Costs at the end of life disproportionately contribute to health care costs in the United States. Addressing these costs will therefore be an important component in making the U.S. health care system more financially sustainable. In this paper, we explore the moral justifications for having discussions of end-of-life costs in the doctor-patient encounter as part of an effort to control costs. As health care costs are partly shared through pooled resources, such as insurance and taxation, (...) and partly borne by individuals through out-of-pocket expenses, we separate our defense for, and approach to, discussing both pooled and individual aspects of cost. We argue that there needs to be a shift away from formulating the options as a dichotomous choice of paying attention to end-of-life costs versus ignoring such costs. The question should be how personal costs will be managed and how societal expenditures should be allocated. These are issues that we believe patients care about and need to have addressed in a manner with which they are comfortable. Conversations about how money will be spent at the end of life should begin before the end is near. We propose discussing costs from the onset of chronic illness and incorporating financial issues in advance care planning. Through these approaches one can avoid abruptly and insensitively introducing financial issues at the very conclusion of a person's life when one would prefer to address the painful and important issues of spiritual and existential loss that are appropriately the focus when a person is dying. (shrink)

We are grateful to the commentators on our article1 for their thoughtful engagement with the ethical and clinical complexity of expanded terminal sedation (ETS) in end-of-life care. We will start by noting some points of common ground, before moving on to the more challenging ways in which TS might be permissibly expanded. First, several commentators pointed out, and we completely concur, that it is important to provide patients with full information about their end-of-life options, including the ‘outcomes, uncertainties (...) and costs of ETS’.2 Where possible, they should be given time to ‘process their feelings and to reflect on how they wish to live in their last few days, weeks or months’.3 Furthermore, where patients receive sedation, it will be critical that they receive appropriate medical and nursing care to prevent physical complications such as pressure ulcers.2 This would be no different from other patients who are in states of reduced consciousness from disease. We acknowledge that there are heightened risks with earlier and more rapid TS, including the potential loss of spiritual and social moments,4 as well as the meaning that can be derived from conscious existential distress.3 However, while these conscious experiences might be valuable to some, others might weigh them less highly against the foreseen …. (shrink)

This article examines the compatibility and relevance of Gabriel Marcel’s phenomenology of hope in interdisciplinary research on the role of hope in end-of-life care. Our analysis is divided into three thematic topics which examine the various shades of hope observed in Marcel’s phenomenology of hope and in the collection of 20 EOL studies on hope as experienced by adult palliative care patients, health care professionals and parents of terminally ill children. The three topics defining the shades of hope (...) are: the meaning of hope in its dynamic aspects, the dialectics of hope and despair, and the transcendent facets of hope. We analyse how Marcel’s understanding of hope is reflected in EOL studies, and how this perception can enrich the philosophy of PC and significantly deepen and broaden HCPs’ understanding of hope. Our findings prove that despite terminological differences between Marcelian phenomenology and the concepts of hope in the 20 EOL studies, hope emerges as a resourceful movement towards being. Implementing Marcelian hope within communication in EOL care could help in HCPs’ interpersonal approach to patients as his concept harbors a holistic perception of the existential situation of a person. Equally, introducing Marcel’s phenomenology of hope into the clinical encounter could play a beneficial role in improving the ability of patients to adapt to the difficult conditions of their disease and PC treatment. (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)

Physician religion/spirituality has the potential to influence the communication between physicians and parents of children at the end of life. In order to explore this relationship, the authors conducted two rounds of narrative interviews to examine pediatric physicians’ perspectives (N=17) of how their religious/spiritual beliefs affect end–of–life communication and care. Grounded theory informed the design and analysis of the study. As a proxy for religiosity/spirituality, physicians were classified into the following groups based on the extent to which (...) religious/spiritual language was infused into their responses: Religiously Rich Responders (RRR), Moderately Religious Responders (MRR), and Low Religious Responders (LRR). Twelve of the 17 participants (71%) were classified into the RRR or MRR groups. The majority of participants suggested that religion/spirituality played a role in their practice of medicine and communication with parents in a myriad of ways and to varying degrees. Participants used their religious/spiritual beliefs to support families’ spirituality, uphold hope, participate in prayer, and alleviate their own emotional distress emerging from their patients’ deaths. (shrink)

