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)

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)

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: 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)

The functioning of hospice institutions may be considered based on three fundamental, functions accomplished by it, i.e. existential, social and economic ones. Holistic evaluation of hospice care requires taking into account actual and potential advantages, possible to achieve both through society represented by all citizens, and through the economy. The article has a survey character – the literature is based on critical analysis within the scope ofthe subject raised. The work was made rich from two-year own experience (...) of volunteer work. For the purpose of realization of the subject raised, empirical examinations were also conducted based on the method of shadow prices and logical matrix. In this paper, the implementation of the function of an existential volunteer hospice is considered on the basis of its ability to alleviate the suffering of patients’ mental and spiritual capacity and give them practical help by volunteers. The usefulness of hospices, which is a part of their social function, was studied by considering the point of existence and functioning of palliative and long-term care centres. In order to define the economic function of a voluntary service, micro and macroeconomic types of analysis were used. One should, however, emphasise that these examinations should have an interdisciplinary character. (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)

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

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as (...) a resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization, hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life. (shrink)

Background: Despite their negative consequences, evidence shows that futile medical treatments are still being provided, particularly to terminally ill patients. Uncovering the reasons behind providing such treatments in different religious and sociocultural contexts can create a better understanding of medical futility and help manage it effectively. Research objectives: This study was undertaken to explore Iranian nurses’ and physicians’ perceptions of the reasons behind providing futile medical treatments. Research design: This was a qualitative exploratory study. Study data were gathered through conducting (...) in-depth semi-structured personal interviews and analyzed using the conventional content analysis method. Participants and research context: Twenty-one nurses and nine medical specialists were recruited purposively from four teaching hospitals affiliated to Tehran University of Medical Sciences. Ethical considerations: This study was approved by the Nursing and Midwifery Research Center and the Research Ethics Committee of Tehran University of Medical Sciences. All participants gave informed consent for the research and that their anonymity was preserved. Findings: The main theme of the study was “having an obligation to provide medical treatments despite knowing their futility.” This theme consisted of three main categories including patients’ and family members’ request for continuing life-sustaining treatments, healthcare professionals’ personal motives, and organizational atmosphere and structure. Discussion and conclusion: Different personal and organizational factors contribute to providing futile medical treatments. Promoting the structure and the function of hospital ethics committees, establishing and developing home care facilities, increasing the number of palliative care centers and hospices, and educating healthcare professionals, patients, and family members about the services and the benefits of such centers can facilitate making wise decisions about continuing or discontinuing treatments which have been labeled as futile. (shrink)

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

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)

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)

Background: Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice. Aim: To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective. Method: A case study based on an anthropological field study among patients with advanced cancer in Denmark. Ethical considerations: Followed the principles of the Helsinki Declaration. Findings: Two cases illustrated situations where nurses refused (...) patient involvement in their own case. Discussion: Focus on two ethical issues, namely ‘including patients’ experiences in palliative nursing care’ and ‘relational distribution of power and knowledge’, inspired primarily by Hannah Arendt’s concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients’ palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned ‘thoughtlessness’ of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients’ invitations to involve them in their own case. Conclusion: The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that ‘thoughtlessness’ appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses’ ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare. (shrink)

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life (...) class='Hi'>care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life. (shrink)

Resumen Ésta es la primera traducción al español de las guías “Atención después de la investigación: un marco para los comités de ética de investigación del National Health Service (NHS) (borrador versión 8.0)”. El documento afirma que existe una fuerte obligación moral de garantizar que los participantes enfermos de un estudio clínico hagan una transición después del estudio hacia una atención de la salud apropiada. Con “atención de la salud apropiada” se hace referencia al acceso para los participantes a (...) la atención de la salud, proporcionada principalmente por el National Health Service (en adelante NHS), el sistema de salud del Reino Unido, y/o a la intervención en estudio, también llamada producto o tratamiento en investigación. Las guías “Atención después de la investigación” están dirigidas principalmente a los miembros de los 79 comités de ética de investigación del NHS y a quienes presentan sus estudios de investigación ante estos comités. Se trata de un documento borrador muy avanzado, trabajado en numerosas reuniones, durante más de 3 años, que ha sido discutido por participantes de estudios y miembros de la comunidad, miembros y presidentes de comités de ética de investigación del Reino Unido, especialistas internacionales en ética de la investigación, representantes de la industria y otras partes interesadas. La redacción de las guías es producto de la colaboración de Neema Sofaer y Penney Lewis, ambas investigadoras del King’s College London, en el Centre of Medical Law and Ethics del Dickson Poon School of Law, y Hugh Davies, Asesor en Ética de la Investigación de la Health Research Authority (HRA) del NHS. El traductor del presente documento, Ignacio Mastroleo, participó del workshop en la Fundación Brocher (Ginebra, Suiza, diciembre de 2011) donde se revisó el borrador versión 7.0 y contribuyó en la revisión del borrador de la versión 8.0 durante el 2012. -/- Abstract This is the first Spanish translation of the guidelines “Care after research: a framework for NHS RECs (8th draft)”. The document states that there is a strong moral obligation to ensure that participants in a clinical study who are ill transition after the study to appropriate healthcare. The terms "appropriate healthcare" refer to participants’ access to health care, mainly provided by the National Health Service (NHS), the health system in the UK, and/or to the intervention study also named investigational treatment or product. The guides "Care after research" are mainly directed to members of the 79 NHS committees of research ethics (RECs) and to those who submit their research to these committees. This is a very advanced draft document, worked in several meetings, for more than three years, that has been discussed with study participants and community members, members and chairs of RECs in the UK, international specialists in research ethics, industry representatives and other stakeholders. The drafting of the guidelines is the result of the collaboration of Neema Sofaer and Penney Lewis, both researchers at King's College London, at the Centre of Medical Law and Ethics of Dickson Poon School of Law, and Hugh Davies, Research Ethics Advisor of the Health Research Authority (HRA) of the NHS. The translator of this document, Ignacio Mastroleo, attended the workshop at the Brocher Foundation (Geneva, Switzerland, December 2011) where draft version 7.0 was revised and contributed in the revision of draft version 8.0 during 2012. (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)

