This article reviews the Dutch societal debate on euthanasia/assisted suicide in dementia cases, specifically Alzheimer's disease. It discusses the ethical and practical dilemmas created by euthanasia requests in advance directives and the related inconsistencies in the Dutch legal regulations regarding euthanasia/assisted suicide. After an initial focus on euthanasia in advanced dementia, the actual debate concentrates on making euthanasia/assisted suicide possible in the very early stages of dementia. A review of the few known cases of assisted suicide of people with so-called (...) early dementia raises the question why requests for euthanasia/assisted suicide from patients in the early stage of Alzheimer's disease are virtually non-existent. In response to this question two explanations are offered. It is concluded that, in addition to a moral discussion on the limits of anticipatory choices, there is an urgent need to develop research into the patient's perspective with regard to medical treatment and care-giving in dementia, including end-of-life care. (shrink)

BackgroundEverybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their (...) validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD.MethodWe intend to recruit at leastN = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed.DiscussionThe results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD.Trial RegistrationDRKS, DRKS00026691, registered 15th of October 2021,https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691. (shrink)

Thought experiments that concoct bizarre possible world modalities are standard fare in debates on personal identity. Appealing to intuitions raised by such evocations is often taken to settle differences between conflicting theoretical views that, albeit, have practical implications for ethical controversies of personal identity in health care. Employing thought experiments that way is inadequate, I argue, since personhood is intrinsically linked to constraining facts about the actual world. I defend a moderate modal skepticism according to which intuiting across conceptually incongruent (...) worlds constitutes ‘invalid intuitioninferences’—i.e., carrying over intuitions gathered from facts about possible worlds that are at odds with facts about the actual world, for the purpose of making claims about real-life persons and their identity, leads to conceptual incongruences. Such a methodological fallout precludes accurate, informative judgments about personal identity in the actual world, calling into question the adequacy of thought experimental considerations for potential real world applications in medical ethics. (shrink)

Der Selbstbestimmungdes Patienten kommt in der modernen Debatte über das Gesundheitswesen eine zentrale Bedeutung zu. Selbstbestimmung ist aber ein voraussetzungsvoller Begriff, der für Patientengruppen wie Demenzbetroffene, deren Entscheidungs- und Einwilligungsfähigkeit nachlässt oder nicht mehr gegeben ist, eine Reihe von Fragen aufwirft. Auf der Grundlage der jeweiligen Symptomentwicklung der Demenzerkrankung und eigener Erfahrungen im Umgang mit Demenzbetroffenen wirdde rEntwicklungdes Willens in den verschiedenen Stadien der Demenz nachgegangen. Dabei wird den Dimensionen der Differenziertheit der Denkinhalte, der Beurteilungsbasis und der Entscheidungskonstanz eine besondere (...) Bedeutung zugemessen und für eine Graduierung der Selbstbestimmungsmöglichkeiten im Umgang mit Demenzbetroffenen plädiert. Wegen der Schwererkennbarkeit der oft verschlüsselten Willensbekundungen Demenzbetroffener wird der Willenswahrnehmung und dem Training der genauen Beobachtung, Einfühlung und Sensibilität im Umgang mit den Betroffenen großes Gewicht beigemessen. Als Ziel wird die jeweils weitestgehende Selbstbestimmung, im Verlaufe der Erkrankung auch Teilselbstbestimmung und schließlich Mitwirkung bei der individuellen Wohlbestimmung im Sinne eines Grundrechtsschutzes vertreten. (shrink)

