Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

Regulation and clinical practices regarding end of human life care differ among the nations and countries. These differences reflect the history of the development of state health systems, different societal values, and different understandings of dignity and what it means to protect or respect dignity. The result is variation in the ethical, legal, and practical approaches to end-of-life issues. The article analyzes the diversity of strategies to strengthen dignity at the end of life of terminally ill patients (...) and to highlight the legal preconditions and limitations for implementing these strategies in independent Lithuania, as a former state of the Soviet Union. It is based on the critical analysis of philosophical literature, legal national and international documents and scientific evidence related to the issue. The author argues that the legal system in Lithuania is not sufficient to ensure the patient’s dignity at the end of life and remains far behind other Western European countries. Legal regulations in Lithuania do not guarantee the right of the patient to express his or her will regarding the future treatment, including the refusal of resuscitation, do not regulate the termination of burdensome, non-viable and meaningless treatment that is undesired by the patient, and limit the accessibility of palliative care with its necessary quality and comfort. (shrink)

BackgroundEnd-of-life decisions remain a hotly debated issue in many European countries and the acceptance in the general population can act as an important anchor point in these discussions. Previous studies on determinants of the acceptance of end-of-life interventions in the general population have not systematically assessed whether determinants differ between withdrawal of life-prolonging treatment and euthanasia.MethodsA large, representative survey of the Austrian adult population conducted in 2014 included items on WLPT and EUT. We constructed the following (...) categorical outcome: rejection of both WLPT and EUT, approval of WLPT but rejection of EUT, and approval of both WLPT and EUT. The influence of socio-demographics, personal experiences, and religious and socio-cultural orientations on the three levels of approval were assessed via multinomial logistic regression analysis.ResultsHigher education and stronger socio-cultural liberal orientations increased the likelihood of approving both WLPT and EUT; personal experience with end-of-life care increased only the likelihood of approval of WLPT; and religiosity decreased approval of EUT only.ConclusionThis study found evidence for both shared and different determinants for the acceptance of WLPT and EUT. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the (...) person under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (shrink)

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

The German end-of-life vehicle take-back system is described and analyzed in terms of its impact on the environment and the car companies involved. It is concluded that although this system is often cited as an example of a successful take-back scheme, it is not one that maximizes the value recovered from end-of-life vehicles. As a result, corporations do not achieve the potential benefits that can be realized from an alternate value chain based on recovering value from end-of-life (...) products. Neither is society benefiting from the potential reduction in pollution and from making its way of life more sustainable. Without bringing these potential benefits to all stakeholders, the system is not likely to have a future. (shrink)

Huang and colleagues provide some intriguing insights into the attitudes about end of life care of practising Taiwanese neonatal doctors and nurses.1 There are some similarities with surveys from other parts of the world. Most Taiwanese neonatologists and nurses agreed that it was potentially appropriate to withhold or limit treatment for infants who were dying. A very high proportion was opposed to active euthanasia of such infants. But there were also some striking differences. Only 21% of Taiwanese doctors ‘agreed’ (...) with withdrawal of mechanical ventilation for dying newborn infants. This proportion is lower than reported in any European country.2 More than 90% of neonatologists surveyed in the UK, the USA, The Netherlands and Sweden found withdrawal of mechanical ventilation acceptable.2 ,3 Taiwanese doctors also seemed reluctant to give analgesia or sedatives to such infants, with almost 60% disagreeing with their use in dying infants where there was a risk of hastening death.1 In contrast, two-thirds or more of European neonatologists thought this was acceptable .2The results of the survey of Huang et al highlight three beliefs about end-of-life care that are widespread, but all of which are seriously mistaken1. None are new, but …. (shrink)

This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, a study was designed to examine (...) health professionals’ understanding and preferences related to advance directives. In addition, the study sought to explore the views of health care professionals of the application of Advance Directives in clinical practice in Lithuania. A cross-sectional survey was conducted by interviewing 478 health professionals based at major health care centers in Kaunas district, Lithuania. The design of the study included the use of a questionnaire developed for this study and validated by a pilot study. The collected data were analyzed using standard descriptive statistical methods. The analysis of knowledge about AD revealed some statistically significant differences when comparing the respondents’ profession and gender. The analysis also indicated key emerging themes among respondents including tranquility of mind, the longest possible life expectancy and freedom of choice. Further, the study findings revealed that more than half of the study participants preferred to express their will while alive by using advance directives. The study findings revealed a low level of knowledge on advance directives among health professionals. Most health professionals agreed that AD’s improved end-of-life decision making while the majority of physicians appreciated AD as the best tool for sharing responsibilities in clinical practice in Lithuania. More physicians than nurses preferred the presence of advance directives to support their decision making in end-of-life situations. (shrink)

