Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an ‘ethics of neuroscience’ and a ‘neuroscience of ethics’. However, questions surface as to whether a ‘neuroscience of ethics’ is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. (...) In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. (shrink)

ZusammenfassungDemographischer Wandel und medizinischer Fortschritt haben zur Folge, dass immer mehr Patienten außerstande sind, selbstbestimmt über eine medizinische Behandlung zu entscheiden. Dann sind andere gefordert, unter Berücksichtigung von Wohl und Willen des Patienten stellvertretend zu entscheiden. Dabei bieten sich drei Entscheidungskriterien an: Paternalismus, substitutive Autonomie (mutmaßlicher Wille) und prospektive Autonomie (vorausverfügter Wille). Keines dieser Kriterien garantiert für sich genommen eine optimale Entscheidung. Realistisch ist nur ein integratives Modell, das diese Kriterien pragmatisch verbindet. Je klarer im Einzelfall die Evidenz für den (...) autonomen Patientenwillen ist, desto mehr Gewicht sollte ihm eingeräumt werden. Dabei lassen sich konkrete Schritte benennen, wie die Evidenz für eine autonome Willensbekundung beurteilt werden kann. Obgleich stellvertretende Entscheidungen in der medizinischen Praxis oft von Ärzten, professionellen Betreuern und Richtern getroffen werden, gibt es überzeugende Gründe für die These, dass der nächste Angehörige am besten geeignet ist, prima facie als stellvertretender Entscheidungsträger zu fungieren. (shrink)

Bioethics, Volume 36, Issue 5, Page 519-524, June 2022.

A citizen’s jury brings together a mix of citizens from different socio-economic groups who deliberate on a particular policy issue over a number of days. Since their development in the 1970s in th...

Objectives Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. Methods The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital in (...) Germany. The transcripts were subjected to qualitative content analysis. Results Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Conclusion Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment. (shrink)

Connecting human minds to various technological devices and applications through brain-computer interfaces (BCIs) affords intriguingly novel ways for humans to engage and interact with the world. Not only do BCIs play an important role in restorative medicine, they are also increasingly used outside of medical or therapeutic contexts (e.g., gaming or mental state monitoring). A striking peculiarity of BCI technology is that the kind of actions it enables seems to differ from paradigmatic human actions, because, effects in the world are (...) brought about by devices such as robotic arms, prosthesis, or other machines, and their execution runs through a computer directed by brain signals. In contrast to usual forms of action, the sequence does not need to involve bodily or muscle movements at all. A motionless body, the epitome of inaction, might be acting. How do theories of action relate to such BCI-mediated forms of changing the world? We wish to explore this question through the lenses of three perspectives on agency: subjective experience of agency, philosophical action theory, and legal concepts of action. Our analysis pursues three aims: First, we shall discuss whether and which BCI-mediated events qualify as actions, according to the main concepts of action in philosophy and law. Secondly, en passant, we wish to highlight the ten most interesting novelties or peculiarities of BCI-mediated movements. Thirdly, we seek to explore whether these novel forms of movement may have consequences for concepts of agency. More concretely, we think that convincing assessments of BCI-movements require more fine-grained accounts of agency and a distinction between various forms of control during movements. In addition, we show that the disembodied nature of BCI-mediated events causes troubles for the standard legal account of actions as bodily movements. In an exchange with views from philosophy, we wish to propose that the law ought to reform its concept of action to include some, but not all, BCI-mediated events and sketch some of the wider implications this may have, especially for the venerable legal idea of the right to freedom of thought. In this regard, BCIs are an example of the way in which technological access to yet largely sealed-off domains of the person may necessitate adjusting normative boundaries between the personal and the social sphere. (shrink)

