In the mid 1980s it was apparent that the need for organ donors exceeded those willing to donate. Some University of Pittsburgh Medical Center (UPMC) physicians initiated discussion of possible new organ donor categories including individuals pronounced dead by traditional cardiac criteria. However, they reached no conclusion and dropped the discussion. In the late 1980s and the early 1990s, four cases arose in which dying patients or their families requested organ donation following the elective removal of mechanical ventilation. Controversy (...) surrounding these cases precipitated open discussion of the use of organ donors pronounced dead on the basis of cardiac criteria. Prolonged deliberations by many committees in the absence of precedent ultimately resulted in what is, to our knowledge, the country's first policy for organ donation following elective removal of life support. The policy is intricate and conservative. Care was taken to include as many interested parties as possible in an effort to achieve representative and broad based support. This paper describes the development of the UPMC policy on non-heart-beating organ donation. (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)

Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious (...) attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content. (shrink)

Objectives: To investigate the current situation of completing the informed consent for do-not-resuscitate (DNR) orders among the competent patients with terminal illness and the ethical dilemmas related to it. Participants: This study enrolled 152 competent patients with terminal cancer, who were involved in the initial consultations for hospice care. Analysis: Comparisons of means, analyses of variance, Student’s t test, χ2 test and multiple logistic regression models. Results: After the consultations, 117 (77.0%) of the 152 (...) class='Hi'>patients provided informed consent for hospice care and DNR orders. These included 21 patients (17.9%) who signed the consent by themselves, and 96 (82.1%) whose consent sheet was signed only by family members. The reasons why patients were not involved in the discussions toward the consent (n = 82) included poor physical or psychological condition (44.9%), concerns of the consultant hospice team (37.2%), and the family’s refusal (28.2%). On a multivariate analysis, patients’ awareness of their poor prognosis (odds ratio = 4.07, 95% confidence interval = 2.05 to 8.07) and their understanding of hospice care (2.27, 1.33 to 3.89) were two independent factors (p<0.01) that influenced their participation in the discussions or their personal signature in the informed consent. Conclusion: The family-oriented culture in Asian countries may violate the principles of the Patient Self-Determination Act and the requirements of the Hospice Care Law in Taiwan, which inevitably poses an ethical dilemma. Earlier truth-telling and continuing education of the public by hospice care workers will be helpful in solving such ethical dilemmas. (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)

Euthanasia has once again become headline news in the UK, with the announcement by Dr Michael Irwin, a former medical director of the United Nations, that he has helped at least 50 people to die, including two between February and July 1997. He has been quoted as saying that his ‘conscience is clear’ and that the time has come to confront the issue of euthanasia. For the purposes of this article, the term ‘beneficent voluntary active euthanasia’ (BVAE) will be used: (...) beneficent from the prima facie principle of beneficence, to do good, and voluntary to indicate that this must be carried out at the request of a competent client. This implies adherence to another prima facie principle, that of respect for autonomy. Active implies that something is done or given with the intention of hastening death. The word euthanasia itself simply means ‘good death’. This article examines the moral positions of two nurses and one junior doctor towards the subject of BVAE and an attempt is made to represent the main conflicting moral positions. The central arguments against BVAE and counterarguments are presented. The conclusion reached is that consenting adults should not be prevented from availing themselves of BVAE if another consenting adult (a medical doctor) is available and capable of carrying out their wishes. This being the case, it is suggested that BVAE should be available as an option in hospices and in the community. The aims of this article are: to generate debate among professionals; to present a three-way discussion that might be useful as a focus for educational purposes, particularly at undergraduate level; to challenge professionals to confront the issue of euthanasia; and to plead the case of those who request assistance in exercising autonomy by gaining control over their own deaths. (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)

: 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)

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)

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)

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

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)

Objectives: To assess French district nurses’ opinions towards euthanasia and to study factors associated with these opinions, with emphasis on attitudes towards terminal patients.Design and setting: An anonymous telephone survey carried out in 2005 among a national random sample of French district nurses.Participants: District nurses currently delivering home care who have at least 1 year of professional experience. Of 803 district nurses contacted, 602 agreed to participate .Main outcome measures: Opinion towards the legalisation of euthanasia , attitudes (...) towards terminal patients .Results: Overall, 65% of the 602 nurses favoured legalising euthanasia. Regarding associated factors, this proportion was higher among those who discuss end-of-life issues with terminal patients , who consider competent patients should always be told their prognosis and who value the role of advance directives and surrogates in end-of-life decision-making for incompetent patients . Women and older nurses were less likely to favour legalising euthanasia, as were those who believed in a god who masters their destiny.Conclusions: French nurses are more in favour of legalising euthanasia than French physicians; these two populations contrast greatly in the factors associated with this support. Further research is needed to investigate how and to what extent such attitudes may affect nursing practice and emotional well-being in the specific context of end-of-life home care. (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)

