Good nursing is more than exercising a specific set of skills. It involves the personal identity of the nurse. The aim of this article is to answer two questions: (1) what kind of person should the hospice nurse be? and (2) how should the hospice nurse engage in caring conversations? To answer these questions we analyse a nurse’s story that is intended to be a profile of an exemplary hospice nurse. This story was constructed from an (...) analysis of five semistructured interviews with hospice nurses, based on the ‘ethics of the caring conversation’, which is inspired by the ethical perspective of Paul Ricoeur. The research questions concentrate on the norms of respect, responsibility and reciprocity, which are integral parts of the ‘ethics of the caring conversation’. (shrink)

ABSTRACT Objectives There is little research on moral uncertainties and distress of palliative and hospice care providers (PHCPs) working in jurisdictions anticipating legalising voluntary assisted dying (VAD). This study examines the perception and anticipated concerns of PHCPs in providing VAD in the State of Queensland, Australia prior to legalisation of the practice in 2021. The findings help inform strategies to facilitate training and support the health and well-being of healthcare workers involved in VAD. Design The study used a (...) qualitative approach to examine and analyse the perception and anticipated concerns of PHCPs regarding challenges of providing assisted dying in Queensland. Fourteen PHCPs were recruited using a purposive sampling strategy to obtain a broad representation of perspectives including work roles, geographical locations and workplace characteristics. Data were collected via one in-depth interview per participant. The transcripts were coded for patterns and themes using an inductive analysis approach following the tradition of Grounded Theory. Setting The study was conducted in hospital, hospice, community and residential aged care settings in Queensland, Australia. These included public and private facilities, secular and faith-based facilities, and regional/rural and urban facilities. Participants Interviews were conducted with fourteen PHCPs: 10 nurses and 4 physicians; 11 female and 3 male. The median number of years of palliative care practice was 17, ranging from 2 to 36 years. For inclusion, participants had to be practising palliative and hospice care providers. Results PHCPs are divided on whether VAD should be considered part of palliative care. Expectations of moral distress and uncertainty about practising VAD were identified in five areas: handling requests, assessing patient capacity, arranging patient transfers and logistical issues, managing unsuccessful attempts, and dealing with team conflicts and stigma. Conclusions The possibility of having to practise VAD causes moral distress and uncertainty for some PHCPs. Procedural clarity can address some uncertainties; moral and psychological distress, however, remains a source of tension that needs support to ensure ongoing care of both patients and PHCPs. The introduction of VAD post-legalisation may present an occasion for further moral education and development of PHCPs. (shrink)

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

Hospice care in the United States has undergone a remarkable transformation since it assumed its modern form in the late 1960s. It began as a movement driven by small organizations staffed with many volunteer providers focusing on comprehensive spiritual, palliative, and mental health services for a relatively small number of terminally ill patients, typically suffering from cancer. The idea behind hospice during its early days was that a terminally patient and his or her family made a decision (...) to focus on easing a patient’s pain and anxiety, making him or her more comfortable, rather than pursuing additional curative treatment. Because these objectives required a wide range of professional and non-professional skills, hospice care involved not only physicians and nurses, but clergy, social workers, volunteer caretakers, homemakers, and, of course, family members. The process of decision-making by the patient and his or her family was never uniform and never systematically studied. (shrink)

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end‐of‐life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end‐of‐life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients’ comfort and dignity were deemed most at stake and therefore commanded nurses’ (...) primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end‐of‐life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients’ subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end‐of‐life care. (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)

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

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 (...) class='Hi'>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, nurses, social workers, and allied health providers. The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at the individual level: a new end-of-life option, patients’ last chance to express control over their lives, patient and family comfort and relief, and a unique learning experience for hospice palliative care providers; the team level: supportive collegial relationships, broadened discussions about end-of-life and palliative care, and team debriefs provide opportunities for education and support; and the institutional level: 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)