Objectives—To investigate the incidence and solution of ethical dilemmas in a palliative care unit.Design—Health care workers recorded daily all dilemmas in caring for each patient.Setting—Palliative care unit of National Taiwan University Hospital in Taiwan.Patients—Two hundred and forty-six consecutive patients with terminal cancer during 1997-8.Main measurement—Ethical dilemmas in the questionnaire were categorised as follows: telling the truth; place of care; therapeutic strategy; hydration and nutrition; blood transfusion; alternative treatment; terminal sedation; use of medication, and (...) others.Results—The type and frequency of ethical dilemmas encountered were: place of care ; truth-telling ; hydration and nutrition ; therapeutic strategy , and use of medication . Ethical problems relating to the place of care and to therapeutic strategy were unlikely to be solved with increased hospital stay and some ethical dilemmas remained unsolved even in the final week in hospital, including place of care , truth-telling and therapeutic strategy . Problems of truth-telling occurred in nearly half of patients over sixty-five-years-old. Conflicts about blood transfusion were experienced in all patients below 18-years-old, and the dilemmas concerning the place of care occurred most frequently with head and neck cancer patients .Conclusions—The solution of ethical dilemmas required refocusing by medical professionals on the importance of continuing communication. Improved ethical training for professionals would contribute to solving the moral dilemmas of palliative care. (shrink)

Background: There are intriguing and challenging ethical dilemmas in the practice of palliative care in a traditional developing society.Objective: To review the different ethical issues involved in cancer and palliative care in developing countries, with special reference to India.Methods: Published literature on pain relief and palliative care in the developing countries was reviewed to identify ethical issues and dilemmas related to these, and ways in which ethical principles could be observed in delivery of (...) class='Hi'>palliative care in such countries are discussed.Results: The literature review revealed a number of ethical dilemmas and challenges that professionals, cancer patients and their families encountered during palliative care. It was noted that patients’ preferences and decisions are influenced by family members. Dilemmas leave the professionals and families confused about how ethical their actions have been. Specific ethical issues were noted in relation to the availability and use of oral morphine for pain relief, spiritual care, lack of adequate palliative care services, and palliative care education.Conclusions: The four principles of ethics posed difficulties in understanding the complex ethical issues in a developing country with a traditional background. Ethical issues need to be handled delicately and sensitively in palliative care settings, within the framework of the traditions and culture of the society and financial constraints. The possible role of ethics committees in palliative care settings to help decision-making needs to be studied and discussed. (shrink)

This book on the history of palliative care, 1500-1970 traces the historical roots of modern palliative care in Europe to the rise of the hospice movement in the 1960s. The author discusses largely forgotten premodern concepts like cura palliativa and euthanasia medica and describes, how patients and physicians experienced and dealt with terminal illness. He traces the origins of hospitals for incurable and dying patients and follows the long history of ethical debates on issues like (...) truth-telling and the intentional shortening of the dying patients’ lives and the controversies they sparked between physicians and patients. An eye opener for anyone interested in the history of ethical decision making regarding terminal care of critically ill patients. (shrink)

Palliative care seeks to provide holistic care to improve the quality of life for the sick, especially as they approach the end of their lives. Addressing the spiritual dimension of the human person is useful because it provides answers to the meaning of life. Spiritual care has been shown to be of great benefit to patients. Therefore, this paper explores the importance of the spiritual dimension in palliative care; highlight the act of listening as (...) a key part of spiritual care, showing that physician burnout is the main obstacle to improving listening as an appropriate service that is both comforting and healing. -/- Los cuidados paliativos buscan ofrecer una atención holística para brindar una mejor calidad de vida a los enfermos, especialmente cuando se aproximan al fin de su existencia. Profundizar en la dimensión espiritual de la persona humana resulta útil puesto que ofrece respuestas al sentido de la vida. Se ha constatado que la atención espiritual aporta grandes beneficios para el paciente. Es por eso que en este trabajo hemos querido profundizar en la importancia de la dimensión espiritual en los cuidados paliativos; se destaca la actitud de la escucha como pieza clave de dicha atención espiritual, lo que evidencia que el burnout de los médicos es el principal obstáculo para potenciar la escucha como una adecuada disposición que resulte consoladora y sanadora. (shrink)

Herbert, Dilinie As part of the Inquiry into End of Life Choices, commissioned by the Victorian State Government on 7 May 2015, members of the community were invited to share their attitudes towards assisted dying by written submissions. The Inquiry also hosted a panel discussion with a few selected respondents. The final report prepared by the Inquiry is a comprehensive document that identified common themes relating to the benefits and concerns about a possible assisted dying framework. Some respondents used the (...) opportunity to advocate in favour of palliative care services and advance care planning. There were other respondents that were apprehensive about possible changes to the law and wary that it could incite permissible practices of assisted death in Victoria which are in contradiction to existing ethical beliefs, values and norms. Their anxiety was in relation to a potential slippery slope effect of these laws in the future. In this article I will explore how the slippery slope effect has been used to criticise euthanasia legislation, using data from the Netherlands. Although there are indications that the slippery slope is apparent in the Netherlands, there are also contrary indications that are otherwise open for interpretation. I propose that the Inquiry was a valuable opportunity to reflect on community attitudes towards assisted death and that the recommendations to better resource palliative care services, is a positive outcome. (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)

