Quality of care is a prominent discourse in modern health‐care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse–patient–carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi‐structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care (...) and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health‐care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. (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)

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)

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)

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

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

Evaluating the feasibility and first perceived outcomes of a newly developed clinical ethics support instrument called CURA. This instrument is tailored to the needs of nurses that provide palliative care and is intended to foster both moral competences and moral resilience. This study is a descriptive cross-sectional evaluation study. Respondents consisted of nurses and nurse assistants (n = 97) following a continuing education program (course participants) and colleagues of these course participants (n = 124). Two questionnaires with five-point (...) Likert scales were used. The feasibility questionnaire was given to all respondents, the perceived outcomes questionnaire only to the course participants. Data collection took place over a period of six months. Respondents were predominantly positive on most items of the feasibility questionnaire. The steps of CURA are clearly described (84% of course participants agreed or strongly agreed, 94% of colleagues) and easy to apply (78–87%). The perceived outcomes showed that CURA helped respondents to reflect on moral challenges (71% (strongly) agreed), in perspective taking (67%), with being aware of moral challenges (63%) and in dealing with moral distress (54%). Respondents did experience organizational barriers: only half of the respondents (strongly) agreed that they could easily find time for using CURA. CURA is a feasible instrument for nurses and nurse assistants providing palliative care. However, reported difficulties in organizing and making time for reflections with CURA indicate organizational preconditions ought to be met in order to implement CURA in daily practice. Furthermore, these results indicate that CURA helps to build moral competences and fosters moral resilience. (shrink)

This article presents an ethics support instrument for healthcare professionals called CURA. It is designed with a focus on and together with nurses and nurse assistants in palliative care. First, we shortly go into the background and the development study of the instrument. Next, we describe the four steps CURA prescribes for ethical reflection: (1) Concentrate, (2) Unrush, (3) Reflect, and (4) Act. In order to demonstrate how CURA can structure a moral reflection among caregivers, we discuss how (...) a case was discussed with CURA at a psychogeriatric ward of an elderly care home. Furthermore, we go into some considerations regarding the use of the instrument in clinical practice. Finally, we focus on the need for further research on the effectiveness and implementation of CURA. (shrink)

We have conducted a small qualitative empirical study into the problems that nurses encounter in delivering existential support in their care of dying patients. We found that nurses are confronted with four types of problem: determining whether the patient actually has put a genuine question for existential support on the agenda; assessing what the import of such a question is; devising an adequate procedure for offering existential support; and organizing adequate support for themselves. Our analysis shows that it takes (...) a ‘fine-tuned antenna’ from nurses to determine these existential questions, which are often put indirectly and in a variety of forms. We have attempted to show that the subtleties of the communicative dimension of palliative terminal care require an intricate set of virtues on the part of the nurse. We have analysed these virtues in a bottom-up approach, inferring them directly from the material obtained from interviews. The framework utilized is the Aristotelian one of striking the right balance between the poles of a morally relevant dimension. (shrink)

Background: Palliative care is an important part of health services. The individualized care perceptions are is critical for supporting individuality during care and providing quality nursing care. Individualized care not only has, as well as having foundation of the philosophy of nursing but also, is also related to the nurses’ empathic tendencies and professional quality of life of nurses. Aim: This study was conducted to examine the relationships between the empathic tendencies, professional quality of (...) life, and individualized care perceptions of palliative care nurses. Research design: This is a cross-sectional study. Participants and research context: The study was conducted with 141 nurses working in palliative care between December 2023 and February 2024. The data of the study were collected using a “Participant Information Form,” the “Emphatic Tendency Scale (ETS),” the “Professional Quality of Life Scale (ProQOL R-IV),” and the “Individualized Care Scale-Nurse Version A (ICS-Nurse-A).” Ethical considerations: Ethics committee approval was obtained to conduct the study. Individuals who agreed to participate in the study were informed of the purpose of the study, and their written consent was obtained. Findings: The participants had moderate levels of empathic tendencies, compassion satisfaction, and burnout, while their compassion fatigue and individualized care perceptions were high. There was a positive correlation between empathic tendencies and individualized care perceptions ( p <.01). Empathic tendency and compassion satisfaction were significant positive predictors of the individualized care perceptions of the participants and respectively explained 13% and 20% of the total variance in their individualized care perceptions. On the other hand, burnout was a significant negative predictor of their individualized care perceptions and explained 5% of the total variance in their individualized care perceptions. Conclusions: High levels of empathic tendencies and compassion satisfaction had positive effects on the individualized care perceptions of palliative care nurses, whereas high levels of burnout had a negative effect on the same variable. (shrink)

