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

Background Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? -/- Aims The paper aims to identify changes and challenges in (...) class='Hi'>palliative care due to the use of SST. In addition, normative guiding criteria for the use of SST are developed. -/- Methods The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. -/- Results and Conclusion First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care. (shrink)

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

Hospice 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)

The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous assumptions (...) concerning the quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life. (shrink)

This paper aims at explicating a theory of hope that is also suitable for gravely ill people and based on virtue ethics, research in the psychology of “well-being,” and the philosophy of palliative care. The working hypotheses of the theory are that hope is conditioned neither by past events nor by present needs, but is not necessarily oriented toward the future, especially the distant future; that hope is related to personal agency and to freedom; and that hope is (...) deliberative, hence evaluative, motivatory, and rationally critical. Following Higgins’ distinction between “prevention-focus” and “promotion-focus” strategies of coping, and Rawls’ notion of the “Aristotelian principle,” it is argued that hope is the valuation of and personal identification with “promotion-focus” goals with an attitude of nonattachment to any one goal. (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)

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, (...) it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. (shrink)

Background Traditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely disabling, and potentially life-threatening nature of psychiatric disorders, there are neither palliative care units nor clinical guidelines on palliative measures for patients in psychiatry. Main text This paper contributes to the growing literature on a palliative approach in psychiatry and is based on the assumption that a change (...) of perspective from a curative to a palliative approach could help promote patient-centeredness and increase quality of life for severely ill patients in psychiatry as well as in somatic medicine. To exemplify this, we offer three different clinical scenarios: severe and enduring anorexia nervosa, treatment-refractory schizophrenia, and chronic suicidality and persistent self-injury in borderline personality disorder. Conclusion We emphasize that many typical interventions for treatment-refractory psychiatric disorders may indeed be of a palliative nature. Furthermore, introducing traditional features of palliative care, e.g. so-called goals of care conversations, could aid even further in ensuring that caregivers, patients, and families agree on which treatment goals are to be prioritized in order to optimize quality of life in spite of severe, persistent mental disorder. (shrink)

In September 1998 the Bundesrztekammer, i.e., the German Medical Association, published new principles concerning terminal medical care. Even before publication, a draft of these principles was very controversial, and prompted intense public debate in the mass media. Despite some of the critics' suspicions that the principles prepared the way for liberalization of active euthanasia, euthanasia is unequivocally rejected in the principles. Physician-assisted suicide is considered to violate professional medical rules. In leaving aside some of the notions customarily used in (...) the euthanasia debate, e.g., passive euthanasia, the principles emphasize the obligation of physicians to offer and the right of patients to receive palliative care. The principles explicitly list modalities of basic treatment that are indispensable in all cases, such as the obligation to satisfy hunger and thirst. This statement is meant to resolve the dispute on nutrition and hydration at the end of life, as it shifts the focus of care from maintaining physiological parameters to satisfying subjective needs. For patients in a persistent vegetative state, artificial feeding is held to be obligatory. Yet, the principles make reference to recent German jurisdiction which permit the stopping of artificial feeding if it is in accordance with the patient's presumed will. Additionally, the wording concerning this issue is found to remain unclear. Patients' autonomy is strengthened by explicitly welcoming advance directives as a means to ascertain patients' wills. The principles mark some changes compared to earlier documents. They deserve careful analysis and should be considered in the international debate on issues concerning the end of life. (shrink)

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

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)

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)

Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare. We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is (...) because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive. (shrink)

As palliative care develops across many of the countries of Europe, we find that it continues to raise important ethical challenges. Palliative care practice requires ethical sensitivity and understanding. At the same time the very existence of palliative care calls for ethical explanation. Ethics and palliative care meet over some vital issues: 'the good death', sedation at the end of life, requests for euthanasia, futile treatment, and the role of research. Yet (...) class='Hi'>palliative care appears uncertain about its goals and there is evidence that its ethical underpinnings are changing. Likewise, the moral problems of palliative care are only partly served by the four 'principles' of modern bioethics. This innovative book, with contributions by clinicians, ethicists, philosophers and social scientists, provides the first ever picture of palliative care ethics in the European context. It will be of interest to those involved in the delivery and management of palliative care services, as well as to students and researchers. (shrink)

