In this paper, we explore the desires that play a role at the palliative stage and relate them to various approaches to patient autonomy. What attitude can physicians and other caregivers take to the desires of patients at the palliative stage? We examine this question by introducing five physicians who are consulted by Jackie, an imaginary patient with metastatic lung carcinoma. By combining the models of the physician-patient relationship developed by Emanuel and Emanuel (1992) and the Hellenistic approaches (...) to desires analyzed by Nussbaum (1994), five different ways of dealing with desires in the context of palliative care are sketched. The story of Jackie shows that desires are to a certain extent responsive to reasoning. In the palliative process, that can be a reason to devote attention to the desires of patients and caregivers and to determine which desires need to be fulfilled, which are less important, and how they are linked to emotions the patient has. (shrink)

After a review of terminology, I identify—in addition to Margaret Battin’s list of five primary arguments for and against aid-in-dying—the argument from functional equivalence as another primary argument. I introduce a novel way to approach this argument based on Bernard Lonergan’s generalized empirical method. Then I proceed on the basis of GEM to distinguish palliative sedation, palliative sedation to unconsciousness when prognosis is less than two weeks, and foregoing life-sustaining treatment from aid-in-dying. I conclude that aid-in-dying must (...) be justified on its own merits and not on the basis of these well-established palliative care practices; and that societies must decide, in weighing the merits of aid-in-dying, whether or not to make the judgment that no life is better than life-like-this part of their operative value structure. (shrink)

The paper discusses inappropriate (futile) treatment by analyzing the casuistics of palliative patients in the terminal stage of illness who are hospitalized at the Department of Internal Medicine and Geriatrics of the Faculty hospital with policlinic (FNsP). Our research applies the principles of palliative care in the context of bioethics. The existing clinical conditions of healthcare in Slovakia are characteristic of making a taboo of the issues of inappropriate treatment of palliative patients. Inductive-deductive and normative (...) clinical bioethics methods of palliative care and ethical strategy are applied for defining issues found in inappropriate hemodialysis treatment. An algorithm of hemodialysis treatment requires the definition of those lege artis criteria which, in the context of a patient’s autonomy and his/her decision, precondition the avoidance of the situation in which hemodialysis treatment is inappropriate (futile). Futile treatment in a terminal condition is ethically inappropriate medical treatment that extends the suffering of patients and their relatives. Its definition is determined by the relevant legislation and the methods of bioethics. An active palliative strategy is aimed at managing the process of incurable diseases in the patient’s bio-psycho-socio-spiritual continuity in the process of special bioethics. The global bioethical objective of general bioethics for palliative care is based on the paradigm of social harmony and solidarity in the context of an authentic modus of the patient’s existence as a constitutive principle for the phenomenon of the patient’s being to finite being (death). (shrink)

Objectives To determine the frequencies and types of limitation of medical treatment performed by physician members of the German Society for Palliative Medicine and to analyse the findings with respect to clinical and ethical aspects of end-of-life practices. Design Cross-sectional postal survey. Setting Data collection via the secretary of the German Society for Palliative Medicine using the German language version of the EURELD survey instrument. Subjects All 1645 physician members of the German Society for Palliative Medicine. (...) Main outcome measures Types and frequencies of limitation of treatment and possible determinants. Results 901 physicians participated in the study (response rate 55.8%). Participants reported limitation of treatment in 69.1% of cases. These decisions most often affected artificial nutrition (19%), chemotherapy (14%), antibiotics (11%) and medication other than antibiotics (11%). In the majority of eligible cases, physicians estimated the life-shortening effect of limitation of treatment to be <7 days. However, estimations differ depending on the medical measures in question. Bivariate statistical analysis indicated that withholding of treatment was performed significantly more frequently for patients aged ≥65 years (p=0.019). In addition, there were significant associations between the incidence of limitation of treatment and the different diseases reported by respondents as the underlying cause of death. Conclusion The findings of this study provide information on the current state of an ethically and clinically challenging aspect of clinical practice and can serve as a starting point for further interdisciplinary research on normative and empirical aspects of treatment decision-making at the end of life. (shrink)