Background: Moral distress has been identified as a significant issue in nursing practice for many decades. However, most studies have involved American nurses or Western medicine settings. Cultural differences between Western and non-Western countries might influence the experience of moral distress. Therefore, the literature regarding moral distress experiences among non-Western nurses is in need of review. Aim: The aim of this integrative review was to identify, describe, and synthesize previous primary studies on moral distress experienced by non-Western nurses. Review method: (...) Whittemore and Knafl’s integrative review methodology was used to structure and conduct the review of the literature. Research context and data sources: Key relevant health databases included the Ovid MEDLINE, CINAHL, Web of Science, and Google Scholar databases. Two relevant journals, Nursing Ethics and Bioethics, were manually searched. Ethical consideration: We have considered and respected ethical conduct when performing a literature review, respecting authorship and referencing sources. Findings: A total of 17 primary studies published between 1999 and 2019 were appraised. There was an inconsistency with regard to moral distress levels and its relationship with demographic variables. The most commonly cited clinical causes of moral distress were providing futile care for end-of-life patients. Unit/team constraints (poor collaboration and communication, working with incompetent colleagues, witnessing practice errors, and professional hierarchy) and organizational constraints (limited resources, excessive administrative work, conflict within hospital policy, and perceived lack of support by administrators) were identified as moral distress’s stimulators. Negative impacts on nurses’ physical, psychological, and spiritual well-being were also reported. Conclusion: Further research is needed to investigate moral distress among other healthcare professions which may further build understanding. More importantly, interventions to address moral distress need to be developed and tested. (shrink)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. (...) Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions. (shrink)

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

Explore the Resistance to Death, and Awaken More Fully to Life Death is simply one more aspect of being a human being, but in our culture, we've made it a taboo. As a result, most of us walk through life with conscious or unconscious fears that prevent us from experiencing true contentment. Embracing the End of Life invites you to lean into your beliefs and questions about death and dying, helping you release tense or fearful energy and (...) awaken to a more vital life now. Preparing mentally, emotionally, and spiritually for this inevitable transition provides improved clarity and strength. This book shares the idea of death as a journey of three steps—resistance, letting go, and transcendence. With dozens of exercises, practices, and meditations, author Patt Lind-Kyle helps you experience your truest, most expansive self. Exploring multiple aspects of life and death—with everything from chakras and the Enneagram to living wills and health care directives—this book is meant to help you unwind the challenge of death and discover the truth of your own path to inner freedom. Praise: "The fear of dying keeps countless people from living fully—as well as keeping countless others trapped in endless suffering. Embracing the End of Life will help all of us prepare joyously for the inevitable."—Christiane Northrup, MD, New York Times bestselling author of Goddesses Never Age Winner of a 2018 Gold IPPY Award. (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)

The aim of this study was to describe Tanzanian nurses' meaning of and experiences with ethical dilemmas and workplace distress in different care settings. An open question guide was used and the study focused on the answers that 29 registered nurses supplied. The theme, `Tanzanian registered nurses' invisible and visible expressions about existential conditions in care', emerged from several subthemes as: suffering from (1) workplace distress; (2) ethical dilemmas; (3) trying to maintaining good quality nursing care; (4) lack of (...) respect, appreciation and influence; and (5) a heavy workload that did not prevent registered nurses from struggling for better care for their patients. The analysis shows that, on a daily basis, nurses find themselves working on the edge of life and death, while they have few opportunities for doing anything about this situation. Nurses need professional guidance to gain insight and be able to reflect on their situations, so that they do not become overloaded with ethical dilemmas and workplace distress. (shrink)

Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework (...) for the review; (3) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life. (shrink)

Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework (...) for the review; (3) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life. (shrink)

Background Nurses providing care to patients with end-of-life or terminal illnesses often encounter ethically challenging situations leading to moral distress. However, existing quantitative studies have examined moral distress using instruments that address general clinical situations rather than those specific to end-of-life care. Furthermore, qualitative studies have often been limited to participants from a single unit or those experiencing moral distress-induced circumstances. A comprehensive and integrated understanding of the overarching process of moral distress is vital to discern the unique (...) circumstances surrounding end-of-life care and its consequential impacts. Research objectives To explore the moral distress experiences of nurses who are frequently involved in caring for patients with end-of-life or terminal illnesses and apply it to two existing theories: the model of moral distress and the ecological model. Research design A qualitative descriptive approach was employed. Participants and research context Seven focus group interviews involving 30 nurses were performed. The subsequent transcriptions underwent rigorous content analysis. Ethical considerations We obtained Institutional Review Board approval from a university. Focus group interviews were conducted with nurses who agreed to participate and signed the consent form. Findings The moral distress-inducing factors and nurses’ perceived impact of moral distress were identified and categorized based on moral distress theories and ecological models. A total of 15 categories and 30 subcategories across the following 4 domains were derived: (1) intrapersonal, (2) interpersonal, (3) organizational, and (4) structural factors. Conclusions End-of-life-specific circumstances induced moral distress among nurses, with both negative and positive impacts identified. Effective organizational and policy support is essential to manage conflicts, form a healthy organizational culture, provide training, and prevent unnecessary expenses due to the negative consequences of moral distress. (shrink)