Table of contentsI1 Proceedings of the 4th World Conference on Research IntegrityConcurrent Sessions:1. Countries' systems and policies to foster research integrityCS01.1 Second time around: Implementing and embedding a review of responsible conduct of research policy and practice in an Australian research-intensive universitySusan Patricia O'BrienCS01.2 Measures to promote research integrity in a university: the case of an Asian universityDanny Chan, Frederick Leung2. Examples of research integrity education programmes in different countriesCS02.1 Development of a state-run “cyber education program of research ethics” in (...) KoreaEun Jung Ko, Jin Sun Kwak, TaeHwan Gwon, Ji Min Lee, Min-Ho LeeCS02.3 Responsible conduct of research teachers’ training courses in Germany: keeping on drilling through hard boards for more RCR teachersHelga Nolte, Michael Gommel, Gerlinde Sponholz3. The research environment and policies to encourage research integrityCS03.1 Challenges and best practices in research integrity: bridging the gap between policy and practiceYordanka Krastev, Yamini Sandiran, Julia Connell, Nicky SolomonCS03.2 The Slovenian initiative for better research: from national activities to global reflectionsUrsa Opara Krasovec, Renata SribarCS03.3 Organizational climate assessments to support research integrity: background of the Survey of Organizational Research Climate and the experience with its use at Michigan State UniversityBrian C. Martinson, Carol R. Thrush, C.K. Gunsalus4. Expressions of concern and retractionsCS04.1 Proposed guidelines for retraction notices and their disseminationIvan Oransky, Adam MarcusCS04.2 Watching retractions: analysis of process and practice, with data from the Wiley retraction archivesChris Graf, Verity Warne, Edward Wates, Sue JoshuaCS04.3 An exploratory content analysis of Expressions of ConcernMiguel RoigCS04.4 An ethics researcher in the retraction processMichael Mumford5. Funders' role in fostering research integrityCS05.1 The Fonds de Recherche du Québec’s institutional rules on the responsible conduct of research: introspection in the funding agency activitiesMylène Deschênes, Catherine Olivier, Raphaëlle Dupras-LeducCS05.2 U.S. Public Health Service funds in an international setting: research integrity and complianceZoë Hammatt, Raju Tamot, Robin Parker, Cynthia Ricard, Loc Nguyen-Khoa, Sandra TitusCS05.3 Analyzing decision making of funders of public research as a case of information asymmetryKarsten Klint JensenCS05.4 Research integrity management: Empirical investigation of academia versus industrySimon Godecharle, Ben Nemery, Kris Dierickx5A: Education: For whom, how, and what?CS05A.1 Research integrity or responsible conduct of research? What do we aim for?Mickey Gjerris, Maud Marion Laird Eriksen, Jeppe Berggren HoejCS05A.2 Teaching and learning about RCR at the same time: a report on Epigeum’s RCR poll questions and other assessment activitiesNicholas H. SteneckCS05A.4 Minding the gap in research ethics education: strategies to assess and improve research competencies in community health workers/promoteresCamille Nebeker, Michael Kalichman, Elizabeth Mejia Booen, Blanca Azucena Pacheco, Rebeca Espinosa Giacinto, Sheila Castaneda6. Country examples of research reward systems and integrityCS06.1 Improving systems to promote responsible research in the Chinese Academy of SciencesDing Li, Qiong Chen, Guoli Zhu, Zhonghe SunCS06.4 Exploring the perception of research integrity amongst public health researchers in IndiaParthasarathi Ganguly, Barna Ganguly7. Education and guidance on research integrity: country differencesCS07.1 From integrity to unity: how research integrity guidance differs across universities in Europe.Noémie Aubert Bonn, Kris Dierickx, Simon GodecharleCS07.2 Can education and training develop research integrity? The spirit of the UNESCO 1974 recommendation and its updatingDaniele Bourcier, Jacques Bordé, Michèle LeducCS07.3 The education and implementation mechanisms of research ethics in Taiwan's higher education: an experience in Chinese web-based curriculum development for responsible conduct of researchChien Chou, Sophia Jui-An PanCS07.4 Educating principal investigators in Swiss research institutions: present and future perspectivesLouis Xaver Tiefenauer8. Measuring and rewarding research productivityCS08.1 Altimpact: how research integrity underpins research impactDaniel Barr, Paul TaylorCS08.2 Publication incentives: just reward or misdirection of funds?Lyn Margaret HornCS08.3 Why Socrates never charged a fee: factors contributing to challenges for research integrity and publication ethicsDeborah Poff9. Plagiarism and falsification: Behaviour and detectionCS09.1 Personality traits predict attitude towards plagiarism of self and others in biomedicine: plagiarism, yes we can?Martina Mavrinac, Gordana Brumini, Mladen PetrovečkiCS09.2 Investigating the concept of and attitudes toward plagiarism for science teachers in Brazil: any challenges for research integrity and policy?Christiane Coelho Santos, Sonia VasconcelosCS09.3 What have we learnt?: The CrossCheck Service from CrossRefRachael LammeyCS09.4 High p-values as a sign of data fabrication/falsificationChris Hartgerink, Marcel van Assen, Jelte Wicherts10. Codes for research integrity and collaborationsCS10.1 Research integrity in cross-border cooperation: a Nordic exampleHanne Silje HaugeCS10.3 Research integrity, research misconduct, and the National Science Foundation's requirement for the responsible conduct of researchAaron MankaCS10.4 A code of conduct for international scientific cooperation: human rights and research integrity in scientific collaborations with international academic and industry partnersRaffael Iturrizaga11. Countries' efforts to establish mentoring and networksCS11.1 ENRIO : a network facilitating common approaches on research integrity in EuropeNicole FoegerCS11.2 Helping junior investigators develop in a resource-limited country: a mentoring program in PeruA. Roxana Lescano, Claudio Lanata, Gissella Vasquez, Leguia Mariana, Marita Silva, Mathew Kasper, Claudia Montero, Daniel Bausch, Andres G LescanoCS11.3 Netherlands Research Integrity Network: the first six monthsFenneke Blom, Lex BouterCS11.4 A South African framework for research ethics and integrity for researchers, postgraduate students, research managers and administratorsLaetus OK Lategan12. Training and education in research integrity at an early career stageCS12.1 Research integrity in curricula for medical studentsGustavo Fitas ManaiaCS12.2 Team-based learning for training in the responsible conduct of research supports ethical decision-makingWayne T. McCormack, William L. Allen, Shane Connelly, Joshua Crites, Jeffrey Engler, Victoria Freedman, Cynthia W. Garvan, Paul Haidet, Joel Hockensmith, William McElroy, Erik Sander, Rebecca Volpe, Michael F. VerderameCS12.4 Research integrity and career prospects of junior researchersSnezana Krstic13. Systems and research environments in institutionsCS13.1 Implementing systems in research institutions to improve quality and reduce riskLouise HandyCS13.2 Creating an institutional environment that supports research integrityDebra Schaller-DemersCS13.3 Ethics and Integrity Development Grants: a mechanism to foster cultures of ethics and integrityPaul Taylor, Daniel BarrCS13.4 A culture of integrity at KU LeuvenInge Lerouge, Gerard Cielen, Liliane Schoofs14. Peer review and its role in research integrityCS14.1 Peer review research across disciplines: transdomain action in the European Cooperation in Science and Technology “New Frontiers of Peer Review ”Ana Marusic, Flaminio SquazzoniCS14.2 Using blinding to reduce bias in peer reviewDavid VauxCS14.3 How to intensify the role of reviewers to promote research integrityKhalid Al-Wazzan, Ibrahim AlorainyCS14.4 Credit where credit’s due: professionalizing and rewarding the role of peer reviewerChris Graf, Verity Warne15. Research ethics and oversight for research integrity: Does it work?CS15.1 The psychology of decision-making in research ethics governance structures: a theory of bounded rationalityNolan O'Brien, Suzanne Guerin, Philip DoddCS15.2 Investigator irregularities: iniquity, ignorance or incompetence?Frank Wells, Catherine BlewettCS15.3 Academic plagiarismFredric M. Litto16. Research integrity in EuropeCS16.1 Whose responsibility is it anyway?: A comparative analysis of core concepts and practice at European research-intensive universities to identify and develop good practices in research integrityItziar De Lecuona, Erika Löfstrom, Katrien MaesCS16.2 Research integrity guidance in European research universitiesKris Dierickx, Noémie Bonn, Simon GodecharleCS16.3 Research Integrity: processes and initiatives in Science Europe member organisationsTony Peatfield, Olivier Boehme, Science Europe Working Group on Research IntegrityCS16.4 Promoting research integrity in Italy: the experience of the Research Ethics and Bioethics Advisory Committee of the Consiglio Nazionale delle Ricerche Cinzia Caporale, Daniele Fanelli17. Training programs for research integrity at different levels of experience and seniorityCS17.1 Meaningful ways to incorporate research integrity and the responsible conduct of research into undergraduate, graduate, postdoctoral and faculty training programsJohn Carfora, Eric Strauss, William LynnCS17.2 "Recognize, respond, champion": Developing a one-day interactive workshop to increase confidence in research integrity issuesDieter De Bruyn, Bracke Nele, Katrien De Gelder, Stefanie Van der BurghtCS17.4 “Train the trainer” on cultural challenges imposed by international research integrity conversations: lessons from a projectJosé Roberto Lapa e Silva, Sonia M. R. Vasconcelos18. Research and societal responsibilityCS18.1 Promoting the societal responsibility of research as an integral part of research integrityHelene IngierdCS18.2 Social responsibility as an ethical imperative for scientists: research, education and service to societyMark FrankelCS18.3 The intertwined nature of social responsibility and hope in scienceDaniel Vasgird, Stephanie BirdCS18.4 Common barriers that impede our ability to create a culture of trustworthiness in the research communityMark Yarborough19. Publication ethicsCS19.1 The authors' forum: A proposed tool to improve practices of journal editors and promote a responsible research environmentIbrahim Alorainy, Khalid Al-WazzanCS19.2 Quantifying research integrity and its impact with text analyticsHarold GarnerCS19.3 A closer look at authorship and publication ethics of multi- and interdisciplinary teamsLisa Campo-Engelstein, Zubin Master, Elise Smith, David Resnik, Bryn Williams-JonesCS19.4 Invisibility of duplicate publications in biomedicineMario Malicki, Ana Utrobicic, Ana Marusic20. The causes of bad and wasteful research: What can we do?CS20.1 From countries to individuals: unravelling the causes of bias and misconduct with multilevel meta-meta-analysisDaniele Fanelli, John PA IoannidisCS20.2 Reducing research waste by integrating systems of oversight and regulationGerben ter Riet, Tom Walley, Lex Marius BouterCS20.3 What are the determinants of selective reporting?: The example of palliative care for non-cancer conditionsJenny van der Steen, Lex BouterCS20.4 Perceptions of plagiarism, self-plagiarism and redundancy in research: preliminary results from a national survey of Brazilian PhDsSonia Vasconcelos, Martha Sorenson, Francisco Prosdocimi, Hatisaburo Masuda, Edson Watanabe, José Carlos Pinto, Marisa Palácios, José Lapa e Silva, Jacqueline Leta, Adalberto Vieyra, André Pinto, Mauricio Sant’Ana, Rosemary Shinkai21. Are there country-specific elements of misconduct?CS21.1 The battle with plagiarism in Russian science: latest developmentsBoris YudinCS21.2 Researchers between ethics and misconduct: A French survey on social representations of misconduct and ethical standards within the scientific communityEtienne Vergès, Anne-Sophie Brun-Wauthier, Géraldine VialCS21.3 Experience from different ways of dealing with research misconduct and promoting research integrity in some Nordic countriesTorkild VintherCS21.4 Are there specifics in German research misconduct and the ways to cope with it?Volker Bähr, Charité22. Research integrity teaching programmes and their challengesCS22.1 Faculty mentors and research integrityMichael Kalichman, Dena PlemmonsCS22.2 Training the next generation of scientists to use principles of research quality assurance to improve data integrity and reliabilityRebecca Lynn Davies, Katrina LaubeCS22.3 Fostering research integrity in a culturally-diverse environmentCynthia Scheopner, John GallandCS22.4 Towards a standard retraction formHervé Maisonneuve, Evelyne Decullier23. Commercial research and integrityCS23.1 The will to commercialize: matters of concern in the cultural economy of return-on-investment researchBrian NobleCS23.2 Quality in drug discovery data reporting: a mission impossible?Anja Gilis, David J. Gallacher, Tom Lavrijssen, Malwitz David, Malini Dasgupta, Hans MolsCS23.3 Instituting a research integrity policy in the context of semi-private-sector funding: an example in the field of occupational health and safetyPaul-Emile Boileau24. The interface of publication ethics and institutional policiesCS24.1 The open access ethical paradox in an open government effortTony SavardCS24.2 How journals and institutions can work together to promote responsible conductEric MahCS24.3 Improving cooperation between journals and research institutions in research integrity casesElizabeth Wager, Sabine Kleinert25. Reproducibility of research and retractionsCS25.1 Promoting transparency in publications to reduce irreproducibilityVeronique Kiermer, Andrew Hufton, Melanie ClyneCS25.2 Retraction notices issued for publications by Latin American authors: what lessons can we learn?Sonia Vasconcelos, Renan Moritz Almeida, Aldo Fontes-Pereira, Fernanda Catelani, Karina RochaCS25.3 A preliminary report of the findings from the Reproducibility Project: Cancer biologyElizabeth Iorns, William Gunn26. Research integrity and specific country initiativesCS26.1 Promoting research integrity at CNRS, FranceMichèle Leduc, Lucienne LetellierCS26.2 In pursuit of compliance: is the tail wagging the dog?Cornelia MalherbeCS26.3 Newly established research integrity policies and practices: oversight systems of Japanese research universitiesTakehito Kamata27. Responsible conduct of research and country guidelinesCS27.1 Incentives or guidelines? Promoting responsible research communication through economic incentives or ethical guidelines?Vidar EnebakkCS27.3 Responsible conduct of research: a view from CanadaLynn PenrodCS27.4 The Danish Code of Conduct for Research Integrity: a national initiative to promote research integrity in DenmarkThomas Nørgaard, Charlotte Elverdam28. Behaviour, trust and honestyCS28.1 The reasons behind non-ethical behaviour in academiaYves FassinCS28.2 The psychological profile of the dishonest scholarCynthia FekkenCS28.3 Considering the implications of Dan Ariely’s keynote speech at the 3rd World Conference on Research Integrity in MontréalJamal Adam, Melissa S. AndersonCS28.4 Two large surveys on psychologists’ views on peer review and replicationJelte WichertsBrett Buttliere29. Reporting and publication bias and how to overcome itCS29.1 Data sharing: Experience at two open-access general medical journalsTrish GrovesCS29.2 Overcoming publication bias and selective reporting: completing the published recordDaniel ShanahanCS29.3 The EQUATOR Network: promoting responsible reporting of health research studiesIveta Simera, Shona Kirtley, Eleana Villanueva, Caroline Struthers, Angela MacCarthy, Douglas Altman30. The research environment and its implications for integrityCS30.1 Ranking of scientists: the Russian experienceElena GrebenshchikovaCS30.4 From cradle to grave: research integrity, research misconduct and cultural shiftsBronwyn Greene, Ted RohrPARTNER SYMPOSIAPartner Symposium AOrganized by EQUATOR Network, Enhancing the Quality and Transparency of Health ResearchP1 Can we trust the medical research literature?: Poor reporting and its consequencesIveta SimeraP2 What can BioMed Central do to improve published research?Daniel Shanahan, Stephanie HarrimanP3 What can a "traditional" journal do to improve published research?Trish GrovesP4 Promoting good reporting practice for reliable and usable research papers: EQUATOR Network, reporting guidelines and other initiativesCaroline StruthersPartner Symposium COrganized by ENRIO, the European Network of Research Integrity OfficersP5 Transparency and independence in