The primary purpose of this study is to understand if/how patients of hospice healthcare require ‘Spiritual’ or/and ‘Religious’ assistance and if its involvement in palliative care helps greatly. We have built a correlative of two scales and administrated them on the same sample, along with complete demographics questions to a group of people under palliative care and several people directly connected with patients, relatives- families. This methodological study is designed to assess the reliability and validity of (...) two scales simultaneously for the same terminally ill patients (TIP): Paloutzian and Ellison’s (1982) Spiritual Well-being Scale. The scale was administered to 49 individuals, of which 45 are patients and 4 family members caring for a terminally ill relative. Background: Coping is a multifactorial and individual process related to responding to stressful situations, such as being a caregiver of a person with health conditions or terminal illness [such as in hospice]. Spiritual [S] / religious [R] coping is an essential internal resource used by individuals enduring stressful situations or, in this particular case, confronting imminent death. Instruments: The 14-item Brief RCOPE is widely used to assess religious coping. The other instrument we have used for S/R assessment is the Spiritual Well-Being (SWB) Scale, a general measure of the subjective quality of life. Neither one is available in the Romanian version Ciocan Tudor-Cosmin (2023) developed following Romanian culture. He worked with Professor Ray Paloutzian - author of the latter scale - to translate and validate the use of the translated scales. Objective: To investigate the S/RWB among palliative care patients in Romania and to identify the correlates of Spiritual and Religious Well-Being. Secondary: To translate, adapt and validate both the 14-item Brief RCOPE and SWBS in Romanian for caregivers of palliative patients facing death. Method: The methodological guideline provided by Ray Paloutzian and Craig W. Ellison was used to examine the psychometric properties of SWBS, while the manual provided by Kenneth Pargament on his website helped us accommodate the Brief RCOPE to Romanian culture and understanding. Results: The linguistic and conceptual equivalence of the scales was determined. The internal consistency was acceptable (Cronbach’s a = 0.891 for SWBS and a = 0.798 for RCOPE). The Principal Axis Factor (PAF) analysis with varimax rotation identified two factors comprising 13 items, and one item was excluded from the scale (14/RCOPE). The faith subscale (SWBS) showed similar distributions. Christians engaged in religious activities reported higher SWB in the meaning and peace subscale than patients without religious attendance. In the multivariate analysis, religious Frequency (P < 0.001), and individual spiritual activities (P < 0.003) were significantly related to a greater SWB. Conclusion: The Romanian versions of the SWBS and Brief RCOPE are reliable and valid measures for assessing both the spiritual and religious coping of patients in hospice, their families, and their caregivers. Although faith practices may be beneficial to improve spiritual well-being among Orthodox Christians (the majority in Romania), further research is needed to determine what individual spiritual activities can be supported by Orthodox Christians positively engaged – since they are very skeptical about practices other than religious ones, introduced by the traditional Church. (shrink)

STAJDUHAR K, FUNK L, JAKOBSSON E and ÖHLÉN J. Nursing Inquiry 2010; 17: 221–230A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care-givingTraditionally viewed as in opposition to palliative care, newer ideas about ‘health-promoting palliative care’ increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision-making. The general tendency is to assume that empowerment, participation, and self-care are (...) universally beneficial for and welcomed by all individuals. But does this assumption hold for everyone, and do we fully understand the implications of health-promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of ‘family empowerment’ strategies in palliative home-care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical-care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of ‘family empowerment’ are explored in this regard. ‘Family empowerment’ approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers. (shrink)