Regulatory approach to the right to abortion in Europe is diverse and basically related to the issue of when the right to life begins and how this question is reflected in national legislation. Such an approach and diversity is tolerated by the European Court of Human Rights, but only if some specific standards and criteria formulated in the jurisprudence of the European Court of Human Rights are reflected in national legislation. Research of the Lithuanian legal acts conducted (...) in the light of the jurisprudence of the Court shows that they are not in accordance with the jurisprudence of the European Court of Human Rights and the solutions are therefore suggested. The aim of the article is to systematically analyse the Lithuanian legal acts regulating issues of abortion and to identify the existing problems and provide suggestions as to how to solve those problems with the help of the jurisprudence of the European Court of Human Rights in abortion cases. Analysis of the Lithuanian legal acts reveals that the existing legal regulation and practice is confusing and ambiguous. Abortion questions are regulated in Lithuania by means of secondary legislation, namely by order of the Health Minister which is more than 15 years old, and the classification of diseases dangerous to woman’s health and life is based on international classification that is invalid. The order is not in reconciled with the Lithuanian criminal law. Some other ambiguities and problems are identified in the article. Abortion on a woman’s request in Lithuania is possible by the end of the 12 week of pregnancy and during the entire pregnancy, if it causes danger to woman’s health and life. The Lithuanian legislator requires that both conditions – danger to woman’s health and life – are met in order to terminate pregnancy what is unnecessary and sometimes even confusing. The author suggests providing two separate bases for abortion – danger to woman’s life or health. Foetus problems – if a foetus is irreversibly damaged or suffering from an incurable life-threatening disease, it is not a separate basis for abortion in Lithuania, however those abnormalities of the foetus are related to the health and life of a pregnant woman. In the opinion of the author, looking into the practice of the other EU countries, it is better to provide a separate ground for abortion because of abnormalities of the foetus. The basic problem in Lithuania that is similar in Poland and in Ireland is that there is no clear procedure in case a pregnant woman is not satisfied with the decision of the medical commission regarding the question of her abortion or if the opinion of members of the commission is diverse – no time guidance or appeal institution is provided. (shrink)

Background: Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units , including those in Israel. Several results of the Israeli subsample were different to those of the overall sample.Objective: The objective of this article was to explore these differences and provide (...) a possible explanation based on the impact of culture on end of life decision making.Method: All adult patients admitted consecutively to three Israeli ICUs who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively . These patients were compared with a similar sample taken from the larger study carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation , brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process . The data also included patient characteristics , specific therapies limited, and the method of SDP.Results: The majority of patients had treatment withheld, none underwent SDP, 62 received CPR , 31 had brain death , and 18 underwent withdrawal of treatment . The primary reason given for limiting treatment was that the patient was unresponsive to therapy . End of life discussions were held with 132 families , the vast majority of which revolved around withholding treatment and the remainder concerned withdrawing treatment .There was a statistically significant association between the type of end of life decision and region—that is, the northern region of Europe, the central region, the southern region, and Israel.Conclusions: Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions. (shrink)

Those involved in end-of-life decision making must take into account both legal and ethical issues. This book starts with a critical reflection of ethical principles including ideas such as moral status, the value of life, acts and omissions, harm, autonomy, dignity and paternalism. It then explores the practical difficulties of regulating end-of-life decisions, focusing on patients, healthcare professionals, the wider community and issues surrounding 'slippery slope' arguments. By evaluating the available empirical evidence, the author identifies preferred ways (...) to regulate decisions and minimise abuses at the end of life, and outlines an ethical theory which can provide practical guidance for those engaged in end-of-life decisions"--Provided by publisher. (shrink)