research integrity investigations in EuropeKrista Varantola, Helga Nolte, Ursa Opara, Torkild Vinther, Elizabeth Wager, Thomas NørgaardPartner Symposium DOrganized by IEEE, the Institute of Electrical and Electronics EngineersRe-educating our author community: IEEE's approach to bibliometric manipulation, plagiarism, and other inappropriate practicesP6 Dealing with plagiarism in the connected world: An Institute of Electrical and Electronics Engineers perspectiveJon RokneP7 Should evaluation of raises, promotion, and research proposals be tied to bibliometric indictors? What the Institute of Electrical and Electronics Engineers is doing to answer this questionGianluca SettiP8 Recommended practices to ensure conference content qualityGordon MacPhersonPartner Symposium EOrganized by the Committee on Freedom and Responsibility in the Conduct of Science of ICSU, the International Council for ScienceResearch assessment and quality in science: perspectives from international science and policy organisationsP9 Challenges for science and the problems of assessing researchEllen HazelkornP10 Research assessment and science policy developmentCarthage SmithP11 Research integrity in South Africa: the value of procedures and processes to global positioningRobert H. McLaughlinP12 Rewards, careers and integrity: perspectives of young scientists from around the worldTatiana Duque MartinsPartner Symposium FOrganized by the Online Resource Center for Ethics Education in Engineering and Science / Center for Engineering, Ethics, and Society of the National Academy of EngineeringP13 Research misconduct: conceptions and policy solutionsTetsuya Tanimoto, Nicholas Steneck, Daniele Fanelli, Ragnvald Kalleberg, Tajammul HusseinPartner Symposium HOrganized by ORI, the Office of Research Integrity; Universitas 21; and the Asia Pacific Research Integrity NetworkP14 International integrity networks: working together to ensure research integrityPing Sun, Ovid Tzeng, Krista Varantola, Susan ZimmermanPartner Symposium IOrganized by COPE, the Committee on Publication EthicsPublication without borders: Ethical challenges in a globalized worldP15 Authorship: credit and responsibility, including issues in large and interdisciplinary studiesRosemary ShinkaiPartner Symposium JOrganized by CITI, the Cooperative Institutional Training InitiativeExperiences on research integrity educational programs in Colombia, Costa Rica and PeruP16 Experiences in PeruRoxana LescanoP17 Experiences in Costa RicaElizabeth HeitmanP18 Experiences in ColumbiaMaria Andrea Rocio del Pilar Contreras NietoPoster Session B: Education, training, promotion and policyPT.01 The missing role of journal editors in promoting responsible researchIbrahim Alorainy, Khalid Al-WazzanPT.02 Honorary authorship in Taiwan: why and who should be in charge?Chien Chou, Sophia Jui-An PanPT.03 Authorship and citation manipulation in academic researchEric Fong, Al WilhitePT.04 Open peer review of research submission at medical journals: experience at BMJ Open and The BMJTrish GrovesPT.05 Exercising authorship: claiming rewards, practicing integrityDésirée Motta-RothPT.07 Medical scientists' views on publication culture: a focus group studyJoeri Tijdink, Yvo SmuldersPoster Session B: Education, training, promotion and policyPT.09 Ethical challenges in post-graduate supervisionLaetus OK LateganPT.10 The effects of viable ethics instruction on international studentsMichael Mumford, Logan Steele, Logan Watts, James Johnson, Shane Connelly, Lee WilliamsPT.11 Does language reflect the quality of research?Gerben ter Riet, Sufia Amini, Lotty Hooft, Halil KilicogluPT.12 Integrity complaints as a strategic tool in policy decision conflictsJanneke van Seters, Herman Eijsackers, Fons Voragen, Akke van der Zijpp and Frans BromPoster Session C: Ethics and integrity intersectionsPT.14 Regulations of informed consent: university-supported research processes and pitfalls in implementationBadaruddin Abbasi, Naif Nasser AlmasoudPT.15 A review of equipoise as a requirement in clinical trialsAdri LabuschagnePT.16 The Research Ethics Library: online resource for research ethics educationJohanne Severinsen, Espen EnghPT.17 Research integrity: the view from King Abdulaziz City for Science and TechnologyDaham Ismail AlaniPT. 18 Meeting global challenges in high-impact publications and research integrity: the case of the Malaysian Palm Oil BoardHJ. Kamaruzaman JusoffPT.19 University faculty perceptions of research practices and misconductAnita Gordon, Helen C. HartonPoster Session D: International perspectivesPT.21 The Commission for Scientific Integrity as a response to research fraudDieter De Bruyn, Stefanie Van der BurghtPT. 22 Are notions of the responsible conduct of research associated with compliance with requirements for research on humans in different disciplinary traditions in Brazil?Karina de Albuquerque Rocha, Sonia Maria Ramos de VasconcelosPT.23 Creating an environment that promotes research integrity: an institutional model of Malawi Liverpool Welcome TrustLimbanazo MatandikaPT.24 How do science policies in Brazil influence user-engaged ecological research?Aline Carolina de Oliveira Machado Prata, Mark William NeffPoster Session E: Perspectives on misconductPT.26 What “causes” scientific misconduct?: Testing major hypotheses by comparing corrected and retracted papersDaniele Fanelli, Rodrigo Costas, Vincent LarivièrePT.27 Perception of academic plagiarism among dentistry studentsDouglas Leonardo Gomes Filho, Diego Oliveira GuedesPT. 28 a few bad apples?: Prevalence, patterns and attitudes towards scientific misconduct among doctoral students at a German university hospitalVolker Bähr, Niklas Keller, Markus Feufel, Nikolas OffenhauserPT. 29 Analysis of retraction notices published by BioMed CentralMaria K. Kowalczuk, Elizabeth C. MoylanPT.31 "He did it" doesn't work: data security, incidents and partnersKatie SpeanburgPoster Session F: Views from the disciplinesPT.32 Robust procedures: a key to generating quality results in drug discoveryMalini Dasgupta, Mariusz Lubomirski, Tom Lavrijssen, David Malwitz, David Gallacher, Anja GillisPT.33 Health promotion: criteria for the design and the integrity of a research projectMaria Betânia de Freitas Marques, Laressa Lima Amâncio, Raphaela Dias Fernandes, Oliveira Patrocínio, and Cláudia Maria Correia Borges RechPT.34 Integrity of academic work from the perspective of students graduating in pharmacy: a brief research studyMaria Betânia de Freitas Marques, Cláudia Maria Correia Borges Rech, Adriana Nascimento SousaPT.35 Research integrity promotion in the Epidemiology and Health Services, the journal of the Brazilian Unified Health SystemLeila Posenato GarciaPT.36 When are clinical trials registered? An analysis of prospective versus retrospective registration of clinical trials published in the BioMed Central series, UKStephanie Harriman, Jigisha PatelPT.37 Maximizing welfare while promoting innovation in drug developmentFarida LadaOther posters that will be displayed but not presented orally:PT.38 Geoethics and the debate on research integrity in geosciencesGiuseppe Di Capua, Silvia PeppoloniPT.39 Introducing the Professionalism and Integrity in Research Program James M. DuBois, John Chibnall, Jillon Van der WallPT.40 Validation of the professional decision-making in research measureJames M. DuBois, John Chibnall, Jillon Van der Wall, Raymond TaitPT.41 General guidelines for research ethicsJacob HolenPT. 42 A national forum for research ethicsAdele Flakke Johannessen, Torunn EllefsenPT.43 Evaluation of integrity in coursework: an approach from the perspective of the higher education professorClaudia Rech, Adriana Sousa, Maria Betânia de Freitas MarquesPT.44 Principles of geoethics and research integrity applied to the European Multidisciplinary Seafloor and Water Column Observatory, a large-scale European environmental research infrastructureSilvia Peppoloni, Giuseppe Di Capua, Laura BeranzoliF1 Focus track on improving research systems: the role of fundersPaulo S.L. Beirão, Susan ZimmermanF2 Focus track on improving research systems: the role of countriesSabine Kleinert, Ana MarusicF3 Focus track on improving research systems: the role of institutionsMelissa S. Anderson, Lex Bouter. (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)

