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How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? We conducted a qualitative interview study with 13 people with ALS in Germany from March 2019 to April 2021. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs and the preparedness for decision-making. We identified the coping strategies ‘avoid thinking about end-of-life’ and its counterpart, ‘planning ahead to be well-prepared,’ and differentiated the latter into the patterns ‘withdrawing from life and taking precautions against life-prolongation’ and ‘searching for a new meaning in life and preparing for life-sustaining treatment’. The approaches are based on individual perceptions, attitudes and motives and can be positively/negatively reinforced by healthcare professionals (HCP), family and other interpersonal networks, but also by disease progression and in reaction to health care services. Type and degree of needs concerning information and counselling differed according to coping strategies. These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS‘ coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.

Moral stress is a major concern in veterinary practice. Often, it is associated with the challenges in end-of-life situations. Euthanasia, however, is also meant to bring relief to animal patients and their owners. The reasons for the moral strain euthanizing animals causes to professional veterinarians need to be further clarified. This article investigates “euthanasia” from a philosophical, legal, and practical perspective. After introducing relevant aspects of euthanasia in small animal practice, the term is analyzed from an ethical point of view. That includes both a broad and a narrow definition of “euthanasia” and underlying assumptions regarding different accounts of animal death and well-being. Then, legal and soft regulations are discussed with regard to the theoretical aspects and practical challenges, also including questions of personal morality. It is argued that the importance of ethical definitions and assumptions concerning euthanasia and their intertwinement with both law and practical challenges should not be neglected. The conclusion is that veterinarians should clarify the reasons for their potential discomfort and that they should be supported by improved decision-making tools, by implementation of theoretical and practical ethics in veterinary education, and by updated animal welfare legislation.

At first glance, human and (companion animal) veterinary medicine share challenging processes in end-of-life (EOL) decision-making. At the same time, treatment options in both professions are substantially different. The potential of an interdisciplinary exchange between both fields has been neglected by empirical research so far. In this qualitative study, professionals from both fields were brought together in interdisciplinary focus groups to investigate the ethical aspects of convergences and divergences in EOL situations in human and veterinary medicine. The authors present and discuss an innovative mix of materials and methods as stimuli for discussion and for generating hypotheses. The results point toward a general convergence of issues, challenges, and judgements in EOL situations in both fields, such as professional ethos, communication with the family and the role thereof as well as the ideals of death, clearly exceeding the expectations of study participants. At the same time, the study highlights a few prominent differences such as the access to patients' preferences or legal and practical constraints. The findings suggest that using social science methods in empirical interdisciplinary biomedical-veterinary ethics could help to shed more light on this new area. Animal as well as human patients can potentially benefit from this mutual, scientifically accompanied exchange and the resulting identification and corrections of misconceptions.

Veterinary and human medicine share the challenges of end-of-life decisions. While there are legal and practical differences, there might be parallels and convergences regarding decision-making criteria and reasoning patterns in the two disciplines. In this online survey, six variants of a fictitious thought experiment aimed at pointing out crucial criteria relevant for decision-making within and across both professional fields. The six variants introduced four human and two animal patients with the same disease but differing in age, gender and, in case of the human patients, in terms of their state of consciousness. Participants could choose between four different treatment options: euthanasia, continuous sedation, a potentially curative treatment with severe side effects and no intervention. Study participants were human and veterinary medical professionals and an additional control group of lay people. Decisions and justifications for the six variants differed but the three groups of participants answered rather homogeneously. Besides the patient’s “suffering” as a main criterion, “age”, “autonomy” and, to a lesser extent, “species” were identified as important criteria for decision-making in all three groups. The unexpected convergences as well as subtle differences in argumentation patterns give rise to more in-depth research in this cross-disciplinary field.

Amyotrophic lateral sclerosis (ALS) leads to death on average 2–4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this review are to provide an insight into the following questions: (1) How do people with amyotrophic lateral sclerosis (PALS), their families and health care professionals (HCPs) communicate about life-sustaining and life-shortening options? (2) What are the challenges for all involved in decision making and communication about this topic? To answer these questions, we searched eight databases for publications in English and German on end-of-life issues of PALS. We included texts published between 2008 and 2018, and updated our search to May 2020. Sources were analysed in MAXQDA using deductively and inductively generated codes. After the final analysis, 123 full texts were included in this review. We identified a wide range of communicative challenges and six different and, in part, opposite communication patterns: avoiding or delaying communication on end-of-life issues, openly considering dying and actively seeking assistance, ignoring or disregarding patients’ wishes, discussing and respecting the patients’ wishes, engaging in advance care planning and avoiding or delaying advance care planning. The literature reveals a very heterogeneous response to end-of-life issues in ALS, despite several good-practice suggestions, examples and guidelines. We derive a strong need for harmonization and quality assurance concerning communication with PALS. Avoiding or delaying communication, decision making and planning, as well as ignoring or disregarding the patient’s will by HCP can be judged as a violation of the ethical principles of autonomy and non-maleficence.