Immediately following the approval of the Belgian law on euthanasia, Caritas Catholica Vlaanderen sent a position paper to all affiliated institutions in which its standpoint regarding care for a dignified end of life is clarified. We would like to sketch very briefly the context in which this position paper should be placed, before reproducing the complete text of the recommendation.Caritas Catholica Vlaanderen is an umbrella organization for cooperation and consultation between the Verbond der Verzorgingsinstellingen [Association of Care Institutions], grouping (...) health-care institutions and services, and the Vlaams Welzijnsverbond [Flemish Association for Public Welfare], grouping welfare institutions and services. The Verbond der Verzorgingsinstellingen is responsible for 52 general hospitals, 94 mental-health institutions and 326 geriatric-care institutions. The Vlaams Welzijnsverbond groups 397 facilities for handicapped persons and 344 facilities for public welfare. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:ECHIC—The European Consortium for Humanities Institutes and Centres 2023 Annual ConferenceIlenia Vittoria CasmiriEcological Mindedness and Sustainable Wellbeing, ECHIC—The European Consortium for Humanities Institutes and Centres 2023 Annual Conference, May 25–27, 2023, University of Ferrara, ItalyThis year’s annual conference of the European Consortium for Humanities Institutes and Centres (ECHIC) invited international scholars with diverse backgrounds to explore visions of a desirable future world that is both environmentally (...) sustainable and socially just. In stressing the social and political relevance of the humanities in Europe today, the main goal of the Consortium, as it is articulated on the conference website, is the pursuit of the highest international standards of excellence with a spirit of innovation and exploration of new research areas:Since the World Commission on Environment and Development published Our Common Future (1987) [commonly known as the Brundtland Report], the notion of... sustainability has been expanded to incorporate environmental, cultural, legal, and economic features of a low-carbon future and to encompass the wellbeing of all living species, which involves material aspects such as the social acceptance of resource-efficient transitions and immaterial ones such as flourishing human capabilities. [End Page 625]The participants of the 2023 ECHIC conference on Ecological Mindedness and Sustainable Wellbeing presented original, multidisciplinary perspectives, and offered valuable opportunities to develop holistic approaches to the prismatic issue of environmental sustainability. Bringing together cultural diversity as well as local and global perspectives, keynoters and panelists addressed the vast array of challenges imposed by the perpetuation of anthropocentric worldviews. Their challenge to traditional demarcations between the humanities, the social sciences, economy, law, architecture, engineering, and the life and medical sciences, generated synergies for exploring interconnections between life forms, resources, and heritage. While the theoretical frameworks varied considerably, they all advocated for the need to overcome ideological, cultural, and spatial barriers in favor of broader, more inclusive approaches to other disciplines, other cultures, other humans, other species. Overall, the conference not only exposed the cultural and economic roots of social inequality and of uneven distribution of resources, thanks to unsustainable modes of capitalist production and consumption, but also highlighted the media’s positive effect in eliciting pro-environmental behaviors.Toward More Sustainable FuturesThe prismatic nature of the concept of sustainability inspired keynote speakers Alexa Weik von Mossner (University of Klagenfurt), Adrian Ivakhiv (University of Vermont), Tim Waterman (University College London), and Antonio López (John Cabot University) to address climate apocalypse impacts on the human physical and psychological well-being from diverse personal and academic backgrounds.In the opening keynote lecture, “Growing Hope: Narratives of Food Justice and Sustainability,” Weik von Mossner explores the psychological implications of affect and emotion in the communication of environmental issues. Her diachronic account illustrates the rise and fall of the South Central Farm in Los Angeles, a sanctuary for locals by providing fresh produce, stimulating a sense of community, and representing a symbol of resilience against systemic inequalities. Weik Von Mossner elucidates the psychological benefits accruing from exposure to such a sustainably inhabited space. Her analysis of Scott Hamilton Kennedy’s documentary, The Garden (2008), affirms that climate change narratives across media may prompt food justice activism (Retzinger 2011, 337) by eliciting the emotional engagement of its audience. [End Page 626]However, observes von Mossner, the greater the popularity of the Farm, the greater the threat posed to its existence. Through documentaries, news articles, and online campaigns, the South Central Farm has received national and international attention. At the same time, media have shed light on the struggles faced by marginalized communities and provided a solid basis for discussions on social justice, environmental activism, and the value of communal spaces. She explains that activists used social media to voice their concerns about the potential eviction and the loss of a vital resource for the local community, leading to an outpouring of support from environmentalists and celebrities who had realized to what extent the predominantly low-income, minority community was affected by limited access to fresh food and green spaces.Adrian Ivakhiv, delivering his keynote “How to Face the Angel of History: A Call to Anthropocenic Conscience” the following day, suggests that a pervasive lack of an emotional... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 22 (2002) 195-197 [Access article in PDF] Fourth Conference of the European Network of Buddhist-Christian Studies John D'Arcy May Irish School of Ecumenics, Trinity College Dublin Hosted by the Department of Theology at the University of Lund, May 4-7, 2001, this conference reversed the perspective of the previous one, which studied Buddhist perceptions of Jesus. In the event, a strong Buddhist presence from Europe, Thailand, and (...) Japan ensured that distinctive, even conflicting Buddhist views of Christianity were represented at the Lund conference. But there were also some impressive attempts by Christians to come to terms with the history of the relationship and its implications for theology.A feature of the conference was personal testimonies to lives transformed by awareness of other traditions. Eshin Nishimura described his "Zen way—with Christians," starting with his contacts with Quakers in postwar Japan and America. In an extremely interesting and controversial session, Sulak Sivaraksa of Thailand and Reimyo Tierelinckx, a Belgian living the life of a Zen nun in Dortmund, Germany, disagreed about those aspects of Christianity that are actually relevant to Buddhism: social action or contemplation? In his Christian response, Jacques Scheuer emphasized the "always already, always now" character of grace and the eschatological perspective of "Christ ahead of us" as a fundamental contrast, while Asa Egner pointed out the difference between salvation without self-interest and the "god" of capitalism.There were also examples of how Buddhism is understood by Christians in specific contexts. Sulak Sivaraksa recalled the intolerance of the missionaries in Thailand, who assumed they had a monopoly on truth and morality and were "not comfortable with differences." On the other hand, they stimulated renewal in the Theravada sangha and forced Buddhists to confront structural violence. Kosuke Koyama, who was one of those missionaries, said he became more relaxed about living in space-time as the coordinates of divine-human encounter, but questioned whether dependent coorigination and the Buddhist emphasis on psychology leave enough room for a sense of history. Yet Buddhism too requires that we make an effort to "put out the fire," which in today's context should lead to a hermeneutic of ethical action. Eshin Nishimura told how Buddhism, even before it reached Japan, had begun to conceive of the Buddha as an absolute being transcending time and space who was to be worshipped as a savior. He startled participants by speaking of "the secret reason why [End Page 195] Japanese Buddhism is so degenerate," which he later clarified to some extent by illustrating how practice can have priority over charity.Though there was plenty of opportunity to practice at the conference, the personal side was complemented by a number of first-rate scholarly studies of both history and theology/buddhology. Elizabeth Harris drew on her firsthand knowledge of Sri Lanka to analyze the different phases the Christian understanding of Buddhism passed through there. In the period 1800-1830 there was puzzlement among the British as to whether the Buddha was a god or a man who proposed a "system of undisguised atheism." Between 1830 and 1870, though the realization was dawning that Buddhism represented a high degree of ethics and even holiness, the missionaries did everything in their power to undermine it and demonstrate its inferiority and inauthenticity. From 1870 to 1900 this trend continued, despite a growing sympathy for the Buddha and Buddhism on the part of humanists and scholars. The outcome was a "demythologizing" of the Buddha to a status below that of Jesus as the prelude to the growth of conservative evangelical Christianity in Sri Lanka.Hakan Eilert gave a reassessment of Karl Reichelt, the Norwegian Lutheran missionary to China, where he arrived in 1893 after having a healing experience of nature mysticism. This made him more open to Daoism, Confucianism, and Buddhism than might have been expected of a Lutheran from such a conservative background. Though his motto was "the light of the Buddha shines everywhere," in fact he seems to have read Christian ideas into Buddhism. Constrained by incipient Barthianism and a watchful home church, Reichelt... (shrink)

