, and not obviously from an ideological opposition to euthanasia. While some respondents acknowledged that there are difficult cases that require considered reflection upon one's intention, and where there may be some ‘mental gymnastics,’ the nearly unanimous view was that it is important, even in these difficult cases, to cultivate an intention that focuses exclusively on the relief of symptoms. We present four narratives of ‘terminal’ sedation – cases where sedation was administered in significant doses just before death, and may well have hastened death. Considerable ambiguities of intention were evident in some instances, but the discussion around these clearly exceptional cases illustrates the importance of intention to palliative care specialists in maintaining their professional roles. (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)

In September 1998 the Bundesrztekammer, i.e., the German Medical Association, published new principles concerning terminal medical care. Even before publication, a draft of these principles was very controversial, and prompted intense public debate in the mass media. Despite some of the critics' suspicions that the principles prepared the way for liberalization of active euthanasia, euthanasia is unequivocally rejected in the principles. Physician-assisted suicide is considered to violate professional medical rules. In leaving aside some of the notions customarily used (...) in the euthanasia debate, e.g., passive euthanasia, the principles emphasize the obligation of physicians to offer and the right of patients to receive palliative care. The principles explicitly list modalities of basic treatment that are indispensable in all cases, such as the obligation to satisfy hunger and thirst. This statement is meant to resolve the dispute on nutrition and hydration at the end of life, as it shifts the focus of care from maintaining physiological parameters to satisfying subjective needs. For patients in a persistent vegetative state, artificial feeding is held to be obligatory. Yet, the principles make reference to recent German jurisdiction which permit the stopping of artificial feeding if it is in accordance with the patient's presumed will. Additionally, the wording concerning this issue is found to remain unclear. Patients' autonomy is strengthened by explicitly welcoming advance directives as a means to ascertain patients' wills. The principles mark some changes compared to earlier documents. They deserve careful analysis and should be considered in the international debate on issues concerning the end of life. (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)

In lieu of an abstract, here is a brief excerpt of the content:Care of the terminal patient:Are we on the same page?Lauren WancataIn surgical training a “service” or care team consists of sick patients admitted to the hospital and the medical team caring for the patient. Each service consists of an attending physician, a chief resident, a senior resident and junior residents structured as a hierarchy. The chief was gone for the week. As a senior trainee I (...) would be the acting chief—a role I had assumed many times before this month. To prepare for the week of his absence, I read through each patient’s chart, and the chief and I discussed each patient—diagnosis, procedures, and plans.One was a 41–year–old male with cancer—he was young, but a patient like him was not uncommon at my institution. He originally came in through the emergency department with abdominal pain and difficulty with urination. His admitting medical team started the work–up for his symptoms—blood tests, a CAT scan, and consults to other physician services with specialized knowledge. He eventually underwent endoscopy with biopsies of his stomach and placement of stents into his ureter and kidney for his urinary issues. With return of the biopsies, he had a diagnosis—cancer. He required additional procedures, including the placement of stents into his bile ducts, as they, like his ureter, had become affected by the cancer. The next step was staging the cancer to determine his treatment options. Our surgical service was consulted for a diagnostic laparoscopy with washing—we would take a look inside his abdomen with a camera and obtain a fluid sample to be sent to the pathologist for review, the standard of care for this type of cancer. When the camera was placed nodules were seen—a sample of the nodules and the fluid were sent to a pathologist and determined to be positive for cancer: metastatic disease, stage IV. A special feeding tube was placed into his small intestine to aid in nutritional support, as he had already lost a significant amount of weight, and improving his nutrition would be imperative for any further treatments. Following this operation, oversight of his day–to–day care was taken on by our surgical service, and he had been under our care for a period of time before I rotated onto the service for the month.What was the plan for his care in the hospital, and what was his–long–term plan? His cancer could not be surgically removed due to the extent of its spread within his body. He had recently undergone another CAT scan due to an elevation in his white blood cell count (this elevation was a sign of possible infection) and a thoracentesis, a procedure to remove some of the fluid that was collecting around his lungs. Nephrologists (kidney specialist) had been consulted due to his declining kidney function. Throughout the days, his tube feeds, his source of nutrition, would often be turned off due to bloating and feeling full.Each morning, I rounded with our team, and we would see how he was doing. We would discuss how his night went, and make a plan for the day. He was a man of few words, but his wife was always at his bedside, to support him, listen to updates and keep tract of his progress. She had worked at the hospital and had seen a wide range of patients. She would ask about his kidney function, his tube feeds, and his labs. But, she never asked about his prognosis. I would leave his room each day with the unnerving feeling that the patient, family members and care team were not on the same page. Yes, we all wanted him to get better and to leave the hospital. [End Page 28] But, was he really going to get better? What defined better? Did the patient and his family really know the extent of his disease and his prognosis?Towards the end of my week as chief, I started to ask if they had any other questions. It had been a few weeks since his operation. Was there anything that they wanted to discuss or ask me about? At the... (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)