Clinical Ethics Committees and Ethics Consultation have become an established part of clinical medicine in many countries all over the world. Following the suggestions of the organizers of ICCEC 2023, Neitzke reflects upon the role of such committees and services. The term \"role\" has different meanings and connotations: function, purpose, effect, part, significance, task, model, or impact are not synonymous, but emphasize certain aspects of different understandings of \"role.\" Besides, the contribution will distinguish descriptive roles, which can be analyzed empirically, from normative roles, which are striving for an ideal of ethics consultation. Roles might vary regarding consultations on the ward, for the hospital, or within the healthcare system. Meanwhile, Picozzi investigates the relationship between \"The role of clinical ethics committees and clinical ethics consultation,\" starting from the two aspects that define clinical ethics: a focus on the doctor-patient relationship and to improve the care of the patient while Moodley stresses that, in healthcare settings, CECs represent the ideal consultation mechanism to resolve clinical ethical dilemmas.

Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care. To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained. Ethical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors' Summary.

We have studied national laws on advance directives in various Western European countries: Romance-speaking countries (Italy, France, Portugal, and Spain), English-speaking countries (Ireland and the United Kingdom), and German-speaking countries (Austria, Germany, and Switzerland). We distinguish two potentially complementary types of advance medical declaration: the ‘living will’ and the nomination of a legal proxy. After examining the similarities and differences between countries, we analyse in detail the legislation of four countries (Spain, France, England, and Germany), since the other countries in this survey have similar legal principles and/or a similar political approach. In conclusion, we note that in all the countries examined, advance directives have been seen as an instrument to enable the patient’s right to self-determination. Notwithstanding, in Romance-speaking countries, the involvement of physicians in the end-of-life process and risks arising from the execution of advance directives were also considered.

Standard views of good death in human and veterinary medicine considerably differ from one another. Whereas the good death ideal in palliative medicine emphasizes the positive aspects of non-induced dying, veterinarians typically promote a quick and painless killing with the aim to end suffering. Recent developments suggest a convergence of both professions and professional attitudes, however. Palliative physicians are confronted with patients wishing to be ‘put to sleep’, while veterinarians have begun to integrate principles and practices from hospice care. We will argue that the discourses on good human and animal deaths are not distinct, but that they interact and influence each other. On the one hand, veterinary medicine adapts techniques like chemotherapy or sedation from palliative end-of-life care. On the other hand, philosophers, veterinarians, pet owners, patients and the general public alike make certain assumptions about the (dis)analogy of human and animal dying or killing. Unfortunately, these interactions have only scarcely been reflected normatively, especially on the part of human medicine. Conflicts and misattributions with potential serious negative consequences for the (animal and human) patients’ wellbeing are provoked. For these reasons, palliative physicians and veterinarians are invited to engage in the debate around human and animal end-of-life care.

BackgroundAmyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon.ObjectivesOur aim was to examine the scope of literature on the wish to die in ALS and provide an insight into determinants and motives for different end-of-life options.MethodsWe searched eight databases for English and German publications on death wishes in ALS for the period from 2008 to 2018 and updated the search up to May 2020. After the screening process, 213 full texts were included for the final analysis. We analysed the texts in MAXQDA, using deductively and inductively generated codes.ResultsWe identified end-of-life considerations, ranging from wishes to die without hastening death, to options with the possibility or intention of hastening death. Besides physical impairment, especially psychosocial factors, socio-demographic status and socio-cultural context have a great impact on decisions for life-shortening options. There is huge variation in the motives and determinants for end-of-life considerations between individuals, different societies, healthcare and legal systems.ConclusionsFor a variety of reasons, the information and counselling provided on different options for sustaining life or hastening death is often incomplete and insufficient. Since the motives and determinants for the wish to hasten death are extremely diverse, healthcare professionals should investigate the reasons, meaning and strength of the desire to die to detect unmet needs and examine which interventions are appropriate in each individual case.