The experience of losing a child to cancer represents an emotional burden for the parents with extreme individual, family and social effects that do not end with death. This integrative review is intended to identify key aspects in the experience of losing a child to cancer. The results show a pattern surrounding six moments in the mourning process These can serve as elements of intervention to accompany parents as they try to cope. It is concluded this pattern is an important (...) phenomenon for the development of palliative care at the end of life and afterwards. (shrink)

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

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

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric ICU, (...) pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

The use of Nasogastric (NG) feeding in the provision of artificial nutrition and hydration at the end of life has, for the most part, been regarded as futile by the medical community. This position has been led chiefly by prevailing medical data. In Singapore, however, there has been an increase in its utilization supported primarily by social, religious and cultural factors expressly to prolong life of the terminally ill patient. Here this article will seek to review the ethical and clinical (...) impact of this treatment and provide some understanding for such decisions in the light of the Duty of Palliative Care [DoPC]. Complemented by virtue ethics theory, the DoPC highlights and seeks to realize the individual case specific goals of care that maximize comfort and quality of life of the patient in the face of rapid attenuation of treatment options and the eminence of the final outcome by considering each of these factors individually in order to provide the best outcome for the patient and the family. (shrink)

Background:The process of dying in intensive care units is complex as the technological environment shapes clinical decisions. Decisions at the end of life require the involvement of patient, families and healthcare professionals. The degree of involvement can vary depending on the professional and social culture of the unit. Nurses have an important role to play in caring for dying patients and their families; however, their knowledge is not always sought.Objectives:This study explored nurses’ care practices at the end of (...) life, with the objective of describing and identifying end of life care practices that nurses contribute to, with an emphasis on culture, religious experiences and professional identity.Research Design and context:Grounded theory was used. In all, 10 nurses from intensive care unit in two large hospitals in Bahrain were participated.Ethical Considerations:Approval to carry out the research was given by the Research Ethics Committee of the host institution, and the two hospitals.Findings:A core category, Death Avoidance Talk, was emerged. This was supported by two major categories: (1) order-oriented care and (2) signalling death and care shifting.Discussion:Death talk was avoided by the nurses, doctors and family members. When a decision was made by the medical team that a patient was not to be resuscitated, the nurses took this as a sign that death was imminent. This led to a process of signalling death to family and of shifting care to family members.Conclusion:Despite the avoidance of death talk and nurses’ lack of professional autonomy, they created awareness that death was imminent to family members and ensured that end of life care was given in a culturally sensitive manner and aligned to Islamic values. (shrink)

The aim of this study was to describe how patients’ participation in the care they received was documented in their health care records during the last three months of their lives. Two hundred and twenty-nine deceased adult persons were randomly identified from 12 municipalities in a Swedish county and their records were selected from different health care units. Content analysis was used to analyse the text. Four categories of patient participation were described: refusing offered care and (...) treatments; appealing for relief; desire for everyday life; and making personal decisions. The most common way for these patients to be involved in their care at the end of their life was by refusal of the treatment and care offered. Characteristic of the different ways of participation were the diverse activities represented. The description of patients’ involvement in their life situation at this time indicated their dissociation from the health care offered more than consenting to it. (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)

Background: Achieving a “good death” is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period. Objectives: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a “good death.” Research design: A cross-sectional study. Participants and research context: This (...) study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions. Ethical consideration: Approval from Institutional Review Board was obtained. Findings: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses. The nurses thought the most important issue was relief of uncomfortable symptoms. On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question. Discussion: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents. Conclusions: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse–patient communication with regard to the patients’ end-of-life wishes. (shrink)

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

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

Palliative care seeks to improve the quality of life for patients suffering from the impact of life‐limiting illnesses. Palliative care encompasses but is more than end‐of‐life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non‐specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports (...) on an action research project aimed at developing respiratory nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non‐specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end‐of‐life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care. (shrink)

Medical anthropologists have long recognized variation between cultures with regard to the locus of healing in different systems and traditions: that is, in some cultures, the human body is a “bounded physical unit” and healing is thus focused on the body alone. This perspective will be most familiar to Western health-care providers, and indeed, many providers do not imagine an alternative perspective. However, in many cultures, experiences of health, illness, disease, and healing are intricately connected with the social spheres. (...) In these contexts, healing practices and rituals may seek to address family dynamics, alter roles within a community, and resolve social rifts, and illness itself may be... (shrink)