In assisted dying, the end-of-life trajectory is shortened to relieve unbearable suffering. Unbearable suffering is defined broadly enough to include cognitive (early dementia), psychosocial or existential distress. It can include old-age afflictions that are neither life-threatening nor fatal in the “vulnerable elderly”. The voluntary refusal of food and fluids (VRFF) combined with continuous deep sedation (CDS) for assisted dying is legal. Scientific understanding of awareness of internal and external nociceptive stimuli under CDS is rudimentary. CDS may blunt (...) the wakefulness component of human consciousness without eradicating internal affective awareness of thirst and hunger. Patients may suffer because of the slow dying process following dehydration and starvation. The difficulty to adequately control distress, without bringing the dying process to a rapid conclusion by lethal pharmacological interventions, can cause feelings of guilt among hospice and medical staff. Furthermore, the double-effect principle is not applicable in these situations because the primary objective of VRFF is to hasten death. Legal and societal debate should focus on sharpening the boundaries between assisted dying and palliative care. This separation is necessary to: 1) uphold trust in the patient-phyician relationship, and 2) preserve integrity and ethics of the medical profession. (shrink)

Immediately following the approval of the Belgian law on euthanasia, Caritas Catholica Vlaanderen sent a position paper to all affiliated institutions in which its standpoint regarding care for a dignified end of life is clarified. We would like to sketch very briefly the context in which this position paper should be placed, before reproducing the complete text of the recommendation.Caritas Catholica Vlaanderen is an umbrella organization for cooperation and consultation between the Verbond der Verzorgingsinstellingen [Association of Care Institutions], grouping (...) health-care institutions and services, and the Vlaams Welzijnsverbond [Flemish Association for Public Welfare], grouping welfare institutions and services. The Verbond der Verzorgingsinstellingen is responsible for 52 general hospitals, 94 mental-health institutions and 326 geriatric-care institutions. The Vlaams Welzijnsverbond groups 397 facilities for handicapped persons and 344 facilities for public welfare. (shrink)

Research shows that the physician’s personal attributes and social characteristics have a strong association with their end-of-life decision making. Despite efforts to increase patient, family and surrogate input into EOL decision making, research shows the physician’s input to be dominant. Our research finds that physician’s social values, independent of religiosity, have a significant association with physician’s tendency to withhold or withdraw life sustaining, EOL treatments. It is suggested that physicians employ personal social values in their EOL medical coping, (...) because they have to cope with existential dilemmas posed by the mystery of death, and left unresolved by medical decision making mechanisms such as advanced directives and hospital ethics committees. (shrink)

The Institute of Medicine's report, the American Medical Association's project, the Open Society Institute's and the initiative sponsored by the Robert Wood Johnson Foundation have focused attention on improving the care of dying patients. These efforts include advance care planning and the use of written advance directives. Although previous studies have provided quantitative descriptions of patient preferences for life-sustaining treatment, including those documented in written ADs, to our knowledge open-ended written preferences have not been studied. Studies of these open-ended (...) preferences could highlight issues with respect to quality end-of-life care. The purpose of this study was to explore the open-ended proxy, health, and personal care preferences of people with HIV as expressed in a written AD form. (shrink)

