People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to (...) improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of ‘good’ proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients’ values and preferences. (shrink)

Patients from religious minorities can face unique challenges reconciling their beliefs with the values that undergird Western Medical Ethics. This paper explores homologies between approaches of Orthodox Judaism and Islam to medical ethics, and how these religions’ moral codes differ from the prevailing ethos in medicine. Through analysis of religious and biomedical literature, this work examines how Jewish and Muslim religious observances affect decisions about genetic counseling, reproductive health, pediatric medicine, mental health, and end-of-life decisions. These traditions embrace a theocentric (...) rather than an autonomy-based ethics. Central to this conception is the view that life and the body are gifts from God rather than the individual and the primacy of community norms. These insights can help clinicians provide care that aligns Muslim and Jewish patients’ health goals with their religious beliefs and cultural values. Finally, dialogue in a medical context between these faith traditions provides an opportunity for rapprochement amidst geopolitical turmoil. (shrink)

Recently, the concept of expanded terminal sedation emerged to describe using sedation at the end of life in cases beyond the usual use. Using this sedation could be a stressful ethical encounter for healthcare providers. In this paper, we describe a case of a Muslim palliative care nurse who cared for a patient with cancer who requested expanded terminal sedation. The palliative care nurse described that his initial response to the expanded terminal sedation order was refusing to start the sedation (...) because he believed the patient was not terminally ill and was concerned about killing him, which is prohibited according to his religious beliefs. Further, the nurse perceived the patient’s psychological distress and his verbalization of wishing to die peacefully as a concealed request for euthanasia, especially since he was not imminently dying. Finally, the nurse reported being frustrated and uncertain about the care, especially since he did not receive appropriate psychological counseling from professional personnel. any case beyond the usual conditions for terminal sedation should be carefully examined, especially when nurses’ religious beliefs or moral values contradict it. If sedation should be administered, adequate preparation of healthcare providers should be arranged, including discussing with them the goals of care and the rationale for sedation before and after initiating it. Generating a policy for conscientious objections, allowing nurses to express their own emotions and concerns in a supportive environment are suggested approaches to preserve their wellness. (shrink)

Background Physician-assisted suicide (PAS) and voluntary euthanasia remain highly debated topics in society, drawing attention due to their ethical, legal, and emotional complexities. Within this debate, the loss of a loved one through suicide may shape the attitudes of survivors, resulting in more or less favorable attitudes towards this topic. Aims This study aims to explore and compare the attitudes towards PAS and voluntary euthanasia in a population of suicide loss survivors and the general population, while also considering socio-demographic factors. (...) Methods A total of 529 participants, 168 of whom were survivors of suicide loss, completed an online questionnaire on their attitudes (NOBAS) and opinions (open response format) towards PAS and voluntary euthanasia, as well as regarding their legalization in Germany. The analysis consisted of both quantitative and qualitative components. Results The entire sample showed positive attitudes towards PAS and voluntary euthanasia in terminally ill persons. Participants were more divided in their attitudes towards PAS in the case of a mental health disorder. Individuals without experienced suicide loss were more liberal regarding legalization in Germany and were more likely to understand the wish for PAS. Survivors of suicide loss were mainly concerned about the consequences for relatives. However, differences between both groups are small. Discussion The experience of a loss by suicide influences attitudes towards PAS and voluntary euthanasia. Both groups showed an accepting attitude towards PAS and voluntary euthanasia, but also expressed concerns and fears regarding easy accessibility and consequences for grieving relatives. (shrink)