Background: Respecting dignity is having a profound effect on the clinical relationship and the care framework for terminally ill patients in palliative care units, hospices and their own homes, with particular consequences for the emergency department. However, dignity is a vague and multifaceted concept that is difficult to measure. Objective: The aim of this study is to define the attributes of dignity in end-of-life care in the emergency department, based on the opinions of physicians and (...) nurses. Research design: A hermeneutic phenomenological approach utilising Gadamer's philosophical underpinnings guided the study. Participants and research context: This research was conducted in Spain in 2013–2014. Participants included 10 physicians and 16 nurses with experience working in the emergency department. Two focus groups and 12 in-depth interviews were carried out. Ethical considerations: The study was approved by the Research Centre Ethical Committee (Andalusian Health Service, Spain). Findings: The results point to the person's inherent value, socio-environmental conditions and conscious actions/attitudes as attributes of dignity when caring for a dying patient in the emergency department. Discussion: Dying with dignity is a basic objective in end-of-life care and is an ambiguous but relevant concept for physicians and nurses. In line with our theoretical framework, our results highlight care environment, professional actions and socio-family context as attributes of dignity. Conclusion: Quality care in the emergency department includes paying attention to the dignity of people in the process of death. The dignity in the care of a dying person in the emergency department is defined by acknowledging the inherent value in each person, socio-environmental conditions and social and individual acceptance of death. Addressing these questions has significant repercussions for health professionals, especially nurses. (shrink)

Background Italy was the first European country to be involved with the COVID-19 pandemic. As a result, many healthcare professionals were deployed and suddenly faced end-of-life care management and its challenges. Aims To understand the experiences of palliative care professionals deployed in supporting emergency and critical care staff during the COVID-19 first and second pandemic waves. Research design A qualitative descriptive design was adopted, and in-depth interviews were used to investigate and analyse participants’ perceptions and (...) points of view. Participants and research context Twenty-four healthcare professionals (physicians, nurses, psychologists, physiotherapists, and spiritual support) from the most affected areas of Italy were recruited via the Italian society of palliative care and researchers’ network. Ethical considerations The University Institutional Board granted ethical approval. Participants gave written informed consent and agreed to be video-recorded. Findings The overarching theme highlighted participants’ experience supporting health professionals to negotiate ethical complexity in end-of-life care. Crucial topics that emerged within themes were: training emergency department professionals on ethical dimensions of palliative and end-of-life care, preserving dying patients’ dignity and developing ethical competence in managing end-of-life care. Conclusions Our study showed palliative care teams’ challenges in supporting health professionals’ ethical awareness in emergencies. However, while they highlighted their concerns in dealing with the emergency staff’s lack of ethical perspectives, they also reported the positive impact of an ethically-informed palliative care approach. Lastly, this study illuminates how palliative care professionals’ clinical and ethical competence might have assisted a cultural change in caring for dying patients during COVID-19 and future emergencies. (shrink)

Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to their dignity being threatened. Moreover, dignity is an abstract concept and there is no studies done on teenagers’ dignity in the final stages of life available in Iran.Purpose: The purpose of this study is to describe the caregivers’ experiences regarding teenagers’ dignity in the (...) final stages of life.Research design: This study is a descriptive phenomenological qualitative research project. The data was collected using deep individual and semi-structured interviews as well as taking notes. The Colaizzi analysis method was used to analyze the data.Participants and research context: 22 caregivers working with teenagers in the final stages of life in a public health centers in Iran who had the criteria to enter the study were selected using a purposeful sampling method and invited to join the study from August 2018 to June 2019. The sampling continued until data saturation.Findings: The findings of the present study were presented in the form of three main themes including “private,” “respecting individual identity,” and “attention to teenagers’ needs” and an additional eight categories.Ethical Considerations: The study’s protocol was approved by the Research Ethics Committee of the Shiraz University of Medical Sciences and all ethical principles were followed throughout the study.Discussion and conclusion: Based on the present study from the caregivers’ point of view, teenagers in their final stages of life required to be cared for and taught in an environment that their privacy was maintained and their individual identity was respected as well as getting attention from the caregivers and companions. In such situations, the teenagers felt calm and their dignity was maintained; therefore, providing a cultural, professional, and organizational setting where all the components of maintaining dignity in teenagers are supported and prioritized is necessary. (shrink)

