Forms of Care: Ethnographic Interviews About Palliative Care With Health Professionals in London, 2017-2021

Cohn, Simon and Borgstrom, Erica and Driessen, Annelieke and Dumble, Katie (2021). Forms of Care: Ethnographic Interviews About Palliative Care With Health Professionals in London, 2017-2021. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-855055

This project set out 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 consequently explored 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. The research focused 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, we sought to observe both the overt and more implicit ways in which care is done. Observations were 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 were 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 analysed the way this alternative 'logic of care' emerges in practice, and how people themselves differentiated 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 contextualised these occasions within the everyday care that is provided, and examined 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 were 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, the project's ethnographic focus thereby contributed 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 doing so, the research contributed to current debates not only about palliative and end of life care, but the role of medical interventions more broadly. The project sought to re-conceptualise instances of medical 'non-intervention' as integral forms of biomedicine, and so contributed to current debates about what appropriate clinical practice and good care should be.

Data description (abstract)

Interview data involving a set of anonymised transcriptions of face to face interviews by one ethnographer with palliative care staff about practices in palliative care (n=17), focussing on when and how decisions are made about not intervening. In these interviews, doctors and nurses discuss complex case decision making, multi-disciplinary teams, roles in palliative care, communication with patients, advance care planning, prioritising and managing dying processes, and differences between community and hospital care. An anonymised transcript of an online workshop with palliative care staff discussing changes to practice during the Covid-19 pandemic in 2020 with multiple ethnographers. A set of anonymised interview transcripts (n=10) with healthcare professionals conducted by a different ethnographer investigating the use of prescription in palliative care, discussing how complex decisions about medication are made and communicated with patients at the end of their lives.

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