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

In this paper, I will share findings from a qualitative study that offers a thematic analysis of 76 interviews with Muslim patients and families as well as doctors, nurses, allied health professionals, chaplains and community faith leaders across the United Kingdom. The data show that for many Muslims, Islam—its texts and lived practice—is of central importance when they are deliberating about death and dying. Central to these deliberations are virtues rooted within Islamic theology and ethics, the traditions of adab (virtue) (...) and aqhlaq (proper conduct). Themes analysed include theological and moral understandings around the virtues of hope and acceptance. The study provides an analysis of these themes in relation to the experiences of Muslim patients and families arriving at meaning making around death and dying and how this interfaces with their interaction with biomedicine and healthcare. The study shows that the juxtaposition of different values and moral frameworks require careful negotiation when Muslim patients and families encounter the healthcare system. The study also describes how healthcare professionals and staff of other faiths and no faith encounter Muslim beliefs and practices, and the challenges they face in interpreting virtues and values rooted in faith, especially when these are perceived to be mutually opposed or inconsistent. (shrink)

Health-care professionals in end-of-life care are frequently confronted with patients who seem to be ‘ambivalent’ about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers (...) need to understand when contradictory statements point to tensions in a patient’s moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements. (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)

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)

This special issue of Theoretical Medicine and Bioethics takes up the question of palliative sedation as a source of potential concern or controversy among Christian clinicians and thinkers. Christianity affirms a duty to relieve unnecessary suffering yet also proscribes euthanasia. Accordingly, the question arises as to whether it is ever morally permissible to render dying patients unconscious in order to relieve their suffering. If so, under what conditions? Is this practice genuinely morally distinguishable from euthanasia? Can one ever aim (...) directly at making a dying person unconscious, or is it only permissible to tolerate unconsciousness as an unintended side effect of treating specific symptoms? What role does the rule of double effect play in making such decisions? Does spiritual or psychological suffering ever justify sedation to unconsciousness? What are the theological and spiritual aspects of such care? This introduction describes how the authors in this special issue wrestle with such questions and shows how each essay relates to the author’s individual position on palliative sedation, as developed in greater detail within his contribution. (shrink)

In 2016, France passed a major law that is unique in giving terminally ill and suffering patients the right to the controversial procedure of continuous deep sedation until death (CDS). In so doing, the law identifies CDS as a sui generis clinical practice, distinct from other forms of palliative sedation therapy, as well as from euthanasia. As such, it reconfigures the ethical debate over CDS in interesting ways. This paper addresses one aspect of this reconfiguration and its implications for (...) the intentions at work in this complex time at the end of life. The concept of intention is often considered central to the ethics of end-of-life care, but its role is recognized to be problematic, with charges of elusiveness and ambiguity. I aim to show that consideration of the French law affords a new understanding of the intentionality of CDS, and that in addition to the obvious importance of this for clarifying the ethics of the practice, it may suggest new ways of addressing the wider problem of ambiguous clinical intentions at end of life. (shrink)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive design with (...) analysis of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

For the past 30 years, the Melbourne urologist Dr Rodney Syme has quietly—and more recently, not-so-quietly—assisted terminally and permanently ill people to die. This paper draws on Syme’s recent book, A Good Death: An Argument for Voluntary Euthanasia , to identify and to reflect on some important challenges to what I outline as the traditional account of law, ethics, and end of life decisions. Among the challenges Syme makes to the traditional view is his argument that physicians’ intentions are frail (...) and unfairly expose physicians to moral and legal censure. Secondly, Syme argues that physician-assisted dying (PAD) should be framed as a form of palliative care, not as a kind of safety-chute for when palliative care fails. Thirdly, Syme himself is a rare breed: a dissident doctor who has opened himself up for scrutiny and criticism, by reflecting publicly on his experiences at the edge of the law. Syme’s career illustrates that prohibition, just like legalization, is a social policy that carries social consequences. The paper acknowledges the variability and idiosyncratic nature of extra-legal physician-assisted dying, and argues that the best way forward is to attempt to weigh the social consequences of both policies. Advocates and opponents of PAD should recognize that both prohibition and legalization involve trade-offs and impose possible costs on patients and on society. (shrink)

