Welcome to the website for the Forms of Care Project. This is an ESRC-funded three-year ethnographic study examining instances where healthcare care staff within one medical trust and focusing on the palliative care team, either individually or collectively, do not do something.
By drawing on anthropological theories and methods we analyse instances of not intervening, not simply as the opposite to the usual imperative to always clinically intervene, but instead as embedded in everyday care practices. We 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.
Forms of Care is an ESRC-funded three-year ethnographic study examining instances where healthcare care staff within one medical trust and focusing on the palliative care team, either individually or collectively, do not do something. It is a joint collaboration between LSHTM and the Open University. The project runs from September 2017 to January 2021.
We will be using this website to share project updates, the resources generated by the project, and further information about related topics. You can also follow the project on Twitter.
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.
The study will document the range of forms and occasions when not intervening emerges as part of everyday practice. This can refer to a particular medication, a general course of action, or broader aspect of care. In contrast to cases of neglect, such practices of not intervening are not only routine but form significant dimension of much routine medical care. Nevertheless, they frequently lead to tensions and clashes with the more dominant clinical logic of active management, and often with patients' and relatives' hopes and expectations.
In contrast to ideas of medical neglect, we explore how these routine practices of not doing, whether they are conscious and deliberate or the result of more distributed social interactions, are nevertheless an active and valuable form of care. We draw on anthropological and social science theory more generally to provide an analytical framework to interpret the data and situate findings within a broader understanding of care.
We acknowledge that 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.
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.
To describe and examine the multiple occasions and forms when palliative care staff actively do not do something, conceptualising such ‘non-interventions’ as productive and meaningful social and material practices;
To examine if and when ‘non-interventions’ clash with the more dominant biomedical imperative to always intervene, and how individuals, teams, and systems deal with this;
To describe how a sample of patients, and their relatives and carers, make sense of these practices;
To contribute to a growing body of social science research of health concerned with social practice by developing theoretical and methodological approaches that are able to take acts of not doing ‘seriously’;
To invite a range of stakeholders, during innovative workshop sessions, to reflect upon the ethnographic findings and help generate insights into how ‘non-interventions’ are perceived outside the immediate clinical setting or personal experience);
To develop a range of outputs and resources (some of which will be hosted on this website) for others to use
The project involves an ethnographic study of palliative and end of life care in a large NHS hospital and its neighbouring community services.
Ethnography is a method of data collection which involves (extensive) observation of, and often participation in, the daily lives and work of the (group of) people it seeks to study.
Through shadowing clinical staff in their everyday work, we seek an in-depth understanding of decision-making processes around care, but more widely attempt to capture unspoken, and sometimes tacit, ways of working.
The research team has observed the weekly multidisciplinary team meetings from May 2018-January 2020. Annelieke has shadowed staff on home and hospital visits between November 2018 and November 2019.
Through interviewing palliative care staff, and interviewing patients and their close family members, we compile detailed case studies of palliative care practices.
To date, we have conducted 20 interviews with clinical staff, and 10 patient interviews.
As part of the project, a range of workshops, which we call 'collaboratories' and events are organised during and following data collection. These workshops and events are meant to ensure the engagement of patients, their relatives and practitioners in the research process, as well as the joint reflection of research findings and possible translations into medical practice.
The collaboratories that the team has organised thus far are:
- Collaboratory with two palliative care and symptom control team.“Place, death and dying”. 12 February 2020
- Collaboratory with community Palliative care team and symptom control team. “Communication as care, and care for communication”. 26 June 2019.
- Collaboratory with two palliative care and symptom control teams. “Forms of care: exploring decision making in palliative and end of life care.” 29 May 2019.
We analyse how the alternative ‘logic of care’ of ‘active non-intervention’ emerges in practice, and how people themselves differentiate it from both neglect and the imperative to always act. The work seeks to re-conceptualise instances of medical ‘non-intervention’ as an integral form of care, and so contribute to current debates about what appropriate clinical practice and good care is and can be.
The principle investigator for Forms of Care is Simon Cohn, Professor of medical anthropology at the London School of Hygiene and Tropical Medicine (LSHTM). He has conducted research on a wide range of health and illness-related topics, including observational research in secondary care settings, large multidisciplinary research projects, and clinical trials.
Dr Erica Borgstrom, from the Open University (OU), is the co-investigator. Erica has been conducting research in palliative and end-of-life care within the NHS and hospices since 2009. This includes ethnographic research about clinical care and interviews with staff and patients about care and care planning.
Dr Annelieke Driessen, co-investigator in the Forms of Care project, is responsible for conducting the majority of data collection and analysis. She works as Research Fellow at LSHTM. Annelieke has previously conducted an ethnographic study in residential dementia care settings in the Netherlands, in which she focused on how care practices shaped the good life with dementia. As part of this project and in the current research Annelieke works with care professionals towards jointly and collaboratively translating findings between research and practice settings.
Our project partners include the specialist palliative care teams in a large London hospital and community service, and team of multi-disciplinary advisors from other universities including ethicists and anthropologists, a policy advisor at Hospice UK, and several members of the public who have an interest in palliative and end of life care.
5 December 2019. “Placing death and dying: On the work of relationships in making place at the end of life.” A. Driessen, S. Cohn and E. Borgstrom. BSA Death, Dying and Bereavement, Sheffield
11-13 September 2019. “To lead, to follow, to let happen: An ethnography of (non)-intervention at the end of life.” A. Driessen, S. Cohn and E. Borgstrom. BSA Medical Sociology annual conference, York
1 June 2019. “Control over, and control with – An exploration of examples of tinkering towards control in end of life care.” A. Driessen, S. Cohn and E. Borgstrom. Workshop ‘Caring Control_Controlling Care’. Anthropology department, University of Amsterdam.
24-27 July 2018. “Crafting attachments and detachments in palliative care”. A. Driessen, S. Cohn and E. Borgstrom. In: panel “Crafting attachments, making worlds”. Co-convened with E. Vogel and J.Laurent. EASST, Lancaster. Convenors: E. Vogel, J, Laurent and A. Driessen. EASST, Lancaster.
1-2 October 2018 “Intervening & Influencing”. A. Driessen, S. Cohn and E. Borgstrom. Re-politicising Public Health: A workshop for early career ethnographers. Kings College London & LSHTM, London.
5 November 2019. “The entanglements of doing and not doing and what gets noticed in end of life care.” S. Cohn, A. Driessen and E. Borgstrom. University of Copenhagen.
12 November 2019. “Why does global health need to talk about death?“ S. Cohn. Global Health Lab Discussions, Panel discussion. Centre for Global Chronic Conditions series event. LSHTM.
(See also this comment by Richard Horton in The Lancet, Offline, 23 November 2019)
16 May 2019. “Leading and following: rethinking agency through an ethnography of palliative care teams in the UK.” A. Driessen, S. Cohn and E. Borgstrom. Seminar Series of P6 research collective: Body, Knowledge, Subjectivity. Department of Technology and Social Change (TEMA-T), Linköping University.
18-21 August 2020. “‘Not doing’ in times of crisis: Agency and the urgency of pause and restraint“. EASST – 4S, Prague. Convenors: A. Driessen and S. Cohn
13. September 2019. Special Event “Sociological Contributions to Palliative and End of Life Care” with MacArtney, J.; Krawczyk, M.; Driessen, A., S. Cohn, E. Borgstrom and Almack, K. BSA Medical Sociology annual conference, York.