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

BackgroundClinical ethics case consultations (CECCs) provide a structured approach in situations of ethical uncertainty or conflicts. There have been increasing calls in recent years to assess the quality of CECCs by means of empirical research. This study provides detailed data of a descriptive quantitative and qualitative evaluation of a CECC service in a department of cardiology and intensive care at a German university hospital.MethodsSemi-structured document analysis of CECCs was conducted in the period of November 1, 2018, to May 31, (...) 2020. All documents were analysed by two researchers independently.ResultsTwenty-four CECCs were requested within the study period, of which most (n = 22; 92%) had been initiated by physicians of the department. The patients were an average of 79 years old (R: 43–96), and 14 (58%) patients were female. The median length of stay prior to request was 12.5 days (R: 1–65 days). The most frequent diagnoses (several diagnoses possible) were cardiology-related (n = 29), followed by sepsis (n = 11) and cancer (n = 6). Twenty patients lacked decisional capacity. The main reason for a CECC request was uncertainty about the balancing of potential benefit and harm related to the medically indicated treatment (n = 18). Further reasons included differing views regarding the best individual treatment option between health professionals and patients (n = 3) or between different team members (n = 3). Consensus between participants could be reached in 18 (75%) consultations. The implementation of a disease specific treatment intervention was recommended in five cases. Palliative care and limitation of further disease specific interventions was recommended in 12 cases.ConclusionsTo the best of our knowledge, this is the first in-depth evaluation of a CECC service set up for an academic department of cardiology and intensive medical care. Patient characteristics and the issues deliberated during CECC provide a starting point for the development and testing of more tailored clinical ethics support services and research on CECC outcomes. (shrink)

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

BackgroundHumanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care—a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. (...) Yet global guidance was available. In 2018, the WHO released a guide on‘Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises’—the first guidance on the topic by an international body.AimsThis paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances.ImplicationsIn parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance. (shrink)

This paper claims that palliative care is a suitable approach for offering comprehensive support to patients with life-threatening illness and unavoidable asthenia, to enhance their quality of life in aging and chronic illness. There are however some conceptual barriers to accessing that care on the Chinese Mainland: Death-denying culture and society; Misguidance and malpractice derived from the biomedical model; Prejudice against PC and certain deviant understandings of filial piety culture. To counter these obstacles, the study introduces the (...) philosophy of Chinese Taoist Chuang-tze to enlighten the public from ignorance and remove some illusions about death and dying; inspire people to face and accept illness and death calmly, and keep harmony and inner peace of mind to alleviate suffering, with the aim of providing wisdom and a shift of attitude toward life and death. Chuang-tze’s thoughts are consistent with the provision of palliative care, and to a certain degree, can promote its acceptability and delivery, and the conception of good death in practice. (shrink)

BackgroundExisting clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care. MethodWe used a participatory development design. We worked together with stakeholders in a Community of Practice (...) throughout the study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA.ResultsWe distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the instrument on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The instrument, CURA, is a four-step low-threshold instrument that fosters ethical reflection.ConclusionsParticipatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics instruments. (shrink)

Patients in need of palliative care are often described as vulnerable. Being vulnerable can sometimes be interpreted as the opposite of being autonomous, if an autonomous person is seen as an independent, self-sufficient person who forms decisions independently of others. Such a dichotomous view can create a situation where one has experiences of vulnerability that cannot be reconciled with the central ethical principle of autonomy. The article presents a feminist ethical perspective on the conceptualisation of vulnerability in the (...) context of palliative care. It does so through the lens of the concepts of inherent and pathogenic vulnerability from the taxonomy on vulnerability suggested by Mackenzie et al. To differentiate between forms of vulnerability, is important since even though vulnerability can be regarded as a shared life condition it can be the product of practices creating harm to the patient. The article also presents an analysis of how vulnerability can be included in the interpretation of the ethical principle of autonomy, in order to be relevant in palliative care where vulnerability is salient, namely, as relational autonomy. Furthermore, two practical implications for nursing practice are suggested. Firstly, to acknowledge vulnerability as a shared life condition one needs training in order to neither be overwhelmed by one’s own vulnerability, nor become invulnerable when facing vulnerability in others. Secondly, to foster relational autonomy includes navigating between the patient exercising their autonomy within a framework of relations, and shielding the patient from paternalistic practices. Nurses could be particularly suited for this role, which includes creating an environment which is open and supportive; navigating between patient, family and staff; seeing and acknowledging the complex situation in which patient autonomy is actually played out; and promoting patient autonomy. (shrink)