Malaysia had its first four patients with COVID-19 on 25 January 2020. In the same week, the World Health Organization declared it as a public health emergency of international concern. The pandemic has since challenged the ethics and practice of medicine. There is palpable tension from the conflict of interest between public health initiatives and individual’s rights. Ensuring equitable care and distribution of health resources for patients with and without COVID-19 is a recurring ethical challenge for clinicians. Palliative (...) care aims to mitigate suffering caused by a life-limiting illness, and this crisis has led to the awareness and urgency to ensure it reaches all who needs it. We share here the palliative care perspectives and ethical challenges during the COVID-19 pandemic in Malaysia. (shrink)

A comprehensive analysis of ethical topics in palliative care, combining clinical experience and philosophical rigor. A broad array of topics are explored from historical, legal, clinical, and ethical perspectives, offering both the seasoned clinician and interested lay reader a thorough examination of the complex ethical issues facing patients suffering from life-threatening illness.

Practitioners of palliative care often argue for more resources to be provided by the state in order to lessen its reliance on charitable funding and to enable the services currently provided to some of those with terminal illnesses to be provided to all who would benefit from it. However, this is hard to justify on grounds of cost-effectiveness, since it is in the nature of palliative care that the benefits it brings to its patients are of (...) short duration. In particular, palliative care fares badly under a policy of QALY-maximisation, since procedures which prevent premature death (provided the life is of reasonable quality) or improve quality of life for those with longer life expectancy will produce more QALYs. This paper examines various responses to this problem and argues that in order to justify increased resources for palliative care its advocates must reject the ‘atomistic’ view of the value of life implicit in the QALY approach in favour of a ‘holistic’ or ‘narrative’ account. This, however, has implications which advocates of palliative care may be reluctant to embrace. (shrink)

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We (...) analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses’ attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously (...) sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units. (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)

It is a philosophy of patient care, and is therefore open to critique and evaluation.Using the Oxford Textbook of Palliative Medicine Third Edition as their ...

Many countries have not considered palliative care a public health problem. With limited resources, disease-oriented therapies and prevention measures take priority. In this paper, I intend to describe the moral framework for considering palliative care as a public health priority in resource-poor countries. A distributive theory of justice for health care should consider integrative palliative care as morally required as it contributes to improving normal functioning and preserving opportunities for the individual. For patients (...) requiring terminal care , we are guided less by principles of justice and more by the duty to relieve suffering and society's commitment to protecting the professional's obligation to uphold principles of beneficence, compassion and non-abandonment. A fair deliberation process is necessary to allow these strong moral commitments to serve as reasons when setting priorities in resource poor countries. (shrink)

A personal view made in light of the recent news article regarding a husband wanting to sue Addenbrooke's hospital over a Do Not Attempt Resuscitation decision. This article aims to highlight how the rolling out of cross boundary palliative care registers may be more at risk of infringing human rights.

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

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

LARSEN A‐C. Nursing Inquiry 2012; 19: 334–344 Trappings of technology: casting palliative care nursing as legal relationsCommunity palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in ‘real time’. This paper is guided by Heidegger’s approach to technologies and Habermas’ insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient (...) information add to nursing’s professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients’ legal rights to informational privacy and confidentiality. It explores nurses’ views of their nursing responsibilities regarding clients’ legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006. (shrink)

This book offers a comprehensive overview of the compatibility of palliative care with the vision of human dignity in the Catholic moral and theological traditions. The unique value of this book is that it presents expert analysis of the major domains of palliative care and how they are compatible with, and enhanced by, the holistic vision of the human person in Catholic health care. This volume will serve as a critically important ethical and theological resource (...) on palliative care, including care at the end of life, for bioethicists, theologians, palliative care specialists, other health care professionals, Catholic health care sponsors, health care administrators and executives, clergy, and students. Patients receiving palliative care and their families will also find this book to be a clarifying and reassuring resource. (shrink)

This paper is focused on the ethical dimension of palliative care for the terminally ill. I agree with other authors that the value of human dignity shall be acknowledged as the most important value in this setting. Recognition of the value of dignity as the central value requires responsible palliative care where the relational aspect between care-givers and care-receivers is of the greatest importance. In order to achieve this, dignity as a concept and the (...) notion of dignity in subjective, objective and normative worlds has to be in harmony. In reality, often these separate worlds present various threats to the notion of dignity and to dignified end-of-life care. I think that if we want our palliative care to be of high quality and humane, we have to urge medicine together with medical ethics to search for solutions to these threats to the dignity of patients. I, therefore, propose Leuven personalism to be one of the possible fruitful methodologies for medical ethics and for the promotion of dignity in a palliative care setting. (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)