In response to a global population with increasingly complex issues at the end of life, a movement in the U.S. has emerged incorporating doulas into end-of-life care. These end-of-life (EOL) doulas are not just focused on the quality of life, but also the quality of death. Like birth doulas, who provide support for pregnant patients and their families, EOL doulas help alleviate physical and mental discomfort in those who are dying. In this paper, we explore the (...) role of EOL doulas in improving the care of unrepresented patients, who lack decision-making capacity and have no surrogates or documents to guide their healthcare decisions. We argue that EOL doulas may help this traditionally underserved population experience a “good death” by answering several ethical and procedural challenges. As quasi-independent, non-medical members of the healthcare team, they provide a balancing, advocating voice on behalf of the patient, and may also help reduce inappropriate treatment, delays in care, and the overburdening of the public guardianship system. As such, attention should be given to formally defining their place within the healthcare infrastructure. Ultimately, we contend that EOL doulas are key to ensuring optimal, ethical care for unrepresented patient populations. (shrink)

Background: The demand for autonomy in medical decision making is increasing among Korean people, but it is not well known why some people prefer autonomy in decision making but others do not. Research objectives: The aim of this study was to determine the extent to which Korean adults wished to exercise autonomy in the process of decision making regarding end-of-life treatment and to determine whether economic issues and family functioning, in particular, were associated with preferences for participation in decision (...) making in Korean people. Research design: This study was a cross-sectional correlational study using a survey. Participants and research context: Data were collected using structured questionnaires from 354 patients or their families who visited ambulatory departments at two general hospitals in South Korea, recruited by the proportionate quota sampling method. Data analysis was performed using multinomial logistic regression analyses. Ethical considerations: The study was approved by the hospitals’ directors and the ethics committee of Kyungpook National University Hospital. Written informed consent was given by all participants. Findings: A majority of Korean people wanted to make autonomous decisions regarding treatment at the end of life. Preferences for autonomous decision making regarding end-of-life treatment, rather than relying on family, showed a significant increase in association with poor family functioning and low income. Discussion: Results of this study suggested the necessity for development of alternatives to a dominant traditional “family-centered” approach in Korean people, in order to enhance end-of-life decision making for people who wish to take an active role in the decision-making process. Conclusion: Healthcare providers need to examine not only patients’ preferred decision-making style but also any reasons for their choice, in particular, family conflict and financial burden. (shrink)

With a focus on end-of-life discussion in aging and chronically ill populations, this book offers insight into the skill of communicating in complex and emotionally charged discussions. This text is written for all clinicians and professionals in the fields of healthcare and public health who are faced with questions of ethical deliberation when a patient's illness turns from chronic to terminal. This skill is required to manage care well in an age of advanced technology, and numerous autonomous choices. With (...) a palliative care and ethics focus, the manuscript provides case studies illustrating issues which occur in the acuity and chronicity of end of life. Clear tools for clinicians, such as scripting and "the advance care planning video library" are included. The book focuses on the unique concept of outpatient ethics, including readmission prevention and shortened length of stay through good communication for clinicians who will be required to conduct this discussion with patients. The ethical undertone in this text provides a perfect opening for application in healthcare ethics classes, both in fields of public health and healthcare. Medical scholars and physicians, nurse practitioners and physician's assistants, as well as social workers, both in practice and training, will benefit from this text. (shrink)

End-of-life care is the only major reference to systematically explore the unique medical, social, legal, political, and ethical issues to consider while providing care to adults and children with intellectual and developmental disabilities who are facing terminal illness or life-limiting conditions.

Well prior to the invention of the term ‘biology’ in the early 1800s by Lamarck and Treviranus (and lesser-known figures in the decades prior), and also prior to the appearance of terms such as ‘organism’ under the pen of Leibniz and Stahl in the early 1700s, the question of ‘Life’, that is, the status of living organisms within the broader physico-mechanical universe, agitated different corners of the European intellectual scene. From modern Epicureanism to medical Newtonianism, from Stahlian animism (...) to the discourse on the ‘animal economy’ in vitalist medicine, models of living being were constructed in opposition to ‘merely anatomical’, structural, mechanical models. It is therefore striking that the classic narratives of the Scientific Revolution conspicuously avoid any consideration of what status to grant living beings in a newly physicalized universe (I discuss this in Wolfe 2011, 2019 chapt. 1). Neither Harvey, nor Boyle, nor Locke (to name some likely candidates, the latter having studied with Willis and collaborated with Sydenham) ever ask what makes organisms unique, or conversely, what does not. In this chapter I seek to establish how something we might call ‘the knowledge of Life’, to use an expression of Georges Canguilhem’s, emerged as part of early modernity without being part of the mainstream history of life science. This leads to the question, can one can correlate early modern “knowledge of life” with the emergence of a science called ‘biology’? (see Zammito 2018, Wolfe 2019, Bognon-Küss and Wolfe eds. 2019). It was once fashionable to speak of, e.g. ‘precursors of Darwin’, and then Canguilhem and Foucault famously did away with the category of precursor. But how then do we account for the phase that precedes the constitution of a science? With the case of biology, how do we account for the increasing fascination with the ontology of Life during the decades prior to the ‘naming of biology’, as McLaughlin has called it, at the end of the eighteenth century? This increased focus on Life and the ontology of Life sits awkwardly, both with mainstream narratives of the Scientific Revolution and of the history of biology. In seeking to address this increased focus (in which vitalism plays a role but was by no means the only conceptual actor: Wolfe 2020), I critically examine Foucault’s notorious claim (Foucault 1966) that there was no such thing as ‘Life’ in the eighteenth century and thus no such thing as biology. (shrink)