In May 2019, an international conference on perinatal palliative care entitled “Yes to Life! Taking Care of the Precious Gift of Life in Its Frailty” was held in Rome. It was organized by the Italian nonprofit foundation Il Cuore in Una Goccia and the Vatican’s Dicastery for Laity, Family and Life. Pope Francis greeted the participants personally and delivered an address describing the goals and practices of perinatal palliative care as being in keeping with the (...) teachings of the Roman Catholic Church and the pastoral care of families. His endorsement represents a new pastoral development, a renewed focus on supporting families and infants who are affected by genetic... (shrink)

Background: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers’ everyday work. Research objective: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support (...) the handling of these problems. Research design: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. Findings: We found six categories of ethical problems (with the main focus on problems relating to the patient’s loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. Discussion: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Conclusion: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems. (shrink)

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all (...) members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

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

BackgroundIn Palliative Care, family and close people are an essential part of provision of care. They assume highly complex tasks for which they are not prepared, with considerable physical, psychological, social and economic impact. Informal Caregivers often falter in the final stage of life and develop distress, enhancing emotional burden and complicated grief. The lack of available and accessible in-person counselling resources is often reported by ICs. Online resources can promote early access to help and support for (...) patient-IC dyads in palliative care. The primary aim of this research is to co-design, develop and test the feasibility of the Help2Care-PAL mHealth app that addresses the needs of ICs of palliative patients cared for at home. This Digital Health Intervention in palliative care will be used for education, symptom management, communication and decision-making, to enhance Quality of Life of patients and ICs, fostering anticipatory grief and the reach and efficiency of services.MethodsThis study will use an iterative co-design process and convergent mixed-methods design, following the MORECare consensus for developing a complex intervention. Construction of the DHI will follow four main phases: a needs assessment ; design and co-production of mHealth materials and interventions to support ICs; the development of a mHealth app; and usability and feasibility of the mHealth app. The Help2Care-PAL platform seeks to build resources from the perspectives and needs of both family dyads and nursing professionals working in the field of community palliative care. User-centeredness will be ensured by the active participation of patient-IC dyads and professionals of the palliative care community.DiscussionThis mixed-method study will offer new insights on needs and expectations of patient-IC dyads and nurses in community palliative care regarding caregiving preparedness and online health resources. Through the implementation of an adaptive digital tool, we aim to improve access to palliative care family support, which is highly linked with the wellbeing of patients and especially new ICs. (shrink)

Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they (...) might consider a “good life” with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high‐quality, symptom‐based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia. (shrink)

The increase of high-risk newborns due to societal changes has presented neonatal intensive care unit nurses with more ethical challenges and heightened their perception of neonatal palliative care. Therefore, this study was a descriptive survey exploring the perceptions of neonatal intensive care unit nurse regarding biomedical ethics and neonatal palliative care in neonatal intensive care units. The research participants were 97 neonatal intensive care unit nurses who had been directly involved with end-of-life (...) care for high-risk babies. Data were collected from November to December 2021 through an online survey. The Korean version of Neonatal Palliative Care Attitude Scale and the tool of biomedical ethics were used. The collected data were analyzed using the T-test, ANOVA, Scheffé test, Pearson correlation coefficient, and multiple regression analysis. The mean score for perception of biomedical ethics in neonatal intensive care unit nurses was 2.89 of 4, and that of neonatal palliative care in neonatal intensive care unit nurses was 3.10 of 5. Existence of a protocol of neonatal palliative care, the experience of patients dying, and the right to life of neonates were factors influencing the perception of neonatal palliative care. The explanatory power was 12.5%. The data support the importance of guidelines regarding systematic neonatal palliative care. Also, developing programs for sharing and supporting experiences of patients dying among colleagues and persistent education about the right to life of neonates for neonatal intensive care unit nurses can improve perception of neonatal palliative care. (shrink)