In lieu of an abstract, here is a brief excerpt of the content:Pride in Giving Care and Other Life Lessons from Certified Nursing AssistantsDelese WearMy father spent the last three weeks of his life in a hospice care facility. It's funny, now reading these narratives written by Certified Nursing Assistants (CNAs), that I can't picture him without Gloria, the CNA who worked the 7-3 shift, floating quietly in and out of his room, tending to him, (...) tending to us, speaking quietly to Dad even when he was no longer conscious, offering us conversation, often her affectionate observations of Dad and curiosity about his life, sometimes about life on the "outside," a kind of respite from total attention on Dad and our grieving. I remember the smell of the lotion she rubbed on his body. I remember no other caregivers in his room; there obviously were, but I can't picture them now, only Gloria. We never spoke directly to the medical director of the hospice. He was a phantom, rounding at 5 or 6 a.m.; we came to believe he did so to avoid speaking to families.Those three weeks led to my conceptions about CNAs—the nature of the work they do, the kinds of people who do such work, the awesome responsibilities involved in such work, and not least, the physical and emotional resiliency of those who undertake such work. My and my family's often recited, "How does she do this every day?" was answered time and again in the narratives written by CNAs in this issue of the journal.But before moving forward, I want to make note of how I will refer to the authors of these narratives. The name of one's occupation, the title one uses, and how others refer to your occupation, is obviously meaningful. If the snapshots of CNAs provided in these narratives are somewhat representative, we find those who refer to themselves and their occupation as nursing assistants, nurse assistants, Certified Nursing Assistants (CNAs), State Licensed Nursing Assistants (SLNA), or simply aides, to name a few. While it is beyond the space offered here, I want to make note of this, recognizing that titles/labels matter, and to acknowledge that status. As CNA Nanci Robinson notes, "most of us are certified... I wouldn't call an LPN a PN and leave out she's licensed." Passage of the Omnibus Budget Reconciliation Act of 1987 (OBRA 87), required each State to establish State-approved nurse aide training programs and establish requirements for nurse aide competency. Thus, I will refer to all the authors here as Certified Nursing Assistants (CNAs). I do wonder how significant of an issue these variations of titles are within the larger nursing assistant culture, and how it may contribute to disparities regarding pay schedules, duties, status, training and other relevant issues among all nursing assistants.In spite of problems, stressors, and other quality of life issues for CNAs, most of them spoke with pride and meaning regarding what was for many their "life's work," similar to what one might expect to find in other care giving occupations. Some spoke of a "love of the work," its "rewards" and "joys," [End Page 165] and the intense satisfaction of "making a difference" in patients' or residents' lives. These attitudes were not vague abstractions but were grounded throughout the narratives in rich examples of the affirming aspects of their work.It appears that much of the pleasure comes from what many refer to as the "hands on," "direct care," or "front line" nature of the work—often what other health professionals might view as things they would not want to do. And of course these other professionals—registered nurses, occupational therapists, and physicians—could make the same claim when describing the "hands-on" joys of their work. But the differences, it would seem, are profound between these other caregivers and CNAs. The CNA narratives report fundamentally intimate and often daily relationships with their clients/residents/patients. Danny Reed describes the "delight" he feels "in restoring dignity to every human in need of it regardless of cause," referring to himself as a "participant observer in a caring relationship," not as a "detached clinician." Many spoke directly... (shrink)

Americans are increasingly turning to hospice services to provide them with medical care, pain management, and emotional support at the end of life. The increase in the rates of hospice utilization is explained by a number of factors including a “hospice movement” dating to the 1970s which emphasized hospice as a tool to promote dignity for the terminally ill; coverage of hospice services by Medicare beginning in 1983; and, the market for hospice services (...) provision, sustained almost entirely by governmental reimbursement. On the one hand, the growing acceptance of hospice may be seen as a sign of trends giving substance to the death-with-dignity movement and the growing strength of end-of-life decision-makers and planners who integrate medical, community, family and spiritual networks. On the other hand, the precise relationship between the death-with-dignity and commercial processes driving hospice utilization rates are not well understood. On May 2, 2013, the U.S. Government intervened in a lawsuit brought by former hospice employees alleging that behind Vitas Innovative Hospice Care, the largest for-profit hospice service provider in the United States, lie an intricate web of incentives for patient intake nurses, physicians and marketers which not only drove hospice patients to use more expensive crisis care services, but influenced patient and family decisions as to whether or not to discontinue curative treatment. The corporate, investment, and regulatory history behind Vitas provides an important insight into the market realities behind Americans' embrace of hospice care and the risks to patient autonomy and health that accompany the commercialization of this ethically and morally complex health care service. (shrink)