ZusammenfassungDemographischer Wandel und medizinischer Fortschritt haben zur Folge, dass immer mehr Patienten außerstande sind, selbstbestimmt über eine medizinische Behandlung zu entscheiden. Dann sind andere gefordert, unter Berücksichtigung von Wohl und Willen des Patienten stellvertretend zu entscheiden. Dabei bieten sich drei Entscheidungskriterien an: Paternalismus, substitutive Autonomie (mutmaßlicher Wille) und prospektive Autonomie (vorausverfügter Wille). Keines dieser Kriterien garantiert für sich genommen eine optimale Entscheidung. Realistisch ist nur ein integratives Modell, das diese Kriterien pragmatisch verbindet. Je klarer im Einzelfall die Evidenz für den (...) autonomen Patientenwillen ist, desto mehr Gewicht sollte ihm eingeräumt werden. Dabei lassen sich konkrete Schritte benennen, wie die Evidenz für eine autonome Willensbekundung beurteilt werden kann. Obgleich stellvertretende Entscheidungen in der medizinischen Praxis oft von Ärzten, professionellen Betreuern und Richtern getroffen werden, gibt es überzeugende Gründe für die These, dass der nächste Angehörige am besten geeignet ist, prima facie als stellvertretender Entscheidungsträger zu fungieren. (shrink)

Volume 20, Issue 8, August 2020, Page 85-87.

Demographischer Wandel und medizinischer Fortschritt haben zur Folge, dass immer mehr Patienten außerstande sind, selbstbestimmt über eine medizinische Behandlung zu entscheiden. Dann sind andere gefordert, unter Berücksichtigung von Wohl und Willen des Patienten stellvertretend zu entscheiden. Dabei bieten sich drei Entscheidungskriterien an: Paternalismus, substitutive Autonomie (mutmaßlicher Wille) und prospektive Autonomie (vorausverfügter Wille). Keines dieser Kriterien garantiert für sich genommen eine optimale Entscheidung. Realistisch ist nur ein integratives Modell, das diese Kriterien pragmatisch verbindet. Je klarer im Einzelfall die Evidenz für den (...) autonomen Patientenwillen ist, desto mehr Gewicht sollte ihm eingeräumt werden. Dabei lassen sich konkrete Schritte benennen, wie die Evidenz für eine autonome Willensbekundung beurteilt werden kann. Obgleich stellvertretende Entscheidungen in der medizinischen Praxis oft von Ärzten, professionellen Betreuern und Richtern getroffen werden, gibt es überzeugende Gründe für die These, dass der nächste Angehörige am besten geeignet ist, prima facie als stellvertretender Entscheidungsträger zu fungieren. (shrink)

Clinical ethics consultation, as an activity that may be provided by clinical ethics committees and consultants, is nowadays a well-established practice in North America. Although it has been increasingly implemented in Europe and elsewhere, no agreement can be found among scholars and practitioners on the appropriate role or approach the consultant should play when ethically problematic cases involving conflicts and uncertainties come up. In particular, there is no consensus on the acceptability of consultants making recommendations, offering moral advice upon request, (...) and expressing personal opinions. We translate these issues into the question of whether the consultant should be neutral when performing an ethics consultation. We argue that the notion of neutrality 1) functions as a hermeneutical key to review the history of CEC as a whole; 2) may be enlightened by a precise assessment of the nature and goals of CEC; 3) refers to the normative dimension of CEC. Here, we distinguish four different meanings of neutrality: a neutral stance toward the parties involved in clinical decision making, toward the arguments offered to frame the discussion, toward the values and norms involved in the case, and toward the outcome of decision making, that is to say the final decision and action that will be implemented. Lastly, we suggest a non-authoritarian way to intend the term “recommendation” in the context of clinical ethics consultation. (shrink)

BackgroundThe neurotechnology behind brain-computer interfaces (BCIs) raises various ethical questions. The ethical literature has pinpointed several issues concerning safety, autonomy, responsibility and accountability, psychosocial identity, consent, privacy and data security. This study aims to assess BCI users’ experiences, self-observations and attitudes in their own right and looks for social and ethical implications.MethodsWe conducted nine semi-structured interviews with BCI users, who used the technology for medical reasons. The transcribed interviews were analyzed according to the Grounded Theory coding method.ResultsBCI users perceive themselves (...) as active operators of a technology that offers them social participation and impacts their self-definition. Each of these aspects bears its own opportunities and risks. BCIs can contribute to retaining or regaining human capabilities. At the same time, BCI use contains elements that challenge common experiences, for example when the technology is in conflict with the affective side of BCI users. The potential benefits of BCIs are regarded as outweighing the risks in that BCI use is considered to promote valuable qualities and capabilities. BCI users appreciate the opportunity to regain lost capabilities as well as to gain new ones.ConclusionsBCI users appreciate the technology for various reasons. The technology is highly appreciated in cases where it is beneficial in terms of agency, participation and self-definitions. Rather than questioning human nature, the technology can retain and restore characteristics and abilities which enrich our lives. (shrink)