Background: Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context. Aim: To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom. Design: Exploratory, sequential, mixed-methods design. Methods: Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 (...) nursing homes in the United Kingdom were used to explore ethical issues in palliative care. The ‘Ethical Issues in Palliative Care for Nursing Homes’ instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015. Ethical considerations: Ethical approval was granted by Queen’s University’s School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home’s manager. Findings: The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress. Conclusion: The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change. (shrink)

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

A historical understanding of the virtue of consolation, as contrasted to empathy, compassion, or sympathy, is developed. Recent findings from neuroscience are presented which support and affirm this understanding. These findings are related to palliative care and its current practice in bioethics.

Surveys carried out among palliative care physicians have shown that most participants do not support euthanasia and assisted suicide. Belgium, however, is one of the few countries in the world in which voluntary euthanasia is allowed by law. The potential influence of this legal dimension thus warranted a study of the attitudes of Belgian palliative care physicians toward euthanasia and assisted suicide. To this end, an anonymous self-administered questionnaire in Dutch was sent to all physicians working (...) in Flemish palliative care. 99 physicians responded .A majority of the physicians who responded are of the opinion that voluntary euthanasia can be ethically justified . Most physicians believe, nonetheless, that non-voluntary euthanasia is always unethical . More than three quarters of the respondents favour the inclusion of a ‘palliative filter’ in the law on euthanasia. Using a traditional cluster algorithm, the following three clusters were obtained: staunch advocates of euthanasia , opponents of euthanasia , and an intermediate group . There were no significant differences between the clusters on the level of gender, age, and years of experience in palliative care. A statistically significant association exists, however, between the euthanasia clusters and the religious or ideological clusters we had obtained in an earlier study. Church attending respondents are least likely to be staunch advocates of euthanasia. The majority of the physicians favour legalisation on assisted suicide. There is no significant association between the euthanasia clusters and attitudes toward assisted suicide.We conclude that although most Flemish palliative care physicians agree that there may be circumstances in which a euthanasia request is justified, they also strongly believe in the effects of good palliative care and want the ‘palliative filter’ to be included in the law on euthanasia. Religion and worldview are an important factor determining attitudes towards euthanasia. (shrink)

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

Syme, Rodney Palliative care, founded by Cicely Saunders, a devout Christian, has grown from a single London hospice to a world-wide specialty with strong government support. It is one of the most important developments in modern medicine. It aims to provide compassionate and holistic care for the terminally ill. Nevertheless opposition on religious grounds to assisted-dying or hastening of death has been a core principle of palliative care from its origin, and persists today.

Filial piety is a Confucian concept derived from Chinese culture, which advocates a set of moral norms, values, and practices of respect and caring for one’s parents. According to the dual-factor model of filial piety, reciprocal and authoritarian filial piety are two dimensions of filial piety. Reciprocal filial piety is concerned with sincere affection toward one’s parent and a longstanding positive parent-child relationship, while authoritarian filial piety is about obedience to social obligations to one’s parent, often by suppressing one’s own (...) wishes to conform the demands of the parent. The primary aim of this study is to investigate the moderating effect of culture on the relationships between filial piety and palliative care knowledge. The secondary aim is to investigate whether filial piety is a universal construct across Singaporean and Australian cultures. A total of 508 participants living in Singapore and Australia were surveyed between May and October 2020. The final sample comprised of 406 participants, with 224 Singaporeans and 182 Australians. There were 289 females, 115 males, and two unspecified gender in the sample, with an average age of 27.27 years. Results indicated a significant effect of culture on authoritarian filial piety and palliative care knowledge. Singaporeans showed higher authoritarian filial piety and higher palliative care knowledge than Australians. However, no effect of culture was found on reciprocal filial piety. Overall, no significant correlation existed between palliative care knowledge and reciprocal filial piety and authoritarian filial piety. For Singaporeans, a weak negative correlation was found between palliative care knowledge and authoritarian filial piety. In contrast, Australians and Singaporeans indicated a positive, moderate correlation between reciprocal and authoritarian filial piety. Further, culture moderated the relationship between authoritarian filial piety and palliative care knowledge. High authoritarian filial piety was associated with increased palliative care knowledge among Australians, while high authoritarian filial piety was associated with decreased palliative care knowledge among Singaporeans. The results support the conceptualization of filial piety as a possible psychological universal construct. In addition, the results point out an important implication that public health programs should target the appropriate filial piety types to enhance palliative care knowledge among Singaporeans and Australians. (shrink)