The welfare state has been said to be in crisis many times. Many have predicted the death of the patient, but without having made a proper diagnosis. Reasons for such crises, it has been argued, have been globalisation, change in demography, lack of legitimacy and lack of ability to.nance public sector activities. As the articles in this issue show, however, despite the many changes it seems that welfare states are alive and kicking. Changes, adaptation, recasting, recalibration and restructuring are some (...) of the words attached to the development of welfare states in Europe. It thus seems that despite a rhetoric of crisis and difficulty in the European welfare states what we instead are witnessing are, although profound, changes with a high level of respect for a continuation of the welfare states as developed over the last 100 years. One reason for this might be the electoral cost of retrenchment, but it could also be due to the fact that the historical reason for the development of the welfare state still exists. This can be witnessed in the need for intervention due to market-failure, the need to cover certain contingencies and a need to cover risks, for example, in relation to work accidents. The welfare states still have, on top of that, a role as redistributor between rich and poor, and between generations and over the life-cycle of the individual. Maurizio Ferrera in his article points to the fact that even though it looks like there is a trade off between efficiency and equality, this does not need to be the case. Further, he also notes that there is still room for manoeuvre for the national decision makers to find solutions despite pressure from outside. In his article he also points to a role for the European Union which by promoting ideas and analysis has put forward methods of change at the national level. Experiences with new forms and strategies in welfare state policy, and using learning effects thus seem to be a new avenue for development. (shrink)

The emergency department (ED) is a fast-paced, highly stressful environment where clinicians function with little or suboptimal information and where time is measured in minutes and hours. In addition, death and dying are phenomena that are often experienced in the ED. Current end-of-life care models, based on chronic illness trajectories, may be difficult to apply in the ED. A philosophical approach examining end-of-life care may help us understand how core medical and nursing values are embodied as care practices (...) and as ethical comportment. The integration of Aristotle's notions of phronesis and praxis with Merleau-Ponty's ontological notions of intentional arc and maximum grip in the context of the culture and practices of the ED offers a unique view of clinical and ethical practice at the end-of-life in the emergency setting. Caring for people at the end-of-life calls us to act virtuously based on previous experience, meanings and local practices. The maximum grip of the ultimate particulars of the situation combined with one's experiential and theoretical knowledge opens up situated possibilities for the expert clinician. (shrink)

Experience machines, popularized in print by Robert Nozick and on the screen by the Wachowskis’ film The Matrix, provide highly or perfectly realistic experiences that are more pleasant and less painful than those generated in real life.1 The recent surge in virtual reality and neuro-prosthetic technologies is making the creation of real-world experience machines seem inevitable and perhaps imminent.2 Given the likelihood of the near-future availability of such machines, it behooves ethicists to consider the moral status of their potential (...) uses. In this chapter, we investigate the use of experience machines in palliative and end-of-life care situations. We pair up various kinds of experience machines with patients in a range of conditions, to illuminate the moral problems and benefits of using experience machines in this way. We argue that the use of Nozickian experience machines to treat patients in most conditions would be morally problematic, most notably for the negative effects on patients’ characters and real-world relationships. Informed by this initial moral analysis, we describe an experience machine that is more closely related to a virtual reality game, and argue that it can avoid the moral problems encountered by Nozickian experience machines. In fact, we argue that this new kind of experience machine could improve some patients’ characters and relationships with real-world people. We conclude that some kinds of experience machines could benefit many patients, especially those in extreme pain and those not in the position to meaningfully interact with their loved ones in reality. We also note that certain kinds of experience machines could be useful for religious people, for whom the range of palliative and end-of-life care options is often thought to be relatively narrow. (shrink)

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

This article will focus on issues concerning the provision of artificial nutrition and hydration to patients who are extremely old, completely bedridden, and totally dependent on others. These patients have no advance directives, no malignancy, suffer from persistent but unstable disturbance of consciousness as well as severe cognitive impairment, and cannot eat sufficient amounts of food to maintain their lives. Should ANH be provided? Some would agree while others would maintain otherwise. The underlying values and normative theory behind each argument (...) are quite different. In this paper, I will present opinions, comments, and arguments concerning the provision of PANH to such patients and examine each using the Takahashi‘s three levels structure analysis. Utilitarianism is a fitting ethical theory for the third level in arguments against the provision of PANH to patients in question, and the non-religious sanctity of life doctrine covers the opposite position. (shrink)

Background Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. Aim This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. Research design and participants (...) This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer’s philosophical hermeneutics. Ethical considerations Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. Results The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. Conclusion and final considerations The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices. (shrink)