A patient with end-stage motor neurone disease was admitted for hospice care with worsening bulbar symptoms. Although he initially walked onto the ward he became very distressed and asked for sedation. After much discussion, this man was deeply sedated, and after some harrowing days, died. Was it right to provide terminal sedation? What should the threshold be for such treatment? How should our personal reservations affect how we approach the distressed patient in an end-of-life situation?

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)

We have conducted a small qualitative empirical study into the problems that nurses encounter in delivering existential support in their care of dying patients. We found that nurses are confronted with four types of problem: determining whether the patient actually has put a genuine question for existential support on the agenda; assessing what the import of such a question is; devising an adequate procedure for offering existential support; and organizing adequate support for themselves. Our analysis shows that it takes (...) a ‘fine-tuned antenna’ from nurses to determine these existential questions, which are often put indirectly and in a variety of forms. We have attempted to show that the subtleties of the communicative dimension of palliative terminal care require an intricate set of virtues on the part of the nurse. We have analysed these virtues in a bottom-up approach, inferring them directly from the material obtained from interviews. The framework utilized is the Aristotelian one of striking the right balance between the poles of a morally relevant dimension. (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)

An individual’s right to refuse life-sustaining treatment is a fundamental expression of patient autonomy; however, supporting this right poses ethical dilemmas for healthcare providers when the patient has attempted suicide. Emergency physicians encounter patients who have attempted suicide and are likely among the first medical providers to face the dilemma of honoring the patient’s DNR or intervening to reverse the effects of potentially fatal actions. We illustrate this issue by introducing a case example in which the DNR of a terminally (...) ill woman was not honored because the cause of her cardiac arrest was suicide. We argue that although a terminal diagnosis should change the way health care providers respond to a suicide attempt, many of the theoretical underpinnings for how one should treat suicide attempts—especially the criterion of external reasonability, that is the action to withhold or withdraw life-sustaining measures is reasonable independent of the precipitating event—are common to all situations :3–12, 2013). The presumption that patients who attempt suicide lack capacity due to acute mental illness is flawed because it fails to account for a competent individual’s reasonable preference to not be forced to live in an unbearable, terminal condition. In states without legislation allowing physician aid in dying, patients and providers must grapple with these limitations on a case-by-case basis. In cases where the patient has a limited life expectancy and there is not concern for psychiatric illness as the primary cause of the suicidal action, we argue that the negative right to refuse life-sustaining treatment should prevail. (shrink)