The use of terminal sedation to control theintense discomfort of dying patients appearsboth to be an established practice inpalliative care and to run counter to the moraland legal norm that forbids health careprofessionals from intentionally killingpatients. This raises the worry that therequirements of established palliative care areincompatible with moral and legal opposition toeuthanasia. This paper explains how thedoctrine of double effect can be relied on todistinguish terminal sedation from euthanasia. The doctrine of double effect is (...) rooted inCatholic moral casuistry, but its applicationin law and morality need not depend on theparticular framework in which it was developed. The paper further explains how the moral weightof the distinction between intended harms andmerely foreseen harms in the doctrine of doubleeffect can be justified by appeal to alimitation on the human capacity to pursue good. (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)

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)

Philip Reed (2023) argues that discrimination against (non-acutely) dying patients constitutes a unique kind—which he calls terminalism—because their status as persons with terminal illness marks them with a socially salient identity which, by means of direct and indirect discrimination, limits their sets of choices and resources, such as in hospice care or organ transplant policies. 1 Importantly, Reed also argues that while terminalism is an increasingly prevalent normative phenomenon, it has been overlooked in the literature, ‘hiding in (...) plain sight’ as even though we are ‘aware of it at some level’." 1 What could explain this paradox? Drawing from Jeffrey Bishop, Giorgio Agamben, and T. Kenny Fountain, I argue that an institutional episteme and operating assumption of medicine, from the training of medical students, discursively disciplines terminally ill persons as bare life, between medicine’s dichotomy of bodies: neither ‘biovaluable’ (the surplus value of separated human bodily material... (shrink)

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support (...) and protect the patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process. (shrink)

Background: Achieving a “good death” is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period. Objectives: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a “good death.” Research design: A cross-sectional study. Participants and research (...) context: This study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions. Ethical consideration: Approval from Institutional Review Board was obtained. Findings: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses. The nurses thought the most important issue was relief of uncomfortable symptoms. On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question. Discussion: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents. Conclusions: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse–patient communication with regard to the patients’ end-of-life wishes. (shrink)

Suffering patients (when able), grieving families and compassionate physicians have always sought the least detrimental alternative while deciding care in the face of tragedy. Modern medical technology has brought great benefits to patients but has blurred traditional concepts of life and death and created new dilemmas for practising doctors. While this technology has given doctors great control over living and dying, their dominance in critical decision making is being challenged. More and more their decisions are liable to (...) public and legal scrutiny, intense publicity by the news media and exploitation by lobbyists with opposing aims. Increasing pressure of this kind may deflect the physician form his primary responsibility to patients and their families. For infants with gross malformations or a distressing terminal illness we believe that the parents and their doctors must be allowed primary decisional power even if the chosen course of action involves the death of the infant. Choices for death should be permitted but only after suitable family and professional consultation. Some general guidelines are suggested. As these situations are so varied and so complex, much latitude in decision-making should be expected and tolerated. (shrink)

Palliative Care Nursing: Caring for Suffering Patients explores the concept of suffering as it relates to nursing practice. This text helps practicing nurses and students define and recognize various aspects of suffering across the lifespan and within various patient populations while providing guidance in alleviating suffering. In addition, it examines spiritual and ethical perspectives on suffering and discusses how witnessing suffering impacts nurses' ability to assume the professional role. Further, the authors discuss ways nurses as witnesses to suffering (...) can optimize their own coping skills and facilitate personal growth. Rich in case studies, pictures, and reflections on nursing practice and life experiences, Palliative Care Nursing: Caring for Suffering Patients delves into key topics such as how to identify when a patient is suffering, whether they are coping, sources of coping facades, what to do to ease suffering, and how to convey the extent of suffering to members of the health care team.Palliative Care Nursing: Caring for Suffering Patients helps practicing nurses and students define and recognize various aspects of suffering across the lifespan and within various patient populations while providing guidance in alleviating suffering. (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?

A patient suffering from a severe illness that is entering its terminal stage is forced to develop a coping process. Of all the coping patterns, the religious one stands out as being a psychological resource available to all patients regardless of culture, learning, and any age. Religious coping interacts with other values or practices of society, for example the model of a society that takes care of it's elder members among family or in an institutionalized environment or (...) the way the health system offers or not psychological support for a terminally ill patient. Health care providers should have at least some psychological coping patterns training because not all patterns of religious coping are equally effective, and some have been described as increasing the level of stress or producing other negative psychological effects on the patient. This article aims to review the complex models of religious coping that are unanimously accepted in psychooncology, arguments in favor of religious coping, the types of patients that use this model, ethical dilemmas that could be reinterpreted using religious arguments. Finally, we will also discuss the need of Romanian patients to embrace a religious coping in case of an incurable illness, and also the support that they can receive from both curative and palliative health care providers.  . (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)

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)

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)

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)

While there is a great deal to agree with in the essay Expanded Terminal Sedation in End-of-Life Care there is, we think, a need to more fully appreciate the humanistic side of both palliative and end-of-life care.1 Not only does the underlying philosophy of palliative care arguably differ from that which guides curative medicine,2 dying patients are in a uniquely vulnerable position given our cultural disinclination towards open discussions of death and dying. In this brief (...) response, we critically engage Gilbertson et al ’s essay and seek to contextualise the perspective they put forward. According to Cassell, we should distinguish between pain and suffering.3 The former often gives rise to the latter, but suffering has other causes. This includes existential distress, indicating that, unlike pain, suffering is not simply physiological phenomena. Suffering involves the disintegration of the person, meaning that it can impact patient autonomy. Certainly, that a patient is suffering does not equate to a lack autonomy. Nevertheless, we should take care when making decisions in circumstance where the integrity of our embodied personhood is under threat, something that is clearly the case for those who are dying, particularly those who have refractory symptoms while doing so. Generally speaking, refractory symptoms are those which are intractable. They persist despite attempts at palliation. While this implies that such symptoms—and the suffering they cause—cannot be reversed this is not necessarily the case. Not only can the symptoms experienced by dying patients change …. (shrink)

This study explores the perceptions of Norwegian nurses who have received assisted dying requests from terminally ill patients. Assisted dying is illegal in Norway, while in some countries, it is an option. Nurses caring for terminally ill patients may experience ethical challenges by receiving requests for euthanasia and assisted suicide. We applied a qualitative research design with a phenomenological hermeneutic approach using open individual interviews. A total of 15 registered nurses employed in pulmonary and oncology wards of three (...) university hospitals and home care in one municipality were recruited. Four themes emerged from the analysis: (1) unprepared for the request; (2) meeting direct, indirect, and nonverbal requests; (3) working in a gray zone, and (4) feeling alone and powerless. The study found that nurses were unsure how to handle such requests due to professional uncertainty about assisted dying. Working in an environment where the topic is taboo made nurses morally uncertain, and some perceived this as moral distress. The hospital chaplain played a significant role in providing support to these nurses. (shrink)

Nurses and midwives are the majority of healthcare professionals globally, including Africa, and they provide care at all levels of the health system including community levels. Nurses and midwives contribute to the care of patients with rigid or dogmatic religious beliefs or those with suicidal ideations. This review paper discusses acute and chronic diseases that have suicidal tendencies such as terminal cancer, diseases with excruciating pain, physical disability, stroke, end-stage renal failure, and diabetics who are amputated. (...) It was reiterated that nurses and midwives taking care of these patients should be alert and observant to identify their suicidal tendencies. The paper also discusses religious or spiritual inclinations that negatively affect healthcare access and adherence, especially to biomedical or western medicine. It was emphasized that some religious beliefs do not allow their followers to employ biomedical treatment and nurses and midwives should not impose their faith on patients and their families. The paper ends with a discussion on the specific roles of nurses and midwives in the care of patients with suicidal ideations such as assessment, counseling, administering medication, observation, social interaction, ensuring safety measures, and providing an enabling environment for the family to part of the care and for the observation of religious coping strategies. Nurses and midwives should enhance their knowledge and skills on suicide and increase public education on suicide prevention and identification of those at risk. (shrink)

The aim of this text is to examine the issue of truth telling in doctor-patient relationships, namely in the case of terminal patients. We analyze the problems and attitudes regarding truth telling that there are present when patients suffer from mortal diseases. We conclude that it is very important to keep a fluent and truthful communication in the doctor-patient relationship. We also examine and stress the role that general practitioners can play in the care of (...) class='Hi'>terminal patients at their home and with their friends and/or relatives. (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)

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)