오늘날 발달한 의학기술로 인해 우리는 연명치료와 호스피스 · 완화의료 등 죽음과 관련된 의료, 즉 웰다잉(Well-dying)의 문제에 관심을 가지게 되었다. 웰다잉 문제의 핵심은 임종기 환자의 삶의 질뿐만 아니라 죽음의 질의 문제이다. 이러한 문제들은 우리에게 연명치료 중단 및 호스피스・완화의료의 증대와 관련하여 법적, 제도적 과제와 함께 임종기 환자의 죽음교육의 문제를 제기한다. 이 논문은 연명치료 중단과 호스피스 · 완화의료에서 비종교인에 대한 죽음교육의 문제를 다루고 있다. 비종교인들이 내세 관념 없이도 평안한 죽음을 맞이하기 위해서 해결해야 할 과제는 죽음의 두려움을 어떻게 극복하는가의 문제이다. 이 논문은 비종교인의 죽음에 (...) 대한 두려움을 극복하는 문제를 니체와 에피쿠로스의 철학을 통해 살펴본다. 니체는 “삶을 완성시키는 죽음”, “주인으로서 당당하게 맞이하는 죽음”을 위해 이성적이고 자유로운 죽음을 강조한다. 이러한 니체의 죽음관을 통해 연명치료 중단의 철학적 근거를 살펴보고 ‘죽음의 의료화’에 의해 야기되는 현대인의 소외된 죽음에 대해 니체의 사상을 통해 대안을 제시한다. 또한 내세 관념이 없어도 죽음에 대해 두려워할 근거가 없음을 논거를 통해 제시하는 에피쿠로스의 철학을 살펴본다. 에피쿠로스는 죽음에 대한 두려움으로부터 우리를 해방시켜주고, 니체는 죽음이 삶의 끝이 아니라 삶의 완성임을 일깨워준다. 우리는 이 두 철학자의 가르침을 통해 연명치료 중단과 호스피스 · 완화의료를 선택할 때의 정신적 위안을 얻을 수 있을 것이다. 이러한 철학적 위안이 환자 및 환자 가족에 대한 의미 있는 죽음교육의 근거가 될 것이다. (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)

Introduction: Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians’ attitudes towards withholding and withdrawal of curative or life-sustaining treatment. Method: From May to September 2008, we interviewed 14 physicians and 13 nurses (...) working in different palliative-care programmes in New Delhi, using a semi-structured questionnaire. For the interviews and analysis of the data we followed Grounded-Theory methodology. Results: Withholding a curative or life-sustaining treatment which may prolong a terminal cancer patient’s life with a few weeks but also has severe side-effects was generally considered acceptable by the interviewees. The majority of the interviewees agreed that life-sustaining treatments can be withdrawn in a patient who is in an irreversible coma. The palliative-care physicians and nurses were of the opinion that a patient has the right to refuse life-saving curative treatment. While reflecting upon the ethical acceptability of withholding or withdrawal of curative or life-sustaining treatment, the physicians and nurses were concerned about the whole patient and other people who may be affected by the decision. They were convinced they can play an important advisory role in the decision-making process. Conclusion: While deciding about the ethical issues, the physicians and nurses do not restrict their considerations to the physical aspects of the disease, but also reflect upon the complex wider consequences of the treatment decisions. (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)

As palliative care develops across many of the countries of Europe, we find that it continues to raise important ethical challenges. Palliative care practice requires ethical sensitivity and understanding. At the same time the very existence of palliative care calls for ethical explanation. Ethics and palliative care meet over some vital issues: 'the good death', sedation at the end of life, requests for euthanasia, futile treatment, and the role of research. Yet palliative care appears (...) uncertain about its goals and there is evidence that its ethical underpinnings are changing. Likewise, the moral problems of palliative care are only partly served by the four 'principles' of modern bioethics. This innovative book, with contributions by clinicians, ethicists, philosophers and social scientists, provides the first ever picture of palliative care ethics in the European context. It will be of interest to those involved in the delivery and management of palliative care services, as well as to students and researchers. (shrink)

It is a philosophy of patient care, and is therefore open to critique and evaluation.Using the Oxford Textbook of Palliative Medicine Third Edition as their ...