I agree with Jecker et al that “the headline-grabbing nature of existential risk (X-risk) diverts attention away from immediate artificial intelligence (AI) threats…”1 Focusing on very long-term speculative risks associated with AI is both ethically distracting and ethically dangerous, especially in a healthcare context. More specifically, AI in healthcare is generating healthcare justice challenges that are real, imminent and pervasive. These are challenges generated by AI that deserve immediate ethical attention, more than any X-risk issues in the distant future. Almost (...) 50 years ago, John Knowles edited a volume titled Doing Better and Feeling Worse: Health in the United States. We are ‘doing better’ because numerous advances in medical technologies are saving more lives and improving the quality of our lives. But we are ‘feeling worse’ because the additional costs are unsustainable, are threatening funding for other social goods and are increasing injustices regarding the allocation of those resources. This is precisely the situation we are faced with regarding AI in medicine today. Exploding healthcare costs have generated increasing pressure to control those costs, often with unjust consequences. AI is touted as a critical mechanism for controlling healthcare costs, often with little thought given to justice-relevant consequences. Consider, for example, …. (shrink)

This article is a review of the literature on the subject of how nurses who provide palliative care are affected by ethical issues. Few publications focus directly on the moral experience of palliative care nurses, so the review was expanded to include the moral problems experienced by nurses in the care of the terminally ill patients. The concepts are first defined, and then the moral attitudes of nurses, the threats to their moral integrity, the moral problems that (...) are perceived by nurses, and the emotional consequences of these moral problems are considered in turn. The results show that the moral behaviour of nurses, which is theoretically grounded in commitment to care and to the patient, appears to be shaped by specific processes that lead to engagement or to mental and behavioural disengagement in morally difficult situations. Nurses often appear to fail to recognize the moral dimensions of the problems they experience and also to lack the skills they need to resolve moral problems adequately. Although the findings show that several elements that are beyond the control of nurses, owing to their lack of autonomy and authority, influence their moral experience, intrinsic factors such as feelings of insecurity and powerlessness have a profound effect on nurses’ perceptions and attitudes in the face of moral problems. The moral problems perceived by these nurses are related to end-of-life issues, communication with patients, the suffering of patients, and the appropriateness of the medical treatment. (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)

Organizational changes are common in elder care today. Such changes affect caregivers, who are essential to providing good quality care. The aim of the present study was to illuminate caregivers’ experiences of working in elder care while under threat of organizational change and termination notice. Qualitative content analysis was used to examine interview data from 11 caregivers. Interviews were conducted at three occasions during a two‐year period. The findings show a transition in their experiences from ‘having a (...) professional identity and self‐confidence’, to ‘being a professional in a threatening situation caused by someone else’ and to ‘struggling to adapt to a changed working environment as a person and a professional’. The caregivers experienced a loss of pride and satisfaction. Previous literature indicates that this may have consequences for the quality of care and that employees may be at risk of negative health effects. However, the caregivers continued to struggle, doing their best to complete their duties. The study has implications for high‐level decision‐makers, managers and caregivers in similar work–life situations in that it deals with factors that facilitate or impede similar transitions. (shrink)

Over the last twenty years, ‘palliative care’ has evolved as a special nursing field in Germany. Its historic roots are seen in the hospices of the Middle Ages or in the hospice movement of the twentieth century. Actually, there are numerous everyday sources to be found about this subject from the nineteenth century. The article at hand deals with the history of nursing the terminally ill and dying in domestic care in the nineteenth century. Taking care of (...) and nursing the dying was part of everyday routine in the nursing care as practiced by the deaconesses and sisters in those days. Mit der Seelenpflege bei den unheilbar Kranken und Sterbenden schufen die Kaiserswerther Diakonissen sich einen von Ärzten unabhängigen Kompetenzbereich. Meine Analysen zur Privatpflege zeigen jedoch darüber hinaus, dass die in ihrer Aufmerksamkeit auf das Mutterhaus ausgerichteten Diakonissen auch in Leibespflege sehr viel unabhängiger von den Ärzten zu agieren schienen als die freien Krankenschwestern. The article takes a look not only at the actual nursing activities but also at the relationship between the sisters and their patients and their relatives and the family doctor. On the basis of the recorded letters which the nurses wrote to the deaconess motherhouse in Kaiserswerth, it is also possible to analyze how the deaconesses communicated and reflected their actions at the deathbed. (shrink)