Our recent publication in Neuroethics re-constructed the perspectives of family caregivers of patients with disorders of consciousness on functional neurodiagnostics. Two papers criticized some of our methodological decisions and commented on some conclusions. In this commentary, we would like to further explain our methodological decisions. Despite the limitations of our findings, which we readily acknowledged, we continue to think they entail valid hypotheses that need further investigation. We conclude that some caregivers with high hopes for the recovery of their loved (...) ones with DOC will most likely not consider results of functional neuroimaging as guiding information for treatment decisions, despite efforts taken to deliver information to them. Caregivers of that type might argue that such test-results are not a reliable source of information for the judgement of whether their loved one is likely going to recover or not. We introduce the concept of epistemic beliefs to formulate this hypothesis and suggest that future qualitative studies in this area should be aware of such beliefs when investigating the effects of functional neurodiagnostics on knowledge communication and shared decision making for patients with DOC. (shrink)

ZusammenfassungDemographischer Wandel und medizinischer Fortschritt haben zur Folge, dass immer mehr Patienten außerstande sind, selbstbestimmt über eine medizinische Behandlung zu entscheiden. Dann sind andere gefordert, unter Berücksichtigung von Wohl und Willen des Patienten stellvertretend zu entscheiden. Dabei bieten sich drei Entscheidungskriterien an: Paternalismus, substitutive Autonomie (mutmaßlicher Wille) und prospektive Autonomie (vorausverfügter Wille). Keines dieser Kriterien garantiert für sich genommen eine optimale Entscheidung. Realistisch ist nur ein integratives Modell, das diese Kriterien pragmatisch verbindet. Je klarer im Einzelfall die Evidenz für den (...) autonomen Patientenwillen ist, desto mehr Gewicht sollte ihm eingeräumt werden. Dabei lassen sich konkrete Schritte benennen, wie die Evidenz für eine autonome Willensbekundung beurteilt werden kann. Obgleich stellvertretende Entscheidungen in der medizinischen Praxis oft von Ärzten, professionellen Betreuern und Richtern getroffen werden, gibt es überzeugende Gründe für die These, dass der nächste Angehörige am besten geeignet ist, prima facie als stellvertretender Entscheidungsträger zu fungieren. (shrink)

This book analyzes the reasons for organ shortage and ventures innovative ideas for approaching this problem. It presents 29 contributions from a highly interdisciplinary group of world experts and upcoming professionals in the field. Every year thousands of patients die while waiting for organ transplantation. Health authorities, medical professionals and bioethicists worldwide point to the urgent and yet unsolved problem of organ shortage, which will be even intensified due to the increasing life expectancy. Even though the practical problem seems to (...) be well known, the search for suitable solutions continues and often restricts itself by being limited through disciplinary and national borders. Combining philosophical reflection with empirical results, this volume enables a unique insight in the ethics of organ transplantation and offers fresh ideas for policymakers, health care professionals, academics, and the general public. (shrink)

