As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
Proper decision-making is one of the most important capabilities of an organization. Therefore, it is important to have a clear understanding and overview of the decisions an organization makes. A means to understanding and modeling decisions is the Decision Model and Notation (DMN) standard published by the Object Management Group in 2015. In this standard, it is possible to design and specify how a decision should be taken. However, DMN lacks elements to specify the actors that fulfil different roles in the decision-making process as well as not taking into account the autonomy of machines. In this paper, we re-address and-present our earlier work [1] that focuses on the construction of a framework that takes into account different roles in the decision-making process, and also includes the extent of the autonomy when machines are involved in the decision-making processes. Yet, we extended our previous research with more detailed discussion of the related literature, running cases, and results, which provides a grounded basis from which further research on the governance of (semi) automated decision-making can be conducted. The contributions of this paper are twofold; 1) a framework that combines both autonomy and separation of concerns aspects for decision-making in practice while 2) the proposed theory forms a grounded argument to enrich the current DMN standard.
Introduction: Shared decision-making is considered to be a key aspect of woman-centered care and a strategy to improve communication, respect, and satisfaction. This scoping review identified studies that used a shared decision-making support strategy as the primary intervention in the context of perinatal care. Methods: A literature search of PubMed, CINAHL, Cochrane Library, PsycINFO, and SCOPUS databases was completed for English-language studies conducted from January 2000 through November 2019 that examined the impact of a shared decision-making support strategy on a perinatal decision (such as choice of mode of birth after prior cesarean birth). Studies that only examined the use of a decision aid were excluded. Nine studies met inclusion criteria and were examined for the nature of the shared decision-making intervention as well as outcome measures such as decisional evaluation, including decisional conflict, decisional regret, and certainty. Results: The 9 included studies were heterogeneous with regard to shared decision-making interventions and measured outcomes and were performed in different countries and in a variety of perinatal situations, such as women facing the choice of mode of birth after prior cesarean birth. The impact of a shared decision-making intervention on women’s perception of shared decision-making and on their experiences of the decision-making process were mixed. There may be a decrease in decisional conflict and regret related to feeling informed, but no change in decisional certainty. Discussion: Despite the call to increase the use of shared decision-making in perinatal care, there are few studies that have examined the effects of a shared decision-making support strategy. Further studies that include antepartum and intrapartum settings, which include common perinatal decisions such as induction of labor, are needed. In addition, clear guidance and strategies for successfully integrating shared decision-making and practice recommendations would help women and health care providers navigate these complex decisions.