How is a terminally ill patient treated by the surrounding people in the U.S. and Japan? How does a terminally ill patient decide on his or her own treatment? These questions will be examined in a study of intensive medical care, received by a terminally ill Japanese cancer patient in the U.S. and Japan. This casereflects the participant observation by a Japanese anthropologist for about 8 years in the United States and Japan on one patient who was hospitalized in (...) both countries on and off for about eight years. The objective of this study is to illuminate the different concept of personhood between the U.S. and Japan that appeared in different cultural practices of both countries and in the subject’s own decision making process. The significant differences appeared between theU.S. and Japan in the concepts of (1) science, (2) suffering, (3) Power of Attorney and Doisho (Consent Form), and (4) organized care. The interpretation of such differences indicates that seemingly universal practices across countries suggest cultural specific concepts and their management. Therefore, ethical norms appeared differently accordingly to each country. (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)

Gilbertson et al present a considered analysis of the abstract problem of ‘sedation’ at the end of life,1 and it is reassuring to see the separation of multiple practises that are often grouped under the heading terminal sedation. In their work, the authors attempt to introduce and justify a new practice in the care of those dying with significant suffering—expanded terminal sedation (ETS). This analysis will not, however, help our colleagues at the bedside. Here, we will focus (...) on the flaws which are most relevant to clinicians: jurisdiction, uncertainty and reversibility. The authors’ focus on a jurisdiction that does already allow medically assisted in dying confuses their analysis. For example, either an instance of their proposed ETS does amount to intentionally hastening death, in which case it should be treated as a means of euthanasia and practised only where that is permitted, subject to its limits and regulations; or it does not amount to intentionally hastening death, in which case there is no reason to specify such jurisdictions. To explain that the most controversial elements of terminal sedation have been tacitly ‘accepted’ by the society in question does not invalidate the concerns. It is beyond the scope of this response to explore these, but to us, …. (shrink)

ABSTRACT There has been much discussion regarding the acceptable use of sedation for palliation. A particularly contentious practice concerns deep, continuous sedation given to patients who are not imminently dying and given without provision of hydration or nutrition, with the end result that death is hastened. This has been called ‘early terminal sedation’. Early terminal sedation is a practice composed of two legally and ethically accepted treatment options. Under certain conditions, patients have the right to reject hydration and (...) nutrition, even if these are life‐sustaining. Patients are also entitled to sedation as palliation for intolerable, intractable suffering. Though early terminal sedation is thought to be rare at present, the changing nature of palliative medicine suggests its use will increase. Arguments regarding early terminal sedation have failed to recognize early terminal sedation as a distinct legal and ethical entity. It can be seen as both the simple sum of treatment refusal and sedation for palliation, analogous to terminal sedation. It can also be seen as an indivisible palliative treatment, more analogous to assisted suicide or euthanasia. But ultimately, it is wholly analogous neither to terminal sedation given when death is imminent, nor to assisted suicide or euthanasia. This paper contends that early terminal sedation should be considered as a distinct entity. Such a reconception promises to provide a way forward in the debate, practice and policy regarding this contentious area of palliative medicine. (shrink)

Many countries have not considered palliative care a public health problem. With limited resources, disease-oriented therapies and prevention measures take priority. In this paper, I intend to describe the moral framework for considering palliative care as a public health priority in resource-poor countries. A distributive theory of justice for health care should consider integrative palliative care as morally required as it contributes to improving normal functioning and preserving opportunities for the individual. For patients requiring terminal (...) care , we are guided less by principles of justice and more by the duty to relieve suffering and society's commitment to protecting the professional's obligation to uphold principles of beneficence, compassion and non-abandonment. A fair deliberation process is necessary to allow these strong moral commitments to serve as reasons when setting priorities in resource poor countries. (shrink)