Amyotrophic lateral sclerosis (ALS) may be associated with the wish to hasten death (WTHD). We aimed to determine the prevalence and stability of WTHD and end-of-life attitudes in ALS patients, identify predictive factors, and explore communication about WTHD. We conducted a prospective questionnaire study among patients and their primary caregivers attending ALS clinics in Germany and Switzerland. We enrolled 66 patients and 62 caregivers. Half of the patients could imagine asking for assisted suicide or euthanasia; 14% expressed a current WTHD at the baseline survey. While 75% were in favour of non-invasive ventilation, only 55% and 27% were in favour of percutaneous endoscopic gastrostomy and invasive ventilation, respectively. These attitudes were stable over 13 months. The WTHD was predicted by depression, anxiety, loneliness, perceiving to be a burden to others, and a low quality of life (all p < 0.05). Lower religiosity predicted whether patients could imagine assisted suicide or euthanasia. Two-thirds of patients had communicated their WTHD to relatives; no-one talked to the physician about it, yet half of them would like to do so. In conclusion, physicians should consider proactively asking for WTHD, and be sensitive towards neglected psychosocial problems and psychiatric comorbidity.

Objectives: In Switzerland, assisted suicide (AS) is legal, provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest. However, in this particular setting nothing is known about patients’ and their caregivers’ attitudes toward AS and life-prolonging measures. Methods: Data was retrieved through validated questionnaires and personal interviews in 33 patients and their caregivers covering the following domains: physical function according to the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), demographic data, quality of life, anxiety, depression, social situation, spirituality, burden of disease, life-prolonging, and life-shortening acts. Results: In patients the median time after diagnosis was 9 months (2–90) and the median Amyotrophic Lateral Sclerosis (ALS) FRS-R score was 37 (22–48). The majority of patients (94%; n = 31) had no desire to hasten death. Patients’ and caregivers’ attitudes toward Percutaneous Endoscopic Gastrostomy (PEG) and Non-Invasive Ventilation (NIV) differed. Significantly more patients than caregivers (21.2 versus 3.1%) stated that they were against NIV (p = 0.049) and against PEG (27.3 versus 3.1%; p = 0.031). Answers regarding tracheotomy were not significantly different (p = 0.139). Caregivers scored significantly higher levels of “suffering” (p = 0.007), “loneliness” (p = 0.006), and “emotional distress” answering the questionnaires (p < 0.001). Suffering (p < 0.026) and loneliness (p < 0.016) were related to the score of the Hospital Anxiety and Depression Scale (HADS) in patients. Conclusion: A liberal legal setting does not necessarily promote the wish for AS. However, the desire to discuss AS is prevalent in ALS patients. There is a higher level of suffering and loneliness on the caregivers’ side. A longitudinal study is warranted.

The German Society for the Study of Pain has formed an interdisciplinary committee to answer urgent ethical questions on the diagnosis and treatment of pain and to give an ethical orientation on the care of pain and palliative patients. The treatment of pain is a fundamental objective of medicine. Competent and adequate relief of pain in all stages of life is a basic characteristic of a humane medicine oriented to the quality and meaning of life for people. However, there are substantial deficits in all areas, especially in the knowledge of physicians and patients, in training and further education, diagnosis and therapy. Freedom from pain is a substantial element of quality of life. A central duty of all physicians is an adequate diagnosis and treatment of acute pain and thereby the prophylaxis of chronic pain. If pain persists over a longer period of time, it loses the warning function and becomes taken for granted. Alterations, disabilities and limitations of the physical, psychic and social levels are the consequences. For these patients an interdisciplinary approach is necessary by which various medical disciplines, psychologists and physiotherapists are involved and all collaborate on the diagnosis and therapy of pain. All patients have the right to sufficient and individually tailored treatment of pain. Special attention must be paid to vulnerable patient groups, such as newborns, children and adolescents, as well as aged and mentally retarded patients. For cancer patients pain relief of their tumor pain is totally in the forefront. Indications of "unbearable pain" must not lead to resignation or even be seen as an argument for legalization of "death on request". The nursing of terminally ill patients necessitates a special measure not only of clinical, but also ethical competence, communication and multiprofessional collaboration. The modern options for palliative care are real alternatives to demands for legalization of "death on request". Physician-assisted suicide does not belong to the scope of functions of palliative medicine. The basic constitutional law makes an appropriate treatment of pain obligatory. Neglect of pain treatment fulfils the elements of criminal bodily harm. As a consequence, there is a legal right to a comprehensive pain diagnosis and a pain treatment corresponding to the appropriate standard. The state is obliged to provide the legal, social and financial prerequisites for an adequate treatment of pain. Continuous efforts in research are necessary to fill the existing gaps in our knowledge. The transfer between basic research and clinical application of pain therapy must be urgently improved. Of central importance for the German Pain Society are therefore: Improvement of training and further education in pain therapy. Chronic pain must be accepted and coded as an autonomous sickness. Graded structures for care of pain patients must be realized. Interdisciplinary structures of care must be made available to patients with chronic pain. Palliative medical care is a basic right of all...