In an article recently published in the Journal of Medical Ethics, I assessed the position that voluntary euthanasia and physician-assisted suicide can be appropriate only in cases of persons who are suffering unbearably because they are ill or injured, not in cases of unbearably distressed persons whose suffering is caused by their conviction that their life will never again be worth living. More precisely, I considered one possible way of defending that position, the argument that the latter kind of (...) distress—to which I referred to as existential suffering—does not qualify as grounds for VE and PAS because doctors are not experts on questions pertaining to the meaning, value and purpose of life: existential questions, as I called them. I maintained that cases of VE and PAS related to illness and injury involve existential questions relevantly similar to those faced in connection with existential suffering. Therefore, I concluded, if VE and PAS based on suffering arising from illness or injury falls within the domain of medical expertise, it is consistent that VE and PAS cannot be denied in cases of purely existential suffering by maintaining that the professional expertise of doctors does not extend to existential questions.1The article inspired some interesting discussion. Robert Young offered two reasons for thinking that its argument is of limited practical significance.2 Julian Savulescu maintained that, within current medical ethics and human rights, there already is a method of assisted suicide: voluntary palliated starvation , which allows that existential distress can sometimes provide grounds for assisted dying and which could fall within the limits of the law.3 The discussion by Young and Savulescu suggest that my argument, or rather the nature of the project of which it is purported to be a part, could benefit from some clarification. That …. (shrink)

ZusammenfassungDas belgische Parlament verabschiedete am 28. Mai 2002 das Euthanasiegesetz. Hierdurch wurden die verschiedenen Pflegeeinrichtungen mit einem neuen rechtlichen Rahmen konfrontiert. Das neue Gesetz lässt Euthanasie unter bestimmten Voraussetzungen zu. Dieser Beitrag möchte einige Orientierungspunkte für einen vertretbaren Umgang mit dem Euthanasiegesetz in katholischen Pflegeeinrichtungen liefern. Als Ausgangspunkt hierfür gilt der Grundsatz, dass alles Mögliche getan werden muss, um dem Sterbenden und seiner Umgebung den nötigen Beistand und die bestmögliche Betreuung zu geben und seinem Verlangen nach einem menschenwürdigen Lebensende entgegenzukommen. (...) Wird um Euthanasie gebeten, so entscheiden sich die katholischen Pflegeeinrichtungen Belgiens für die palliative Filterprozedur. Bevor hier die Konturen einer solchen Sorge für ein menschenwürdiges Lebensende umrissen werden, werden zunächst einige fundamentale Annahmen zum Menschsein und dem Wert der Autonomie inhaltlich beleuchtet. Der Autor stützt sich hierfür auf eine relationale Auffassung der Person, wie diese innerhalb der personalistischen Strömungen der Ethik entwickelt wird. (shrink)

Moral distress has been written about extensively in nursing and other fields. Often, however, it has not been used with much theoretical depth. This paper focuses on theorizing moral distress using feminist ethics, particularly the work of Margaret Urban Walker and Hilde Lindemann. Incorporating empirical findings, we argue that moral distress is the response to constraints experienced by nurses to their moral identities, responsibilities, and relationships. We recommend that health professionals get assistance in accounting for and communicating their values (...) and responsibilities in situations of moral distress. We also discuss the importance of nurses creating “counterstories” of their work as knowledgeable and trustworthy professionals to repair their damaged moral identities, and, finally, we recommend that efforts toward shifting the goal of health care away from the prolongation of life at all costs to the relief of suffering to diminish the moral distress that is a common response to aggressive care at end-of-life. (shrink)

Background: Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units , including those in Israel. Several results of the Israeli subsample were different to those of the overall sample.Objective: The objective of this article was to explore these differences and provide a (...) possible explanation based on the impact of culture on end of life decision making.Method: All adult patients admitted consecutively to three Israeli ICUs who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively . These patients were compared with a similar sample taken from the larger study carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation , brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process . The data also included patient characteristics , specific therapies limited, and the method of SDP.Results: The majority of patients had treatment withheld, none underwent SDP, 62 received CPR , 31 had brain death , and 18 underwent withdrawal of treatment . The primary reason given for limiting treatment was that the patient was unresponsive to therapy . End of life discussions were held with 132 families , the vast majority of which revolved around withholding treatment and the remainder concerned withdrawing treatment .There was a statistically significant association between the type of end of life decision and region—that is, the northern region of Europe, the central region, the southern region, and Israel.Conclusions: Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions. (shrink)

In 1997, the United States incarcerated over 1.7 million persons in local jails and in state and federal prisons. These inmates are disproportionately poor and persons of color. Many lack adequate access to health care before incarceration and present to correctional services with major unaddressed medical problems.Convictions for drug possession and use have increased the number of injection drug users with HIV and AIDS in prisons. Determinate sentencing and “three strikes and you’re out” laws have increased the number of (...) inmates who are aging and dying during their sentences. Their feelings reflect those of Larry Rideau, sentenced to life without parole and founder of The Angolite—an award-winning prison newspaper at Louisiana's Angola Prison—“The dream of getting out, you equate with heaven. Dying in prison you equate with hell.”. (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)