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

Increasingly, palliative care is being referred to as an essential programme and in some cases as a human right. Once it is recognized as such, it becomes part of the lexicon of social justice in that it can be argued that all members of society should have access to such care. However, this begs the question of how that care should be enacted, particularly in rural and remote areas. This question illustrates some of Friedrich Hayek's critiques (...) of social justice. Hayek has likened social justice to a ‘moral stone’ arguing that social justice is meaningless to the extent that society is impersonal and as such cannot be just, only those individuals who make up that society can be just. When responsibility for justice is assigned to an impersonal society, ideas of social justice can become a clarion call for whom no one is directly accountable. This opens the door for questionable macro‐level political agendas that have no capacity to enact the ideal, and worse, may suppress individual moral acts towards the desired end. Further, acts of interference at the macro level with the ideal of equal opportunity run the risk of disadvantaging other members of society. Instead, he has argued that a better approach lies in finding ways to induce and support individual moral acts that promote the human good. Hayek's arguments are particularly compelling for rural palliative care. In this paper we draw upon data from an ethnographic study in rural palliative care to illustrate the potential misfit between the ethical ideal of palliative care as expressed by rural participants and the narratives of social justice. (shrink)

The current Ebola virus epidemic in Western Africa appears to be spiraling out of control. The worst-case projections suggested that the unchecked spread could result in almost 1.4 million cases by the end of January 2015 with a case fatality rate of at least 50%. The United States and European nations have begun to respond in earnest with promises of supplies, isolation beds, and trained health care personnel in an effort to contain the epidemic and care for the (...) sick. However, there is neither a vaccine nor specific treatment for Ebola infection, and therapy is ideally centered on supportive care. I have previously argued that the provision of palliative care is obligatory during an overwhelming health catastrophe, notably pandemic influenza. Since affected Ebola patients have best outcomes with technologically advanced intensive care—resources in scarce supply in the area—I suggest that the only acceptable approach to large numbers of very sick, dying, and suffering Ebola patients who overwhelm the reso.. (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)

Introduction Quality improvement is the systematic seeking of improvements in care and experience. This discussion paper will explore how the principles of good clinical care and the established ethical frameworks for research can help guide its practice, using examples from palliative care. Quality improvement in palliative care Palliative care is well positioned to be at the vanguard of quality improvement in healthcare. But it holds ethical particularities which require specific considerations, that are (...) helpful for other specialities. The experiences of two improvement activities in palliative care, the Liverpool Care Pathway and Do Not Attempt Resuscitation status reviews, illustrate potential dangers of QI. Implications for ethical practice Recommendations for ethically sound quality improvement projects in palliative care include paying attention to the burden of time, viewing informed consent as a tool, monitoring for vulnerability and coercion and transparency in the use of data. The ethics and practices in clinical encounters provide a framework for approaching consent and protecting those with palliative care needs who are deemed as vulnerable. It is explicit in palliative care that time and energy are precious and finite resources. These must be valued and respected in any quality improvement projects. Respect for beneficence and autonomy is essential to avoid coercion and for any project to be ethically sound. Conclusion Quality improvement processes are an integral part of good healthcare practices. High ethical standards, a supportive culture, transparency and candour are needed for the promotion and sustainability of quality improvement in palliative care. (shrink)

