Exploring the complex and dynamic construction of care within palliative care : an ethnographic study of care within and across a specialist palliative care service in England

This thesis explores the multiple and dynamic constructions and processes of care that inform how care is provided, experienced and conceptualised within an NHS integrated palliative care service in England. Drawing upon the literature and research from palliative care and the debates about care within the philosophical, sociological, health and educational domains, a wide range of constructions were revealed. How these constructions have influenced and continue to influence care within palliative care was explored guided by a philosophical position that values multiple truths and ways of knowing. An holistic ethnography was undertaken over a period of six and a half months within the palliative care service that provided a combination of hospice, community and hospital palliative care. Observations of care were undertaken in each of the three areas of the service focusing on care practices, care talk, care processes and documentation. Semi structured interviews were undertaken with staff, people being cared for, family members and stakeholders. A thematic and hermeneutic analysis of the data was undertaken to reveal and interpret the emerging constructions of care, and how these informed and shaped palliative care practice. The palliative care services had a democratically shared leadership which valued the multiple voices, knowledges and processes within and across the service enabling it to adapt to the centralising and hierarchical pressure of the NHS, whilst retaining a service that provided personalised responsive holistic and supportive care. This thesis argues that care can be conceived of as a set of complex, multidimensional, temporal and dynamic processes informed by multiple knowledges and shaped by personal professional and structural values within society. Care within palliative care is constructed by these multiple processes and influences. Care is relational and can only be an ethically just process when the multiple voices are heard, respected and negotiated within the processes. Care is therefore not concrete, but shaped and reshaped over time.