Since the Supreme Court of New Jersey decided the Quinlan case a quarter of a century ago, three American Supreme Court decisions and a host of state appellate decisions have addressed end-of-life issues. These decisions, as well as legislation addressing the same issues, have prompted a torrent of law journal articles analyzing every aspect of end-of-life law. In recent years, moreover, a number of law review articles, many published in this journal, have also specifically addressed legal issues raised by (...) class='Hi'>palliative care. Much less is known in the United States, however, as to how other countries address these issues. Reflection on the experience and analysis of other nations may give Americans a better understanding of their own experience, as well as suggest improvements to their present way of dealing with the difficult problems in this area.This article offers a conceptual and comparative analysis of major legal issues relating to end-of-life treatment and to the treatment of pain in a number of countries. In particular, it focuses on the law of Australia, Canada, the United Kingdom, Poland, France, the Netherlands, Germany, and Japan. (shrink)

Since the Supreme Court of New Jersey decided the Quinlan case a quarter of a century ago, three American Supreme Court decisions and a host of state appellate decisions have addressed end-of-life issues. These decisions, as well as legislation addressing the same issues, have prompted a torrent of law journal articles analyzing every aspect of end-of-life law. In recent years, moreover, a number of law review articles, many published in this journal, have also specifically addressed legal issues raised by (...) class='Hi'>palliative care. Much less is known in the United States, however, as to how other countries address these issues. Reflection on the experience and analysis of other nations may give Americans a better understanding of their own experience, as well as suggest improvements to their present way of dealing with the difficult problems in this area.This article offers a conceptual and comparative analysis of major legal issues relating to end-of-life treatment and to the treatment of pain in a number of countries. In particular, it focuses on the law of Australia, Canada, the United Kingdom, Poland, France, the Netherlands, Germany, and Japan. (shrink)

Background Traditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely disabling, and potentially life-threatening nature of psychiatric disorders, there are neither palliative care units nor clinical guidelines on palliative measures for patients in psychiatry. Main text This paper contributes to the growing literature on a palliative approach in psychiatry and is based on the assumption that a change of perspective (...) from a curative to a palliative approach could help promote patient-centeredness and increase quality of life for severely ill patients in psychiatry as well as in somatic medicine. To exemplify this, we offer three different clinical scenarios: severe and enduring anorexia nervosa, treatment-refractory schizophrenia, and chronic suicidality and persistent self-injury in borderline personality disorder. Conclusion We emphasize that many typical interventions for treatment-refractory psychiatric disorders may indeed be of a palliative nature. Furthermore, introducing traditional features of palliative care, e.g. so-called goals of care conversations, could aid even further in ensuring that caregivers, patients, and families agree on which treatment goals are to be prioritized in order to optimize quality of life in spite of severe, persistent mental disorder. (shrink)

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 semi-structured interviews. (...) We analysed three characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process. (shrink)

We read with interest the extended essay published from Riisfeldt and are encouraged by an empirical ethics article which attempts to ground theory and its claims in the real world. However, such attempts also have real-world consequences. We are concerned to read the paper’s conclusion that clinical evidence weakens the distinction between euthanasia and normal palliative care prescribing. This is important. Globally, the most significant barrier to adequate symptom control in people with life-limiting illness is poor access to opioid (...) analgesia. Opiophobia makes clinicians reluctant to prescribe and their patients reluctant to take opioids that might provide significant improvements in quality of life. We argue that the evidence base for the safety of opioid prescribing is broader than that presented, restricting the search to palliative care literature produces significant bias as safety experience and literature for opioids and sedatives exists in many fields. This is not acknowledged in the synthesis presented. By considering additional evidence, we reject the need for agnosticism and reaffirm that palliative opioid prescribing is safe. Second, palliative sedation in a clinical context is a poorly defined concept covering multiple interventions and treatment intentions. We detail these and show that continuous deep palliative sedation is a specific practice that remains controversial globally and is not considered routine practice. Rejecting agnosticism towards opioids and excluding CDPS from the definition of routine care allows the rejection of Riisfeldt’s headline conclusion. On these grounds, we reaffirm the important distinction between palliative care prescribing and euthanasia in practice. (shrink)