Appropriate and balanced decision-making is sentinel to goal setting and the provision of appropriate clinical care that are attuned to preserving the best interests of the patient. Current family-led decision-making in family-centric societies such as those in Singapore and other countries in East Asia are believed to compromise these objectives in favor of protecting familial interests. Redressing these skewed clinical practices employing autonomy-based patient-centric approaches however have been found wanting in their failure to contend with wider sociocultural considerations that (...) impact care determinations. Evaluation of a number of alternative decision-making frameworks set out to address the shortcomings of prevailing atomistic and family-centric decision-making models within the confines of end-of-life care prove these alternative frameworks to be little better at protecting the best interests of vulnerable patients. As a result, we propose the Welfare Model that we believe is attentive to the relevant socio-culturally significant considerations of a particular case and better meets the needs of end-of-life care goals of preserving the welfare of patients. Employing a multi-professional team evaluation guided by regnant psychosocial, legal, and clinical standards and the prevailing practical and clinical realities of the particular patient’s setting the Welfare Model provides a clinically relevant, culturally sensitive, transparent, and evidence-based approach to care determinations. (shrink)

Ramsey sees life as a gift and a trust given to people by God. This theological understanding of human life frames his judgment of the immorality of euthanasia in its many forms. Assuming Ramsey’s theological insights and framing of this issue, I highlight a particular way of thinking about euthanasia that both seems to capture the essence of the debate and does not necessarily build the moral evaluation into its description. I aim to identify and unpack the description most consistent (...) with the claims made by Ramsey of how other end-of-life (EOL) care options are seen as life choices in order to die well enough. If this project is right-headed, it can be used as a backdrop for assessing how many of the currently accepted and perhaps developing options in EOL and palliative care may or may not be morally distinct from euthanasia. Therefore, those who oppose euthanasia while wanting also to maintain the appropriateness of many of other EOL care options in certain situations are not acting inconsistently. This primarily conceptual work is done in service to those who take Ramsey’s theological framework seriously. (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)

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)

Background Studies describing physicians’ experiences with sedation at the end of life are indispensible for informed palliative care practice, but they are scarce. We describe the accounts of physicians from the USA and the Netherlands, two countries with different regulations on end-of-life decisions regarding their use of sedation.Methods Qualitative face-to-face interviews were held in 2007–2008 with 36 physicians , including primary care physicians and specialists. We applied purposive sampling and conducted constant comparative analyses.Results In both countries, the (...) use of sedation was described in diverse terms, especially in the USA, and was often experienced as emotionally challenging. Respondents stated different and sometimes multiple intentions for their use of sedation. Besides alleviating severe suffering, most Dutch respondents justified its use by stating that it does not hasten death, while most American respondents indicated that it might hasten death but that this was justifiable as long as that was not their primary intention. While many Dutch respondents indicated that they initiated open discussions about sedation proactively to inform patients about their options and to allow planning, the accounts of American respondents showed fewer and less-open discussions, mostly late in the dying process and with the patient's relatives.Conclusions The justification for sedation and the openness with which it is discussed were found to differ in the accounts of respondents from the USA and the Netherlands. Further clarification of practices and research into the effect and effectiveness of the use of sedation is recommended to enhance informed reflection and policy making. (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)

Objectives: To analyse the decision making for end of life care for patients with cancer at a teaching hospital in Japan at two periods 10 years apart.Design and setting: Retrospective study conducted in a 550 bed community teaching hospital in Okinawa, Japan.Patients: There were 124 terminally ill cancer patients admitted either in 1989 and 1999 for end of life care with sufficient data to permit analysis.Main measurements: Basic demographic data, notification to the patient that he or she had (...) cancer, patient involvement in do not resuscitate orders, and various medical interventions which were performed in the month prior to the patient’s death were evaluated.Results: In 1989 none of the patients were notified of their diagnosis; in 1999 five patients were informed . Of the 113 patients with a written DNR order, none were involved in consenting to the DNR order. In the month before death, patients in both groups received non-palliative treatments such as feeding tube placements , total parenteral nutrition , and intravenous albumin infusion . Morphine use increased significantly in 1999 compared with the 1989 group.Conclusions: The majority of patients dying of cancer were still not informed of their diagnosis and were seldom involved in DNR decision making at a teaching hospital in Japan. There was no change in the number of potentially futile interventions that were performed but morphine use increased. Modern ethical education is urgently needed in Japanese medical practice to improve decision making process in the end of life care. (shrink)