This article offers a conceptual analysis of self-respect and self-esteem that informs the ethics of psychotherapy in palliative care. It is focused on Chochinov’s Dignity Therapy, an internationally recognized treatment offered to dying patients who express a need to bolster their sense of self-worth. Although Dignity Therapy aims to help such patients affirm their value through summarized life stories that are shared with their survivors, it is not grounded in a robust theory of self-respect. There is reason (...) to be skeptical about deathbed narratives, and Dignity Therapy can unintentionally encourage distorted representations at odds with the self-respect it aims to affirm. Dignity therapy can also encourage distortions of self-esteem that are in conflict with self-respect. Although Chochinov does not address it, the distinction between self-respect and self-esteem is relevant to deathbed accounts. Dillon’s feminist revisioning of self-respect can inform the practice of Dignity Therapy by encouraging honest life stories through a reckoning with one’s moral complexity, especially in moral generativity cases where patients seek forgiveness, relate atonement, or present their lives as examples to be followed. Her concept of self-esteem allows for therapeutic benefits that are less demanding, but no less significant, than those derived from a moral reckoning. Appropriate affirmations of self-esteem can provide much-needed solace when self-respect is damaged beyond adequate repair. Dillon’s account of self-respect and self-esteem enables a richer understanding of the kinds of personal evaluation and disclosure that Dignity Therapy accommodates. As such, their place in Dignity Therapy needs more critical evaluation than it has received. (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)

Opponents of legalised assisted dying often assert that palliative care is worse in countries where assisted dying has been legalised, and imply that legalised assisted dying makes palliative care worse. This study considers five versions of this claim: that it is difficulty to access expert palliative care in countries where assisted dying has been legalised, that those countries rank low in their quality of end‐of‐life care; that legalising assisted dying doesn't expand patient (...) choice in respect of palliative care; that growth in palliative care services has stalled in countries where assisted dying has been legalised; and that legalised assisted dying impedes the growth of palliative care or causes it to decline. In each case, it concludes that neither argumentation nor evidence supports these claims. (shrink)

In 2002, Belgium was the second country in the world to legalize euthanasia following the Netherlands. Since then, a few studies dealing with Belgium euthanasia practices have been published that are based on a survey given to a sample of physicians and nurses . All these studies from the past decade have implicitly proposed the practice of euthanasia as a medical act. Moreover, the last article published in this journal argued that the Belgian experiment concerning medical end-of-life decisions is (...) unique in the world and that the Belgian palliative care system, including euthanasia, should serve as a role-model for the rest of the world .The Belgium law provides a definition for euthanasia which lacks the analytical precision to apply it to medical studies . When analyzing the latest data provided by the Belgian Federal Euthanasia Comm .. (shrink)

Regulation and clinical practices regarding end of human life care differ among the nations and countries. These differences reflect the history of the development of state health systems, different societal values, and different understandings of dignity and what it means to protect or respect dignity. The result is variation in the ethical, legal, and practical approaches to end-of-life issues. The article analyzes the diversity of strategies to strengthen dignity at the end of life of terminally ill (...) patients and to highlight the legal preconditions and limitations for implementing these strategies in independent Lithuania, as a former state of the Soviet Union. It is based on the critical analysis of philosophical literature, legal national and international documents and scientific evidence related to the issue. The author argues that the legal system in Lithuania is not sufficient to ensure the patient’s dignity at the end of life and remains far behind other Western European countries. Legal regulations in Lithuania do not guarantee the right of the patient to express his or her will regarding the future treatment, including the refusal of resuscitation, do not regulate the termination of burdensome, non-viable and meaningless treatment that is undesired by the patient, and limit the accessibility of palliative care with its necessary quality and comfort. (shrink)

Burnout is a phenomenon characterized by fatigue and frustration, usually related to work stress and dedication to a cause, a way of life that does not match the person’s expectations. Although it seems to be associated with risk factors stemming from a professional environment, this problem may affect any person. Palliative care is provided in a challenging environment, where professionals often have to make demanding ethical decisions and deal with death and dying. This article reports on the (...) findings of a systematic review aimed at identifying described burnout levels in palliative care nurses and physicians, and the related risks and protective factors. The main findings indicate that burnout levels in palliative care, or in health care settings related to this field, do not seem to be higher than in other contexts. (shrink)

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next (...) step, parental agency is analyzed from a reality‐based perspective as an activity focused on relationships and the cognitive capacity of parents vis‐a‐vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision‐making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future‐oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision‐making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents. (shrink)

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of- (...) class='Hi'>life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life. (shrink)

Religion and spirituality are integral to the philosophy of palliative care, shaping its approach to spiritual care. This article aims to examine the discourses within palliative care research to illuminate prevailing assumptions regarding spiritual care. Eighteen original articles were analyzed to examine how spiritual care is understood within palliative care. The analysis, informed by Foucault, aimed to identify recurring discourses. The finding reveals that, in palliative care research, spirituality is (...) viewed as enigmatic yet inherently human and natural, assuming that every individual has a spiritual dimension. The analysis points to healthcare professionals being expected to hold certain qualities to put spiritual care into practice. The analysis also reveals that in the analyzed articles, the concept of spiritual care is rooted in a Christian context, with the belief that all individuals possess inherent spirituality or religiosity, a concept often associated with Christian theology. The included articles often utilize theological terms and emphasize a monotheistic viewpoint. Spirituality is articulated as a complex, distinct concept, challenging clear definitions and professional responsibilities. Further, a moral formation of healthcare professionals is described, interpelling and ascribing qualities that healthcare professionals need to provide spiritual care. (shrink)

Herbert, Dilinie As part of the Inquiry into End of Life Choices, commissioned by the Victorian State Government on 7 May 2015, members of the community were invited to share their attitudes towards assisted dying by written submissions. The Inquiry also hosted a panel discussion with a few selected respondents. The final report prepared by the Inquiry is a comprehensive document that identified common themes relating to the benefits and concerns about a possible assisted dying framework. Some respondents used (...) the opportunity to advocate in favour of palliative care services and advance care planning. There were other respondents that were apprehensive about possible changes to the law and wary that it could incite permissible practices of assisted death in Victoria which are in contradiction to existing ethical beliefs, values and norms. Their anxiety was in relation to a potential slippery slope effect of these laws in the future. In this article I will explore how the slippery slope effect has been used to criticise euthanasia legislation, using data from the Netherlands. Although there are indications that the slippery slope is apparent in the Netherlands, there are also contrary indications that are otherwise open for interpretation. I propose that the Inquiry was a valuable opportunity to reflect on community attitudes towards assisted death and that the recommendations to better resource palliative care services, is a positive outcome. (shrink)

Dignity is an expansive ideal, figuring in international covenants, codes of research involving human participants, and debates about decision making at the end of life. One result of this expansiveness is that human dignity can be appropriated by proponents on both sides of many issues, thereby appearing more as a rhetorical flourish than as a serious element in argumentation. However, an appreciation of narrative inquiry shows that opposing representations of dignity constitute alternative assessments of responsible action, both of which (...) can be morally reasonable. One implication is that normative disagreements, as between deathbed decisions about palliative care or euthanasia, can be expected to occur, so that the ideal of dignity should be legally expressed in a practice of supportive laissez-faire in preference to any undue regulation of dying. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. (...) Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

The increased prevalence of advanced‐stage chronic diseases has augmented the need for palliative care teams. In Colombia, although the legislation promotes palliative care development, people still die without receiving management from a palliative care team. In addition, judiciary regulations regarding euthanasia have generated public confusion and ethical conflicts among members of the palliative care teams. Therefore, this study aimed to perform a bioethical reflection on the relationship between palliative care and (...) euthanasia supported by data on euthanasia requests in a palliative care program. This reflection is based on retrospective and descriptive observational data, collected in two highly complex hospitals in Bogotá, Colombia. A total of 50 euthanasia requests were identified, of which 62% met the defined criteria, 16% did not, and 22% were not considered by the interdisciplinary committee for the right to die with dignity due to early death. All patients were treated and followed up by a palliative care team until their death. This study considered that palliative care could be a complement management for patients requesting euthanasia based on their experience by supporting the decision‐making, alleviating suffering, and providing emotional support in the last days of life. (shrink)

