Planning for death? An ethnographic study of choice and English end-of-life care

In 2008 the National End of Life Care Strategy was released in England to create a largescale change in the way dying patients were cared for. This dissertation explores the meaning, practice, and experiences of end-of-life care (EOLC). It is based on ethnographic fieldwork from 2010-2012 that follows policy into and across healthcare practice and the daily lives of those living with life-limiting conditions. The first part of the study analyses the discourse of policy as evident in documents, policy events, and interviews with policy-makers, to understand the core values and motivations within this new field. By emphasising patient choice through advance care planning as a way to facilitate a ‘good death’, these polices have reshaped how persons, as dying patients, could be known and how they are positioned within the healthcare system as autonomous, reflective individuals. Documents like the Preferred Priorities for Care are used to facilitate this process. As observed during clinical visits and expressed in interviews, healthcare professionals selectively use such forms, thereby demonstrating varying professional values, and treat their completion as a task. The layout and use of the forms influences professional-patient interaction and the ‘choices’ that can be made. The second half of the dissertation focuses on the experiences of those who are the subject of EOLC policy and is based on long-term interaction with 10 people (up to 14 months), often in their own homes and involving their daily routines and family; this is supplemented by an additional 43 in-depth interviews and observations of support groups. Being embedded in a social web of relations was a prominent feature of our encounters. Maintaining familial relationships and roles is important to people and they do this by navigating the flow of care and concern within the family. Assumptions about the linear trajectory of dying and the finitude of death are challenged by people’s experiences of prolonged waiting and incomplete endings as they continued to be entangled in social relationships. Consequently a wider notion of personhood beyond individual patienthood should be adopted for understanding living at the ‘end of life’. Shifting the focus from choice as an individual act and object to one of interaction, I demonstrate how a relational approach to the study of end-of-life care challenges the emphasis on the dying individual and the dichotomy between care and choice. Overall, this ethnography demonstrates the difference between how policy conceptualises end of life and choice and the way people, who may be in this category, experience living with life-limiting conditions