Routine sedation: towards a normative understanding of sedation in palliative care

Abstract

This thesis explores the practice of sedation in hospice palliative care. Internationally this has been a controversial subject for over 20 years, with the use of sedation considered to be on a spectrum between euthanasia and symptom control at the end of life. This is a complex area of study, incorporating not only technical details regarding drugs and doses, but also relating to underlying values regarding end of life care. In the UK end of life care has developed from the ‘hospice movement’ of the 1960s, into the broad and far reaching approach of palliative care. Alongside this development, palliative care has espoused its own ‘ethos’ and values, evident in much of the literature in this area. This thesis presents the data from an ethnographic study in a UK hospice. The aim of the study was to develop a normative understanding of the use of sedation in hospice palliative care. The ethnography allowed an in depth understanding of this practice through prolonged immersion in the field of study. This enabled the practice of sedation to be understood as a process, or series of decisions, based upon a tacit understanding of a patient’s proximity to death. This was driven by the desire of hospice staff to bring about a comfortable and peaceful death, which was in turn motivated by the underpinning values, of the individual, the organisation, and of the approach of palliative care. This thesis has important implications for the future: for the specific use of sedative drugs in hospice palliative care, as well as for the broader issues in palliative care concerning decision-making at the end of life. A new definition for sedation at the end of life is constructed, relating particularly to, as it is derived from, the practice and underpinning values of hospice palliative care in the UK. Furthermore, as the evolving and changing nature of UK palliative care is considered, the capacity for hospice palliative care to enable the expression of different values, which manifest as a result of the changes in palliative care, represents a challenge to one of the core principles of the approach; patient centred care. This thesis introduces and considers values based practice as an approach which may facilitate the identification of values in decision-making, and reorientate care towards a more ‘patient-values-centred’ approach.