Background: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. Objective: To describe assistant nurses’ perspectives of providing care to older persons at the end of life in a nursing home. Research design: Data were (...) collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. Participants and research context: Seven assistant nurses from a nursing home in Sweden were randomly selected. Ethical consideration: The research was approved by the local ethics committee. Results: Three main categories emerged; “Death a natural part of life”; “The older person’s well-being”; and “Care in the moment of death”; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons’ dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. Discussion: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. Conclusion: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development. (shrink)

Moral distress is an experience of profound moral compromise with deeply impactful and potentially long‐term consequences to the individual. Critical care areas are fraught with ethical issues, and end‐of‐life care has been associated with numerous incidences of moral distress among nurses. One such area where the dichotomy of life and death seems to be at its sharpest is in the pediatric intensive care unit. The purpose of this study was to understand the moral distress experiences of pediatric intensive (...) care nurses when caring for pediatric patients at the end of life. A secondary analysis was undertaken of seven transcripts from registered nurses across six Canadian pediatric intensive care units and produced three themes: under prioritization of child patient dignity, burden of insider knowledge, and environmental constraints on nursing roles and responsibilities. When caring for patients at the end of life, nurses experienced moral distress when a dignified death was not realized. Furthermore, despite interprofessional collaboration efforts in Canada, the concept of silo mentality persists and contributes to moral distress. Organizational involvement is needed to address moral distress in pediatric intensive care nurses both to achieve a dignified death for child patients and in addressing silo mentality. (shrink)

In 1997, the United States incarcerated over 1.7 million persons in local jails and in state and federal prisons. These inmates are disproportionately poor and persons of color. Many lack adequate access to health care before incarceration and present to correctional services with major unaddressed medical problems.Convictions for drug possession and use have increased the number of injection drug users with HIV and AIDS in prisons. Determinate sentencing and “three strikes and you’re out” laws have increased the number of (...) inmates who are aging and dying during their sentences. Their feelings reflect those of Larry Rideau, sentenced to life without parole and founder of The Angolite—an award-winning prison newspaper at Louisiana's Angola Prison—“The dream of getting out, you equate with heaven. Dying in prison you equate with hell.”. (shrink)

On 19 June 2019, Victoria's 'Voluntary Assisted Dying' Act came into effect. The Act makes legal two interventions at the end of life. In most cases, it allows a doctor to prescribe a patient who meets certain criteria with a lethal substance, which it is supposed a patient will take at a time and place of their choosing to end their life. In rarer cases, where a patient is unable to ingest the lethal substance, it also allows for (...) a doctor to administer such a substance to the same end. In the Victorian legislation these interventions have been given the umbrella term of 'Voluntary Assisted Dying'. In Catholic ethics, as in most bioethical frameworks, these acts are referred to as physician-assisted suicide and euthanasia. (shrink)

In the last two decades, studies on the relationship between spirituality and health have grown significantly in the International literature. In Brazil, the debate on this subject has reached greater visibility since 2009, mainly in the health sciences, with the appearance of the term "spiritual care". In theology, studies on spiritual care in the health care context are still scarce. This paper aims to contribute to the broadening of this reflection. Firstly, spiritual care is (...) approached from scientific publications in Portuguese language. Second, the interdisciplinary spiritual care model is presented as a holistic approach to patient care and consequences of applying a spiritual care model are outlined. The newly defined role of the hospital chaplains, pastoral counselors and spiritual caregivers is also discussed. As a conclusion, the paper mentions the main challenges going along with interdisciplinary spiritual care, especially those concerning the training of health care professionals. (shrink)

Amongst traditionally-available frameworks within which end-of-life decisions in Intensive Care Units (ICU) are situated, we favour Ordinary versus Extra-ordinary care distinctions as the most helpful. Predicated on this framework, we revisit the concepts of personhood and autonomy. We argue that a full account of personhood locates its foundation in relationships with others, rather than merely in “rationality”. A full account of autonomy also recognises relationships with others, as well as the actual reality of the patient’s situation-in-the-world. The fact that, (...) when critically ill, the patient may no longer be able to take an active role in decision-making does not bring about the end of their personhood, or of their autonomy. Because the patient’s autonomy is intimately linked to their relationships with others, once critical illness supervenes, respect for their autonomy devolves to those others with whom the patient is in relationship. In practical application, this means that there must be a dialogue, as the end-of-life of the critically-ill patient in ICU comes into view. Such dialogue should be grounded on this understanding in order to conform best to moral philosophical principles. Ideally the dialogue will involve all those with whom the patient is in relationship and, practical difficulties within an ICU notwithstanding, will aim to be inclusive, non-coercive and reflective as it seeks to maximise the good of the patient in their unique context. (shrink)