Case studies are used to reflect on the treatment of patients with dementia hospitalized at the Geriatric Department of the Faculty hospital in Prešov, emphasizing human dignity in clinical practice. The discussion is focused on the palliative care of patients with severe dementia. The biomedical method, which respects human dignity is defined by means of inductive, deductive, and normative bioethical methods. They make it possible to provide guidelines for palliative care and individualized prognosis strategy. An analysis of (...) health status of individuals with severe dementia enables us to offer a clinical definition of purposeful treatment based on normative justice and decision-making that reflects the patient’s best interest, thus respecting their dignity. An evaluation of a patient’s care is based on a biomedical method that considers the dementia stage. Applying a bioethical model in a holistic context preconditions the human rights of patients with dementia. (shrink)

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will (...) critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)

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

Background Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? -/- Aims The paper aims to identify changes and challenges in palliative care due (...) to the use of SST. In addition, normative guiding criteria for the use of SST are developed. -/- Methods The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. -/- Results and Conclusion First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care. (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)

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations”, aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if (...) they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética. Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making. (shrink)

Two of the most important concepts in medicine are “curing” and “caring”. Patients should enter clinical trials with the understanding that they benefit from the treatment or that there may be some benefit to others. In many cancer trials, for example, the best that can be hoped for is a prolongation of life. Whether or not life is prolonged, we argue that there exists an obligation which can be termed a “bond of responsibility” to provide appropriate palliative care (...) within the patient’s own cultural context.The Declaration of Helsinki,1 the principal code governing the conduct of medical research, shows this “bond of responsibility” to be at its core. A number of statements stand out: “the health of my patient will be my first consideration”2 and “a physician shall only act in a patient’s best interest when providing medical care which might have the effect of weakening the physical and mental …. (shrink)

BackgroundLittle previous research has been conducted outside of major cities in China to examine how physicians currently perceive palliative care, and to identify specific goals for training as palliative care access expands. This study explored physicians’ perceptions of palliative care integration for advanced cancer patients in Changsha, China.MethodsWe conducted semi-structured qualitative interviews with physicians (n = 24) specializing in hematology or oncology at a tertiary hospital.ResultsMost physicians viewed palliative care as equivalent to end-of-life care, while a (...) minority considered it possible to integrate palliative care with active treatment. Almost all physicians maintained separate conversations about palliative care with family members and patients, communicating more directly with family members than with patients about prognosis and goals of care. Physicians described experiencing ethical tension between the desire of family members to protect the patient from knowing they have advanced cancer, and the patient’s “right to decide” about palliative treatment. Physicians varied overall regarding perceptions of the role they should have in discussions about goals of care.ConclusionsAs palliative care access expands in China, medical training should encourage earlier integration of palliative care for advanced cancer, address ethical issues faced by physicians communicating about palliative care, and establish guidance on the role of the physician in discussions about goals of care. (shrink)

Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare. We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a (...) central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive. (shrink)

Pollard, Brian The extreme difficulties in attempting to make safe euthanasia law, with an argument of treatment in case of patients who can ask for death to escape from pain and patients who are not in a position to ask, are documented. Published findings of five large inquiries into the issue show that it would not be possible to make such law without endangering the lives of some of those who did not want to die.

Psychiatry today is mainly practised within a curative framework. However, many mental disorders are persistent and negatively affect quality of life as well as life expectancy. This tension between treatment goals and the actual illness trajectory has evoked a growing academic interest in ‘palliative psychiatry’, namely the application of a palliative care approach in patients with severe persistent mental illness. Recently, Trachsel et al presented a working definition of palliative psychiatry. This first official attempt to capture (...) the concept is based on WHO’s widely accepted definition of palliative care but modified and limited to include only severe persistent psychiatric illness. While this is a welcome step in the discussion on palliative care approaches in psychiatry, it also opens up for new questions. One of the most evident is whether psychiatry actually needs its own definition of palliative care or, put differently, whether there is something about mental disorders that differs so radically from other medical conditions that it calls for a separate definition. We acknowledge the need to discuss the goals of psychiatric care in patients with severe persistent psychiatric illness. However, we question whether a separate definition of palliative care exclusive to psychiatry is the right way to go. In this paper, we discuss why. (shrink)