The application of continuous deep sedation in the treatment of intractable suffering at the end of life continues to be tied to a number of concerns that have negated its use in palliative care. Part of the resistance towards use of this treatment option of last resort has been the continued association of CDS with physician-associated suicide and/or euthanasia, which is compounded by a lack clinical guidelines and a failure to cite this treatment under the aegis of (...) a palliative care approach. I argue that reinstituting a palliative care-inspired approach that includes a holistic review of the patient’s situation and the engagement of a multidisciplinary team guided by clearly defined practice requirements that have been lacking amongst many prevailing guidelines will overcome prevailing objections to this practice and allow for the legitimization of this process. (shrink)

Herbert, Dilinie Dignity Therapy provides patients with a terminal illness the opportunity to share their life experiences. Their life narrative is reflected upon, shared, transcribed, and later bequeathed to their family and friends. The generativity document produced as a result of Dignity Therapy is a declaration and a lasting legacy, a manuscript that holds meaning and makes meaning at a point in life when people may feel a sense of despair and loss. This article will follow the (...) development of Dignity Therapy, and why it should be acknowledged as an integral aspect of end-of-life care for patients, their families and friends, and healthcare professionals. (shrink)

In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick’s observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even at (...) the price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients’ life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever (“total pain” or critical suffering). Only in the fourth circle are people hedonists. (shrink)

A case of conflict in pediatric end-of-life decision making is presented to compare the complementary roles of clinical ethics consultants and palliative care specialists. The progression of the case illustrates the differing structures, goals, and methods of the majority of such teams. The strengths of each of consultation are emphasized. Particularly in centers where palliative care services are not available, it can be important for careproviders and clinical ethics consultants to focus on alliance-building and a (...) longitudinal relationship with patients and families. (shrink)

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)

Witnessing suffering and death in palliative care can cause moral distress, emotional exhaustion and maladaptive coping strategies. How sense and meaning is made from these experiences influences how physicians think, feel and act as professionals (professional identity formation or PIF). It also determines how they cope with their roles, care for patients and interact with other professionals. Timely, personalised and appropriate support is key as shaping how these physicians develop and contend with sometimes competing beliefs and roles. (...) The Ring Theory of Personhood (RToP) and the Krishna-Pisupati Model (KPM) offer a means of mapping PIF and thus moulding, coping and meaning making. This study uses the RToP and KPM to explore how caring for end-of-life patients impacts the personhood of palliative care physicians. Semi-structured interviews with a purposive sample of 13 palliative care physicians—eleven females and two males aged between 35 and 50 years—at a cancer specialist centre were conducted. Transcripts of the audio-recorded interviews underwent content and thematic analysis where complementary themes and categories identified were combined to form domains that highlighted the physicians’ key experience of providing end-of-life care. The domains identified were (1) identity formation, (2) conflicts, (3) KPM elements and (4) support systems. Together, results revealed that palliative care physicians are driven by Innate, Individual, Relational and Societal belief systems that create an intertwined professional and personal identity, enabling them to find meaning in their experiences and adapt to present contexts within cultural norms and professional expectations. However, their failure to recognise their need for support when hampered by evolving personal, existential and clinical factors underlines the exigency for ongoing surveillance and a potential role for a RToP-based tool and portfolio system that can detect and direct timely, appropriate support to in-need physicians. (shrink)

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

Discussion about a dignified death has almost exclusively been applied to palliative care and people dying of cancer. As populations are getting older in the western world and living with chronic illnesses affecting their everyday lives, it is relevant to broaden the definition of palliative care to include other groups of people. The aim of the study was to explore the views on dignity at the end of life of 12 elderly people living in two (...) nursing homes in Sweden. A hermeneutic approach was used to interpret the material, which was gathered during semi-structured interviews. A total of 39 interviews were transcribed. The analysis revealed three themes: (1) the unrecognizable body; (2) fragility and dependency; and (3) inner strength and a sense of coherence. (shrink)