Concerns about caregivers providing religious or spiritual care arise, in large part, out of a misunderstanding about religion and spirituality and what those terms really mean. Many people treat religion and spirituality as special and unique. This chapter argues that religion and spirituality are basic human facts as inseparable from what it means to be human in the same way as our sex, our age, our ethnicity or the other social and cultural factors that caregivers routinely address. The chapter (...) begins by offering a functionalist definition of religion and spirituality. It then examines research on the needs of patients at the end of life and suggests how these express religious and spiritual concerns. Finally, it offers guidelines as to how the caregiver may meet those needs of a patient. (shrink)

The aim of this study was to assess attitudes of intensive care nurses to selected ethical issues related to end-of-life decisions in paediatric intensive care units. A self-administered questionnaire was distributed in 2005 to intensive care nurses at two different scientific occasions in Turkey. Of the 155 intensive care nurse participants, 98% were women. Fifty-three percent of these had intensive care experience of more than four years. Most of the nurses failed to agree about withholding (65%) or withdrawing (60%) (...) futile treatment. In addition, 68% agreed that intravenous nutrition must continue at all costs. In futile treatment cases, the nurses tended to leave the decision to parents or act maternalistically. The results showed that intensive care nurses could ignore essential ethical duties in end-of-life care. We suggest that it is necessary to educate Turkish intensive care nurses about ethical issues at the end of life. (shrink)

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based on a medical (...) model and are restrictive in terms of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers. (shrink)

Quantitative studies have assessed nurses’ attitudes toward and frequency of spiritual care [SC] and which factors are of influence on this attitude and frequency. However, we had doubts about the construct validity of the scales used in these studies. Our objective was to evaluate scales measuring nursing SC. Articles about the development and psychometric evaluation of SC scales have been identified, using, Web of Science, and CINAHL, and evaluated with respect to the psychometric properties and item content of the (...) scales. Item content was evaluated by each of the five authors with respect to the following questions: Does the item (1) reflect a general opinion about SC instead of a personal willingness to offer SC; (2) reflect general psychosocial care instead of specific SC; (3) focus solely on religious care; (4) contain the words ‘spiritual’ (care/needs/health/strengths, etc.); and (5) contain multiple propositions, or have an unclear meaning? We found eight scales. Psychometric analysis of these scales was often meager and the items of all but one scale suffered from two or more of the five problems described above. This leads us to conclude that many quantitative results in this area are based on findings with questionable scales. Suggestions for improvements are provided. (shrink)

Ethicists and physicians all over the world have been working on triage protocols to plan for the possibility that the Covid‐19 pandemic will result in shortages of intensive care unit beds, ventilators, blood products, or medications. In reflecting on those protocols, many health care workers have noticed that, outside the pandemic shortage situation, we routinely supply patients in the ICU with invasive and painful care that will not help the patients survive even their hospitalization. This is the kind of (...) pointless care that even the most basic protocol would triage against. Perhaps this widespread reflection on triage standards will draw our attention to our ongoing custom of supplying burdensome and inefficacious care to those near the end of life—care that most health care providers would not want for themselves. This essay argues that reflecting on triage could help us improve end‐of‐life care. (shrink)

This study examines the impact of the level of religious observance on the attitudes toward end‐of‐life (EOL) decisions and euthanasia of Jews in Israel—where euthanasia is illegal—as compared to Jews living in the USA, in the states where euthanasia is legal. A self‐reporting questionnaire on religiosity and personal beliefs and attitudes regarding EOL care and euthanasia was distributed, using a convenience sample of 271 participants from Israel and the USA. Findings show that significant differences were found in attitudes between (...) Jews of different levels of religious observance with respect to patient autonomy, right to die with dignity, and dying in familiar and supportive surroundings. The USA and Israeli Jews have similar knowledge regarding EOL care and expressed similar attitudes and perceptions toward the issues of authority of medical staff and religious figures and patient's autonomy. Findings indicate that the level of religious observance has more potency in shaping their attitudes and perceptions of EOL decisions than the state law. We conclude by discussing the implications of our findings with regard to multicultural health systems and providing practical recommendations. (shrink)

