Title: Not intervening as an active form of care: an ethnographic study of palliative care
Funder: Economic and Social Research Council

Abstract: This proposal is to conduct rich ethnographic fieldwork, and a follow-up period of stakeholder reflections, within a palliative care team based within a large NHS hospital and its surrounding neighbourhood. There is currently a great deal of interest in how the NHS as a whole is having to make treatment decisions at both the policy and individual level by taking into account diverse criteria and values. As part of this, a lot of debate has focused on so-called 'over-treatment' and high-profile cases of medical neglect. However, in practice, and between these two extremes, medical care regularly involves more modest practices of simply not intervening or of withdrawing treatment. For example, these 'non-interventions', as we currently call them, might include reducing or removing medications or other therapies (including fluid provision), withholding treatments before they have started, or simply waiting to observe how a patient's condition develops. The study will consequently explore the many forms and occasions when medical staff - doctors, nurses and other care workers - opt to not actively intervene. Paradoxically, this mode of 'not intervening' is, from the palliative team's standpoint, a valid and important variant of medical intervention, yet is regularly perceived as withholding or denying the patient services or treatment. We will do this by focusing on palliative care, as previous research has suggested that there is a particular shift in the frequency and kinds of interventions and 'non-interventions' considered when patients are eventually referred to this specialism. Through field-based research (support from our NHS project partners already agreed, subject to funding) we will seek to observe both the overt and more implicit ways in which care is done. Observations will be supplemented with interviews with staff, and patient case studies (including interviews with patients and their identified important others, e.g. relatives and/or carers). In so doing, we will be able to trace the multiple, and potentially competing, values and expectations that underlie everyday care and the extent to which not intervening complements or clashes with the common, default, biomedical approach of active and aggressive management. By drawing on anthropological theories and methods we will analyse the way this alternative 'logic of care' emerges in practice, and how people themselves differentiate it from both neglect and the more heroic imperative to always act. Although instances of not intervening are regularly described and defined as simply the opposite to the usual imperative to always clinically intervene, we wish to contextualise these occasions within the everyday care that is provided, and examine the extent to which different values and criteria are being drawn on, and ultimately whether the patient and their status are thereby constructed differently. The data generated through this stage will be used in collaborative events to stimulate discussion and co-produce ways of re-framing 'non-interventions' as distinct from discourses of failing or neglect. Engaging with current debates in anthropology and the social sciences more broadly, its ethnographic focus will thereby contribute to contemporary interest concerning social practice by highlighting the ways in which not being present and not doing can be both active and meaningful. In addition to traditional academic outputs, we will produce online interactive assets based on case studies to promote exploration and discussion of the issues raised by the study. In doing so, the research will contribute to current debates not only about palliative and end of life care, but the role of medical interventions more broadly. The project will seek to re-conceptualise instances of medical 'non-intervention' as integral forms of biomedicine, and so contribute to current debates about what appropriate clinical practice and good care should be.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE