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

This 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)

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 (...) class='Hi'>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)

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)

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)

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)

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)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? That question is the focus of this essay. Put another way: relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally (...) ill have? On the one hand, we might see the terminally ill as being among the “medically least well off” and therefore deserving very high priority. On the other hand, we might see them as squandering vast medical resources for marginal medical benefits, thereby denying needed resources to others who would benefit much more. We begin the essay by making a number of morally relevant distinctions with regard to the category of “being terminally ill.” We note, given contemporary medicine, that individuals may be terminally ill several times in the course of a life. Not all such circumstances make equal just claims to needed health care. We also note that our conceptions of health care justice are ultimately incapable of making very fine-grained, morally justified rationing judgments in complex medical circumstances. We conclude that we must finally rely upon fair processes of rational democratic deliberation to articulate such judgments for our own future, possibly terminally ill selves, thereby undercutting the rhetoric of “death panels.”. (shrink)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? This is the question that will be the focus of this essay. Another way of asking our question would be the following: Relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority (...) ought the health care needs of persons who are terminally ill have? Should any of the health care needs of the terminally ill be assigned very low priority? Or should all their health care needs be assigned the highest priority? If we reflect a bit, we will find ourselves greatly internally conflicted. On the one hand, the “caring” side of our moral self might see terminally ill individuals as being among the “medically least well off,” and therefore, deserving virtually any medical resources that will yield any degree of good for them. (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)

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)

Sustaining hope in patients is an important element of health care, allowing improvement in patient welfare and quality of life. However in the palliative care context, with patients who are terminally ill, it might seem that in order to maintain hope the palliative care practitioner would sometimes have to deceive the patient about the full nature or prospects of their condition by providing a ‘false hope’. This possibility creates an ethical tension in palliative practice, where the beneficent desire to (...) improve patient welfare through sustaining hope appears to be in conflict with an autonomy-based requirement not to deceive patients about their condition. In order to resolve this ethical tension, we provide an analysis of the concept of hope and argue that there is at least one conception – the ‘absolute’ conception of hope – which when properly understood allows practitioners to foster hope in terminally-ill patients while avoiding any need to deceive them about their condition. Practitioners therefore do not need to shy away from using the language of hope in the palliative setting, as on this understanding of hope it can be used in a way that both promotes patient welfare and respects patient autonomy. (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 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)

This paper explores Paul Ramsey's thought on the question of how properly to care for the sick and dying. Ramsey's views were carefully articulated in "The Patient as Person" and, eight years later, "Ethics at the Edges of Life". Those two treatments are the centerpiece of analysis here, an analysis that argues for essential continuity in Ramsey's view, even though issues are sharpened and explored in new ways in the later work. The theological vision underlying Ramsey's thought on this topic (...) is also examined and explored. (shrink)

This article discusses the place of sedation in the care of the terminally ill, as used in the practice of palliative care using case studies, clinical pragmatism forms the theoretical framework from which to elucidate the varying part that sedation plays in the overall management of a person facing the end of life. We contend that when used appropriately, sedation is an ethical and legitimate intervention that enhances comfort at the end of life and ought not sedate the person (...) onto “oblivion”. (shrink)

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

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

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)

OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home (...) is the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families. (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)

Our society is increasingly confronting the questions of whether health care can and should be limited on economic considerations. While it is tempting to use utilitarian‐based, cost‐benefit analysis in such decisions, only principles of procedural and substantive justice can provide solid moral grounds for using economic criteria to set limits on care. An ethic of justice can inform the development of guidelines for health planners in policies to limit care for the terminally ill and the nonterminal elderly.

Music’s power to improve the ‘human condition’ has been acknowledged since ancient times. Something as counter-intuitive as weeping in response to music can ameliorate suffering for a time even for terminally ill patients. Several benefits—including catharsis, communication, and experiencing vitality—can be associated with grieving in response to “sad” music. In addressing the potential rewards of such an activity for terminally ill patients, this author combines concepts from philosopher Jerrold R. Levinson’s article, entitled “Music and Negative Emotion,” an illustration (...) from a major motion picture, and supporting research from medical reports and aesthetic writings. Carefully offering this experience is recommended for patients who retain the capacity to express preference. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Helping a Muslim Family to Make a Life–and–Death Decision for Their Beloved Terminally Ill FatherBahar BastaniI live in a city in the Midwest with a population of around two million people. There are an estimated 2,000 Iranians living in this city, the vast majority of which belong to Shia sect of Islam. [End Page 190] However, the vast majority is also not very religious. Over the past two (...) decades that I have been living in this city, professionally in the capacity of a physician and university faculty at a school of medicine, and socially as one of the community leaders with a particular role in religious matters, I have acquired the trust of my community. Following one of my yearly routine travels to my homeland, Iran, I had just returned to work when I received a phone call from one of the Iranian community members. He informed me that his father was very ill and was hospitalized, and that the physicians had introduced the idea of stopping life support. The family was experiencing a significant emotional, moral and religious dilemma as to whether they could consent to this. I was requested by the patient’s children to help them make the right decision.I requested that the oldest son, who had called me, to ask the three other siblings and their mother to be present at the bedside of the patient that night, so that we could discuss the matters face–to–face. That same night, all requisite family members and myself gathered at the bedside of this 88–year–old husband and father, who had developed multi–organ failure, which commenced with an infection following a heart valve replacement, followed by bacteremia and sepsis. Moreover, the patient was hypotensive, had developed respiratory failure requiring intubation and artificial ventilation, and had also developed hematologic coagulation abnormalities secondary to sepsis. Because of the sepsis, hypotension, and multiple drugs, including antibiotics and vasopressors, his kidneys had also failed, and there was a need to start hemodialysis if his life was to be maintained. After speaking with the intensive care physicians who were taking care of this elderly gentleman, it became clear to me that further care was futile, and there was absolutely no hope for him to recover from his multiple organ failure. I presented all the facts that I had acquired to the family members, and expressed my own viewpoint that I agreed with those physicians and that further care of their beloved, terminally ill husband and father was futile and only extended his dying. My assurances made it easier for the family members, particularly for his four sons who were present, to come to the decision to withdraw life support. After I informed the intensive care physicians of the family’s decision, the patient was heavily sedated with morphine, and the intravenous fluids, antibiotics, vasopressors, and the ventilator machine were all stopped. Over the next several minutes, the patient developed agonal breathing, his blood pressure dropped to zero, and his heart stopped. During the last few minutes of his life, I held the hands of the family members, we all prayed Islamic prayers to bless his soul while departing from his body. The next day, I supported the family with funeral services that included the Islamic prayers for the dead, the ceremonial religious washing of the body of the deceased, and the ceremonial religious burial.The dilemma that this family faced was multi-factorial: (1) the children had spent all of their adult life in America, and were unfamiliar with Islamic end of life and funeral traditions; (2) they had been asked by their father’s physicians to make a decision regarding the withdrawal of life support, which posed a moral and ethical dilemma; (3) they did not know whether it was religiously acceptable to withdraw life support; and (4) they did not know what type of funeral service would be acceptable to the religious beliefs of their deceased father.My presence as a trusted community leader, physician and religious leader was reassuring to the family members that the decision to stop life support for their loved one with a terminal illness and multiple organ... (shrink)

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

The author reviews and continues the debate initiated by her recent paper in this journal. The paper was critical of certain aspects of palliative medicine, and caused Ashby and Stoffell to modify the framework they proposed in 1991. It now takes account of the need for artificial hydration to satisfy thirst, or other symptoms due to lack of fluid intake in the terminally ill. There is also a more positive attitude to the emotional needs and ethical views of the (...) patient's family and care-givers. However, clinical concerns about the general reluctance to use artificial hydration in terminal care remain, and doubts persist about the ethical and legal arguments used by some palliative medicine specialists and others, to justify their approach. Published contributions to the debate to date, in professional journals, are reviewed. Key statements relating to the care of sedated terminally ill patients are discussed, and where necessary criticised. (shrink)

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

End-of-life issues and questions are complex and frequently cause confusion and anxiety. In _Death with Dignity_,_ _theologian, medical ethicist, and pastoral caregiver Peter A. Clark examines numerous issues that are pertinent to patients, family members, and health care professionals, including physiology, consciousness, the definition of death, the distinction between extraordinary and ordinary means, medical futility, “Do Not Resuscitate” orders, living wills, power of attorney, pain assessment and pain management, palliative and hospice care, the role of spirituality in end-of-life care, and (...) physicians’ communication with terminal patients. Patients, family members, medical students, and health care professionals will find in _Death with Dignity _the_ _practical and ethical knowledge they need to capably and confidently cope with end-of-life challenges. (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)

This paper presents and discusses a recent Israeli proposal to legislate on the rights of the dying patient. A gap exists between elitist biases of the committee proposing the law, and popular values and sentiments. The proposed law divides the dying patients into two groups: “those who wish to go on living” and “those who wish to die”. The former will have a right to life prolonging extraordinary care. It is not clear who would foot the bill for this care. (...) Also it is hard to see how this munificence could fail to discriminate against all other patients. Both the secular ethicists and the rabbis involved in drawing up the proposal accepted the assumption that it is good for some terminal patients to die. The rabbis objected, however, to direct and active interventions that shorten life. The solution arrived at was to install timers in the ventilators so as to allow them to expire automatically unless the patient wishes for their resetting. (shrink)

My ambition in this paper is to provide an account of an unacknowledged example of blameless guilt that, I argue, merits further examination. The example is what I call carer guilt: guilt felt by nurses and family members caring for patients with palliative-care needs. Nurses and carers involved in palliative care often feel guilty about what they perceive as their failure to provide sufficient care for a patient. However, in some cases the guilty carer does not think that he has (...) the capacity to provide sufficient care; he has, in his view, done all he can. These carers cannot legitimately be blamed for failing to meet their own expectations. Yet despite acknowledging their blamelessness, they nonetheless feel guilty. My aims are threefold: first, to explicate the puzzling nature of the carer guilt phenomenon; second, to motivate the need to solve that puzzle; third, to give my own account of blameless guilt that can explain why carers feel guilty despite their blamelessness. In doing so I argue that the guilt experienced by carers is a legitimate case of guilt, and that with the right caveats it can be considered an appropriate response to the progressive deterioration of someone for whom we care. (shrink)

Respecting and encouraging autonomy in the elderly is basic to the practice of geriatrics. In this paper, we examine the practice of cardiopulmonary resuscitation (CPR) and "artificial" feeding in a geriatric unit in a general hospital subscribing to jewish orthodox religious principles, in which the sanctity of life is a fundamental ethical guideline. The literature on the administration of food and water in terminal stages of illness, including dementia, still shows division of opinion on the morality of withdrawing nutrition. We (...) uphold the principle that as long as feeding by naso-gastric (N-G) or percutaneous endoscopic gastrostomy (PEG) does not constitute undue danger or arouse serious opposition it should be given, without causing suffering to the patient. This is part of basic care, and the doctor has no mandate to withdraw this. The question of CPR still shows much discrepancy regarding elderly patients' wishes, and doctors' opinions about its worthwhileness, although up to 10 percent survive. Our geriatric patients rarely discuss the subject, but it is openly ventilated with families who ask about it, who are then involved in the decision-making, and the decision about CPR or "do-not-resuscitate" (DNR) is based on clinical and prognostic considerations. (shrink)

Objective: Although nurses have an important role in the care process surrounding artificial food or fluid administration in patients with dementia or in terminally ill patients, little is known about their attitudes towards this issue. The purpose of this study was to thoroughly examine nurses’ attitudes by means of a literature review.Method: An extensive systematic search of the electronic databases PubMed, Cinahl, PsycINFO, The Cochrane Library, FRANCIS, Philosopher’s Index and Social Sciences Citation Index was conducted to identify pertinent articles (...) published from January 1990 to January 2007.Findings: Nurses’ arguments for or against could be categorised as ethical-legal, clinical or social-professional. The most important arguments explicitly for artificial food and fluid administration in patients with dementia or in terminally ill patients were sanctity of life, considering artificial food and fluid administration as basic nursing care, and giving reliable nutrition, hydration or medication. An explicit counter-argument was the high cost of treatment. Arguments used by opponents and proponents were quality of life and dignified death. The arguments were not strikingly different for the two patient populations. It turned out that the nurses’ ethical arguments remarkably reflected the current ethical debate. But some of their clinical presuppositions contradicted current clinical evidence.Conclusion: The interaction between clinical facts and ethical reflections makes the findings of this review extremely relevant for clinical ethics. A large need exists to clearly communicate to nurses the latest clinical evidence and the main results of ongoing ethical debates. (shrink)

Harm reduction initiatives such as the distribution of naloxone have been crucial in saving lives during the opioid crisis in North America. Despite these efforts, today’s drug supply contaminated...

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)

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (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)

Recent advances in the brain sciences have dramatically improved our understanding of brain function. As we find out more and more about what makes us tick, we must stop and consider the ethical implications of this new found knowledge. Will having a new biology of the brain through imaging make us less responsible for our behavior and lose our free will? Should certain brain scan studies be disallowed on the basis of moral grounds? Why is the media so interested in (...) reporting results of brain imaging studies? What ethical lessons from the past can best inform the future of brain imaging? These compelling questions and many more are tackled by a distinguished group of contributors to this volume on neuroethics. The wide range of disciplinary backgrounds that the authors represent, from neuroscience, bioethics and philosophy, to law, social and health care policy, education, religion and film, allow for profoundly insightful and provocative answers to these questions, and open up the door to a host of new ones. The contributions highlight the timeliness of modern neuroethics today, and assure the longevity and importance of neuroethics for generations to come. (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)