Human death is a mystery. Although scientists have identified the criteria, states, and signs of biological death, undoubtedly the issues of dying and death have a wider meaning. In this book, the authors present current research in the study of the ethical issues, practices and challenges of end-of-life care. Topics discussed include a spiritual perspective of end-of-life experiences; a veterinary oncologist's interprofessional crossover perspective of euthanasia for terminal patients; diabetes and end-of-life care; helping families to cope (...) after the death of a loved one; multidimensional aspects of nursing care for dying patients; spirituality at the end-of-life; challenges of promoting end-of-life care in residential care homes in Hong Kong; and the current situation and challenges of home end-of-life care for the elderly in Japan. (shrink)

Although clinical ethics consultation has existed for more than 40 years in the USA and Europe, it was not available in Bulgaria until recently. In introducing clinical ethics consultation into our country, the Modular, Ethical, Treatment, Allocation of resources, Process methodology has been preferred because of its potential to be used in resource-poor settings and its strong educational function. This paper presents the results of a METAP evaluation in a hospital palliative care ward in the town of Vratsa. The evaluation (...) was based on Beauchamp and Childress’ four principles of biomedical ethics and involves implementation of specific instruments for clinical ethics decision-making. Research tasks emphasised analyses of ethics meetings in the ward. Data were processed by SPSS v.24 using descriptive statistical analysis. Altogether, 32 ethics meetings of an average duration 20.63 min were conducted on cases involving critically ill patients. Most of the participants expressed satisfaction with the ethics process. The principlist approach supported resolution of conflicts between autonomous patients and their relatives, clarified definitions of “medical benefit” and “social good,” and enabled assessments of the risk of unequal treatment. Even as the specific research tasks were achieved, further participant follow-up is necessary to identify any improvement in healthcare personnel’s ethical competence. METAP worked well in end-of-life care settings. Participants experienced several benefits, including improved team communication, better understanding of patient preferences, and confidence in the correctness of decisions. Despite the significant educational potential of METAP, the need for additional and ongoing ethics training of health professionals should not be underestimated. (shrink)

Moral distress has been covered extensively in the nursing literature and increasingly in the literature of other health professions. Cases that cause nurses’ moral distress that are mentioned most frequently are those concerned with prolonging the dying process. Given the standard of aggressive treatment that is typical in intensive care units (ICUs), much of the existing moral distress research focuses on the experiences of critical care nurses. However, moral distress does not automatically occur in all end-of-life circumstances, nor (...) does every critical care nurse suffer its damaging effects. What are the practices of these nurses? What specifically do they do to navigate around or through the distressing situations? The nursing literature is lacking an answer to these questions. This article reports a study that used narrative analysis to explore the reported practices of experienced critical care nurses who are skilled at and comfortable working with families and physicians regarding the withdrawal of aggressive treatment. A major finding was that these nurses did not report experiencing the dam-Moral Agency, Moral Imagination, and Moral Community: Antidotes to Moral Distress Terri Traudt, Joan Liaschenko, and Cynthia Peden-McAlpine Terri Traudt, MBC, MA, is a Communications Consultant specializing in bioethics at the Center for Bioethics at the University of Minnesota, in Minneapolis. [email protected] Joan Liaschenko, PhD, RN, FAAN, is a Professor at the Center for Bioethics and Nursing at the University of Minnesota. Cynthia Peden-McAlpine, PhD, ACNS, BC, is an Associate Professor in the School of Nursing at the University of Minnesota. © 2016 by The Journal of Clinical Ethics. All rights reserved. aging effects of moral distress as described in the nursing literature. The verbal communication and stated practices relevant to this finding are organized under three major themes: (1) moral agency, (2) moral imagination, and (3) moral community. Further, a total of eight subthemes are identified. The practices that constitute these themes and subthemes are further detailed and discussed in this article. Understanding these practices can help mitigate critical care nurses’ moral distress. (shrink)

Existing regulation of end-of-life care is flawed. Problems include poorly-designed laws, policies, ethical codes, training, and funding programs, which often are neither effective nor helpful in guiding decision-making. This leads to adverse outcomes for patients, families, health professionals, and the health system as a whole. A key factor contributing to the harms of current regulation is a siloed approach to regulating end-of-life care. Existing approaches to regulation, and research into how that regulation could be improved, have (...) tended to focus on a single regulatory instrument (e.g., just law or just ethical codes). As a result, there has been a failure to capture holistically the various forces that guide end-of-life care. This article proposes a response to address this, identifying “regulatory space” theory as a candidate to provide the much-needed holistic insight into improving regulation of end-of-life care. The article concludes with practical implications of this approach for regulators and researchers. (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)

