This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one’s euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again. Four themes were identified using thematic analyses: (1) Protecting the relationship from the impact of dementia; (2) Private domain as the primary setting to discuss euthanasia; (3) Implicit expectation to respect and agree with the euthanasia wish; (4) Experienced responsibilities of family regarding the euthanasia wish. Professionals should be aware of the position of family and the interrelatedness of the person’s concern for family happiness and families’ moral commitment to agree and support the wish.
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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.
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To identify ethical issues that interns encounter in their clinical education and thus build a more empirical basis for the required contents of the clinical ethics curriculum. The authors analyzed a total of 522 required case reports on ethical dilemmas experienced by interns from September 1995 to May 1999 at the medical school of Vrije Universiteit in Amsterdam. They identified four regularly described and numerous less frequently described topics. The interns addressed a wide range of ethical themes. In 45% of the cases, they mentioned disclosure or non-disclosure of information and informed consent; in 37%, medical decisions at the end of life; in 16%, medical failures; and in 9%, problems transferring patients from one caregiver to another. The interns also identified 27 themes linked to their unique position as interns and 19 themes related to specific types of patients. Based on self-reported experiences, the authors conclude that clinical ethics teachers should reflect on a multitude of dilemmas. Special expertise is required with respect to end-of-life decisions, truth telling, medical failures, and transferring patients from one caregiver to another. The clinical ethics curriculum should encourage students to voice their opinions and deal with values, responsibilities, and the uncertainty and failings of medical interventions.
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