The paper first defines palliative treatment and distinguishes it from symptomatic treatment. Then, the palliative situation is delineated as inseparably linked to the finitude of human life. Given the objectives of palliative treatment — responding to symptoms, damage to the patients' self-image, and the proximity of death — a subjective concept of disease is described, that is regarded as the focus of palliative treatment. The essence of the concept of disease is analysed (...) as the patient's experience with a tendency of reduction of her or his vitality. Palliative medicine is shown not to be symptom-oriented, but disease — directed as other domains of medicine. Implications and practical consequences, especially the status of objective findings, of this concept are discussed and therapeutic opportunities in the palliative situation reconsidered. (shrink)

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

Making particular use of Shale’s analysis, this paper discusses the notion of leadership in the context of palliative medicine. Whilst offering a critical perspective, I build on the philosophy of palliative care offered by Randall and Downie and suggest that the normative structure of this medical speciality has certain distinctive features, particularly when compared to that of medicine more generally. I discuss this in terms of palliative medicine’s distinctive morality or ethos, albeit one that should still be (...) seen in terms of medical morality or the ethos of medicine. I argue that, in the context of multi-disciplinary teamwork, the particular ethos of palliative medicine means that healthcare professionals who work within this speciality are presented with distinct opportunities for leadership and the dissemination of the moral and ethical norms that guide their practice. I expand on the nature of this opportunity by further engaging with Shale’s work on leadership in medicine, and by more fully articulating the notion of moral ethos in medicine and its relation to the more formal notion of medical ethics. Finally, and with reference to the idea of medical education as both on going and as an apprenticeship, I suggest that moral and ethical leadership in palliative medicine may have an inherently educational quality and a distinctively pedagogical dimension. The nature of palliative medicine is such that it often involves caring for patients who are still receiving treatment from other specialists. Whilst this can create tension, it also provides an opportunity for palliative care professionals to disseminate the philosophy that underpins their practice, and to offer leadership with regard to the moral and ethical challenges that arise in the context of End of Life Care. (shrink)

Palliative care names as one of its central aims to prevent and relieve suffering. Following the concept of “total pain”, which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient’s psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all (...) other means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide, or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers’ efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS. (shrink)

Objectives—To investigate the incidence and solution of ethical dilemmas in a palliative care unit.Design—Health care workers recorded daily all dilemmas in caring for each patient.Setting—Palliative care unit of National Taiwan University Hospital in Taiwan.Patients—Two hundred and forty-six consecutive patients with terminal cancer during 1997-8.Main measurement—Ethical dilemmas in the questionnaire were categorised as follows: telling the truth; place of care; therapeutic strategy; hydration and nutrition; blood transfusion; alternative treatment; terminal sedation; use of medication, and others.Results—The type and frequency (...) of ethical dilemmas encountered were: place of care ; truth-telling ; hydration and nutrition ; therapeutic strategy , and use of medication . Ethical problems relating to the place of care and to therapeutic strategy were unlikely to be solved with increased hospital stay and some ethical dilemmas remained unsolved even in the final week in hospital, including place of care , truth-telling and therapeutic strategy . Problems of truth-telling occurred in nearly half of patients over sixty-five-years-old. Conflicts about blood transfusion were experienced in all patients below 18-years-old, and the dilemmas concerning the place of care occurred most frequently with head and neck cancer patients .Conclusions—The solution of ethical dilemmas required refocusing by medical professionals on the importance of continuing communication. Improved ethical training for professionals would contribute to solving the moral dilemmas of palliative care. (shrink)

Currently, euthanasia is officially allowed only in a number of countries, in most countries, as well as in the Russian Federation, it is prohibited by law. However, in clinical practice, there are a large number of incurable patients who experience intractable pain, so the problem of euthanasia is relevant. Aim: to analyze the current state of the problem of euthanasia and palliative care in pulmonology. Material and methods: review of domestic and foreign literature on the problem of euthanasia over (...) the past 10 years has been carried out. Literature search was carried out using the e-library and PubMed databases. Results: We present a medical and philosophical perspective. Currently, euthanasia is a way to quickly and painlessly die if there is a serious illness that is incurable, suffering and pain. The best and perhaps the only alternative to euthanasia is palliative care. In pulmonology, palliative care focuses on early detection of respiratory failure, dyspnea, fear and pain relief. The effective organization of palliative care in respiratory medicine depends on the well-coordinated work of pulmonologists, physiotherapists, nurses, and psychologists. Conclusion: The problem of euthanasia to date still remains controversial from both medical and ethical points of view. The adoption of euthanasia by law may be a deterrent to governments from funding research into new treatments. The risk of abuse of euthanasia in order to obtain organs for transplantation or to get rid of seriously ill burdensome relatives cannot be ruled out. It is necessary to consider the issue of introducing additional educational cycles on the issues of modern achievements in palliative medicine, technical means of rehabilitation and the peculiarities of their use in patients with various diseases in the terminal stage in the training of doctors and nurses. (shrink)

We agree with Lynch et al. that patients with chronic diseases and Band-Aid treatments are unlikely to benefit from a version of Operation Warp Speed or by deprioritizing standards of scientific ev...

Euthanasia, today, is one of the most debated issues in bioethics. Euthanasia, at the time of Thomas Aquinas, was an unheard-of term. Nevertheless, while there is no direct statement with respect to “euthanasia” per se in the writings of Aquinas, Aquinas’s moral theory and certain theological commitments he held could be applied to the euthanasia question and thus bring Aquinas into contemporary bioethical debate. In this paper, I present the relevant aspects of Aquinas’s account of natural law and his theological (...) views on suffering, examining what conclusions each entails with respect to directly intended euthanasia. I then proceed to discuss cases that involve either the administration of palliative medication that hastens death, terminal sedation, or the non-utilization of life-sustaining treatment. This involves a detailed investigation into Aquinas’s account of human intentional action and the question of whether Aquinas holds some form of the Principle of Double-Effect. I end with a final statement of Aquinas’s position on these various types of cases as a synthesis of the conclusions drawn from the different areas of his thought discussed in this paper. My aim is to provide a set of guidelines, based upon Aquinas’s thought, for those who may be faced with decisions regarding the proper form of palliative treatment to be provided to those suffering from a painful terminal illness. Decision-makers, in such cases, may include a terminally ill patient, a patient’s immediate family, health care providers, and lawmakers concerned with establishing the legality of certain forms of treatment. Establishing a clear set of moral guidelines, specifically addressed to this type of decision, can assist the relevant decision-makers in forming their consciences such that they may take the appropriate course of action in confronting the suffering of a terminally ill patient. (shrink)

The difficulties of undertaking good quality effectiveness research in palliative medicine are well documented. Much of the ethical literature in this area focuses on the vulnerability of the palliative care population. It is clear that a wider ethical approach will need to be used to justify research in the terminally ill. Some themes of ethical thought are underutilised in considering the ethics of palliative care research. Three arguments to justify the need for effectiveness research in palliative (...) care should be highlighted: there is evidence of an untapped altruism amongst the population of palliative care patients who would be keen to be involved in such research; traditional Aristotelean and Thomistic virtue ethics would point to the need to gain knowledge in and of itself, but especially in palliative medicine for the benefit of patients: virtue also accrues in the acquisition of a stock of research experience which in turn makes further research feasible; most compellingly, justice would dictate that palliative treatments are effective, that futile or useless treatments are avoided and that patients are not party to “n of 1” trials by default. The current state of the evidence base of effectiveness in palliative care leads us to the uncomfortable position where patients are in precisely the position of being unwitting participants in “n of 1” clinical trials by default, without their explicit consent. (shrink)

Application of sedation at the end of life has been fraught with ethical and clinical concerns, primarily focused on its potential to hasten death. However, in the face of clinical data that assuage most of these concerns, a new threat to this treatment of last resort has arisen. Concern now pivots on its effects on the personhood of the patient, underpinned by the manner in which personhood has been conceptualised. For many authors, it is consciousness that is seen to (...) be the seat of personhood, thus its loss is seen to rob a patient of their moral and ethical worth, leaving them in a state that cannot ethically be differentiated from death. Here I proffer a clinically based alternative to this view, the Ring Theory of Personhood, which dispels these concerns about sedation at the end of life. The Ring Theory envisages personhood as a coadunation of three domains of concern: the innate, the individual and the relational elements of personhood. The innate element of personhood is held to be present among all humans by virtue of their links with the Divine and or their human characteristics. The individual elements of personhood pivot on the presence of consciousness-dependent features such as self-awareness, self-determination and personality traits. The relational component of personhood envisages an individual as being ‘socially embedded’ replete with social and familial ties. It is these three equally important inter-related domains that define personhood. (shrink)