At the end of life, pain management is commonly a fundamental part of the treatment plan for patients where curative measures are no longer possible. However, the increased recognition of opioid diversion for secondary gain coupled with efforts to treat patients in the home environment towards the end of life creates the potential for ethical dilemmas in the palliative care management of terminal patients in need of continuous pain management. We present the case of an end-stage patient with (...) rectal cancer who required a continuous residential narcotic infusion of fentanyl for pain control due to metastatic disease. His functional status was such that he had poor oral intake and ability to perform other activities of daily living, but was able to live at home with health agency nursing care. The patient presented to this institution with a highly suspect history of having lost his fentanyl infusion in a residential accident and asking for a refill to continue home therapy. The treating physicians had concerns of diversion of the infusion medication by caregivers and were reluctant to continue the therapeutic relationship with the patient. This case exemplifies the tension that can exist between wanting to continue with palliative care management of an end-stage patient and the fear of providers when confronted by evidence of potential diversion of opioid analgesic medications. We elucidate how an ethical framework based on a combination of virtue and narrative/relationship theories with reference to proportionality can guide physicians to a pragmatic resolution of these difficult situations. (shrink)

Norwegian health professionals, elderly people and family members experience ethical problems involving end-of-life decision making for elders in the context of the values of Norwegian society. This study used ethical inquiry and qualitative methodology to conduct and analyze interviews carried out with 25 health professionals, six elderly people and five family members about the ethical problems they encountered in end-of-life decision making in Norway. All three participant groups experienced ethical problems involving the adequacy of health care for elderly Norwegians. (...) Older people were concerned about being a burden to their families at the end of their life. However, health professionals wished to protect families from the burden of difficult decisions regarding health care for elderly parents at the end of life. Strategies are suggested for dialogue about end-of-life decisions and the integration of palliative care approaches into health care services for frail elderly people. (shrink)

Objectives To examine the frequency and characteristics of decisions to forgo artificial nutrition and/or hydration at the end of life.Design Postal questionnaire survey regarding end-of-life decisions to physicians certifying a large representative sample of Belgian death certificates in 2007.Setting Flanders, Belgium, 2007.Participants Treating physicians of deceased patients.Results Response rate was 58.4%. A decision to forgo ANH occurred in 6.6% of all deaths . Being female, dying in a care home or hospital and suffering from nervous system diseases or malignancies (...) were the most important patient-related factors positively associated with a decision to forgo ANH. Physicians indicated that the decision to forgo ANH had had some life-shortening effects in 77% of cases. There had been no consultation with the patient in 81%, mostly due to incapacity . The family, colleague physicians and nurses were involved in decision making in 76%, 41% and 62%, respectively.Conclusions A substantial number of deaths are preceded by a decision to forgo ANH in Belgium. These decisions, ethically laden and involving a considerable chance of life shortening, are mostly not preceded by discussion with the patient despite existing patient rights legislation. It is recommended that physicians and patients and their families alike dedicate ample time to the discussion of treatment options and communication about the possibility of forgoing ANH and that this discussion takes place earlier as part of overall end-of-life care planning rather than at the very end of life. (shrink)

Dr Gillian Craig (1) has argued that palliative medicine services have tended to adopt a policy of sedation without hydration, which under certain circumstances may be medically inappropriate, causative of death and distressing to family and friends. We welcome this opportunity to defend, with an important modification, the approach we proposed without substantive background argument in our original article (2). We maintain that slowing and eventual cessation of oral intake is a normal part of a natural dying process, that (...) artificial hydration and alimentation (AHA) are not justified unless thirst or hunger are present and cannot be relieved by other means, but food and fluids for (natural) oral consumption should never be 'withdrawn'. The intention of this practice is not to alter the timing of an inevitable death, and sedation is not used, as has been alleged, to mask the effects of dehydration or starvation. The artificial provision of hydration and alimentation is now widely accepted as medical treatment. We believe that arguments that it is not have led to confusion as to whether or not non-provision or withdrawal of AHA constitutes a cause of death in law. Arguments that it is such a cause appear to be tenuously based on an extraordinary/ordinary categorisation of treatments by Kelly (3) which has subsequently been interpreted as prescriptive in a way quite inconsistent with the Catholic moral theological tradition from which the distinction is derived. The focus of ethical discourse on decisions at the end of life should be shifted to an analysis of care, needs, proportionality of medical interventions, and processes of communication. (shrink)