This paper argues that the world-wide debate about physician assisted dying is missing a golden opportunity to focus on the orchestration of the end of life. Such a process consists of far more than adequate pain control and is a skill which, like all other skills, needs to be learned and taught. The debate offers an opportunity to press for the teaching of this skill. Beyond this, the desire to assure that all can have access to palliative (...) class='Hi'>care makes sense only within the embrace of a universal health-care system and the desire that all can have a death with dignity is meaningful only within the embrace of a life with dignity. (shrink)

In current Western societies, increasing numbers of people express their desire to choose when to die. Allowing people to choose the moment of their death is an ethical issue that should be embedded in sound clinical and legal frameworks. In the case of persons with dementia, it raises further ethical questions such as: Does the person have the capacity to make the choice? Is the person being coerced? Who should be involved in the decision? Is the person’s suffering untreatable? The (...) use of Advance Euthanasia Directives (AED) is suggested as a way to deal with end-of-life wishes of persons with dementia. However, in the Netherlands—the only country in which this practice is legal—the experiences of patients, doctors, and relatives have been far from satisfactory.Our paper analyses this complex ethical challenge from a Dignity-Enhancing Care approach, starting from the Dutch experiences with AED as a case. We first consider the lived experiences of the different stakeholders, seeking out a dialogical-interpretative understanding of care. We aim to promote human dignity as a normative standard for end-of-life care practices. Three concrete proposals are then presented in which this approach can be operationalised in order to deal respectfully with the end-of-life choices of persons with dementia. (shrink)

Background: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. Objective: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. Design: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. Participants and setting: Multi-disciplinary hospice (...) palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. Ethical considerations: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. Results: The 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients’ last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics. Conclusion: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider’s perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients’ end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying. (shrink)

Experience machines, popularized in print by Robert Nozick and on the screen by the Wachowskis’ film The Matrix, provide highly or perfectly realistic experiences that are more pleasant and less painful than those generated in real life.1 The recent surge in virtual reality and neuro-prosthetic technologies is making the creation of real-world experience machines seem inevitable and perhaps imminent.2 Given the likelihood of the near-future availability of such machines, it behooves ethicists to consider the moral status of their potential (...) uses. In this chapter, we investigate the use of experience machines in palliative and end-of-life care situations. We pair up various kinds of experience machines with patients in a range of conditions, to illuminate the moral problems and benefits of using experience machines in this way. We argue that the use of Nozickian experience machines to treat patients in most conditions would be morally problematic, most notably for the negative effects on patients’ characters and real-world relationships. Informed by this initial moral analysis, we describe an experience machine that is more closely related to a virtual reality game, and argue that it can avoid the moral problems encountered by Nozickian experience machines. In fact, we argue that this new kind of experience machine could improve some patients’ characters and relationships with real-world people. We conclude that some kinds of experience machines could benefit many patients, especially those in extreme pain and those not in the position to meaningfully interact with their loved ones in reality. We also note that certain kinds of experience machines could be useful for religious people, for whom the range of palliative and end-of-life care options is often thought to be relatively narrow. (shrink)

BackgroundThe expressions of a “wish to hasten death” or “wish to die” raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the “wish to hasten death/die” based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if (...) and how the meanings behind the “wish to hasten death/die” relate to and are interpreted in light of ethical principles in palliative care.MethodsWe conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare’s framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330.ResultsOut of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the “wish to hasten death” and/or “wish to die” were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the “wish to hasten death”. Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles.ConclusionsThis meta-ethnographic review shows a reduced number of qualitative studies on the “wish to hasten death” and/or “wish to die” explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed. (shrink)

The increasing life expectancy of terminally-ill people has raised many public policy concerns about end-of-life care. Due to increased longevity and the lack of cures for illnesses like cancer and heart disease, palliative care, particularly pain management, has become an important mode OF medical therapy. Palliative care providers feel that “[h]ealth care professionals have a moral duty to provide adequate palliative care and pain relief, even if such care shortens (...) the patient’s life.” Practitioners of forensic medicine grapple with determining when to classify the death of a person formerly receiving palliative care as a non-natural death. Such classification may be paramount in the enforcement of new statutes that aim at preventing assisted suicide or monitoring the quality of health care, but it potentially places forensic medicine and palliative medicine in adversarial roles. (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)