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each (...) aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care. (shrink)

With narrow exception, physicians’ treatment of incapacitated patients requires the consent of health surrogates. Although the decision-making authority of surrogates is appropriately broad, their moral authority is not without limits. Discerning these bounds is particularly germane to ethically complex treatments and has important implications for the welfare of patients, for the professional integrity of clinicians, and, in fact, for the welfare of surrogates. Palliative sedation is one such complex treatment; as such, it provides a valuable model for (...) analyzing the scope of surrogates’ moral authority. Guidelines for palliative sedation that present it as a “last-resort” treatment for severe and intractable suffering yet require surrogate consent in order to offer it are ethically untenable, precisely because the moral limits of surrogate authority have not been considered. (shrink)

This article aims at summing up the reflections of a small group of psychologists who work in the domain of palliative treatment. The theory and methodology supporting it are borrowed by a group analysis approach; the group's purpose is a research based on the workers' experience elaboration, which aims at finding out both the specificities of the work apparatus with the people accompanied to the conclusion of their lives, and the main thematic areas of the relationship between healthcare (...) team, patients, and families. The work we present aims at introducing the most meaningful themes that emerged during group meetings: first of all, some service criticalities examined in the area of terminal healthcare and the workers' possible saturation and psycho-social discomfort quotas, generating in some cases a common sense of professional precariousness. (shrink)

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)

Current guidelines treat palliative sedation to unconsciousness as an effective medical treatment for terminally ill patients who need relief from severe symptoms, yet also restrict its use in ways that are extraordinary for medical treatments. A closer look at the kinds of cases in which palliative sedation is used suggests a way of adjusting the guidelines to resolve this seeming contradiction.

My essay ‘Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation’ has recently generated some critique which I will attempt to address in this response. Regarding the empirical question of whether palliative opioid and sedative use shorten survival time, Schofield et al raise the three concerns that my literature review contains a cherry-picking bias through focusing solely on the palliative care population, that continuous deep palliative sedation falls beyond the scope of routine (...) palliative care, and that my research may contribute to opiophobia and be harmful to palliative care provision globally. Materstvedt argues that euthanasia ‘ends’ rather than ‘relieves’ suffering and is not a treatment, and that the arguments in my essay are therefore predicated on a ‘category mistake’ and are a non-starter. Symons and Giebel both raise the concern that my Kantian and Millian interpretation of the Doctrine of Double Effect is anachronistic, and that when interpreted from the contemporaneous perspective of Aquinas it is a sound ethical principle. Giebel also argues that palliative opioid and sedative use do meet the Doctrine of Double Effect’s four criteria on this Thomistic account, and that it does not contradict the Doctrine of the Sanctity of Human Life. In this response I will explore and defend against most of these claims, in doing so clarifying my original argument that the empirical and ethical differences between palliative opioid/sedative use and euthanasia may not be as significant as often believed, thereby advancing the case for euthanasia. (shrink)

A signal challenge of twenty-first century psychiatry is the effective treatment of existential/spiritual suffering in palliative care. This chapter will concentrate on research to assess the therapeutic potential of psilocybin to assuage that suffering. If a “psychedelic experience” can facilitate an acceptance of impending death, and reduce the existential suffering of those who endure it, it could prove to be a valuable intervention where one is sorely needed. The therapeutic use of psilocybin with dying patients (hereinafter patients) raises (...) numerous questions about research trial design, the model of psychiatry that might accommodate it, and the kind of experience it induces. Are these the sorts of experience that psychiatric treatment should effect on troubled patients? Is spiritual care within the ambit of psychiatry? There are epistemological questions as to the veridicality of the psychedelic experience. How much credence should we give it? I will argue in cautious support of ongoing research to evaluate the therapeutic use of psilocybin in palliative care. This argument can be extended to research on its therapeutic use in psychotherapy. The chapter will focus on four questions: (1) what is the ethical justification for this research on patients? (2) What types of research trial design are best used to assess the purported benefits of a psychedelic drug experience? (3) What is the epistemic warrant of the “mystical” and “noetic” facets of this experience? (4) What models of (a) psychiatry and (b) drug action could accommodate the therapeutic use of psilocybin in palliative care? (shrink)