"SpezPat"- common advance directives versus disease-centred advance directives: a randomised controlled pilot study on the impact on physicians' understanding of non-small cell lung cancer patients' end-of-life decisions.

BACKGROUND: The advance directive represents patients' health care choices and fosters patients' autonomy. Nevertheless, understanding patients' wishes based on the information provided in advance directives remains a challenge for health care providers. Based on the ethical premises of positive obligation to autonomy, an advanced directive that is disease-centred and details potential problems and complications of the disease should help health care providers correctly understand patients' wishes. To test this hypothesis, a pilot-study was conducted to investigate whether physicians could make the correct end-of-life decision for their patients when patients used a disease-centred advance directive compared to a common advance directive.  MATERIAL AND METHODS: A randomised, controlled, prospective pilot study was designed that included patients with non-small cell lung cancer (NSCLC) stage VI from the Department of Haematology and Medical Oncology, University Medical Centre, Goettingen. Patients were randomised into intervention and control groups. The control group received a common advance directive, and the intervention group received a disease-centred advance directive. Both groups filled out their advance directives and returned them. Subsequently, patients were asked to complete nine medical scenarios with different treatment decisions. For each scenario the patients had to decide whether they wanted to receive treatment on a 5-point Likert scale. Four physicians were given the same scenarios and asked to decide on the treatment according to the patients' wishes as stated in their advance directives. The answers by patients and physicians were then compared to establish whether physicians had made the correct assumptions. RESULTS: Recruitment was stopped prior to reaching anticipated sample target. 15 patients with stage IV NSCLC completed the study, 9 patients were randomised into the control group and 6 patients in the intervention group. A total of 135 decisions were evaluated. The concordance between physicians' and patients' answers, was 0.83 (95%-CI 0.71-0.91) in the intervention group, compared to 0.60 (95%-CI 0.48-0.70) in the control group, and the difference between the two groups was statistically significant (p = 0.005). CONCLUSION: This pilot study shows that disease-centred advance directives help physicians understand their NSCLC patients' wishes more precisely and make treatment choices according to these wishes. TRIAL REGISTRATION: The study is registered at the German Clinical Trial Register (no. DRKS00017580, registration date 27/08/2019).

Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany.

BACKGROUND: Palliative sedation has become widely accepted as a method to alleviate refractory symptoms in terminally ill patients. Controversies regarding this topic especially concern the use of palliative sedation for psychological symptoms, the use in patients who are not imminently dying and the simultaneous withdrawal of life-sustaining measures. Amyotrophic lateral sclerosis (ALS) is characterized by symptoms including muscle weakness, dysphagia, dysarthria, muscle spasms and progressive respiratory insufficiency. Due to these characteristic symptoms, palliative sedation might be considered to be necessary to alleviate refractory suffering in ALS patients. However, palliative sedation in ALS is only rarely discussed in current medical literature and guidelines. METHODS: A questionnaire survey was conducted among neurologists and palliative care practitioners in Germany. The participants were asked to evaluate the use of palliative sedation in different situations. RESULTS: Two hundred and ninety-six completed questionnaires were analyzed. The results suggest high levels of support for the use of palliative sedation in ALS patients. 42% of the participants stated that they had already used palliative sedation in the treatment of ALS patients. Acceptance of palliative sedation was higher in case of physical symptoms than in case of psychological symptoms. Refusal of artificial nutrition did not lead to a lower acceptance of palliative sedation. Doctors with specialist training in palliative care had already used palliative sedation in ALS patients more often and they were more likely to accept palliative sedation in different situations than the participants without a background in palliative care. CONCLUSION: Our survey showed that palliative sedation in ALS is widely accepted by the attending doctors. In case of psychological symptoms, palliative sedation is looked at with more concern than in case of physical symptoms. The refusal of artificial nutrition does not result in a decreased acceptance of palliative sedation. Doctors with specialist training in palliative care are more likely to approve of palliative sedation in ALS.

[What (abdominal) surgeons must know about aspects of autonomic decisions with respect to self-determination, advance healthcare directives and suicide]. / Was müssen (Viszeral­)Chirurg*innen von Aspekten autonomer Entscheidung hinsichtlich Selbstbestimmung, Patient*innenverfügung und Suizid wissen.

The right of patients to self-determination has become increasingly important in recent decades. In clinical practice, it finds concrete expression in the concept of informed consent, according to which medical interventions outside of emergency situations are only permissible with the consent of the informed patient. In the event that the patient later becomes incapable of giving consent, it is possible to document the patient's own treatment wishes in a living will or to appoint a trusted person as a proxy. The right to self-determination reaches its limits where the patient demands medical measures for which there is no medical indication, which are prohibited by law or which contradict the physician's conscience. The latter applies to physician-assisted suicide, which is legally permissible but which physicians cannot be obliged to perform.

Antipsychotic-Related Fatal Poisoning, England and Wales, 1993-2019: The Impact of Second-Generation Antipsychotics.

BACKGROUND: Deaths from antipsychotic (AP) poisoning have increased in England and Wales despite restriction of the use of thioridazine in 2000. METHODS: We analyzed data from the Office for National Statistics drug-related death database, England and Wales, 1993-2019, to investigate fatal AP poisoning. RESULTS: There were 2286 deaths (62% male patients). Annual numbers of intentional AP-related fatal poisonings (suicides) were relatively stable (1993, 35; 2019, 44; median, 44; range, 30-60). Intentional overdose deaths involving clozapine (96 male, 25 female) increased from 1 in 1994 to 5 in 2003 and have since remained relatively constant (median, 6; range, 3-10 per annum). Unintentional second-generation AP-related fatal poisonings have increased steadily since 1998, featuring in 828 (74%) of all unintentional, AP-related fatal poisonings in the period studied (2019, 89%). There were 181 unintentional clozapine-related deaths, (107 [59%] alone without other drugs ± alcohol) as compared with 291 quetiapine-related deaths (86 [30%] alone without other drugs ± alcohol) and 314 unintentional olanzapine-related deaths (77 [25%] alone without other drugs ± alcohol). Some 75% of all unintentional clozapine- and olanzapine-related deaths were of male patients (78% and 73%, respectively) as compared with 58% of unintentional quetiapine-related fatal poisonings. Clozapine now features prominently in intentional and in unintentional AP-related fatal poisoning in England and Wales. Deaths of male patients predominate in both categories. There were also 77 and 86 deaths attributed to unintentional poisoning with olanzapine and with quetiapine, respectively, in the absence of other drugs. CONCLUSIONS: More effort is needed to prevent unintentional deaths not only from clozapine but also from olanzapine and quetiapine.

Clinical Ethics Consultation in Neurology - a case series.

BACKGROUND: The concept of clinical ethics consultation (CECs) was implemented to provide support in ethical controversies in clinical settings and are offered in at least every second hospital in Germany. Neurological disorders often require complex decision-making. The aims of this study were to determine which situations lead to CEC in neurology and to investigate the influence of the individual patient's wishes on the recommendation. METHODS: Standardised CEC protocols in the years 2011 to 2017 at the University Hospitals of Goettingen and Jena were retrospectively surveyed. The contents were categorised along existing protocol templates of CEC scenarios and subsequently paraphrased and reduced to significant meanings. RESULTS: 27 CEC scenarios which were facilitated by various professional disciplines were reviewed. Stroke was the most frequent underlying condition. Nearly all patients were not able to consent. Mostly, the relatives acted as representatives or health advocates. In 67 % of cases, a sense of conflict triggered a CEC; in 33 % a sense of uncertainty was the reason for the CEC request. In 21 CEC scenarios, a recommendation was reached in consensus with all parties involved. In 59 % of cases, a decision was made to continue medical therapy. In seven cases, the patient's wishes led to a limitation of therapy, while in just two cases this decision was made primarily relying on the patient's best interest. In only 13 % of cases, a valid advance directive led to respective therapeutic consequences. CONCLUSIONS: CEC is feasible for consensus-finding not only in conflicts, but also in situations of therapeutic uncertainty in neurology. There is a special importance of the patient's wishes in decision-making in neurology. However, only in a few cases were advance directives precise and specific enough to have sufficient and decisive weight in therapeutic decision-making.

[Importance of electroconvulsive therapy (ECT) in forensic psychiatry]. / Stellenwert der Elektrokonvulsionstherapie (EKT) in der forensischen Psychiatrie.

BACKGROUND AND OBJECTIVE: Electroconvulsive therapy (ECT) is recommended in guidelines for the treatment of severe affective and psychotic disorders that also can be found in patients in forensic psychiatric commitment; however, there are no systematically collected data concerning the use of ECT in forensic psychiatry. The aim of this study was to investigate the current state and estimated need for ECT in forensic psychiatry in Germany. MATERIAL AND METHODS: A questionnaire was designed consisting of questions about the current practice and estimated need for ECT in this population. This questionnaire was sent electronically (and by post if needed) to the forensic psychiatric hospitals in Germany. RESULTS: We received replies from 52 hospitals (66%) and 29 of these hospitals stated that they were capable of treating patients with ECT. An indication for ECT treatment was seen in 3.4% of all detained patients across all forensic hospitals. In 1 year (2018) 32 ECT treatment courses were carried out with on average good effectiveness and a mean clinical global impressions (CGI) scale of 2.32. The most frequent reason for not using ECT was lack of structural requirements. Approximately one third of the forensic psychiatric hospitals stated that there was a medium or even high need for ECT in forensic psychiatry. CONCLUSION: The use of ECT in German forensic psychiatry is currently very limited. It is striking that the number of applied ECT treatments is eight times lower in comparison to the frequency of indications. Nevertheless, approximately two thirds of the forensic hospitals stated a medium or high need for ECT, which seems to suggest a shortage of ECT in the treatment of forensic psychiatry patients.

The ethical debate over child priority in post-mortem organ allocation: A scoping review and practical-ethical outlook.

BACKGROUND: Organ allocation guidelines in many countries give children relative priority, but the normative justification of child priority is seldom articulated. METHODOLOGY: We conducted a scoping review of the recent international literature (2013-2019) to identify moral positions and normative frameworks to justify or criticize pediatric priority in all kind of organ allocation. We identified 11 relevant papers. RESULTS: Our analysis revealed a complex juxtaposition of pro and contra argumentations along three main normative lines: a) equal treatment of each individual, b) individual benefit, and c) social benefit and the public good. The general type of argument can be found independent of the organ allocated. For each of these three lines we identified and categorized two types of argumentations: those in favor and those critical of the priority rule. Additionally, we discuss a problematic issue that has not yet been mentioned in the literature, namely the effects of age thresholds related to child-priority rules in organ allocation. We illustrate this problem with an analysis of selected German data with allocated postmortal kidneys and livers. These data show non-normal distributions of organ transplantations and waiting times for patients between the ages of 16 and 19. DISCUSSION: Our overview serves as a matrix to reconsider existing guideline policy. The review can assist policy makers or experts on organ allocation committees in increasing the transparency of child priority rules, in explaining their justifications, and in reforming existing guidelines.

Electroconvulsive Therapy in Incapable Patients Refusing Treatment: Prevalence, Effectiveness, and Associated Factors.

OBJECTIVES: Severe psychiatric disorders may be accompanied by life-threatening conditions, lack of insight, and treatment refusal. Involuntary treatment may be indicated in patients who lack capacity to consent and refuse treatment. In this context, there is a lack of systematic data regarding the use of electroconvulsive therapy (ECT) in Germany. METHODS: A questionnaire with 25 items comprising quantitative and qualitative data was sent to all psychiatric hospitals in Germany that perform ECT. Cases of ECT treatment in incapable patients refusing therapy were identified retrospectively in a 12-month period. RESULTS: Fifty-three hospitals completed the questionnaire, and 15 cases of ECT in incapable and refusing patients were reported. A marked clinical response was observed in 14 patients. Capacity to consent was restored in 11 patients. In contrast to this particularly good effectiveness, psychiatrists' attitudes revealed a widespread lack of experience as well as reservations and uncertainties regarding the use of ECT against the patient's wishes. CONCLUSIONS: In line with other recent publications, our data suggest a very good benefit-to-risk ratio for ECT in incapable patients refusing the treatment, while at the same time the provision of ECT in such patients is rare in Germany. In light of the scarcity of treatment alternatives and the possible consequences of a refusal to perform ECT in life-threatening conditions, a general rejection of involuntary ECT does not seem ethically appropriate.