Over the last twenty years, ‘palliative care’ has evolved as a special nursing field in Germany. Its historic roots are seen in the hospices of the Middle Ages or in the hospice movement of the twentieth century. Actually, there are numerous everyday sources to be found about this subject from the nineteenth century. The article at hand deals with the history of nursing the terminally ill and dying in domestic care in the nineteenth century. Taking (...) care of and nursing the dying was part of everyday routine in the nursing care as practiced by the deaconesses and sisters in those days. Mit der Seelenpflege bei den unheilbar Kranken und Sterbenden schufen die Kaiserswerther Diakonissen sich einen von Ärzten unabhängigen Kompetenzbereich. Meine Analysen zur Privatpflege zeigen jedoch darüber hinaus, dass die in ihrer Aufmerksamkeit auf das Mutterhaus ausgerichteten Diakonissen auch in Leibespflege sehr viel unabhängiger von den Ärzten zu agieren schienen als die freien Krankenschwestern. The article takes a look not only at the actual nursing activities but also at the relationship between the sisters and their patients and their relatives and the family doctor. On the basis of the recorded letters which the nurses wrote to the deaconess motherhouse in Kaiserswerth, it is also possible to analyze how the deaconesses communicated and reflected their actions at the deathbed. (shrink)

Ethical care is beginning to be recognised as care that accounts for the views of those at the receiving end of care. However, in the context of palliative and supportive district nursing care, the patients’ and their carers’ views are seldom heard. This qualitative research study explores these views. Data were collected through semi-structured interviews with 26 patients with palliative and supportive care needs receiving district nursing care, and 13 of their carers. (...) Participants were recruited via community nurses and hospices between September 2010 and October 2011. Post-structural discourse analysis is used to examine how discourses operate on a moral level. One discourse, ‘busyness’, is argued to preclude a moral form of nursing care. The discourse of friendship is presented to contrast this. Discussion explores Gallagher’s ‘slow ethics’ and challenges the currently accepted ways of measuring to improve quality of care concluding that quality cannot be measured. (shrink)

Background The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in (...) class='Hi'>nursing homes and for dying people with dementia. Methods This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. Results The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. Conclusion LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

BackgroundThe Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing (...) homes and for dying people with dementia.MethodsThis systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science.ResultsThe search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available.ConclusionLCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing (...) homes and for dying people with dementia. This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing (...) homes and for dying people with dementia. This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

In July 1993, the Scottish Highlands Centre for Human Caring sponsored a conference with the title Exploring the Spirituality in Caring. The papers given at the conference and included in this volume are offered as a contribution to the debate that must take place in nursing and in the wider context of health care provision. Ann Bradshaw's paper puts the debate in context arguing that nursing is fundamentally a loving response to the human being created in the (...) image of God. (shrink)

In this book the relevance of language, perception and context are highlighted by discussing issues of end-of-life care, prenatal diagnosis, allocation problems as well as ethical conflicts in clinical practice.

The present article considers conflicts and conflict regulation in hospices. The authors carried out a qualitative study in three hospices in North Rhine-Westphalia, Germany, to explore how conflicts arise and how conflict regulation proceeds. Hospice nurses should act according to a set of ethical codes, to mission statements of the institution and to professional standards of care. In practice the subjective interpretations of codes and/or models concerning questions of care are causes of conflicts among nurses, with doctors, (...) patients and family members. The management has two choices to react to these conflicts. It can either tolerate the conflicts, as long as they do not disturb the daily routine. Or it can increase the degree of organisation by integrating the different viewpoints into its own program and/or by restructuring its organisational units. (shrink)

The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for individuals (...) in nursing homes. This is somewhat puzzling given that considerable resources have been devoted to bringing public attention to this problem, we have the knowledge and expertise to provide such care, and we have a government-financed benefit that covers this type of care - the Medicare hospice benefit.While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting. (shrink)

The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for individuals (...) in nursing homes. This is somewhat puzzling given that considerable resources have been devoted to bringing public attention to this problem, we have the knowledge and expertise to provide such care, and we have a government-financed benefit that covers this type of care - the Medicare hospice benefit.While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting. (shrink)

While feelings of disgust and repulsion are experienced and accepted as part of care practices of nurses who work in palliative care, they are often silenced. Working alongside two palliative care nurses in a hospice setting, we engaged in a narrative inquiry to inquire into their experiences of disgust. The study took place in a palliative care setting in a large urban city in Germany. We understand care practices as actions that follow a logic (...) of care. According to a logic of care, actions are situated within a social context, given by specific relationships including power, and individual needs. Various aspects of disgust are visible in the experiences of the participants and highlighted in the narrative threads of disgust and silence, disgust and protection, and disgust and boundaries. Embedded in the experience of disgust of nurses working in palliative care, we see that there are borderlands of care that challenge who we are and are becoming. Opening discussion about disgust in nursing makes visible the complexity of care. (shrink)