Objective To assess whether the frequency of end-of-life decisions for children under 1 year of age in the Netherlands has changed since ultrasound examination around 20 weeks of gestation became routine in 2007 and after a legal provision for deliberately ending the life of a newborn was set up that same year. Methodology This was a recurrent nationwide cross-sectional study in the Netherlands. In 2010, a sample of death certificates from children under 1 year of age was derived (...) from the central death registry. All 223 deaths that occurred in a 4-month study period were included. Physicians who had reported a non-sudden death (n=206) were sent a questionnaire on the end-of-life decisions made. 160 questionnaires were returned (response 78%). Findings In 2010, 63% of all deaths of children under 1 year of age were preceded by an end-of-life decision—a percentage comparable to other times when this study was conducted (1995, 2001, 2005). These end-of-life decisions were mainly decisions to withdraw or withhold potentially life-sustaining treatment. In 2010, the percentage of cases in which drugs were administered with the explicit intention to hasten death was 1%, while in 1995 and 2001, this was 9% and in 2005, this was 8%. Discussion and conclusion There has been a reduction of infant deaths that followed administration of drugs with the explicit intention to hasten death. One explanation for this reduction relates to the introduction of routine ultrasound examination around 20 weeks of gestation. In addition, the introduction of legal criteria and a review process for deliberately ending the life of a newborn may have left Dutch physicians with less room to hasten death. (shrink)

The article proposes to reconsider the late Heidegger’s examination of the concept of the world, as for Heidegger the eradication of all life on planet earth is not the most horrible thing that could happen. It is the impossibility of thinking the world that exposes us to something worse: the loss of our link with being. Following Heidegger, to think the world is not only necessary to prevent the extinction of life on earth, but, moreover, the loss of (...) thinking the world lies at the beginning of the crisis we are living through. (shrink)

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

There has been increasing awareness of the medical and moral challenges in the care of unrepresented patients: those who cannot make their own medical decisions, do not have any surrogate decision maker, and have not indicated their treatment preferences. Most discussions have focused on procedural questions such as who should make decisions for these patients. An issue that has not gotten enough attention is the ethical standard that should govern medical decision making. I explore the question of which ethical standard (...) provides better justification for end-of-life decisions for unrepresented patients. Two options are considered: the conventional and less demanding best interest standard, and the novel and more demanding medical futility standard. I explain the similarities and differences between these two standards, examine arguments for and against each one, and suggest that the medical futility standard is ethically superior and should replace the established best interest standard. (shrink)

In nearly all aspects of life, humans are crossing lines of no return. Modern science is leading us into vast uncharted territory—far beyond the invention of nuclear weapons or taking us to the moon.Today, in labs all over the world, scientists are performing experiments that threaten to fundamentally alter the practical character and ethical color of our everyday lives. In The End of Life as We Know It, bestselling author Michael Guillen takes a penetrating look at how the (...) scientific community is pushing the boundaries of morality, including: • Scientists who detached the head of a Russian man from his crippled, diseased body, and stitching it onto a healthy new donated body. • Fertility experiments aimed at allowing designer babies to be conceived with the DNA from three or more biological parents. • The unprecedented politicization of science – for example, in the global discussion about climate change that is pitting “deniers” against “alarmists” and inspiring Draconian legislation, censorship, and legal prosecutions. • The integration of Artificial Intelligence into communications and the economy. The End of Life as We Know It takes us into labratories and boardrooms where these troubling advances are taking place and asks the question no scientists seem to be asking: What does this mean for the future of humanity? (shrink)

International migration is an important issue for many high‐income countries and is accompanied by opportunities as well as challenges. South Asians are the largest minority ethnic group in the United Kingdom, and this diaspora is reflective of the growing diversity of British society. An empirical study was performed to ascertain the faith‐based values, beliefs, views and attitudes of participants in relation to their perception of issues pertaining to end‐of‐life care. Empirical observations from this study, as well as the extant (...) knowledge‐base from the literature, are used to support and contextualise our reflections against a socio‐legal backdrop. We argue for accommodation of faith‐based values of migrants at end‐of‐life within normative structures of receiving countries. We posit the ethically relevant principles of inclusiveness, integration and embedment, for an innovative bioethical framework as a vehicle for accommodating faith‐based values and needs of migrants at end‐of‐life. These tenets work conjunctively, as well as individually, in respect of individual care, enabling processes and procedures, and ultimately for formulating policy and strategy. (shrink)

With disagreement, doubts, or ambiguous grounds in end–of-life decisions, doctors are advised to involve a clinical ethics committee. However, little has been published on doctors’ experiences with discussing an end-of-life decision in a CEC. As part of the quality assurance of this work, we wanted to find out if clinicians have benefited from discussing end-of-life decisions in CECs and why. We will disseminate some Norwegian doctors’ experiences when discussing end-of-life decisions in CECs, based on semi-structured interviews (...) with fifteen Norwegian physicians who had brought an end-of-life decision case to a CEC. Almost half of the cases involved conflicts with the patients’ relatives. In a majority of the cases, there was uncertainty about what would be the ethically preferable solution. Reasons for referring the case to the CEC were to get broader illumination of the case, to get perspective from people outside the team, to get advice, or to get moral backing on a decision already made. A great majority of the clinicians reported an overall positive experience with the CECs’ discussions. In cases where there was conflict, the clinicians reported less satisfaction with the CECs’ discussions. The study shows that most doctors who have used a CEC in an end-of-life decision find it useful to have ethical and/or legal aspects illuminated, and to have the dilemma scrutinized from a new perspective. A systematic discussion seems to be significant to the clinicians. (shrink)

