Not intervening as an active form of care: an ethnographic study of palliative care

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.

Whilst we do not wish to overly speculate on the extent to which this study will directly impact clinical practice and the quality of patient care, the work will undoubtedly provide a significant contribution to contemporary debates relating not only to palliative and end of life care, but also to distinguishing concerns about neglect with instances of not actively intervening as a legitimate form of care. As identified by our preliminary advisory group (including user panel), the main initial users from this research beyond the academy are healthcare professionals (particularly those working in palliative and end of life care) and policy-makers, although by implication the research is also intended to benefit patients and their support networks. In order to engage with these groups of professionals, the project will, from the outset, actively collaborate with a team of palliative care specialists and policy-makers, including the National Council for Palliative Care (NCPC).

Our immediate clinical project partners will benefit from the project through actively taking part in the research and using it in their training and development. For example, reporting back early analysis after Stage 1 and the final project findings will encourage the team to reflect upon current practices and potential changes to practice. The team is keen to develop further action research on the basis of this project's findings. Beyond this clinical team, Stage 2 of the project is explicitly designed to benefit clinical practitioners more broadly. By developing a range of dissemination approaches (academic and non-academic writing, website, podcasts, etc) the project will provide material to support reflection and initiate discussion about non-interventions, not only in relation to palliative and end of life care. In addition, during the final period, and in conjunction with our project partners, we will develop a set of terms and descriptors for broader discussion and consideration designed to reframe instances of non-intervention as valuable, modest, forms of care that complement and sometimes enable so-called active or aggressive management. There is the potential to develop future training material and workshops with the National Council for Palliative Care based on these outputs to inform future palliative and end of life care policies and guidelines.

We will also support the materials produced by this project to be used for medical and nursing student education as well as part of continuing professional development. Both Cohn and Borgstrom have experience in teaching medical students, and are well acquainted with the syllabus outlined in the GMC's Tomorrow's Doctors. We will draw on this to promote the work in arenas that support medical education, eg the Association for the Study of Medical Education and the Behavioural & Social Sciences Teaching in Medicine network. Sarah Yardley, one of our clinical project partners from University College London Hospitals NHS Foundation Trust, and Claire Henry of the National Council for Palliative Care (NCPC) both have active roles in promoting and changing medical education practices.

Policy-makers are also likely to benefit from this project in several ways. Firstly, we foresee the project as providing frameworks through which to actively and positively talk about non-interventions as part of a spectrum of care. Secondly, the interactive assets developed can be used within policy events and referred to in documents as a way to demonstrate the complexities of care during palliative phases and towards the end of life. The NCPC have expressed a keen interest in using the outputs from this project in their policy and promotional work in the future, particularly engaging Department of Health and NHS England in discussions about revised palliative and end of life care policies ahead of government elections in 2020.