Psychiatrists' views on different types of advance statements in mental health care in Germany.

BACKGROUND: Advance directives enable patients to ensure that treatment decisions will be based on their autonomous will, even if they are incompetent at the time at which the treatment decision is taken. Although psychiatric advance directives are legally binding in Germany and their benefits are widely acknowledged, they are still infrequently used in German psychiatric practice. AIMS: The aim of this study is to assess psychiatrists' attitudes toward the use of advance statements in mental health care. METHODS: A postal survey of psychiatrists in Germany was carried out to examine their views on advance statements in psychiatry. The survey addressed psychiatrists' experiences of and attitudes toward different types of advance statements, including psychiatric advance statements written by patients without any specific assistance, and joint crisis plans ( 'Behandlungsvereinbarungen'), where involvement of the clinical team is required. A total of 396 responded. RESULTS: Results suggest that generally speaking, respondents held favorable views on joint crisis plans for mental health care. In all, 80.7% of participants agreed that more frequent use of joint crisis plans in clinical practice would be desirable. However, clinicians' attitudes differ largely depending on the type of advance statement. Implications for the use of advance statements in psychiatry are discussed. CONCLUSION: The findings suggest that increasing the support structures available to train physicians and inform patients could lead to increased adoption of advance statements.

[Between autonomy and coercion: compulsory treatment in psychiatry from an ethical perspective]. / Zwischen Selbstbestimmung und Zwang: Zwangsbehandlung in der Psychiatrie aus ethischer Perspektive.

The actual decision of the German Supreme Court fueled the old debate of the moral and legal status of compulsory treatment in psychiatry in Germany. This article sheds a light on the background of this debate and reflects on possible justifications for involuntary treatment of mentally ill patients. Furthermore it will examine the significance of psychiatric patients' advance directives and joint crisis plans in the context of medical compulsory treatment and will offer recommendations on an ethical responsible way of dealing with compulsory treatment in German psychiatric practice.

Joint crisis plans and psychiatric advance directives in German psychiatric practice.

This study explores the attitude of German psychiatrists in leading positions towards joint crisis plans and psychiatric advance directives. This topic was examined by contacting 473 medical directors of German psychiatric hospitals and departments. They were asked to complete a questionnaire developed by us. That form contained questions about the incidence and acceptance of joint crisis plans and psychiatric advance directives and previous experiences with them. 108 medical directors of psychiatric hospitals and departments responded (response rate: 22.8%). Their answers demonstrate that in their hospitals these documents are rarely used. Among the respondents, joint crisis plans are more accepted than psychiatric advance directives. There is a certain uncertainty when dealing with these instruments. Our main conclusion is that German psychiatry needs an intensified discussion on the use of instruments for patients to constitute procedures for future critical psychiatric events. For this purpose it will be helpful to collect more empirical data. Furthermore, the proposal of joint crisis plans in psychiatric hospitals and departments should be discussed as well as the possibility of consulting an expert during the preparation of a psychiatric advance directive.

Advance directives: prevalence and attitudes of cancer patients receiving radiotherapy.