Voluntary active euthanasia and physician-assisted suicide remain technically illegal in the Netherlands, but the practices are openly tolerated provided that physicians adhere to carefully constructed guidelines. Harsh criticism of the Dutch practice by authors in the United States and Great Britain has made achieving a balanced understanding of its clinical, moral, and policy implications very difficult. Similar practice patterns probably exist in the United States, but they are conducted in secret because of a more uncertain legal and ethical climate. In (...) this manuscript, we plan to compare end-of-life care in the United States and the Netherlands with regard to underlying values, justifications, and practices. We will explore the risks and benefits of each system for a real patient who was faced with a common end-of-life clinical dilemma, and close with challenges for public policies in both countries. (shrink)

One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom‐focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about (...) the permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it. Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom‐based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call terminal anaesthesia in this paper). After examining the common arguments for the various types of symptom‐based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients. (shrink)

Existing regulation of end-of-life care is flawed. Problems include poorly-designed laws, policies, ethical codes, training, and funding programs, which often are neither effective nor helpful in guiding decision-making. This leads to adverse outcomes for patients, families, health professionals, and the health system as a whole. A key factor contributing to the harms of current regulation is a siloed approach to regulating end-of-life care. Existing approaches to regulation, and research into how that regulation could be improved, have tended to (...) focus on a single regulatory instrument (e.g., just law or just ethical codes). As a result, there has been a failure to capture holistically the various forces that guide end-of-life care. This article proposes a response to address this, identifying “regulatory space” theory as a candidate to provide the much-needed holistic insight into improving regulation of end-of-life care. The article concludes with practical implications of this approach for regulators and researchers. (shrink)

ABSTRACTThis report on end‐of‐life decision‐making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters.Chapter 1 reviews what is known about end‐of‐life care and opinions about assisted dying in Canada.Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death.Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order.Chapter 4 (...) reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form.Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. (shrink)

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded (...) as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context-specific and culture-specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end-of-life decision-making. (shrink)

In contemporary philosophical debates in the United States "redefining pragmatism" has become the conventional way to flag significant philosophical contests and to launch large conceptual and programmatic changes. This book analyzes the contributions of such developments in light of the classic formulations of Charles S. Peirce and John Dewey and the interaction between pragmatism and analytic philosophy. American pragmatism was revived quite unexpectedly in the 1970s by Richard Rorty's philosophical heterodoxy and his running dispute with Hilary Putnam, who, like Rorty, (...) is a professed Deweyan.Reinventing Pragmatism examines the force of the new pragmatisms, from the emergence of Rorty's and Putnam's basic disagreements of the 1970s until the turn of the century. Joseph Margolis considers the revival of a movement generally thought to have ended by the 1950s as both a surprise and a turn of great importance. The quarrel between Rorty and Putnam obliged American philosophers, and eventually Eurocentric philosophy as a whole, to reconsider the direction of American and European philosophy, for instance in terms of competing accounts of realism and naturalism. (shrink)

Since Oregon implemented its Death with Dignity Act, many additional states have followed suit demonstrating a growing understanding and acceptance of aid in dying processes. Traditionally, the patient has been the one to request and seek this option out. However, as Death with Dignity acts continue to expand, it will impact the role of physicians and bring up questions over whether physicians have the ethical obligation to facilitate a conversation about AID with patients during end of life discussions. Patients (...) have the right to make informed decisions about their health, which implies that physicians have an obligation to discuss with and inform patients of the options that will accomplish the patients’ goals of care. We will argue that physicians have an ethical obligation to inform certain patients about AID during end of life care discussions. We will also address what this obligation encompasses and explore guidelines of when and how these conversations should occur and proceed. Earlier guidelines, presented by various palliative care and ethics experts, for proceeding with such conversations have mostly agreed that the discussion of hospice and end of life care with patients should be initiated early and that the individual goals of a patient during the remaining duration of life should be thoroughly examined before discussion of appropriate options. In discussing AID, physicians should never recommend but inform patients about the basics so that they can make an informed decision. If patients express further interest in AID, the physician should open up the dialogue to address the reasoning behind this decision versus other possible treatments to ensure that patients clearly comprehend the process and implications of their decision. Ultimately, any end of life choice should be made by patients with the full capacity to express what they envision for the remaining duration of life and to comprehend the advantages and disadvantages of all the possible options. (shrink)

This article explores how the law of England and Wales1 has responded thus far to medical and clinical advances that have enabled patients with prolonged disorders of consciousness to survive. The authors argue that, although the courts have taken account of much of the science, they are now lagging behind, with the result that some patients are being denied their legal rights under the Mental Capacity Act 2005. The article further argues that English law does not comply with the United (...) Kingdom’s commitments under the United Nations Convention on the Rights of Persons with Disabilities. Stressing the need for the law to keep in step with advances in science, the article concludes with robust recommendations for improvements, based on the latest research in neuroscience, to the way in which life-sustaining treatment decisions are made. This would mean that the wishes of patients, including those with covert awareness, can be better reflected in best interests assessments. (shrink)

Background: Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. Objectives and Methods: This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate (...) decision-making research. Findings: Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves. Discussion: Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Conclusion: Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences. (shrink)

ABSTRACT This paper explores one of the most politically sensitive and intellectually neglected issues in bioethics – the interface between the history of contemporary end‐of‐life ethics and the economics of life and death. It suggests that contrary to general belief, economic impulses have increasingly become part of the conditions in which contemporary end‐of‐life ethics continues to evolve. Although this conclusion does not refute the philosophical justifications provided by the ethics for itself, it may cast new light upon (...) its social role. (shrink)