ZusammenfassungDer Selbstbestimmungdes Patienten kommt in der modernen Debatte über das Gesundheitswesen eine zentrale Bedeutung zu. Selbstbestimmung ist aber ein voraussetzungsvoller Begriff, der für Patientengruppen wie Demenzbetroffene, deren Entscheidungs- und Einwilligungsfähigkeit nachlässt oder nicht mehr gegeben ist, eine Reihe von Fragen aufwirft. Auf der Grundlage der jeweiligen Symptomentwicklung der Demenzerkrankung und eigener Erfahrungen im Umgang mit Demenzbetroffenen wirdde rEntwicklungdes Willens in den verschiedenen Stadien der Demenz nachgegangen. Dabei wird den Dimensionen der Differenziertheit der Denkinhalte, der Beurteilungsbasis und der Entscheidungskonstanz eine besondere (...) Bedeutung zugemessen und für eine Graduierung der Selbstbestimmungsmöglichkeiten im Umgang mit Demenzbetroffenen plädiert. Wegen der Schwererkennbarkeit der oft verschlüsselten Willensbekundungen Demenzbetroffener wird der Willenswahrnehmung und dem Training der genauen Beobachtung, Einfühlung und Sensibilität im Umgang mit den Betroffenen großes Gewicht beigemessen. Als Ziel wird die jeweils weitestgehende Selbstbestimmung, im Verlaufe der Erkrankung auch Teilselbstbestimmung und schließlich Mitwirkung bei der individuellen Wohlbestimmung im Sinne eines Grundrechtsschutzes vertreten. (shrink)

This discussion aims to give a normative theoretical basis for a “best judgment” model of surrogate decision making rooted in a regulative ideal of love. Currently, there are two basic models of surrogate decision making for incompetent patients: the “substituted judgment” model and the “best interests” model. The former draws on the value of autonomy and responds with respect; the latter draws on the value of welfare and responds with beneficence. It can be difficult to determine which of these two (...) models is more appropriate for a given patient, and both approaches may seem inadequate for a surrogate who loves the patient. The proposed “best judgment” model effectively draws on the values incorporated in each of the traditional standards, but does so because these values are important to someone who loves a patient, since love responds to the patient as the specific person she is. (shrink)

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives of refusing life-saving treatments or requesting euthanasia of persons with dementia who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented (...) by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. (shrink)

Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients’ autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all of (...) whom might benefit from using advance directives. At the same time, the closed nature of prisons and the disparate power relationships that characterise them mean that great caution must be exercised to prevent care being withdrawn or withheld from inmates who actually want to receive it. This paper explores the issue of prisoners’ advance directives in the European context, starting with the position enshrined in international and European law that prisoners retain all their human rights, except the right to liberty, and are therefore entitled to self-determination regarding health care decisions. (shrink)

ZusammenfassungPatientenverfügungen für spätere Zustände schwerer kognitiver Beeinträchtigungen, wie sie für Spätphasen der Demenz typisch sind, stoßen auf weitergehende Vorbehalte als Patientenverfügungen für anderweitige Zustände eingeschränkter Einwilligungsfähigkeit. Einer der Gründe dafür scheinen die ethischen und psychologischen Konflikte im Gefolge von Patientenverfügungen zu sein, mit denen Patienten in gesunden Tagen für bestimmte Phasen der Erkrankung die Nichtbehandlung interkurrenter Erkrankungen oder die Unterlassung künstlicher Ernährung verfügt haben, während sich unter den in der Patientenverfügung gemeinten Bedingungen keine Anzeichen finden, dass sie unter ihrer Situation (...) leiden. Der Beitrag argumentiert für diese Situation für eine „gemischte“ ethische Strategie: Patientenverfügungen im rechtlichen Sinne sollten insbesondere dann, wenn sie im Rahmen eines Advance Care Planning erstellt sind, befolgt werden, um zu verhindern, dass den Vorausverfügenden das Vertrauen in die spätere Befolgung ihres Wunsches nach Abbruch oder Nichtaufnahme medizinischer Behandlungen genommen wird. Dagegen sollten darüber hinausgehende „Pflegeverfügungen“ ohne rechtlich verbindlichen Status nur in Fällen beachtet werden, in denen zwischen vorausverfügtem und „natürlichem“ Willen Konkordanz besteht. (shrink)