This article is based on the findings of a study that elicited the views of terminally ill patients ( n = 15), their carers ( n = 10) and bereaved carers ( n = 19) on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some (...) of its positive and negative aspects. Of concern was the reported lack of sensitivity to the role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field. (shrink)

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

Background: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised. Objective: This study aimed to explore nurses’ experiences of compassion when caring for palliative patients in home nursing care. Design and (...) participants: A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway. Ethical considerations: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data. Findings: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient’s plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes. Discussion: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content. Conclusion: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient – and a nurse perspective. (shrink)

Health care in France falls almost exclusively under theresponsibility of the Social Security department, which coversalmost all the expenditures related to health care,whether hospitalization or medication is concerned.For severe diseases or surgery the coverage is likelyto reach as much as 100%. The medical expendituresfor several severe diseases, such as cancer, myocardialinfarction, or neurodegenerative diseases are 100% coveredfor a period of time as long as three months. For some procedures, full coverage may be achieved by usinga subscription to private (...) health care insurance.Access to cover by the state has recently been openedto anyone living in France, after passage of a special law. There is still a lack of intensive care and hospice beds, given the rapidly increasing number of elderly who cannot be maintainedat home. There is a tendency to reduce the number ofbeds in private and public hospitals due to thegreat number of such institutions and the generalconcern that a low volume of procedures, associatedwith inexperienced health care professionals, is likelyto increase morbidity and mortality as well as publichealth care expenditure. Patients are still free tochoose doctors and hospitals (whether privateor public), provided that beds are available and thatspecific procedures can be carried out in thevicinity. So far no waiting list is needed, exceptfor specific procedures performed by a few specialists of high repute. Health care expenses are increasingcontinuously, which results in a very expensive systemin France. (shrink)

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

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)

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)

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.