Background Palliative care needs in older persons can endanger their dignity. To provide dignity-conserving care to older persons, the Swedish Dignity Care Intervention (DCI-SWE) can be used. The DCI-SWE is built on Chochinov’s dignity model and the original version, developed and tested in UK and Scotland. Aim To describe older persons’ and their relatives’ experiences of dignity and dignity-conserving care when using the DCI-SWE in municipal health care. Research design A mixed method study with (...) convergent parallel design. Participants and research context The DCI-SWE was used and evaluated in a Swedish municipality health care context. Older persons’ ( n=17) dignity-related distress and quality of life were assessed after the intervention. Interviews with older persons ( n=10) and their relatives ( n=8) were analysed using thematic analysis. Ethical considerations The study followed the World Medical Association Declaration of Helsinki. Ethical approval was obtained from the Regional Ethical Review Board in Uppsala, Sweden (Reg No. 2014/312) and the National Swedish Ethical Review Authority (Reg. No. Ö 10-2019). Informed consent was collected from older persons and their relatives. Findings The older persons’ dignity-related distress did not significantly change over time ( p = 0.44) neither was their overall quality of life ( p =.64). Only psychological quality of life was decreased significantly ( p = 0.01). The older persons and their relatives emphasized the importance of valuing the individual. Conclusions The DCI-SWE provides a forum to talk about dignity issues, but relevant competence, continuity and resources are needed. Psychological care actions and health care professionals’ communication skills training are important. To fully evaluate, the DCI-SWE a larger sample and validated instruments are necessary. (shrink)

Cuidados paliativos: solución ética acorde con la dignidad humana al final de la vida Cuidados paliativos: solução ética de acordo com a dignidade humana no final da vida It is said that passing laws to legalize euthanasia is absolutely necessary but, in my opinion, it is more pressing to enact a law for the patient to access a universal palliative care service at the end of their life than a law on euthanasia. This article discusses the difference (...) between euthanasia and palliative care. It is affirmed that being in favor of the latter does not mean wanting the patient to be in pain and to suffer, nor extending their life unreasonably. However, opting for palliative care is, on the one hand, what the physician can ethically do as a health worker and, on the other, the only morally acceptable alternative to the natural end of human beings that is appropriate to their dignity. Therefore, palliative care immerses us in an anthropological reflection about our own limitation and fragility, since respect for human life and palliative care dignify the process of dying. Para citar este artículo / To reference this article / Para citar este artigo Zurriaráin RG. Cuidados paliativos: solución ética acorde con la dignidad humana al final de la vida. Pers Bioet. 2019; 23: 180-193. DOI: https://doi.org/10.5294/pebi.2019.23.2.2 Recibido: 08/04/2019 Aceptado: 24/07/2019. (shrink)

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of (...) euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors. (shrink)

Background: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient’s quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients’ and their relatives’ needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients (...) through the process of shared knowledge between nurses, patients and their relatives. Aim: The aim of this study was to explore nurses’ experiences of caring encounters and co-creation in palliative home care from an ethical perspective. Research design, participants, and research context: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. Ethical considerations: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Findings: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient’s wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. Discussion: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses’ ethical competence. Conclusion: Patients’ dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients’ perspectives should be the focus of future research. (shrink)

Objectives Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. Methods The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at (...) a tertiary hospital in Germany. The transcripts were subjected to qualitative content analysis. Results Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Conclusion Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment. (shrink)

Background How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists. Methods Semi-structured interviews with six nurses and six doctors working in palliative (...) class='Hi'>care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework. Results Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control. Conclusions If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved. (shrink)

The ageing populations of the Western world present a wide range of economic, social, and cultural implications, and given the challenges posed by deteriorating maintenance ratios, the scenario is somewhat worrying. In this paper, I investigate whether Martha C. Nussbaum's capabilities approach could secure dignity for older people in long‐term care, despite the per capita decreases in resources. My key research question asks, ‘What implications does Nussbaum's list of central human capabilities have for practical social care?’ My methodology (...) combines Nussbaum's list with ethnographic data gathered from a Finnish sheltered home for older people. On the basis of this study, it seems that the capabilities approach is a plausible framework for the ethics of care because it highlights differences in the ability to function and thus differences in opportunities to pursue a good life. The ideas presented in this article could assist social policy planners and executives in creating policies and practices that help old people to maintain their dignity until the end of their days. (shrink)

