Here, there is nobody. An ethnography of older people's end-of-life care in hospital

Abstract

The alleviation of suffering lies at the core of compassionate end-of-life care, yet little is known about the lived experience of suffering. Motivated by a series of reports on poor care of older people in hospital, this study addresses suffering in older people at the end of life in an acute hospital ward in the United Kingdom. Methods were developed from a synthesis of ethnographic fieldwork and phenomenological interpretation. Data were collected using participant observation on an acute care ward for older people in a hospital in Northern England, over 186 hours between June and August 2015. Data included field notes, documents, photographs and informal interviewing. Staff and patient participants were identified using theoretical sampling. Data were analysed using a hermeneutic approach involving a continuous process of analysis, further data collection, posing of problems and questions, and interpretation. This cyclical approach to the data enabled the development of interpretive perspectives which could then be further explored in the field. Findings suggested that care for older people was shaped by competing ideologies of care and organisational regulatory processes. Particularly when there was ambiguity regarding prognosis, there was a tendency for care to default to a ‘rescuing’ acute care model. Through exploring the experiences of individual patients and placing these in the context of cultures of care, I suggest that iatrogenic suffering was a significant concern that often went unrecognised. Patient-centred goals must be more focused upon avoidance of iatrogenic suffering. Recommendations include innovations in clinical education and multiprofessional working.