Palliative care practices and policies in diverse socio-cultural contexts: aims and framework of the ERC globalizing palliative care comparative ethnographic study.

Background: Palliative care as a specialist professional practice of care for people with advanced illness is becoming increasingly influential worldwide. This process is affected by global health inequalities as well as cultural dimensions of approaching death and practicing care in life-limiting illness.

Objectives: The European Research Council-funded Globalizing Palliative Care (ENDofLIFE) project aims to understand how palliative care policies, discourses and practices are translated, adapted and reconstituted in diverse socio-cultural settings and how cultural dimensions of approaching death and local practices of care shape palliative care implementation.

Standardising care of the dying: An ethnographic analysis of the Liverpool Care Pathway in England and the Netherlands.

The Liverpool Care Pathway for the Dying Patient (LCP) was a prominent set of guidance in the late 2000s and early 2010s within palliative and end-of-life care. Developed in England to improve the care of dying patients, it was later adopted in 20 counties. After a public scandal, it was removed from practice in England but remains in other locations, including the Netherlands.

Anticipatory Grief in Dementia: An Ethnographic Study of Loss and Connection.

In this article, I address the experiences of family members of people with dementia, as they expressed the sensation of gradually losing the person with dementia. Based on ethnographic fieldwork in nursing homes in the Netherlands, and contributing to the anthropology of grief, I explore the co-existence of experiences of anticipatory grief and manifestations of care to maintain meaningful relations. I show how my interlocutors adapted to changing circumstances as the disease progressed, and in so doing found new ways to relate, as well as prepared for future losses and the expected end of life.

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

Background: Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models.

Methods: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions.

Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers.

Background: Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP.

Experiences with the Liverpool care pathway for the dying patient in nursing home residents: a mixed-method study to assess physicians' and nurse practitioners' perceptions.

Background: The Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent experiences with its application in a nursing home setting related to its implementation and staff competencies. The aim of this study is to understand how the LCP is being used in the context of the nursing home, including for residents with dementia, and experienced from the perspectives of those responsible for medical treatment in nursing homes.

Competing goods and fallacies of care: Moral deliberations at the end of life in the nursing home.

While care is often either implicitly or explicitly conceived in terms of "doing good," the morality of care is more complex than this association would suggest. Nursing home care, in particular, is both characterized by institutional demands for regulation and standardization, and the subjective practices of care workers. These can represent different notions of good care.

Collecting self-report research data with people with dementia within care home clinical trials: Benefits, challenges and best practice.

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents.

Moral frames for lives worth living: Managing the end of life with dementia.

Narratives that frame the end of life with dementia as undignified reveal moral claims on which lives are considered worth living. These claims are deeply rooted in the medicalization of death and its appeal to dignity. Drawing from ethnographic fieldwork in nursing homes for people with dementia in The Netherlands, I demonstrate how the end of life with dementia is managed through such moral frames.

Professional caregivers' experiences with the Liverpool Care Pathway in dementia: An ethnographic study in a Dutch nursing home.

Unlabelled: ABSTRACTObjective:There are few studies on how professional caregivers apply the Liverpool Care Pathway (LCP) in nursing home care for people with dementia. Further, despite critiques in the United Kingdom, the LCP continues to be used in the Netherlands, while, to the best of our knowledge, no studies have been conducted since its implementation. The purpose of the present study was to analyze professional caregivers' experiences with the LCP in this context.

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development.

Background: When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.

Methods: In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries.