Ethisch begründet entscheiden in der Intensivmedizin.

The process recommendations of the Ethics Section of the German Interdisciplinary Association for Intensive Care and Emergency Medicine (DIVI) for ethically based decision-making in intensive care medicine are intended to create the framework for a structured procedure for seriously ill patients in intensive care. The processes require appropriate structures, e.g., for effective communication within the treatment team, with patients and relatives, legal representatives, as well as the availability of palliative medical expertise, ethical advisory committees and integrated psychosocial and spiritual care services. If the necessary competences and structures are not available in a facility, they can be consulted externally or by telemedicine if necessary. The present recommendations are based on an expert consensus and are not the result of a systematic review or a meta-analysis.

Dying like a dog: the convergence of concepts of a good death in human and veterinary medicine.

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.

[Ethics University on Regenerative Medicine - As an Instrument for the Development of Valid Public Opinions?] / Ethik-Universität zur Regenerativen Medizin ­ ein Instrument der fundierten Meinungsbildung für Laien?

OBJECTIVES: In 2016, we invited interested citizens to participate in the "ethics university on regenerative medicine" at Hannover Medical School. The present study analyses if and how this discursive and informative event inspired participants to form their own opinion on the issues at hand and to develop their general ethics literacy. METHODS: The "ethics university" was performed twice in 2016; each run consisted of four single consecutive events. Lectures were combined with interactive learning stations, and group discussions. Opinions and information level of all participants were surveyed by means of a postal questionnaire before and after the course to detect any changes of opinions and information levels; additionally, we surveyed participants' self-assessment. Participants of the second run were asked to form a waiting list control group to compare results from first run-participants. Furthermore, we conducted a content analysis of group discussions during the ethics university. RESULTS: Of 168 participants of both runs, 101 took part in the pre/post-survey. In addition, 30 questionnaires of the waiting list control group were analysed. Participants showed a higher level of information after the ethics university (changes between 0.75 and 1.93 points on a five-point scale). Between 50.5 and 66.0% of participants indicated that their opinion on different issues had become either more affirmative or more disapprobative as a result of attending the ethics university. On average, opinions were more positive after participation (between 0.44 and 1.0 points on a 5-point scale). Respondents in the waiting list control group showed no changes in opinion or information level. Participants themselves felt that they formed their opinions mainly on the basis of information they received in lectures, conversations with experts, interactive learning sessions, and written information. However, for many participants, interacting with other participants in the group discussions, as well as reflecting their own views was an important to forming informed opinions. CONCLUSION: Results of the evaluation show that participants were inspired to form their own opinions by the ethics university and to develop their ethics literacy (e. g. ability to reflect on normative questions). For future ethics universities, the group of participants should be as diverse as possible. In addition, interactive and discursive elements should be given a higher priority.

[Advance care planning: A qualitative investigation on patients' perspectives with advanced heart failure]. / Advance Care Planning: Eine qualitative Untersuchung zur Patientenperspektive bei fortgeschrittener Herzinsuffizienz.

BACKGROUND: The Hospice and Palliative Care Act (2015) promotes advance care planning (ACP) for patients in nursing homes, but chronically ill patients living at home can also benefit from ACP. OBJECTIVE: The aim of the study was to analyze the perception of ACP consultations by patients with advanced heart failure. MATERIAL AND METHODS: Patients (70 years and older) with advanced heart failure participated in two physician-led ACP consultations. Afterwards, two evaluative interviews were conducted with each participant. All consultations and interviews were analyzed by grounded theory considering the coding paradigm. Finally, an empirical grounded typology was conducted. RESULTS: A total of 30 patients participated in at least 1 ACP consultation, whereas 18 persons completed an interview. Successful ACP consultations depend not only on the discussion but also on the patient's requirements: willingness to discuss ACP, their illness, death and dying, and the experienced and preferred role in healthcare decision-making. From the patient's viewpoint ACP consultation can result in an advance directive, but an informed rejection of ACP or the creation of new assumptions for the future are also possible outcomes. CONCLUSION: The ACP discussions should to be aligned to patients' preferences in terms of communication and content. It is important to accept a rejection of dealing with ACP or conducting an advance directive. The patients' view needs to be integrated into future research.

[Determining Patient's Wishes and Preferences]. / Ermittlung des Patientenwillens.

It is legally required to determine and respect patient preferences and wishes as much as possible under the circumstances given. This also applies to emergency medicine and intensive care, particularly if a patient is unconscious and is not able to give his consent by him-/herself. According to German law, patients' explicit written statements (advance directive, living will) are mandatory. If no advance directive is available, or if the directive does not match the current medical circumstances, other (oral) statements of the individual patient have to be scrutinized to identify presumed wishes and establish presumed consent. Such wishes are equally binding. The article explicates the role of legal proxies (legal guardians, patient representatives) in determining patients' wishes. Detailed instructions and recommendations are given to medical staff on how to support legal representatives and next of kin with respect to shared decision-making and the process of determining patient preferences. This way, patient autonomy and patients' rights can be protected best.

[Legal Proxies in Medicine: Representatives and Legal Guardians]. / Juristische Stellvertreter in der Medizin: Bevollmächtigte und Betreuer.

Patients' rights need to be protected, particularly if the patient is unconscious or otherwise unable to consent. According to German law, a legal proxy is mandatory. Spouses and adult children do not automatically function as legal proxies. There are two alternative ways to become a legal proxy: a patient representative (Bevollmächtigter) is authorized by a written power of attorney (Vorsorgevollmacht), signed by the patient. If there is no power of attorney, a legal guardian (Betreuer) has to be appointed by a guardianship court. Both representatives and guardians are obliged to support the patient and are only allowed to make medical decisions, if the patient is currently unable to give his/her consent. The legal proxy is obligated to take into account advance directives, other patient preferences and presumed wishes. Recommendations and examples are given on how to apply these documents in medical practice and how to deal with legal representatives and guardians.

[A desperate family member. Suggestions for a successful interaction]. / Der verzweifelte Angehörige ­ Hinweise für eine gelingende Interaktion.

In everyday clinical practice relatives are often perceived as an additional burden, as a problem. Relatives appear, for example, to be overwhelmed, desperate, (co-)affected, demanding, or in some cases even (verbally) abusive. Alongside sympathetic and co-operative relatives, others are perceived as annoying and not very constructive. Such judgements are often made intuitively and without reflection and are therefore a permanent obstacle to further communication on the ward. This article is therefore intended to provide a deeper understanding of the situation of distressed relatives and to show ways of achieving a successful relationship with these relatives.

Coping and end-of-life decision-making in ALS: A qualitative interview study.

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.

[Time-limited trials (TLT) in the intensive care unit : Recommendations from the ethics section of the DIVI and the ethics section of the DGIIN]. / Zeitlich begrenzter Therapieversuch ("time-limited trial", TLT) auf der Intensivstation : Handlungsempfehlung der Sektion Ethik der DIVI und der Sektion Ethik der DGIIN.

The rise in intensive care treatment procedures is accompanied by an increase in the complexity of decisions regarding the selection, administration and duration of treatment measures. Whether a treatment goal is desirable in an individual case and the treatment plan required to achieve it is acceptable for the patient depends on the patient's preferences, values and life plans. There is often uncertainty as to whether a patient-centered treatment goal can be achieved. The use of a time-limited treatment trial (TLT) as a binding agreement between the intensive care unit (ICU) team and the patient or their legal representative on a treatment concept over a defined period of time in the ICU can be helpful to reduce uncertainties and to ensure the continuation of intensive care measures in the patients' best interest.

Inclusion of ethical issues in dementia guidelines: a thematic text analysis.

BACKGROUND: 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. METHODS AND FINDINGS: 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. CONCLUSIONS: 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.

The full spectrum of ethical issues in dementia care: systematic qualitative review.

BACKGROUND: Integrating ethical issues in dementia-specific training material, clinical guidelines and national strategy plans requires an unbiased awareness of all the relevant ethical issues. AIMS: To determine systematically and transparently the full spectrum of ethical issues in clinical dementia care. METHOD: We conducted a systematic review in Medline (restricted to English and German literature published between 2000 and 2011) and Google books (with no restrictions). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in clinical dementia care. RESULTS: The literature review retrieved 92 references that together mentioned a spectrum of 56 ethical issues in clinical dementia care. The spectrum was structured into seven major categories that consist of first- and second-order categories for ethical issues. CONCLUSIONS: The systematically derived spectrum of ethical issues in clinical dementia care presented in this paper can be used as training material for healthcare professionals, students and the public for raising awareness and understanding of the complexity of ethical issues in dementia care. It can also be used to identify ethical issues that should be addressed in dementia-specific training programmes, national strategy plans and clinical practice guidelines. Further research should evaluate whether this new genre of systematic reviews can be applied to the identification of ethical issues in other cognitive and somatic diseases. Also, the practical challenges in addressing ethical issues in training material, guidelines and policies need to be evaluated.

Evaluation of clinical ethics support services and its normativity.

Evaluation of clinical ethics support services (CESS) has attracted considerable interest in recent decades. However, few evaluation studies are explicit about normative presuppositions which underlie the goals and the research design of CESS evaluation. In this paper, we provide an account of normative premises of different approaches to CESS evaluation and argue that normativity should be a focus of considerations when designing and conducting evaluation research of CESS. In a first step, we present three different approaches to CESS evaluation from published literature. Next to a brief sketch of the well-established approaches of 'descriptive evaluation' and 'evaluation of outcomes', we will give a more detailed description of a third approach to evaluation-'reconstructing quality norms of CESS'-which is explicit about the normative presuppositions of its research (design). In the subsequent section, we will analyse the normative premises of each of the three approaches to CESS evaluation. We will conclude with a brief argument for more sensitivity towards the normativity of CESS and its evaluation research.

End-of-life decisions: A focus group study with German health professionals from human and veterinary medicine.

Introduction: 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. Methods: 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. Results: 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. Discussion: 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.

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review.

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.

Killing Kira, Letting Tom Go?-An Empirical Study on Intuitions Regarding End-of-Life Decisions in Companion Animals and Humans.

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.

[Dealing with coercion in intensive care medicine : Recommendations from the Ethics Section of the German Interdisciplinary Association for Intensive Care and Emergency Medicine (DIVI) in collaboration with the Ethics Section of the German Society for Internal Intensive Care and Emergency Medicine (DGIIN)]. / Umgang mit Zwang in der Intensivmedizin : Empfehlung der Sektion Ethik der Deutschen Interdisziplinären Vereinigung für Intensiv- und Notfallmedizin (DIVI) unter Mitarbeit der Sektion Ethik der Deutschen Gesellschaft für Internistische Intensivmedizin und Notfallmedizin (DGIIN).

The treatment situation in intensive care is characterised by a specific asymmetry in the relationship between patients and the team: Patients are particularly dependent on their environment and often show impaired consciousness and capacity to consent. This facilitates the use of coercion or enables and/or provokes it. The aim of this recommendation is to show ways to recognise patients with their wishes and needs and to integrate them into treatment concepts in the intensive care unit in order to reduce and avoid coercion whenever possible. The recommendation shows the variety of possible forms of coercion and discusses the moral standards to be considered in the ethical weighing process as well as legal conditions for justifying its use. It becomes obvious that treatment measures which may involve the use of coercion always require a careful and self-critical review of the measures in relation to the indication and the therapeutic goal. The recommendation's intention therefore is not to disapprove the use of coercion by interprofessional teams. Instead, it aims to contribute to a sensitive perception of coercion and to a critical and caring approach to formal and especially informal (indirect) coercion.

The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review.

BACKGROUND: Amyotrophic 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. OBJECTIVES: Our 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. METHODS: We 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. RESULTS: We 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. CONCLUSIONS: For 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.