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Attempts to Control the End of Life in People with Dementia: Two-level Approach to Examine Controversies

Periodic Reporting for period 1 - CONT-END (Attempts to Control the End of Life in People with Dementia: Two-level Approach to Examine Controversies)

Reporting period: 2018-12-01 to 2020-05-31

Dementia is a common cause of death in western societies. In dementia at the end of life, cognitive and physical decline imply that control is typically lost. CONT-END will examine when retaining control is beneficial or not. End-of-life research involves particular practical and ethical challenges. Therefore, in parallel, CONT-END will examine researchers’ discretion in decisions in end-of-life research to support researchers in navigating such decisions and improve the quality and transparency of research.
The work is organised in three related Work Packages (WPs).
(1) In a 6-country vignette study, we will examine if and when people with dementia, family caregivers and physicians find interventions, shown on video, acceptable. The interventions contain an element of striving for control in the process of dying with dementia: two approaches to advance care planning for the end of life, use of new technology to monitor symptoms when unable to self-report, and euthanasia. To this end, we have developed and pilot-tested four animation videos. The development of the videos has been an iterative process with multiple rounds of feedback and adjustments which was needed to ensure the videos are easy to understand, not overly confronting or positive but neutral as far as possible. Input has been provided by a video development team, the CONT-END research team, all international collaborators of WP1, the project’s Ethics Advisory Committee and older persons, persons with dementia, and family caregivers in the Netherlands. Ethics approval to conduct the work for this WP in the Netherlands has been granted and recruitment of physicians has started.
(2) A cluster-randomised 3-armed controlled trial in patients and their family caregivers will assess effects of two approaches of advance care planning differing in level of control (detailed advance treatment orders versus goal setting and coping based) on outcomes ranging from favourable to less favourable, and whether effects differ in subgroups. Cases in which the technology is preferred or applied will be observed. Considerable effort has been invested in refining the protocol, clarifying the two different approaches to advance care planning and developing advance care planning tools for physicians, patients and family. We started recruitment of General Practitioners.
(3) Ethnographic fieldwork will be conducted in two or three different end-of-life research practices to observe how researchers navigate every day decisions in research. Finally, a Delphi study in the last year will help to synthesize CONT-END’s findings with input from independent researchers.
Of note, for the three WPs, commencing and format of data collection and fieldwork depends on local COVID-19 measures.
We aim at high-quality research through ongoing reflection on methods and integrity of the research within the CONT-END team. The output of the research will be relevant for the particular field of end-of-life in dementia research, and beyond through an in-depth understanding of control in research and in practice and through developing new methodology for improving research quality and integrity.
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