To assess whether UK and US health care professionals share the views of medical ethicists about medical futility, withdrawing/withholding treatment, ordinary/extraordinary interventions, and the doctrine of double effect. A 138-item attitudinal questionnaire completed by 469 UK nurses studying the Open University course on "Death and Dying" was compared with a similar questionnaire administered to 759 US nurses and 687 US doctors taking the Hastings Center course on "Decisions near the End of Life". Practitioners accept the relevance of concepts widely (...) disparaged by bioethicists: double effect, medical futility, and the distinctions between heroic/ordinary interventions and withholding/withdrawing treatment. Within the UK nurses' group a "rationalist" axis of respondents who describe themselves as having "no religion" are closer to the bioethics consensus on withholding and withdrawing treatment. Professionals' beliefs differ substantially from the recommendations of their professional bodies and from majority opinion in bioethics. Bioethicists should be cautious about assuming that their opinions will be readily accepted by practitioners. (shrink)

End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family’s position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult (...) decision-making processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient. (shrink)

Death’s Dominion is Simon Woods’ addition to the excellent and thought-provoking Facing Death series. Its timeliness is hardly at issue: the debate on euthanasia, end-of-life care and associated issues looks set to rage for some time. And it comes out at a time when the UK Parliament is debating a palliative care bill, designed to promote a duty of the state to provide palliative care to all who need it. The real concern with a work (...) in this area is knowing whether it is worth reading. I think it is. Relatively few are the texts that deal with palliative care, and fewer still are those that deal with it in such a careful and comprehensive manner. No thorough analysis of issues regarding the roles of the state and health care in individuals’ end-of-life decision-making can afford to ignore the specialty, yet it is often left unmentioned. For anyone who wishes to know about it and to see it in a clear social and ethical context, this book will prove highly valuable.The book is logically structured, consisting of eight chapters. Although these lead clearly from one …. (shrink)

Background: Cancer patients are at risk of developing blood clots in their veins - venous thromboembolism(VTE) - which often takes the form of a pulmonary embolism or deep vein thrombosis. Therisk increases with advanced disease. Evidence based treatment is low molecular weightheparin (LMWH) by daily subcutaneous injection. The aim of this research is to explore thebarriers for doctors in the UK when diagnosing and treating advanced cancer patients withVTE.MethodQualitative, in-depth interview study with 45 doctors (30 across Yorkshire, England and 15across (...) South Wales). Doctors were from three specialties: oncology, palliative medicine andgeneral practice, with a mixture of senior and junior staff. Framework analysis was used. Results: Doctors opinions as to whether LMWH treatment was ethically appropriate for patients whowere symptomatic from VTE but at end of life existed on a shifting continuum, largelyinfluenced by patient prognosis. A lack of immediate benefit coupled with the discomfort of adaily injection had influenced some doctors not to prescribe LMWH. The point at whichLMWH injections should be stopped in patients at the end of life was ambiguous. Someperceived overcaution in their own and other clinicians treatment of patients. Viewpointswere divergent on whether dying of a PE was considered a "good way to go". Theinterventionalism and ethos of palliative medicine was discussed. Conclusions: Decisions are difficult for doctors to make regarding LMWH treatment for advanced cancerpatients with VTE. Treatment for this patient group is bounded to the doctors own moral andethical frameworks. (shrink)