The purpose of this paper is to examine the possibilities and limitations of an ethical and practical approach to terminal dehydration. We have argued that dehydration among terminally ill patients offers an important key to a better understanding of the dying process, and that the caregivers' reactions can lead to a deepening of holistic palliative care. This article makes clear that the moral question of terminal dehydration can only be treated by an interdisciplinary approach. Therefore, before (...) studying the question of the most humane course possible, we must first understand the meaning of dehydration and its repercussions for the dying patient. Inspired by an attitude of respect for a good dying process, we have suggested that it is possible to put forward as a general guideline that medical therapy should be progressively reduced when it has been determined that a patient has reached the terminal stage, or is in an irreversible deteriorating process. We describe the critical somatic, social, psychological, moral and spiritual points, which make up an ethical approach to terminal dehydration (TD). In the total care of the irreversibly terminally ill patient, tolerating TD can be an expression of an authentic and caring involvement in the dying patient's welfare. (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 care of terminally ill patients can be physically, emotionally as well as psychologically exhausting. In the era where everyone is busy with his or her hectic daily schedule, caring for someone diagnosed with HIV on her or his deathbed can be a daunting challenge. Caring for someone dying of AIDS does not only challenge the physical being but rather leaves the carer emotionally drained. What was of concern to the author was to see the struggle that the (...) caregiver goes through whilst caring for the sufferer. More often than not, pastoral care and counselling concentrate mainly on the pain and the suffering of the sick person. In the process, pastoral care loses sight of the agony, the emotional strain and, above all, the trauma of the caregivers in their search for answers as they care for the infected. This scenario has prompted the author to look into the theology of caring with an emphasis on pastoral care of the carers with a view of alleviating their emotional burden in caring for the HIV patients. (shrink)

Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived (...) from the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars. (shrink)

The Liverpool Care Pathway for the Dying Patient (LCP) was an integrated care pathway for patients in the final days or hours of life, developed at the Royal Liverpool University Hospital in conjunction with the Marie Curie Palliative Care Institute, Liverpool. The LCP became increasingly the normative style of care for patients in the terminal stage across NHS England from the 1990s onwards. Following significant questions raised in Parliament, by the media and other (...) stakeholders, an independent review panel was established under Baroness Neuberger in 2013 to investigate the LCP. The findings of the panel were published as More Care Less Pathway: a Review of the Liverpool Care Pathway identifying significant failings in the delivery of the LCP thus leading to it being phased out some six months later. Rather than being euthanasia through the backdoor, many of the criticisms of the LCP and its poor implementation are indicative of poor communication, limited knowledge of the dying process and a paucity of death education. (shrink)

Recent years have witnessed a growing concern that terminally illpatients are needlessly suffering in the dying process. This has ledto demands that physicians become more attentive in the assessment ofsuffering and that they treat their patients as `whole persons.'' Forthe most part, these demands have not fallen on deaf ears. It is nowwidely accepted that the relief of suffering is one of the fundamentalgoals of medicine. Without question this is a positive development.However, while the importance of treating suffering has (...) generally beenacknowledged, insufficient attention has been paid to the question ofwhether different types of terminal suffering require differnt responsesfrom health care professionals. In this paper we introduce a distinctionbetween two types of suffering likely to be present at the end of life,and we argue that physicians must distinguish between these types if theyare to respond appropriately to the suffering of their terminally illpatients. After introducing this distinction and explaining its basis,we further argue that the distinction informs a (novel) principle ofproportionality, one that should guide physicians in balancing theircompeting obligations in responding to terminal suffering. As weexplain, this principle is justified by reference to the intereststerminally ill patients have in restoration, as well as in therelief of suffering, at the end of life. (shrink)

The legitimacy of the refusal of South Australian nurses to care for second trimester abortion patients on grounds of conscience is examined as a test case for a theory of permissible limits on the autonomy of health care professionals. In cases of health care professional (HCP) conscientious refusal, it is argued that a balance be struck between the HCPs' claims to autonomous action and the consequences to them of having their autonomous action restricted, and the entitlement (...) of patients to care and the consequences for them of being refused such care. Conscientious action that results in the disruption or termination of health care services, however, is always impermissible on two grounds. Firstly, because it is at this point that the action '... invades a patient's autonomy, puts a patient at serious risk ... [and] treats a patient unjustly' (1) Secondly, because the consequences of such refusals turn them into political acts--acts of civil disobedience. It is arguable that in order for acts of civil disobedience to be legitimate, certain obligations are required of the dissenter by the community. It is concluded that the actions of the South Australian nurses, which have over the last few years both terminated and disrupted second trimester services, are morally impermissible. (shrink)