Die Posttraumatische Belastungsstörung (PTBS) ist ein schwerwiegendes psychisches Krankheitsbild, das Betroffene nach dem Erleben traumatisierender Situationen entwickeln. Im Zusammenhang mit den Auslandseinsätzen der Bundeswehr ist die PTBS bei Soldaten in den letzten Jahren verstärkt in den Fokus der deutschen Öffentlichkeit gerückt. Auch zivile Traumata bergen ein großes PTBS-Risiko. Seit einigen Jahren werden Methoden zur medikamentösen Prävention der PTBS erforscht. Die beiden wichtigsten Ansätze, die Prävention mit zentralnervös wirkenden Betablockern und Glukokortikoiden, basieren auf der Idee, durch den Eingriff in neuroendokrine Stressachsen (...) Einfluss auf die Art und Weise zu nehmen, in der die Erinnerung im Gedächtnis konsolidiert wird. Durch eine Entemotionalisierung und Abschwächung entsprechender Gedächtnisspuren soll das spätere Auftreten einer PTBS verhindert werden. Beide Ansätze zeigen in Pilotstudien vielversprechende Ergebnisse. Angesichts der herausragenden Bedeutung des Gedächtnisses für Individuum und Gesellschaft sollten Ansätze zur medikamentösen Gedächtnismodifikation (MGM) unter neuroethischen Gesichtspunkten diskutiert und bewertet werden. Der Text beleuchtet die MGM zur PTBS-Prävention entlang von fünf Problemachsen: 1) der Einflussnahme von MGM auf den Prozess der normalen psychischen Verarbeitung traumatischer Erlebnisse, 2) der Gefahr einer Entkopplung von Erinnerung und Realität, 3) der Bedeutung von emotionaler Erinnerung für die Moral, 4) der sozialen, juristischen und historischen Relevanz einer wahrhaftigen Erinnerungskultur und 5) der potenziellen Förderung eines gesellschaftlichen Medikalisierungsprozesses. Trotz ernsthaft zu diskutierender ethischer Bedenken ist – vor dem Hintergrund der Schwere des Krankheitsbilds – aus unserer Sicht eine MGM zur PTBS-Prävention grundsätzlich begrüßenswert, sollte jedoch derzeit nur im Rahmen klinischer Studien erfolgen. Hierfür stellen wir acht forschungsethische Aspekte zur Diskussion, die bei solchen Studien zu berücksichtigen sind. (shrink)

:Brain–computer interfaces are driven essentially by algorithms; however, the ethical role of such algorithms has so far been neglected in the ethical assessment of BCIs. The goal of this article is therefore twofold: First, it aims to offer insights into whether the problems related to the ethics of BCIs can be better grasped with the help of already existing work on the ethics of algorithms. As a second goal, the article explores what kinds of solutions are available in that body (...) of scholarship, and how these solutions relate to some of the ethical questions around BCIs. In short, the article asks what lessons can be learned about the ethics of BCIs from looking at the ethics of algorithms. To achieve these goals, the article proceeds as follows. First, a brief introduction into the algorithmic background of BCIs is given. Second, the debate about epistemic concerns and the ethics of algorithms is sketched. Finally, this debate is transferred to the ethics of BCIs. (shrink)

In his target article, Daryl Pullman explores and explains the divergent developments of the frequency of medical assistance in dying (MAID) in Canada and California in the US (Pullman 2023). One o...

Disorders of consciousness pose a substantial ethical challenge to clinical decision making, especially regarding the use of life-sustaining medical treatment. For these decisions it is paramount to know whether the patient is aware or not. Recent brain research has been striving to assess awareness by using mainly functional magnetic resonance imaging. We review the neuroscientific evidence and summarize the potential and problems of the different approaches to prove awareness. Finally, we formulate the crucial ethical questions and outline the different articles (...) in this special issue on disorders of consciousness. (shrink)

In the three target articles, Ellen Fox et al. present data from their seminal study on ethics consultation in US general hospitals (Fox, Danis, et al. 2022, Fox and Duke 2022, Fox, Tarzian, et al....

