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.

[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.

[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.

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.

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.

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.

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.

[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.

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.

[Overtreatment in intensive care medicine-recognition, designation, and avoidance : Position paper of the Ethics Section of the DIVI and the Ethics section of the DGIIN]. / Überversorgung in der Intensivmedizin: erkennen, benennen, vermeiden : Positionspapier der Sektion Ethik der DIVI und der Sektion Ethik der DGIIN.

Despite social laws, overtreatment, undertreatment, and incorrect treatment are all present in the German health care system. Overtreatment denotes diagnostic and therapeutic measures that are not appropriate because they do not improve the patients' length or quality of life, cause more harm than benefit, and/or are not consented to by the patient. Overtreatment can result in considerable burden for patients, their families, the treating teams, and society. This position paper describes causes of overtreatment in intensive care medicine and makes specific recommendations to identify and prevent it. Recognition and avoidance of overtreatment in intensive care medicine requires measures on the micro-, meso- and macrolevels, especially the following: (1) frequent (re-)evaluation of the therapeutic goal within the treating team while taking the patient's will into consideration, while simultaneously attending to the patients and their families; (2) fostering a patient-centered corporate culture in the hospital, giving priority to high-quality patient care; (3) minimizing improper incentives in health care financing, supported by reform of the reimbursement system that is still based on diagnose-related groups; (4) strengthening of interprofessional co-operation via education and training; and (5) initiating and advancing a societal discourse on overtreatment.

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.

[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.

Decisions on the allocation of intensive care resources in the context of the COVID-19 pandemic : Clinical and ethical recommendations of DIVI, DGINA, DGAI, DGIIN, DGNI, DGP, DGP and AEM.

In view of the globally evolving coronavirus disease (COVID-19) pandemic, German hospitals rapidly expanded their intensive care capacities. However, it is possible that even with an optimal use of the increased resources, these will not suffice for all patients in need. Therefore, recommendations for the allocation of intensive care resources in the context of the COVID-19 pandemic have been developed by a multidisciplinary group of authors with the support of eight scientific medical societies. The recommendations for procedures and criteria for prioritisations in case of resource scarcity are based on scientific evidence, ethicolegal considerations and practical experience. Medical decisions must always be based on the need and the treatment preferences of the individual patient. In addition to this patient-centred approach, prioritisations in case of resource scarcity require a supraindividual perspective. In such situations, prioritisations should be based on the criterion of clinical prospect of success in order to minimize the number of preventable deaths due to resource scarcity and to avoid discrimination based on age, disabilities or social factors. The assessment of the clinical prospect of success should take into account the severity of the current illness, severe comorbidities and the patient's general health status prior to the current illness.

[Decisions on the allocation of intensive care resources in the context of the COVID-19 pandemic : Clinical and ethical recommendations of DIVI, DGINA, DGAI, DGIIN, DGNI, DGP, DGP and AEM. German version]. / Entscheidungen über die Zuteilung intensivmedizinischer Ressourcen im Kontext der COVID-19-Pandemie : Klinisch-ethische Empfehlungen der DIVI, der DGINA, der DGAI, der DGIIN, der DGNI, der DGP, der DGP und der AEM.

In view of the globally evolving Coronavirus Disease (COVID-19) pandemic, German hospitals rapidly expanded their intensive care capacities. However, it is possible that even with an optimal use of the increased resources, these will not suffice for all patients in need. Therefore, recommendations for the allocation of intensive care resources in the context of the COVID-19 pandemic have been developed by a multidisciplinary authors group with support of eight scientific medical societies. The recommendations for procedures and criteria for prioritisations in case of resource scarcity are based on scientific evidence, ethico-legal considerations and practical experience. Medical decisions must always be based on the need and the treatment preferences of the individual patient. In addition to this patient-centred approach, prioritisations in case of resource scarcity require a supra-individual perspective. In such situations, prioritisations should be based on the criterion of clinical prospect of success in order to minimize the number of preventable deaths due to resource scarcity and to avoid discrimination based on age, disabilities or social factors. Assessment of the clinical prospect of success should take into account the severity of the current illness, severe comorbidities and the patient's general health status prior to the current illness.

Philosophy of a "Good Death" in Small Animals and Consequences for Euthanasia in Animal Law and Veterinary Practice.

Moral stress is a major concern in veterinary practice. Often, it is associated with the challenges in end-of-life situations. Euthanasia, however, is also meant to bring relief to animal patients and their owners. The reasons for the moral strain euthanizing animals causes to professional veterinarians need to be further clarified. This article investigates "euthanasia" from a philosophical, legal, and practical perspective. After introducing relevant aspects of euthanasia in small animal practice, the term is analyzed from an ethical point of view. That includes both a broad and a narrow definition of "euthanasia" and underlying assumptions regarding different accounts of animal death and well-being. Then, legal and soft regulations are discussed with regard to the theoretical aspects and practical challenges, also including questions of personal morality. It is argued that the importance of ethical definitions and assumptions concerning euthanasia and their intertwinement with both law and practical challenges should not be neglected. The conclusion is that veterinarians should clarify the reasons for their potential discomfort and that they should be supported by improved decision-making tools, by implementation of theoretical and practical ethics in veterinary education, and by updated animal welfare legislation.

[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.