This paper is a study of the decisions that researchers take during the execution of a research plan: their researcher discretion. Flexible research methods are generally seen as undesirable, and many methodologists urge to eliminate these so-called ‘researcher degrees of freedom’ from the research practice. However, what this looks like in practice is unclear. Based on twelve months of ethnographic fieldwork in two end-of-life research groups in which we observed research practice, conducted interviews, and collected documents, we explore when researchers (...) are required to make decisions, and what these decisions entail.An abductive analysis of this data showed that researchers are constantly required to further interpret research plans, indicating that there is no clear division between planning and plan execution. This discretion emerges either when a research protocol is underdetermined or overdetermined, in which case they need to operationalise or adapt the plans respectively. In addition, we found that many of these instances of researcher discretion are exercised implicitly. Within the research groups it was occasionally not clear which topic merited an active decision, or which action could retroactively be categorised as one.Our ethnographic study of research practice suggests that researcher discretion is an integral and inevitable aspect of research practice, as many elements of a research protocol will either need to be further operationalised or adapted during its execution. Moreover, it may be difficult for researchers to identify their own discretion, limiting their effectivity in transparency. (shrink)

Introduction Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. Methods To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content (...) analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Results Three themes emerged: (1) relationships among patient, physician and other professionals—the authority of the physician was more explicit in adapted versions; (2) patient rights and family position—adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Conclusions Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia. (shrink)

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP conversations. In (...) November 2020, seven databases were searched to select papers for inclusion. This search was updated in December 2021. The search strategy consisted of three tiers, intersected by using the Boolean term “AND,” and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics emerged clustered around two themes. This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences. (shrink)