Die Verbindlichkeit von Patientenverfügungen (PV) wird kontrovers diskutiert. Dabei ist nicht bekannt, wie verbindlich PV von denen gewollt sind, die sie verfassen. Mit Hilfe eines anonymen Fragebogens wurden Verfasser von PV in bayerischen Palliativeinrichtungen und Beratungsstellen hierzu befragt. Von den 402 Befragten gaben 69,1% an, dass ihre PV auch für Bevollmächtigte und Betreuer strikt verbindlich sein soll. Demgegenüber räumten 23,9% ihrem Stellvertreter ein, von der PV abzuweichen. Die lebensbedrohlich Erkrankten unter den Befragten legten nicht weniger, sondern signifikant mehr Wert auf (...) hohe Verbindlichkeit. Für den Fall, dass die PV nicht anwendbar sein sollte, wünschen deren Verfasser eine Entscheidung durch ihren Vertreter. Abgelehnt wird die richterliche Entscheidung bei Dissens. (shrink)

BackgroundHealth decisions occur in a context with omnipresent social influences. Information concerning what other patients decide may present certain interventions as more desirable than others.ObjectivesTo explore how physicians refer to what other people decide in conversations about the relevancy of cardio-pulmonary resuscitation or do-not-attempt-resuscitation orders.MethodsWe recorded forty-three physician–patient admission interviews taking place in a hospital in French-speaking Switzerland, during which CPR is discussed. Data was analysed with conversation analysis.ResultsReference to what other people decide in regards to CPR is used five (...) times, through reported speech. The reference is generic, and employed as a resource to deal with trouble encountered with the patient’s preference, either because it is absent or potentially incompatible with the medical recommendation. In our data, it is a way for physicians to present decisional paths and to steer towards the relevancy of DNAR orders. By calling out to a sense of membership, it builds towards the patient embracing norms that are associated with a desirable or relevant social group.ConclusionsIntroducing DNAR decisions in terms of what other people opt for is a way for physicians to bring up the eventuality of allowing natural death in a less overt way. Formulating treatment choices in terms of what other people do has implications in terms of supporting autonomous and informed decision making, since it nudges patients towards conformity with what is presented as the most preferable choice on the basis of social norms. (shrink)

IntroductionSwitzerland lacks specific legal regulation of assistance in suicide. The practice has, however, developed since the 1980s as a consequence of a gap in the Swiss Criminal Code and is performed by private right-to-die organisations. Traditionally, assistance in suicide is considered contrary to the philosophy of palliative care. Nonetheless, Swiss palliative care physicians regularly receive patient requests for suicide assistance. Their attitudes towards the legal regulations of this practice and their experience in this context remain unclear.ObjectivesOur study aimed to explore (...) and describe the attitudes and experiences of Swiss palliative care physicians concerning the legal situation of suicide assistance.MethodsIn 2019, we performed an exploratory interview study with 12 Swiss palliative care physicians on palliative sedation as an alternative to assisted suicide. In this paper, we present the results that emerged from a thematic subanalysis of the data.ResultsParticipants stated that assistance in suicide and palliative care are based on opposing philosophies, but they admitted a shift in paradigm over the last years in the sense that one practice does not necessarily exclude the other. They reported various roles in suicide assistance and considered that the current activities of Swiss right-to-die organisations were problematic and needed to be regulated by law.Discussion and conclusionThese results could enrich national and international reflection on suicide assistance in the context of palliative care by reducing confusion between the two practices and strengthening the confidence of patients and their relatives. (shrink)

The allocation of any scarce health care resource, especially a lifesaving resource, can create profound ethical and legal challenges. Liver transplant allocation currently is based upon urgency, a sickest-first approach, and does not utilize capacity to benefit. While urgency can be described reasonably well with the MELD system, benefit encompasses multiple dimensions of patients’ well-being. Currently, the balance between both principles is ill-defined. This survey with 502 participants examines how urgency and benefit are weighted by different stakeholders. Liver transplant patients (...) favored the sickest-first allocation, although all other groups tended to favor benefit. Criteria of a successful transplantation were a minimum survival of at least 1 year and recovery of functional status to being ambulatory and capable of all self-care. An individual delisting decision was accepted when the 1-year survival probability would fall below 50%. Benefit was found to be a critical variable that may also trigger the willingness to donate organs. The strong interest of stakeholder for successful liver transplants is inadequately translated into current allocation rules. (shrink)