In a recent article,1Riisfeldt attempts to show that the principle of double effect (PDE) is unsound as an ethical principle and problematic in its application to palliative opioid and sedative use in end-of-life care. Specifically, he claims that (1) routine, non-lethal opioid and sedative administration may be “intrinsically bad” by PDE’s standards, (2) continuous deep palliative sedation (or “terminal sedation”) should be treated as a bad effect akin to death for purposes of PDE, (3) PDE cannot (...) coherently be applied in cases where death “indirectly” furthers an agent’s intended end of pain relief via medically appropriate palliative care, and (4) application of PDE requires sacrificing common beliefs about the sanctity of human life. I respond by showing that Riisfeldt’s understanding of PDE is seriously mistaken: he misattributes Kantian and Millian reasoning to the principle and conflates acts’ intrinsic properties with their effects. Further, a corrected understanding of PDE can address Riisfeldt’s case-specific objections. (shrink)

Medical assistance in dying (MAiD) and palliative sedation (PS) are both legal options in Canada that may be considered by patients experiencing intolerable and unmanageable suffering. A contentious, lively debate has been ongoing in the literature regarding the similarities and differences between MAiD and PS. The aim of this paper is to explore the propositions that MAiD and PS are essentially similar and conversely that MAiD and PS are distinctly different. The relevance of such a debate is apparent for (...) clinicians and patients alike. Understanding the complex and multi‐faceted nuances between PS and MAiD allows patients and caregivers to make more informed decisions pertaining to end‐of‐life care. It is hoped that this paper will also serve to foster further debate and consideration of the issues associated with PS and MAiD with a view to improve patient care and the quality of both living and dying in Canada. (shrink)

Background Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. Aim The aim of this study was to explore palliative care physicians’ experiences of ethical challenges in relation to thirst in terminally (...) ill patients. Methods A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient’s autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. Conclusions All physicians in this study reported that “Starting, continuing or discontinuing drips” was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular. (shrink)

As part of a European Erasmus Plus project entitled Death Education for Palliative Psychology, this study assessed the ways in which Master’s Degree students in psychology and the creative arts therapies self-rated their confidence and interest in death education and palliative and bereavement care. In five countries (Austria, Israel, Italy, Poland, Romania), 344 students completed an online questionnaire, and 37 students were interviewed to better understand their views, interest, and confidence. The results revealed some significant differences between (...) countries, and showed that older respondents with previous experience as formal caregivers for end-of-life clients showed greater interest in obtaining practical clinical competence in these fields. A mediation analysis indicated that students’ previous care experiences and past loss experiences were related to students’ current interest in death education and palliative and bereavement care through the mediation of their sense of confidence in this field. The qualitative findings identified five shared themes: life and death, learning about death, the psychological burden, personal experience and robust training, and four key training needs. Overall, students’ interest in studying and working with terminal illness and death are rooted in internal resources, a preliminary sense of confidence, but also external requirements. (shrink)

In Ending Midlife Bias: New Values for Old Age, I argued that dignity can give practical guidance for patient care, especially dementia care.1 Using a capability-informed analysis, I detailed threats to central human capabilities that undermine dignity for people with dementia and provide practical suggestions for managing these threats in paradigm cases. In an article in this issue, Hojjat Soofi argues that a capability-informed account of dignity is exclusionary of people with dementia and does not translate into practical (...) ethics guidance.2 Soofi maintains that people with intellectual impairment ‘might not be able to exercise (or even have access to)’ the capabilities in question (Soofi, p4).2 Focusing on Nussbaum’s capability view, Soofi cautions, it gives a narrow, blinkered assessment of what it means to live a full and flourishing human life. In this commentary, I argue that Soofi’s critique of the capability view hastily generalises from a narrow set of premises to expansive, unwarranted conclusions. Soofi’s first objection, that a capability view of dignity excludes people with dementia, is a sweeping and strong claim. In its support, Soofi cites dignity of the Kantian sort, which requires ‘cognitive competence to exercise rational agency,’ to argue that ‘if we want to include people with dementia in the circle of human beings …. (shrink)