PURPOSE: Advance directives (AD) are becoming increasingly widespread. We examine the prevalence of AD and the factors associated with AD in tumor patients during radiotherapy. METHODS: A standardized questionnaire was handed out to all tumor patients on 9 random days with an interval of at least 12 weeks. The data were analyzed in a bivariate and multivariate way. RESULTS: Of 1,208 questionnaires, 658 were completed and returned (54.5%). Of respondents, 23.6% had already signed an AD, 53.3% thought they were likely to sign an AD, 9.0% did not want to sign an AD, and 4.9% were not familiar with advance directives. Patients who have signed an AD and those who are likely to sign one think that ADs facilitate the physician's decision-making process (97.7% cf. 94.5%) and that they ease the burden on relatives (98.5% cf. 98.8%). Regardless of an AD having been signed, every second respondent was of the opinion that AD facilitates consultations rather than serving as a directive (55.1% cf. 57.3%). Patients likely to sign an AD are significantly younger compared to those unlikely to do so and have suffered from their tumor disease for a shorter period of time. CONCLUSIONS: Of advance directives is widely accepted among the tumor patients surveyed. Advanced directives are not exclusively seen as instruments for surrogate decision making, but also as mediums to improve communication. Training of physicians and additional offers for patients could increase the actual number of ADs and perhaps improve physicians and relatives understanding of patients needs and wishes.

Paramedics experiences and expectations concerning advance directives: a prospective, questionnaire-based, bi-centre study.

BACKGROUND: Advance directives and palliative crisis cards are means by which palliative care patients can exert their autonomy in end-of-life decisions. AIM: To examine paramedics' attitudes towards advance directives and end-of-life care. DESIGN: Questionnaire-based investigation using a self-administered survey instrument. SETTING/PARTICIPANTS: Paramedics of two cities (Hamburg and Goettingen, Germany) were included. Participants were questioned as to (1) their attitudes about advance directives, (2) their clinical experiences in connection with end-of-life situations (e.g. resuscitation), (3) their suggestions in regard to advance directives, 'Do not attempt resuscitation' orders and palliative crisis cards. RESULTS: Questionnaires were returned by 728 paramedics (response rate: 81%). The majority of paramedics (71%) had dealt with advance directives and end-of-life decisions in emergency situations. Most participants (84%) found that cardiopulmonary resuscitation in end-of-life patients is not useful and 75% stated that they would withhold cardiopulmonary resuscitation in the case of legal possibility. Participants also mentioned that more extensive discussion of legal aspects concerning advance directives should be included in paramedic training curricula. They suggested that palliative crisis cards should be integrated into end-of-life care. CONCLUSIONS: Decision making in prehospital end-of-life care is a challenge for all paramedics. The present investigation demonstrates that a dialogue bridging emergency medical and palliative care issues is necessary. The paramedics indicated that improved guidelines on end-of-life decisions and the termination of cardiopulmonary resuscitation in palliative care patients may be essential. Participants do not feel adequately trained in end-of-life care and the content of advance directives. Other recent studies have also demonstrated that there is a need for training curricula in end-of-life care for paramedics.

Implementing clinical ethics in German hospitals: content, didactics and evaluation of a nationwide postgraduate training programme.

The Hannover qualifying programme 'ethics consultation in hospitals', conducted by a four-institution cooperation partnership, is an interdisciplinary, scientifically based programme for healthcare professionals interested in ethics consultation services and is widely acknowledged by hospital managements and healthcare professionals. It is unique concerning its content, scope and teaching format. With its basic and advanced modules it has provided training and education for 367 healthcare professionals with 570 participations since 2003 (until February 2010). One characteristic feature is its attractiveness for health professionals from different backgrounds. Internationally, the Hannover programme is one of the few schedules with both academics and non-academics as target groups and a high participation rate of physicians. The concept of the Hannover programme is in great demand, and its schedule is continuously optimised through evaluation. The goals of enabling healthcare professionals from different professional backgrounds to define and reflect ethical problems, to facilitate and support the process of decision-making and to work out structures for their own institutions seem to have been achieved. However, in order to obtain effective and sustainable results, participation in the programme should be supplemented regularly by in-house training sessions or individual expert consultations. Future challenges include new thematic courses and providing a network for former participants, especially when they come from non-academic hospitals. The network is a reasonable platform to discuss participants' experiences, successes and pitfalls. A further task will be research on how the programme's concept can support the sustainability of ethics structures in the various institutions.