Background The allocation of any scarce health care resource, especially a lifesaving resource, can create profound ethical and legal challenges. Liver transplant allocation currently is based upon urgency, a sickest-first approach, and does not utilize capacity to benefit. While urgency can be described reasonably well with the MELD system, benefit encompasses multiple dimensions of patients’ well-being. Currently, the balance between both principles is ill-defined. Methods This survey with 502 participants examines how urgency and benefit are weighted by different stakeholders. Results (...) Liver transplant patients favored the sickest-first allocation, although all other groups tended to favor benefit. Criteria of a successful transplantation were a minimum survival of at least 1 year and recovery of functional status to being ambulatory and capable of all self-care. An individual delisting decision was accepted when the 1-year survival probability would fall below 50%. Benefit was found to be a critical variable that may also trigger the willingness to donate organs. Conclusions The strong interest of stakeholder for successful liver transplants is inadequately translated into current allocation rules. (shrink)

Behandlungsfehler in der Psychotherapie sind bisher kaum erforscht. Eine empirisch gestützte Kategorisierung von Behandlungsfehlern stellt einen ersten Schritt dar, sich evidenzbasierten ethischen Empfehlungen zum Umgang mit solchen Fehlern zu nähern. Zielsetzung dieser Arbeit ist es, dafür erste Grundlagen zu erarbeiten, die auf Erfahrungen von Praktikern Bezug nehmen. Nach einer systematischen Literaturrecherche wurden 30 semistrukturierte Interviews mit approbierten Psychotherapeuten unterschiedlicher Ausrichtungen (Schulen) geführt und anhand der qualitativen Inhaltsanalyse nach Mayring ausgewertet. Die beschriebenen, alltäglich auftretenden Behandlungsfehler konnten in technische, normative, Einschätzungs- und (...) Systemfehler klassifiziert werden. Viele der technischen und Einschätzungsfehler wurden als reversibel angesehen; sie könnten sogar konstruktiv für die Behandlung nutzbar gemacht werden. Das Versäumnis, einen Fehler zu korrigieren, wurde als Hauptfehler betrachtet. Bei normativen Fehlern sei mit rechtlichen oder berufspolitischen Konsequenzen, aber auch mit Vertrauensverlust und Therapieabbruch zu rechnen. Für Systemfehler fühlten sich die befragten Therapeuten nicht verantwortlich; hier seien berufspolitische Änderungen nötig. Die Ergebnisse zeigen, dass die Befragten zu der Empfehlung tendieren, Psychotherapiepatienten in passender Form über Behandlungsfehler aufzuklären und in die entstehenden Konsequenzen einzubeziehen. Fazit: Psychotherapeuten äußern sich aufgeschlossen gegenüber einer transparenten, konstruktiven Fehlerkultur – eine wesentliche Voraussetzung für Fehlerprävention. Häufig resultiert erst durch die fehlende Korrektur eines (alltäglichen) Fehlers ein Behandlungsfehler, der Konsequenzen hat (z. B. Scheitern der Therapie). Um diesem entgegenzuwirken, zeichnet sich eine Befürwortung für eine passende Form der Patientenaufklärung über Fehler ab. (shrink)

Dealing with errors in psychotherapy is challenging, both ethically and practically. There is almost no empirical research on this topic. We aimed (1) to explore psychotherapists’ self-reported ways of dealing with an error made by themselves or by colleagues, and (2) to reconstruct their reasoning according to the two principle-based ethical approaches that are dominant in the ethics discourse of psychotherapy, Beauchamp & Childress (B&C) and Lindsay et al. (L).

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute decision making will be highlighted: (1) Should (...) there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

The increasing availability of brain data within and outside the biomedical field, combined with the application of artificial intelligence (AI) to brain data analysis, poses a challenge for ethics and governance. We identify distinctive ethical implications of brain data acquisition and processing, and outline a multi-level governance framework. This framework is aimed at maximizing the benefits of facilitated brain data collection and further processing for science and medicine whilst minimizing risks and preventing harmful use. The framework consists of four primary (...) areas of regulatory intervention: binding regulation, ethics and soft law, responsible innovation, and human rights. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the presumed will of (...) patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)