This article reviews the implications of the collapse of Communism in Europe for some themes in recent social theory. It was often assumed that 1989 was part of a global process of normalization and routinization of social life that had been left behind earlier utopian hopes. Nothing that utopia is open to various interpretations, including utopias of the everyday, this article suggests, first that there were utopian dimensions to 1989, and, second, that these hopes continue to influence contemporary social (...) and political developments. The continuing role of substantive utopian expectations is illustrated with reference to the politics of lustration in Poland and the rise of nationalist parties in Hungary. This analysis is placed in the context of the already apparent impact of the global economic crisis in post-communist countries. It concludes that the unevenness and diversity of the post-1989 world elude overly generalized attempts at theorization and demand more nuanced analyses. (shrink)

Medical assistance in dying was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians’ willingness to provide MAiD and patients’ legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of this (...) paper was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians. (shrink)

The swift advancement of intensive care medicine, coupled with technological possibilities, has prompted numerous ethical inquiries regarding decision-making processes concerning the withholding or withdrawal of treatment due to medical futility. This study seeks to delineate the decision-making approaches employed by intensive care physicians in Türkiye when faced with medical futility at the end of life, along with an ethical evaluation of these practices. Grounded theory, a qualitative analysis method was employed, conducting semi-structured, in-depth interviews with eleven intensive care physicians (...) in Türkiye. The subsequent text analysis was carried out using MAXQDA software. Participants assert that the decisions made by Turkish physicians determine whether treatment is futile, rely on medical consensus, and lack a standardized decision-making process. The decisions are influenced by legal and social pressures, resource constraints, and occasional conflicts of interest. The significance of professional hierarchy is notable, with limited consideration given to the opinions of nurses and other staff. The unstructured medical consensus processes are shaped by normative concepts such as benefit, age, justice, and conscience. Furthermore, it was observed that the conscientious opinions of physicians carry more weight than adherence to ethical principles and guidelines. To create optimal conditions for doctors to make ethically justifiable decisions, the dynamics within the treatment team should be improved, emphasizing the minimization of hierarchy, and ensuring the active participation of all team members in the decision-making process. Additionally, efforts should be directed toward narrowing the gap between the conscience of the individual doctor and established ethical principles. A potential solution lies in the nationwide implementation of clinical ethics committees and the establishing of clinical ethics guidelines, aiming to address, and overcome the identified challenges. (shrink)

Background Nurses providing care to patients with end-of-life or terminal illnesses often encounter ethically challenging situations leading to moral distress. However, existing quantitative studies have examined moral distress using instruments that address general clinical situations rather than those specific to end-of-life care. Furthermore, qualitative studies have often been limited to participants from a single unit or those experiencing moral distress-induced circumstances. A comprehensive and integrated understanding of the overarching process of moral distress is vital to discern the unique (...) circumstances surrounding end-of-life care and its consequential impacts. Research objectives To explore the moral distress experiences of nurses who are frequently involved in caring for patients with end-of-life or terminal illnesses and apply it to two existing theories: the model of moral distress and the ecological model. Research design A qualitative descriptive approach was employed. Participants and research context Seven focus group interviews involving 30 nurses were performed. The subsequent transcriptions underwent rigorous content analysis. Ethical considerations We obtained Institutional Review Board approval from a university. Focus group interviews were conducted with nurses who agreed to participate and signed the consent form. Findings The moral distress-inducing factors and nurses’ perceived impact of moral distress were identified and categorized based on moral distress theories and ecological models. A total of 15 categories and 30 subcategories across the following 4 domains were derived: (1) intrapersonal, (2) interpersonal, (3) organizational, and (4) structural factors. Conclusions End-of-life-specific circumstances induced moral distress among nurses, with both negative and positive impacts identified. Effective organizational and policy support is essential to manage conflicts, form a healthy organizational culture, provide training, and prevent unnecessary expenses due to the negative consequences of moral distress. (shrink)

In a recent article,1Riisfeldt attempts to show that the principle of double effect (PDE) is unsound as an ethical principle and problematic in its application to palliative opioid and sedative use in end-of-life care. Specifically, he claims that (1) routine, non-lethal opioid and sedative administration may be “intrinsically bad” by PDE’s standards, (2) continuous deep palliative sedation (or “terminal sedation”) should be treated as a bad effect akin to death for purposes of PDE, (3) PDE cannot coherently be applied (...) in cases where death “indirectly” furthers an agent’s intended end of pain relief via medically appropriate palliative care, and (4) application of PDE requires sacrificing common beliefs about the sanctity of human life. I respond by showing that Riisfeldt’s understanding of PDE is seriously mistaken: he misattributes Kantian and Millian reasoning to the principle and conflates acts’ intrinsic properties with their effects. Further, a corrected understanding of PDE can address Riisfeldt’s case-specific objections. (shrink)

Euthanasia and physician-assisted suicide (PAS) by request and/or based on an advance directive are legal in The Netherlands under strict conditions, thus providing options for patients with Huntington's disease (HD) and other neurodegenerative diseases to stay in control and choose their end of life. HD is an inherited progressive disease characterised by chorea and hypokinesia, psychiatric symptoms and dementia. From a qualitative study based on interviews with 15 physicians experienced in treating HD, several ethical issues emerged. Consideration of these (...) aspects leads to a discussion about the professional role of a physician in relation to the personal autonomy of a patient. Such a discussion can raise awareness that talking about end-of-life wishes with an HD patient is part of the legal, professional and moral responsibility of the physician, and that a letter of intent on behalf of the physician can improve active participation in the process. Discussion of these issues can help to advance the debate on euthanasia and PAS in HD and other neurodegenerative diseases. (shrink)