BackgroundIn research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient’s quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients’ and their relatives’ needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life.AimThe (...) aim of this study was to explore nurses’ experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care.Research design, participants, and research contextThe material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis.Ethical considerationsInformed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study.FindingsA main theme and four subthemes emerged. The main theme was “Deep co-creative relationships are needed to manage ethical and existential issues at the end of life.” A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care.DiscussionTogether, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses’ ethical competence within this context.ConclusionThe quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients’ perspective. (shrink)

BackgroundCompetent end-of-life care is an essential component of total health care provision, but evidence suggests that it is often deficient. This study aimed to evaluate the knowledge and attitudes about key end-of-life issues and principles of good death among doctors in clinical settings.MethodsA cross-sectional study was conducted among allopathic medical doctors working in in-ward clinical settings of tertiary care hospitals in Sri Lanka using a self-administered questionnaire with open- and close-ended questions as well as hypothetical clinical scenarios. (...) Univariate and logistic regression analysis were used to identify the independent factors associated with knowledge and attitudes.ResultsOf the responders who had not been a caregiver for a terminally ill relative (n = 390), 57.9% were men with a mean age of 36.5 years (SD = 8.2). Compared to undergraduate (65.6%; n = 256), only 27.4% (n = 107) had received end-of-life care training at postgraduate level. Only 65.9% of doctors favoured disclosing terminal prognosis to patients; 27.7% of doctors were aware of advance directives; 14.6% were aware of the correct time of death when certifying brain death; 70.3% felt more comfortable in withholding than withdrawing life-sustaining treatment; 61.3% were aware of do-not-attempt cardiopulmonary resuscitation (DNACPR) decisions while 26.7% felt reluctant to administer it; 15.1% thought that all life-sustaining therapy should be withdrawn with a DNACPR decision; and only17.9% were able to name the four principles of medical ethics while 57.9% could not name a single. Participants scored a mean of 9.2 (SD = 3.9) of a maximum 14 points when tested on principles of a ‘good death’. Doctors who had pursued postgraduate studies were more likely to be aware of breaking bad news (adjusted-Odds-Ratio:1.99; 95%CI = 1.19–3.32), advance directives (adjusted-OR: 4.15; 95%CI = 2.49–6.94), aware of certifying the correct time of death (adjusted-OR:2.37; 95%CI = 1.33–4.2) and less reluctant to make DNACPR decisions (adjusted-OR:1.74; 95%CI = 1.13–2.68). Doctors who had worked in ICU were more comfortable withholding than withdrawing treatment (adjusted-OR:1.99; 95%CI = 1.2–3.31).ConclusionsKnowledge and attitudes about end-of-life care, good death and principles of medical ethics among doctors in Sri Lanka were suboptimal. Structured training of end-of-life care needs to be integrated within curricula and in-service training. (shrink)

Parents have the autonomous right to choose or refuse a treatment for their child, even those that are life sustaining, if it is extraordinary or disproportionate and it is within the best interest and well-being of their child. Pediatric health care is practiced with the goal of promoting the best interests of the child to do so. Treatment is generally rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and (...) burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. (shrink)

The authors’ aim is to bring to the attention of readers the inadequacies of care for people in Hungary who are terminally ill. They believe that both objective and subjective factors cause these inadequacies. Most of these factors arise from moral dilemmas that could be eased or even solved if ethics education had a much more prominent place in the nursing curriculum. Even if nurses would not become automatically better persons morally, a much wider knowledge of medical/nursing ethics could significantly (...) improve nursing care both before and at the end of life. Although the article is also critical of the nursing care provided, it is not its purpose to make any generalizations. The study utilized selected passages from essays written by 76 practicing nurses on their personal experience of ethical dilemmas in their work environment, and a questionnaire administered to 250 students (registered nurses and health care students) studying for a college degree. This article is written by two authors who have formed an unusal alliance: a registered nurse with 29 years’ experience of bedside nursing, but who is currently a teacher of nursing ethics at a local health college, and a lawyer turned bioethicist. (shrink)