Palliative care is a recent branch of health care. The doctors, nurses, and other professionals involved in it took their inspiration from the medieval idea of the hospice, but have now extended their expertise to every area of health care: surgeries, nursing homes, acute wards, and the community. This has happened during a period when patients wish to take more control over their own lives and deaths, resources have become scarce, and technology has created controversial (...) life-prolonging treatments. Palliative care is therefore faced with more ethical problems that other areas of health care. This book, by a clinician, teacher, and writer on health care ethics, has been written to provide all those who care for the terminally ill--doctors, nurses, social workers, clergymen, physiotherapists--with the concepts and principles which will assist them with difficult decisions. It challenges many received doctrines of palliative care, but its well-illustrated central theme is that technical expertise must be controlled by humane, non-technical judgments. (shrink)

Perinatal hospice is a novel form of care for an unborn child who has been diagnosed with a significantly life-limiting condition. In this book, Aaron D. Cobb develops a virtue-based defense of the value of perinatal hospice. He characterizes its promotion and provision as a common project of individuals, local communities, and institutions working together to provide exemplary care. Engaging with important themes from the work of Alasdair MacIntyre and Robert Adams, he shows how perinatal (...) class='Hi'>hospice manifests virtues crucial to meeting the needs of families in these difficult circumstances. As a work of applied virtue ethics, this book has important normative, social, and political implications for the creation and development of structured programs of care. It grounds the view that communities ought to devote resources to ensure that these programs are widely available and to develop social structures that promote awareness of and accessibility to these forms of care. A Virtue-Based Defense of Perinatal Hospice will be of interest to philosophers working in bioethics and applied virtue ethics, as well as scholars in the fields of neonatology, nursing, palliative and hospice care, and counseling who are interested in the study of perinatal hospice. (shrink)

This study explores the amount of control patients have versus the amount of control physicians have in making decisions regarding what course will be taken in the face of disease. This includes decisions about aggressive treatment, alternatives to aggressive treatment, hospice care, and possibly physician‐assisted death, if that is an option. The findings of this research conclude that there are many levels of control for physicians and patients, and that in certain cases patients may have limited control and (...) in other circumstances patients are entirely in control over their healthcare decisions. The personalities and education levels of both the physicians and the patients determine what kinds of options and control a patient will have. (shrink)

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person’s worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family’s collective Indian Hindu worldview (...) and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses’ well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society’s views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents’ right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm. (shrink)

Background: In the last two decades, nursing authors have published ethical analyses of palliative sedation—an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care. Research aim: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses’ moral identities are portrayed (...) within this literature. Research design: We reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher’s Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors’ portrayal of the nursing role. Findings: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses’ proximity to patients and families in end-of-life care. Discussion and conclusion: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples’ moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation. (shrink)

In order to care ethically nurses need to care holistically; holistic care includes religious/spiritual care. This research attempted to answer the question: Do nurses have the resources to offer religious care? This article discusses only one aspect - the provision of religious care within the Taiwanese health care system. It is assumed that, if hospitals do not provide enough religious services, nurses working in these hospitals cannot be fully ethical beings or cannot respect (...) patients’ religious needs. The relevant literature was reviewed, followed by a survey study on the provision of religious facilities and services. Aspects considered are: the religions influences in and on Taiwanese society; the religious needs of patients and their families; strategies that patients use to enable them to cope with their health care problems; professional motives for attuning to patients’ religious needs; and hospital provision for meeting the religious and spiritual needs of patients. A survey of nursing executives showed differences between religious service provision in hospitals with and without a hospice ward. The practical implications for hospital management and nursing practice are discussed. (shrink)

Background:Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves.Purpose:The aim of this study is to illuminate multi-ethnic healthcare providers’ lived experiences of their own working relationship, and its importance to quality care for people with dementia.Research design:The study is part (...) of a greater participatory action research project: ‘Hospice values in the care for persons with dementia’. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation.Participants and research context:Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins.Ethical considerations:The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services.Findings:The results show that good working relationships, characterized by understanding each other’s vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings.Discussion:The results are discussed in the light of Lögstrup’s relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech.Conclusion:The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance. (shrink)

Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life—including fatigue, pain, dyspnea, and anxiety—with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the (...) class='Hi'>hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments. The Concurrent Care Provision of the United States’ Affordable Care Act eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children’s Health Insurance Program. Concurrent care for children can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes for the child and possibly bereavement outcomes for the family. Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families. We apply Powers and Faden’s theory of social justice “as the moral foundation of public health and health policy” to the provision of concurrent care to children near end of life and families in the United States. The goals of applying this theory are to explore additional insights and perspectives into concurrent care policy may provide and to assess the usefulness of this theory when applied to end-of-life health policy. We argue that concurrent care policy is socially just since it has potential to promote well-being in vulnerable children and families and can limit the inequity children at end-of-life experience in access to high-quality hospice care. (shrink)

Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.