Caring for the competent, fragile, elderly patient at the end of life is becoming increasingly challenging. This case explores several ethical areas of concern that arise when caring for patients who have written durable powers of attorney for health care decisions and face life or death choices. Areas covered are informed consent with the elderly patient, the family's right to be involved in decision-making, futility of treatment, and the nurse's role as patient advocate during times of difficult decision-making. Recommendations (...) for increased nursing intervention during these times are incorporated. Les soins des personnes âgés, fragiles mais toujours compétentes et dont la vie touche à sa fin, posent des problèmes de plus en plus urgents. Cet article discute de plusieurs aspets qui se manifestent dans les soins des malades ayant écrit des mandats concernants leurs soins et qui doivent maintenant prendre des décisions graves concernant la vie ou la mort. Les aspets dont il s'agit dans cet article sont: le consentement informé des personnes âgés: le droit de la famille de participer à la décision; les traitements inutiles; et le rôle des infirmiers/ères pour plaider leur cause pendant des moments difficles de prises de décisions. Des recommendations pour de plus importantes interventions infirmières sont comprises. Die Pflege der geistig kompetenten aber hinfälligen Personen im hohen Alter stellt immer grössere Anforderungen. Dieser Artikel untersucht verschiedene ethische Aspekte, die bei der Pflege von Patienten, die eine schriftliche Vollmacht über medizinische Behandlung ausgestellt haben für ihre Pflege und jetzt Entscheidungen über Leben oder Tod treffen müssen. Der Artikel umfasst folgende Bereiche: informierten Zustimmung des Patienten, das Mitbestimmungsrecht der Familie, Zwecklosigkeit der Behandlung, und die Rolle des Pflegepersonals als Fürsprecher der Patienten bei schwierigen Entscheidungen. Empfehlungen für eine grössere Beteiligung oder Mitbestimmung des Pflegepersonals in diesen Fällen sind eingeschlossen. (shrink)

This analysis explores the phenomenology of suffering and temporal, genetic and social developmental aspects of suffering for seriously ill older adults. A phenomenological account of suffering is advanced using oral history data from in-depth interviews with a seriously ill, frail elderly woman. The analysis evaluates how a phenomenological account of suffering may inform ethics in end-of-life decision making, and may provide a further basis for an integrated ethical and gerontological response to suffering in palliative social work practice with seriously (...) ill older adults at the end of life. Levinas’s ethical philosophy and conceptualizations of the non-totalizing relation of self to other, disinterest, and radical passivity are employed to help reframe an approach to the ethical relation and the nature of obligation in end-of-life care, expanding consciousness of suffering and its meanings in an intersubjectively experienced world. Differences in Husserl’s account of the other and the concept of alterity in Levinas’s ethics are explored in the context of phenomenology as a descriptive science that respond directly to the pragmatic concerns of the analysis. (shrink)

Two studies reported in the Journal of Medical Ethics add to the growing body of qualitative evidence relating to the use of sedatives at the end of life.1 ,2 Respondents in the two studies affirm a number of important concerns, most of which have been elaborated in the philosophy and palliative care literature, relating to the use of sedation. There seems little doubt that the common moral thread to most of these concerns is the possibility that end-of-life sedation (...) can resemble assisted death.Most of the Dutch respondents in the paper by Reitjens et al1 were reported to believe that sedation does not hasten death. That is an oversimplification. Were it not for the potential to hasten death, I doubt we would be discussing the use of sedatives so frequently in ethics journals. It is true that there is little evidence that sedation significantly hastens death when doses are carefully titrated against symptoms—giving only that amount of a drug necessary to make the patient feel less distressed, and preserving consciousness as far as possible.3 Probably most sedative …. (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)

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)

Objectives—To assess whether UK and US health care professionals share the views of medical ethicists about medical futility, withdrawing/withholding treatment, ordinary/extraordinary interventions, and the doctrine of double effectDesign, subjects and setting–A 138-item attitudinal questionnaire completed by 469 UK nurses studying the Open University course on “Death and Dying” was compared with a similar questionnaire administered to 759 US nurses and 687 US doctors taking the Hastings Center course on “Decisions near the End of Life”.Results–Practitioners accept the relevance of concepts (...) widely disparaged by bioethicists: double effect, medical futility, and the distinctions between heroic/ordinary interventions and withholding/ withdrawing treatment. Within the UK nurses' group a “rationalist” axis of respondents who describe themselves as having “no religion” are closer to the bioethics consensus on withholding and withdrawing treatment.Conclusions—Professionals' beliefs differ substantially from the recommendations of their professional bodies and from majority opinion in bioethics. Bioethicists should be cautious about assuming that their opinions will be readily accepted by practitioners. (shrink)

Nursing professionals are in key positions to support end-of-life decisions and to advocate for patients and families across all health care settings. Advocacy has been identified as the common thread of quality end-of-life nursing care. The purpose of this comparative descriptive study was to reveal acute care nurses' perceptions of advocacy behaviors in end-of-life nursing practice. The 317 participating nurses reported frequent contact with dying patients despite modest exposure to end-of-life education. This study did (...) not confirm an overall difference in advocacy behaviors among novice, experienced and expert nurses; however, it offered insight into the supports and barriers nurses at different skill levels experienced in their practice of advocacy. (shrink)