The problem of inadequate pain management for both terminally ill patients and patients with chronic pain has recently been documented by a number of authors and studies. A 1997 report by the Institute of Medicine, for example, states that “a significant proportion of dying patients and patients with advanced disease experience serious pain, despite the availability of effective pharmacological and other options for relieving most pain.” There are particularly impressive data that pain associated with cancer is not adequately treated.The problem (...) has been attributed to inadequate education of physicians on approaches to pain management and an often misguided belief that prolonged therapy with certain pain medication will lead to addiction; legal obstacles, such as physicians’ fear of criminal prosecution and other disciplinary actions by state licensing boards for overprescribing narcotics; and inadequate insurance coverage as a result of narrow eligibility criteria for hospice care for Medicare beneficiaries, and inadequate reimbursement more generally for pain management and palliative care. (shrink)

Currently, euthanasia is officially allowed only in a number of countries, in most countries, as well as in the Russian Federation, it is prohibited by law. However, in clinical practice, there are a large number of incurable patients who experience intractable pain, so the problem of euthanasia is relevant. Aim: to analyze the current state of the problem of euthanasia and palliative care in pulmonology. Material and methods: review of domestic and foreign literature on the problem of euthanasia (...) over the past 10 years has been carried out. Literature search was carried out using the e-library and PubMed databases. Results: We present a medical and philosophical perspective. Currently, euthanasia is a way to quickly and painlessly die if there is a serious illness that is incurable, suffering and pain. The best and perhaps the only alternative to euthanasia is palliative care. In pulmonology, palliative care focuses on early detection of respiratory failure, dyspnea, fear and pain relief. The effective organization of palliative care in respiratory medicine depends on the well-coordinated work of pulmonologists, physiotherapists, nurses, and psychologists. Conclusion: The problem of euthanasia to date still remains controversial from both medical and ethical points of view. The adoption of euthanasia by law may be a deterrent to governments from funding research into new treatments. The risk of abuse of euthanasia in order to obtain organs for transplantation or to get rid of seriously ill burdensome relatives cannot be ruled out. It is necessary to consider the issue of introducing additional educational cycles on the issues of modern achievements in palliative medicine, technical means of rehabilitation and the peculiarities of their use in patients with various diseases in the terminal stage in the training of doctors and nurses. (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)

The paper discusses inappropriate (futile) treatment by analyzing the casuistics of palliative patients in the terminal stage of illness who are hospitalized at the Department of Internal Medicine and Geriatrics of the Faculty hospital with policlinic (FNsP). Our research applies the principles of palliative care in the context of bioethics. The existing clinical conditions of healthcare in Slovakia are characteristic of making a taboo of the issues of inappropriate treatment of palliative patients. Inductive-deductive and normative clinical (...) bioethics methods of palliative care and ethical strategy are applied for defining issues found in inappropriate hemodialysis treatment. An algorithm of hemodialysis treatment requires the definition of those lege artis criteria which, in the context of a patient’s autonomy and his/her decision, precondition the avoidance of the situation in which hemodialysis treatment is inappropriate (futile). Futile treatment in a terminal condition is ethically inappropriate medical treatment that extends the suffering of patients and their relatives. Its definition is determined by the relevant legislation and the methods of bioethics. An active palliative strategy is aimed at managing the process of incurable diseases in the patient’s bio-psycho-socio-spiritual continuity in the process of special bioethics. The global bioethical objective of general bioethics for palliative care is based on the paradigm of social harmony and solidarity in the context of an authentic modus of the patient’s existence as a constitutive principle for the phenomenon of the patient’s being to finite being (death). (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)

The concepts of hope and its absence, hopelessness, are seen as crucial in palliative care for people with motor neurone disease. A primary measure in psychological research on hopelessness in people with motor neurone disease is the Beck Hopelessness Scale. This scale can be understood as being conceptually based on the philosophical standard account of hope, which understands hope as an intentional expectancy. This essay argues that this is a misconstruction of hopelessness in palliative care. Rather, (...) pre-intentional hope is essential for palliative care of people with motor neurone disease. Pre-intentional hope enables the formation of intentional hopes and is intrinsically relational. Finally, it is argued that the absence of pre-intentional hope should not be subjected to psychiatric diagnosis, for example, in the form of demoralization disorder. (shrink)