Patientenselbstbestimmung und Patientenverfügungen aus der Sicht von Patienten mit amyotropher Lateralsklerose

Zusammenfassung  Patientenselbstbestimmung und Patientenverfügungen (PV) haben zunehmende Bedeutung und Beachtung erfahren. In der vorliegenden qualitativen Studie wurden 15 Patientinnen und Patienten mit amyotropher Lateralsklerose (ALS)—einer unheilbaren, chronisch-degenerativen Erkrankung mit vorhersehbarer Symptomatik—interviewt, um zu erfahren, welche Werte und Kriterien sie bei prospektiven Entscheidungen am Lebensende und bei der Abfassung von PV zugrunde legen. Die Auswertung erfolgte nach der Methode der grounded theory. Die befragten Patientinnen und Patienten befürworteten einen Verzicht auf lebenserhaltende Behandlungen, wenn sie keine hinreichenden Lebensmöglichkeiten (LM) mehr sahen, d. h. wenn sie die aktuelle Lebensqualität für unzureichend erachteten und die Chance auf Besserung als gering einschätzten. Dem Patientenwillen sprachen sie bei der Entscheidungsfindung ein Vetorecht zu. Patientenverfügungen fassten sie erst ab, als sie keine Hoffnung mehr auf Besserung ihrer Erkrankung hatten. Sie verstanden diese als Instrumente zur vorsorglichen Erklärung ihres Wunsches, auf lebensverlängernde Maßnahmen zu verzichten, wenn die LM inakzeptabel geworden sind. Damit wollten sie sich gegenüber dem Arzt absichern, den sie in der Rolle eines Anwalts des Lebens sahen und mit dem sie daher ihre Behandlungswünsche nicht besprochen haben. Trotz vorhersehbarer Symptomatik legten sie in ihren PV keine spezifischen Behandlungswünsche nieder, sondern verwendeten allgemeine Formularmuster ohne konkreten Bezug zu ihrer Erkrankung. Daher bestehen auch bei dieser Patientengruppe Zweifel, ob die PV in einer konkreten Behandlungssituation hilfreich sind.

Spezifische Bedarfe bei zahnärztlichen Patienten mit Demenz und ihre ethischen Implikationen

Definition of the problem

The central foundations of successful dental treatment consist of a trustful patient-dentist relationship, the professional and psychosocial expertise of the team treating the patient, and consideration of ethical aspects both during the therapeutic decision-making process and during the subsequent execution of therapy. This is especially true of the dental treatment of (mostly elder) persons with dementia, calling for an in-depth assessment of the various normative implications.

Arguments

In geriatric dentistry in particular, situational dilemmas regarding treatment often arise from specific constellations (e.?g. greatly reduced potential for dental therapy, lack of ability regarding oral hygiene and lack of individual patient responsibility) combined with an acute need for treatment and the necessary involvement of third parties. These dilemmas frequently place additional professional and normative demands on the dentist. The current contribution discusses this specific situation, first by way of theoretical discourse and subsequently with a case-related approach on the basis of two case histories.

Conclusion

It becomes clear here that classic state-of-the-art therapies are replaced by “compromise treatment” in many cases in geriatric dentistry. Such treatment follows divergent diagnostic and therapeutic rules, poses changed requirements in terms of communication and presents specific ethical challenges and pitfalls.

     

Vorausverfügte Therapieablehnungen in Situationen von Eigen- oder Fremdgefährdung. Ethische und rechtliche Überlegungen zur Umsetzung von Patientenverfügungen in der Psychiatrie

Definition of the problem

In case of court-ordered involuntary hospitalization due to danger to self or to others psychiatric advance directives can lead to clinically and ethically challenging situations – especially when they contain (total) treatment refusals. In such situations, patients can neither be discharged from hospital nor medically treated.