ZusammenfassungDer Begriff Advance Care Planning bezeichnet ein Konzept umfassender gesundheitlicher Vorausplanung, das u. a. darauf zielt, Menschen bei der Erstellung gesundheitlicher Vorausverfügungen, in denen Ziele und Wünsche für zukünftige Behandlungen festgelegt werden, durch aufsuchende, qualifizierte Beratungsangebote zu unterstützen. Weiterhin zielt dieses Konzept darauf, die Verbreitung und Umsetzung solcher Vorausverfügungen durch strukturelle, meist regionale Maßnahmen zu fördern. Dieser Beitrag diskutiert Advance Care Planning in der Psychiatrie. Er stellt verschiedene Formen psychiatrischer Vorausverfügungen sowie exemplarisch rechtliche Regelungen aus den USA, aus Großbritannien und (...) aus Deutschland vor. Ferner beleuchtet er die internationale Studienlage zur Umsetzung von Advance Care Planning in der Psychiatrie. Diese belegt deutlich den Bedarf an qualifizierten Beratungs- und Unterstützungsangeboten, da ohne solche Angebote psychiatrische Vorausverfügungen in der Praxis nur wenig Verbreitung und auch wenig Beachtung finden. Vor dem Hintergrund dieser Erfahrungen plädieren die Autoren dafür, Advance-Care-Planning-Programme als Pilotprojekte zu etablieren mit dem Ziel, die Qualität und die Akzeptanz gesundheitlicher Vorausverfügungen in der Psychiatrie zu erhöhen. Diese Projekte sollten wissenschaftlich begleitet, evaluiert und ggf. angepasst werden. (shrink)

Detection of Alzheimer’s disease in an early stage is receiving increasing attention for a number of reasons, such as the failure of drug trials in more advanced disease stages, the demographic evolution, the financial impact of AD, and the approval of amyloid tracers for clinical use. Five focus group interviews with stakeholders were conducted.. The verbatim transcripts were analysed via the Nvivo 11 software. Most stakeholder groups wanted to know their own amyloid PET scan result. However, differences occurred between FGs: (...) two groups wanted to know, whilst in the three other groups FG members opted not to know or were still in doubt about their decision. Stakeholders provided insight into their reasons for wanting to know their amyloid PET scan result, for not wanting to know their result, or why they were in doubt about their decision. Several advantages and disadvantages were mentioned as part of knowing their amyloid PET scan result. Certain considerations were clustered in a grey zone, in between advantage and disadvantage, such as the emotional consequences. Clinicians, researchers, and policymakers ought to be aware of the diversity of reasons for wanting to know their result and how possible benefits and risks can be viewed differently. The current findings are of importance for future early diagnosis and disclosure of results in the research setting. (shrink)

It is commonly believed thatgeriatric medicine generates a distinctive setof ethical problems. Implicated are such issuesas resource allocation, competence and consent,advance directives, medical futility anddeliberate death. It is also argued that itwould be unjust to allow the elderly to competewith younger populations for expensive andscarce health care resources because theelderly “have already lived,” and that treatingthem the same as these other populations woulddiminish the available resources unfairly,prolong a life of inevitably failing health andresult in increased health care expenditures.In fact, however, (...) this perception of ethicaluniqueness is mistaken. Differences in medicalconditions, demographics and aetiology shouldnot be allowed to obscure the fact that ethicalissues in geriatric medicine are essentiallythe same as those faced in any other area ofhealth care, and that the solutions that areadopted in the geriatric context must beconsistent with the ethical principles that arefollowed elsewhere. The paper argues that theroot of the mistaken perception lies in theabandonment of the Hippocratic mandate ofmedicine and in an unreflective adherence tothe belief that medical advances are inevitablybeneficial. It is suggested that a return topatient-centred medicine and the use of ethicsimpact analyses before introducing medicaladvances may be ethically appropriate. (shrink)