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

Empathy is an important way for doctors to demonstrate their understanding of patients’ subjective experiences. This research considers the role of empathy in 37 doctor–patient palliative or end-of-life care consultations recorded in a hospice. Specifically, it focuses on four contexts in which there is a disparity between patients’ displayed experience of their illness and the doctor’s biomedical, expertise-driven perspective on their illness. These include cases in which the patient is sceptical of the medical perspective, cases in which (...) the patient’s expectations exceed what can realistically be provided and cases in which patients have an overly pessimistic view of their condition. The analysis shows how doctors can use empathic statements to display that they are attentive to the patient’s subjective experience even when the task at hand is, ostensibly, an expertise-driven, biomedical one. It thus demonstrates that empathy is of importance throughout palliative care consultations, even in those phases which might seem biomedical or task-driven. (shrink)

Today, the earth is an interconnected globe humming with electronic transmissions-a chattering planet nestled in the provident silence of space. The ethical question is whether this is contributing to authentic human development and helping individuals and peoples to be true to their transcendent destiny. The new media are powerful tools for education, cultural enrichment, commercial activity, political participation, intercultural dialogue and understanding. They also can serve the cause of religion. Yet the new information technology needs to be informed and guided (...) by solidarity in the service of the common good bridging the digital divide within and among nations. The value-laden message of Western secular culture to people and traditional societies in many cases ill-prepared to evaluate it leads to widespread crisis, for example, in regard to marriage and family life. This technology can be a means for solving human problems, promoting the integral development of persons, creating a world governed by justice, peace, and love. It also can help men and women in their age-old search for self-understanding. Like today's world itself, the world of media, including the Internet, has been brought by Christ, inchoately yet truly, within the boundaries of the kingdom of God and placed in service to the word of salvation. (shrink)

BackgroundMeasuring the outcomes of palliative care plays an important role to improve the quality, efficiency, and availability of these services in patients with cancer. Using valid, reliable, and culturally appropriate tools has a considerable role to measure these outcomes. This study aimed to assess the psychometric properties of the translated version of the Palliative care Outcome Scale.MethodsThis methodological study was conducted in two outpatient clinics related to Shohada Tajrish and Baqiyatallah hospitals in Tehran in 2019–2020. (...) The translation was done using the Forward-Backward approach after gaining permission from the developer. Face validity was tested with 10 patients with cancer through cognitive interviewing, as well as content validity with four experts. Construct validity was performed by exploratory factor analysis and confirmation. To assess the reliability, internal consistency was assessed by using Cronbach's alpha coefficient, and relative stability was assessed using the interclass correlation coefficient. Furthermore, interpretability and ceiling and floor effects were assessed.ResultsA total of 353 patients with cancer under palliative care were included in the study. Then, three psychological, physical, and social factors with a cumulative variance of 54.34% were extracted in exploratory factor analysis. Confirmatory factor analysis showed that the model has a good fit of information. Cronbach's alpha coefficient for scale was 0.719. Furthermore, the ICC was 0.812. The scale was interpretable, and ceiling and floor effects were 0%.ConclusionPersian version of the POS was evaluated as a valid and reliable tool. Therefore, it can be used by the clinician to monitor the consequences of palliative care in Iranian cancer patients. (shrink)

Human connection is universally important, particularly in the context of serious illness and at the end of life. The presence of close family and friends has many benefits when death is close. Hospital visitation restrictions during the Coronavirus pandemic therefore warrant careful consideration to ensure equity, proportionality, and the minimization of harm. The Australian and New Zealand Society for Palliative Medicine COVID-19 Special Interest Group utilized the relevant ethical and public health principles, together with the existing disease outbreak literature (...) and evolving COVID-19 knowledge, to generate a practical framework of visiting restrictions for inpatients receiving palliative and end-of-life care. Expert advice from an Infectious Diseases physician ensured relevance to community transmission dynamics. Three graded levels of visitor restrictions for inpatient settings are proposed, defining an appropriate level of minimum access. These depend upon the level of community transmission of COVID-19, the demand on health services, the potential COVID-19 status of the patient and visitors, and the imminence of the patient’s death. This framework represents a cohesive, considered, proportionate, and ethically robust approach to improve equity and consistency for inpatients receiving palliative care during the COVID-19 pandemic and may serve as a template for future disease outbreaks. (shrink)

Multiprofessional teams have become in recent years one of the distinguishing features of services, where professionals with different competences work together. The core of our interest is addressed to the équipe of a palliative care ward; in particular, to that series of working activities that consists of communicative acts, as équipe meetings, for instance. Our research focuses on the analysis of the process by which the development of knowledge in multiprofessional practice is built to establish more information (...) on recurrent patterns in the interaction and connect them to the specific context that these are shaped by. In this sense we will underline how components of knowing are shared among team members in constructing medical prognosis and we will analyse the connection among language processes, cognitive activities and social structures. More specifically, we will study the role of language and the context in the definition of linguistic acts in cognitive activities and in hierarchies involved in decision-making processes by exploring and pointing out how it is organised and structured. In particular through the study of talk-in-interaction where interchange of information is realised, we will emphasise how, in the multiprofessional équipe meeting, the realisation of practices and the knowledge useful to collaborative management of ward working life are established. To reach this aim, we adopted an ethnographic approach connected to the analysis of the situated interaction. (shrink)

Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, (...) fraught with healthcare providers’ biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers’ biases and disparities that exist within pediatric palliative care. (shrink)