Arguments

This article discusses ethical challenges in the context of advance treatment refusals from an interdisciplinary perspective. We outline legal limitations of advance directives and normative preconditions of valid advance directives (such as mental capacity at the time of composition, applicability to the current life and health situation) and analyse them with regard to clinical practice. Hence, we elaborate on ethical arguments for and against the conduction of coercive measures and coercive treatments in situations of danger to self or to others. By identifying normatively relevant aspects, our paper further contributes to the objective of ethically justified clinical decision-making in the context of advance treatment refusals.

Conclusion

Finally, we summarize implications for clinical practice that follow from the legal authority of advance directives. On a general level, we discuss ethical tensions resulting from psychiatry’s legal obligation to intervene in situations of danger to self or to others in the context of advance treatment refusals. On the level of the individual physician-patient relationship, we outline professional offers for consultation. Further, we reflect on their potential to better inform patients about possible far-reaching consequences (total) advance treatment refusals could entail.

     

Mit zweierlei Maß: Die mangelnde Verbindlichkeit von Patientenverfügungen bei untergebrachten Personen mit psychischen Störungen in der Schweiz

Definition of the problem

Full age patients with mental disorders and preserved decision-making capacity are increasingly interested in drafting advance directives. Whereas in Switzerland (as well as in Germany) advance directives are binding in principle, an advance directive is not binding and has only to be considered in case of involuntary admission due to a mental disorder. Thereby, the virtual aim of an advance directive – the anticipated self-determination – is questioned.

Arguments

From an ethical perspective, patients with mental disorders have the same rights as patients with somatic diseases. Therefore, the question arises if there are good reasons for this unequal treatment. In the present contribution, four possible reasons are analyzed: (1) persons with mental disorders are “different”; (2) protection from self-harm; (3) often not present end-of-life context; (4) reduced bindingness as the more appropriate standard in general.

Conclusion

The authors come to the conclusion that patients with mental disorders are often capable of composing a valid advance directive, and just as any other human being, they have a principal and binding right for self-determination, even though they are particularly vulnerable in crisis situations.

     

Leistungsrechtliche Konsequenzen einer Behandlungsablehnung bei untergebrachten Patienten – Chancen und Risiken einer Anwendung von Vorausverfügungen in der Psychiatrie

Definition of the problem

Patient’s advance directives offer a possibility to keep autonomy even in the case of acute psychiatric disease. The advance directives may in some cases interfere with law when patients, who are suffering from acute psychiatric disease, are coerced to psychiatric treatment by law. Thereby it is possible that patients who are kept in psychiatric treatment involuntary cannot receive treatment because of their documented autonomous will. In these cases economical questions interfere with treatment of psychiatric patients who are coerced for in-patient treatment, but deny medical treatment: in those cases in-patient treatment is typically not covered by German health insurance.

Arguments

The text illustrates the ethical conflict consisting of coerced in-patient treatment by law and the denial of treatment by patients advance directives.

Conclusion

The paper discusses joint crisis plans as a possibility for increasing treatment compliance and decreasing coerced in-patient treatment.

     

Personalisierte Medizin und Informed Consent: Klinische und ethische Erwägungen im Rahmen der Entwicklung einer Best Practice Leitlinie für die biobankbasierte Ganzgenomforschung in der Onkologie

Definition of the problem Breakthrough discoveries in genomics allow the sequencing of the human genome within a couple of days at a reasonable price. In cancer research, whole genome sequencing helps to identify the molecular lesions that drive tumour growth and thereby provide the basis for the development of targeted therapies. However, genomic research also raises new ethical questions. The interdisciplinary EURAT project in Heidelberg (Germany) addresses these normative questions. It aims at developing an ethically and legally informed practice for biobank-based genomic research in Heidelberg. Arguments This paper gives an overview of the relevant ethical and clinical questions of biobank-based genomic sequencing with regard to the informed consent process. It also presents a code of conduct as an institutional ethics response to the following question: how research institutions can foster the responsible handling of genetic information in biobank-based research throughout the institution. Conclusion A thorough informed consent process and the code of conduct are elements of a best-practice guideline and should be a guide for responsible conduct of all employees who handle sensitive genetic data.