Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?

BACKGROUND: Healthcare legislation in European countries is similar in many respects. Most importantly, the framework of informed consent determines that physicians have the duty to provide detailed information about available therapeutic options and that patients have the right to refuse measures that contradict their personal values. However, when it comes to end-of-life decision-making a number of differences exist in the more specific regulations of individual countries. These differences and how they might nevertheless impact patient's choices will be addressed in the current debate. MAIN TEXT: In this article we show how the legal and medical frameworks of Germany, Poland and Sweden differ with regard to end-of-life decisions for patients with a fatal progressive disease. Taking Amyotrophic Lateral Sclerosis (ALS) as an example, we systematically compare clinical guidelines and healthcare law, pointing out the country-specific differences most relevant for existential decision-making. A fictional case report discusses the implications of these differences for a patient with ALS living in either of the three countries. Patients with ALS in Germany, Poland and Sweden are confronted with a similar spectrum of treatment options. However, the analysis of the normative frameworks shows that the conditions for making existential decisions differ considerably in Germany, Poland and Sweden. Specifically, these differences concern (1) the legal status of advance directives, (2) the conditions under which life-sustaining therapies are started or withheld, and (3) the legal regulations on assisted dying. CONCLUSION: According to the presented data, regulations of terminating life-sustaining treatments and the framework of "informed consent" are quite differently understood and implemented in the legal setting of the three countries. It is possible, and even likely, that these differences in the legal and medical frameworks have a considerable influence on existential decisions of patients with ALS.

The attitudes of mental health professionals towards patients' desire for children.

BACKGROUND: When a patient with a serious mental illness expresses a desire for children, mental health professionals are faced with an ethical dilemma. To date, little research has been conducted into their strategies for dealing with these issues. METHODS: Seven focus groups with a total of 49 participants from all professional groups active in mental health (nurses, psychologists, social workers and psychiatrists) were conducted in a 330-bed psychiatric hospital. Group discussions were transcribed verbatim and analysed by the documentary method described by Bohnsack. RESULTS: Mental health professionals did not feel that their patients' desire for children was as important in daily practice as were parenting issues. When discussing the desire for children on the part of patients, the following themes emerged: "the patient's own decision", "neutrality", "the patient's well-being", "issues affecting the children of mentally ill parents" and "appropriate parenthood". In order to cope with what they perceived as conflicting norms, mental health professionals developed the following (discursive) strategies: "subordination of child welfare", "de-professionalisation", "giving rational advice" and "resignation". CONCLUSIONS: The theme of "reproductive autonomy" dominated mental health professionals' discourse on the desire for children among psychiatric patients. "Reproductive autonomy" stood in conflict with another important theme (patient's children). Treating reproductive issues as taboo is the result of the gap between MHPs' perceptions of (conflicting) norms when dealing with a patient's desire for children and the limited opportunities to cope with them appropriately.In order to support both patients with a desire for children and mental health professionals who are charged with providing counselling for such patients, there is a need to encourage ethical reflection and to focus on clinical recommendations in this important area.

Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications.

OBJECTIVE: Quantitative analysis of decision-making on therapeutic options in different sociocultural context in amyotrophic lateral sclerosis (ALS). METHODS: ALS patients (n = 244) were consecutively recruited in Germany (n = 83), Poland (n = 83), and Sweden (n = 78) in a prospective cross-cultural study ( www.NEEDSinALS.com ). They were interviewed on preferences for therapeutic techniques including invasive (IV) and non-invasive ventilation (NIV), as well as percutaneous endoscopic gastrostomy (PEG) and on hypothetical termination of these using quantitative questions. Using standardized questionnaires, religiousness, personal values, quality of life, and depressiveness were assessed. RESULTS: NIV was most frequently used in Germany and PEG in Sweden. Swedish patients were most liberal on initiation and termination of PEG, NIV and IV. Polish patients were mostly undecided and were least likely to consider discontinuing supportive management. Current use was partly associated with age, gender and state of physical function; also, financial support explained some variance. Future preferences on therapeutic options from the patient's perspective were also closely associated with cultural factors. The more oriented towards traditional and conservative values, the less likely patients were to decide for invasive therapeutic devices (IV, PEG), the least likely to have ideations to discontinue any device and the more likely to have an undecided attitude. CONCLUSIONS: Current use of therapeutic options is determined by medical condition in analogy to clinical guidelines. For future considerations, other factors such as cultural background are crucial, yielding hurdles to be regarded in the implementation of advanced directives in a multicultural environment.

[Dealing with Parenthood among Mental Health Service Users During Inpatient Treatment: Mental Health Professionals' Perspectives to Barriers and Facilitators]. / Umgang mit Elternschaft psychiatrischer Patienten in der stationären Behandlung: Möglichkeiten und Grenzen aus subjektiver Sicht psychiatrischer Fachkräfte.

Study aims To gain insight into mental health professionals' subjective perceptions of parenthood among psychiatric patients during inpatient treatment. Methods 31 problem-centered semi-structured interviews with psychiatric professionals were conducted and analyzed by content analysis methods. Results From participants' perspectives, parenthood issues are mainly relevant during hospital admission when child care has to be secured. Participants reported the following barriers: sickness aspects, fears of patients, lack of time and professional knowledge on parenthood issues in clinical care. Discussion Structural barriers which hinder consideration of parenthood issues beyond hospital admission should be reduced.

[Mental Health Professionals' Perspectives Towards Desire for Children and Family Planning Among Psychiatric Patients - Results of a Qualitative Study]. / Kinderwunsch und Familienplanung psychiatrischer PatientInnen aus Sicht der Fachkräfte ­ Ergebnisse einer qualitativen Studie.

Study aims: Analysis of mental health professionals' attitudes to reproductive issues among psychiatric patients. Method: 31 problem-centered semi-structured interviews with psychiatric professionals were conducted and analyzed by content analysis methods. Results: Outside of psychotherapeutic treatment the desire for children is generally assessed as less important in the context of mental health care, it is often limited to effective birth control with regard to drug treatment. Mental health professionals perceive moral concerns, lack of expertise among professionals and individual doubts as barriers when dealing with reproductive issues. Discussion: In order to meet psychiatric patients' reproductive needs, perceptions of barriers among mental health professionals in dealing with reproductive issues should be reflected and discussed. Recommendations could support professionals and help ensure adequate support for psychiatric patients.

Sexually transmitted diseases: reflections on metaphors and ethics.

Sexually transmitted diseases (STDs) are probably the most tabooed diseases we know. The taboos and the related stigmata shape patients reality and influence significantly health care policies, medical research, and actual problems in medical ethics. To better understand these complex influences of ancient but still powerful taboos, related metaphors associated with illness and disease are analyzed according to their historical development and actual impact on society. It becomes obvious that research and health care policies cannot be satisfyingly successful in helping people affected by STDs as long as they do not take the mechanisms of taboos and associated metaphors into account.