Stakeholder consultation is part of the democratic process, embraces respect for persons, and is necessary for upholding the principle of justice. People are more likely to uphold standards they have participated in setting, so stakeholder consultation encourages adherence to societal and institutional standards as these evolve. Stakeholder consultation is also responsive to the call to “resocialize” ethics by contextualizing dilemmas and involving the destitute in choices about their healthcare. In resource-poor settings, such consultation promotes local “ownership” of, and leadership within, (...) development programs, which enhances effectiveness and sustainability. Stakeholder consultation is, therefore, a form of capacity building. To succeed, it must be responsive to regional, national, and individual constraints, including socioeconomic, cultural, and political ones. Several such constraints impact on the demand for, and availability of, palliative healthcare in the Caribbean. (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 ArgumentPatients suffering from advanced, incurable cancer often receive from their doctors proposals to enroll in a clinical trial of an experimental therapy. Experimental therapies are increasingly perceived not as a highly problematic approach but as a near-standard way to deal with incurable cancer. There are, however, important differences in the diffusion of these therapies in Western countries. The large diffusion of experimental therapies for malignant disease in the United States contrasts with the much more restricted diffusion of these therapies (...) in the United Kingdom. The difference between the two reflects differences in the organization of health care in these countries and distinct patterns of the professionalization of medical oncology in America and in Britain. The high density and great autonomy of medical oncologists in the United States encourages there the diffusion of experimental therapies (regarded by some as expensive and inefficient); the lower density of these specialists in the United Kingdom and their task as consultants and not primary caregivers, favors the choice of more conservative (for some, too conservative) treatments. Theoretically, the decision as to whether patients suffering from advanced, incurable cancer will be steered toward an experimental therapy or toward palliative care depends on the values and beliefs of these patients and their physicians. In practice, however, such choice does not depend exclusively on the individual' cultural background and ethical values, but is also strongly affected by the — culturally conditioned — Professional and institutional structure of medicine. (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)

In this paper it is argued that courts must, where appropriate, take into account the fact that National Health Service hospitals are under‐funded when they determine the standard of care owed by such hospitals and their professional staff to patients. Although this suggestion is inconsistent with the traditional view of the courts, its adoption would bring negligence cases into harmony with judicial review decisions. It would also cohere with a new understanding of accident causation within complex organisations, which (...) suggests that many of the injuries suffered by patients in under‐funded hospitals are the result of systemic failures that cannot necessarily be attributed to those who are the last actors in the causal chain leading to damage. (shrink)

Background: Hospices are based on a holistic approach which places the physical, psychological, social and spiritual welfare of their patients at the forefront of their work. Furthermore, they draw up their own mission statements which they are at pains to follow and seek to conduct their work in accordance with codes of ethics and standards of care. Research question and design: Our study researched what form the processes and degrees of latitude in decision-making take in practice when questions of (...) an ethical and ethically relevant nature arise. We used a qualitative approach. Data collection and evaluation was based on the methods of grounded theory. Ethical considerations: The study was reported to the relevant Ethics Commission who had raised no objections following the submission of the study protocol. The study at the hospices was approved by the directors of the hospices and the nursing teams. The rights of the participants were protected by obtaining informed consent. Results: Medication in the prefinal phase and questions affecting the provision of solids and liquids in the end-of-life phase have an ethical dimension. In the context of these two fields, decisions are taken collectively. A nurse’s individual (and ethically relevant) leeway in decision-making processes is restricted to the nurse’s own style of administering care. The nurse’s decision-making often depends to a far greater degree on her ability to adapt her concept of ideal care to fit the practical realities of her work than to any conceptual framework. Discussion: An adaptive process is necessary for the nurse because she is required to incorporate the four pillars of hospice care – namely, physical, psychological, social and spiritual care – into the practice of her daily work. Conclusion: Ethically relevant decisions are often characterised by nurses adjusting their aspiration levels to the practical conditions with which they are confronted. (shrink)

Medicine is unique among professions and trades, offering a 'product' which is unlike any other. The consequences for patients of being attracted by misleading information to an inappropriate doctor or service are such as to demand special restrictions on the advertising of doctors' services. Furthermore, health care in the UK is organised around the 'referral system', whereby general practitioners refer patients to specialists when necessary rather than have specialists accept patients on self-referral. But this need not inhibit the (...) provision of helpful factual information to those who need it. Recent policy changes by the General Medical Council considerably broaden the scope for general practitioners to make factual information of their services available to local people, while safeguarding the public against promotional activities which are designed to increase demand for certain kinds of specialist service by playing upon individuals' fears and lack of medical knowledge. (shrink)

This article aims at summing up the reflections of a small group of psychologists who work in the domain of palliative treatment. The theory and methodology supporting it are borrowed by a group analysis approach; the group's purpose is a research based on the workers' experience elaboration, which aims at finding out both the specificities of the work apparatus with the people accompanied to the conclusion of their lives, and the main thematic areas of the relationship between healthcare team, (...) patients, and families. The work we present aims at introducing the most meaningful themes that emerged during group meetings: first of all, some service criticalities examined in the area of terminal healthcare and the workers' possible saturation and psycho-social discomfort quotas, generating in some cases a common sense of professional precariousness. (shrink)

It is an article of almost religious faith in the United Kingdom that the National Health Service is far superior to a competitive market in health care services. In this brief and informal paper I show that the opposite is true. In contrast to market provision, the existence of the National Health Service entails the following. First, consumer sovereignty is virtually destroyed, since what services the consumer receives and how much he pays (through taxation) are (...) determined by the government of the day in consultation with vested and ideological interests. Second, a person may be denied a life-saving service despite having contributed more than his fair share to National Health Service over the course of his working life. Third, people often spend less on health care than they would like to spend, because any additional contributions (via increased taxes) are not linked to any benefit specifically for the person who makes them. Fourth, provision of services free at the point of need which is not linked to what a person pays encourages a wasteful misuse of resources. Fifth, absence of competition between health care providers leads to high cost and poor quality of service and a tendency to produce a standardised service rather than a tailored one; and government attempts to address this problem usually make it worse. Sixth, people’s freedom to engage in particular activities or lifestyles is likely to be curtailed because the costs of those activities are artificially socialised. I also point out that issues of inequality or poverty are much better addressed by means other than a nationalised health service. (shrink)