Narrative Medicine in Hospice Care argues that the models of selfhood and care found in the work of Paul Ricoeur can serve as a framework for clinicians, caregivers, and end-of-life patients regardless of the patients’ verbal and cognitive capabilities.

This study investigated the relationship between hospital nurses’ professional care obligation, their attitudes towards SARS infection control measures, whether they had ever cared for SARS patients, their current health status, selected demographic characteristics, and the time frame of the data collection (from May 6 to May 12 2003 during the SARS epidemic, and from June 17 to June 24 2003 after the SARS epidemic). The study defines 172 nurses’ willingness to provide care for SARS patients as a professional (...) obligation regardless of the nature of the disease. A conceptual model was developed and tested using ordinal logistic regression modelling. The findings showed that nurses’ levels of agreement with general SARS infection control measures and the lack of necessity for quarantining health care workers who provided care for SARS patients were statistically significant predicators of the nurses’ fulfilling of their professional care obligation. Suggestions and study limitations are discussed. (shrink)

Recent studies suggest that terminally ill African Americans’ care is generally more expensive and of lower quality than that of comparable non-Hispanic white patients. Scholars argue that increasing hospice enrollment among African Americans will help improve end-of-life care for this population, yet few studies have examined the experiences of African American patients and their loved ones after accessing hospice care. In this article, we explore how African American patients and lay caregivers evaluated their hospice (...) experiences. Drawing from 39 in-depth interviews with 26 participants, we use a modified version of Bute and Jensen’s (2011) narrative typology to organize patients’ and caregivers’ stories into three general categories: narratives of satisfaction, narratives of regret, and narratives of ambivalence. Building from these categories, we discuss the implications of this research for understanding hospice experiences, promoting hospice access, and improving end-of-life care for marginalized populations. (shrink)

Recent years have witnessed the publication of numerous articles that draw a critical alignment between ethics and caring. In essence, this theme suggests that caring is a moral pursuit centred on the beneficent attention of one person shown to another. Yet, if such language is to have real poignancy, it must be geared towards an inclusive agenda that meets the needs of all within the community. Research evidence suggests that this is not always the case, especially in terms of the (...) care offered to members of minority ethnic groups. This article will focus on the findings of a qualitative research study that explored the expectations and perceived experiences of nursing care among members of the Pakistani community in Bradford, West Yorkshire, UK. The findings suggest that nurses should develop a more informed narrative that readily reflects the needs of the Pakistani community. (shrink)

In the history of palliative care, all roads lead back to Dame Cicely Saunders, a remarkable social worker/nurse/physician who promoted the concept of total pain and founded the first modern hospic...

This article examines the limits and potential of hospitality through struggles over auditory space in care at the end of life. Drawing upon empirical research and a nurse’s account of noisy mourning in a multicultural hospice ward, I argue that the insurgent force of noise as corporeal generosity can produce impossible dilemmas for care, while also provoking surprising ethical relations and potentialities. Derrida’s ideas about the aporias of the gift and absolute responsibility are used to make sense (...) of the pushy generosity of alterity as it is made to matter through sound. (shrink)

In the state of Victoria, Australia in the late 1950s and early 1960s, restorative treatment was introduced into the state‐subsidised benevolent homes, and they were reclassified as geriatric hospitals. In the process, the nursing care of incapacitated old people was identified in terms of particular skills and knowledge, and specific forms of training were established for nurses at two levels of training: nurses’ aides and supervisory nurses with a postbasic qualification. These institutional changes were complemented by the introduction (...) of a nursing role into the body responsible for overseeing care for the aged in Victoria. Little was made of this opportunity to establish a leading role for nurses in the field of care for the aged. However, this episode raises fertile questions for further research into the development of nursing in Australia, as a set of practices divided along the lines of acute and chronic illness. (shrink)