Molecular Systems Engineering (MSE) is a paradigm shift in both engineering and life sciences. While the field is still in its infancy the perspectives of MSE in revolutionising technology is promising. MSE will offer a wide range of applications in clinical, biotechnological and engineering fields while simultaneously posing serious questions on the ethical and societal aspects of such technology. The moral and societal aspects of MSE need systematic investigation from scientific and social perspectives. In a democratic setting, the societal outcomes of MSE's cutting-edge technology need to be consulted and influenced by society itself. For this purpose MSE needs inclusive public engagement strategies that bring together the public, ethicists, scientists and policy makers for optimum flow of information that maximizes the impact of public engagement. In this report we present an MSE consortium and its ethics framework for establishing a proactive approach in the study of the ethics of MSE technology. Keywords: Art of molecule · Ethics · Molecular systems engineering · Proactive ethics · Public engagement · Society Molecular Systems EngineeringThe origin of life, i.e. how early life form(s) appeared on earth, is still a mystery not only for science but also for philosophy. In 2014, scientists simulated an extra-terrestrial high-power strike that triggered the synthesis of nucleobases -the ingredients of life -from formamide. [1] Formation of nucleobases from formamide about 4 billion years ago is one of the possible scenarios that could explain the sudden emergence of RNA (ribonucleic acid) as the earliest precursor of life. Deciphering the processes of abiogenesis potentially enables scientists to write their own recipe of genetic code and re-create exotic life forms as not seen before. The emergence of interdisciplinary fields such as synthetic biology, together with systems approaches in discovery science (e.g. systems chemistry and systems biology) are revolutionizing our traditional attitude in the life sciences and open, as yet unprecedented, possibilities to develop novel applications in medical science, pharmaceutical and agricultural industries.Synthetic biology takes advantage of multiple problem-solving strategies: it permits us to determine a minimal gene setting that constitutes a living cellular form (top-down approach), and to construct synthetic biological systems, protocells and living cells (bottom-up approach) with the ultimate goal: to redesign life. [2] Systems biology integrates this information into computational models and mathematical formulae that can describe the structure of the system. [3] The bottom-up approach of synthetic biology in the construction of living cells/organisms requires an in-depth understanding of chemical structure of molecules and their behaviour within dynamic chemo-biological networks. Systems chemistry assists synthetic biology by addressing the molecular prerequisites of self-replication and self-reproduction; systems chemistry contributes to synthet...

‘DU bist Radio’ (DBR) is an award winning [DBR has been awarded with the “Catholic Media Award of the German Bishops Conference, Prädikat WERTvoll” (2011), the Suisse “Media Prize Aargau/Solothurn” (2010), the German “Alternative Media Award” (2009) and was nominated for the “Prix Europa” (2009)] monthly radio format that goes on air on three Swiss radio stations. The purpose of this program which was first broadcast in 2009 is the development of a new media format which—without applying any journalistic (or other) filter and influence—conveys authenticity of expression amongst society’s most vulnerable fellow citizens such as patients, clients and the socially deprived. So-called marginal groups are encouraged to speak for themselves, as a possible paradigm case for encouraging the inclusion of patients’ and relatives’ “unfiltered” voices in general and in clinical ethics as well. Before handing over the microphone to the groups in focus, a team of journalists, educated in medical ethics, over a period of 4 days, teaches them on-site radio skills and craft. Once this task is completed and the actual production of the broadcast begins, the media crew does not exert any influence whatsoever on the content of the 1-h program. Thus, the final product is solely created and accounted for by the media-inexperienced participants, leading to unforeseen and often surprising results. It is discussed that the DBR approach of fostering authenticity of expression can serve as an enhancement to today’s respect and autonomy oriented field of medical ethics.