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

IntroductionPalliative care is an emotionally and spiritually high-demanding setting of care. The literature reports on the main issues in order to implement self-care, but there are no models for the organization of the training course. We described the structure of training on self-care and its effects for a Hospital Palliative Care Unit.MethodWe used action-research training experience based mostly on qualitative data. Thematic analysis of data on open-ended questions, researcher’s field notes, oral and written feedback (...) from the trainer and the participants on training outcomes and satisfaction questionnaires were used.ResultsFour major themes emerged: “Professional role and personal feelings”; “Inside and outside the team”; “Do I listen to my emotions in the care relationship?”; “Death: theirs vs. mine.” According to participants’ point of view and researchers’ observations, the training course resulted in ameliorative adjustments of the program; improved skills in self-awareness of own’s emotions and sharing of perceived emotional burden; practicing “compassionate presence” with patients; shared language to address previously uncharted aspects of coping; allowing for continuity of the skills learned; translation of the language learned into daily clinical practices through specific facilitation; a structured staff’s support system for emotional experiences.DiscussionSelf-care is an important enabler for the care of others. The core of our intervention was to encourage a meta-perspective in which the trainees developed greater perspicacity pertaining to their professional role in the working alliance and also recognizing the contribution of their personal emotions to impasse experienced with patients. (shrink)

Background End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. Research Objective Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. Methods Using the descriptive quantitative approach, questionnaires were completed by 444 nephrology nurses (...) in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. Ethical Considerations The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). Results About one-third (30%–36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p<0.0001), have high end-of-life training (76.2%, p<0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p<0.0001) reported higher involvement in SDM compared to other nurses. Conclusions Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients. (shrink)

In the clinical practice of palliative medicine, recommended communication models fail to approximate the truth of suffering associated with an impending death. I provide evidence from patients' stories and empiric research alike to support this observation. Rather than attributing this deficiency to inadequate training or communication skills, I examine the epistemological premises of the biomedical language governing the patient-physician communication. I demonstrate that the contemporary biomedicine faces a fundamental aporetic occlusion in attempting to examine death. This review asserts that (...) the occlusion defines, rather than simply complicating, palliative care. Given the defining place of aporia in the care for the dying, I suggest that this finding shape the clinicians' responses to the needs of patients in clinical care and in designing palliative research. Lastly, I briefly signal that a genuinely apophatic voice construing the occlusion as a mystery rather than an aporia may be superior to the present communication and empathy models. (shrink)

Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values (...) that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients’ drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses’ profession in the palliative field and help them implement palliative care philosophy in practice. (shrink)

There is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is (...) a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics. (shrink)

Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values (...) that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients’ drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses’ profession in the palliative field and help them implement palliative care philosophy in practice. (shrink)

Background: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour (...) travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results: This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions: The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. (shrink)

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

The current Ebola virus epidemic in Western Africa appears to be spiraling out of control. The worst-case projections suggested that the unchecked spread could result in almost 1.4 million cases by the end of January 2015 with a case fatality rate of at least 50%. The United States and European nations have begun to respond in earnest with promises of supplies, isolation beds, and trained health care personnel in an effort to contain the epidemic and care for the (...) sick. However, there is neither a vaccine nor specific treatment for Ebola infection, and therapy is ideally centered on supportive care. I have previously argued that the provision of palliative care is obligatory during an overwhelming health catastrophe, notably pandemic influenza. Since affected Ebola patients have best outcomes with technologically advanced intensive care—resources in scarce supply in the area—I suggest that the only acceptable approach to large numbers of very sick, dying, and suffering Ebola patients who overwhelm the resources available to successfully manage them is effective palliative care. However, this could hasten death in this vulnerable population and hence, while ethically and medically justifiable, is not without social risk. (shrink)

Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of (...) palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region. The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum. (shrink)

Background: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour (...) travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results: This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions: The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. (shrink)