Dr Erica Borgstrom, Lecturer in Anthropology and End-of-life Care, Open University, Milton Keynes, UK, explains the background to a longer article published in the June issue of the European Journal of Palliative Care.
In November 2017, a group of 20 social scientists gathered for a workshop at the Open University in England to discuss how the social sciences inform palliative and end-of-life care. The original idea for the event came from a discussion I had with other anthropologists and sociologists about how we conduct research and the impact it can have on palliative care. Given the size of the interdisciplinary medical field, it is easy to see how social science work about palliative care can be seen to sit at the margin of this field; however, our research often lies at the core of palliative care’s mission.
Social scientists have been researching ‘end-of-life care’ before it was classified as such and it continues to be an area that influences the shape of the field. A starting point to recognise this is by reference to Glaser and Strauss’ seminal work in the 1960s. Their insight of awareness contexts and trajectories of dying is employed regularly in current thinking about how best to deliver palliative care. (1,2)
Additionally, at the workshop, we discussed how contemporary research in the USA, UK, Australia and New Zealand, for example, is illuminating the ways in which the structure of healthcare systems influences what kinds of care are routinely provided at the end of life and how transitions to palliative care are made. In parts of Europe, research about the interplay between palliative care and euthanasia suggest that they are not a dichotomy when people think about the end of their own life. We discussed therefore how social science research about palliative care not only describes what palliative care is, but can also help articulate the ways – both current and future – in which people experience the end of life.
Both the workshop and subsequent paper in EJPC add to academic theorisation about palliative care, as well as to suggest practical implications for academic engagement in this field. In the paper, we outline three – although there are more – ways in which the social sciences can inform palliative care. These include viewing dying as a process, the use of stories in research and dissemination of research, and applied research. Through this combination of theory and engagement, social sciences can encourage people to challenge what they do and think.
For example, why do we provide care in this way? What does this imply about how we think about our relationship to patients? How does it make the staff feel?From our collective research and experiences we found that there is a need to further explore and collaborate on key factors that inform policy in end-of-life care, and the important and central part social sciences need to play in progressing this field.
To find out more and get involved . . .
- More about the workshop can be found here.
- If you’re a social scientist and want to find out more about similar events, join the SOCSCIEOLC@JISCMAIL.AC.UK mailing list.
- If you work in palliative and end-of-life care, and you’d like to collaborate with social scientists on future projects or events, please connect via Twitter (@ericaborgstrom or #socscieolc) or email us at SOCSCIEOLC@JISCMAIL.AC.UK
I’d like to thank my co-organisers of the workshop – Dr Sarah Hoare (University of Cambridge) and Natashe Lemos Dekker (University of Amsterdam) – for their support, and all the participants for their contributions at the workshop. This workshop was supported by funding from the Foundation for the Sociology of Health and Illness and the Association for the Study of Death and Society.
- Glaser BG, Strauss AL. Awareness of Dying. Chicago: Aldine; 1965.
- Glaser BG, Strauss AL. Time for Dying. Chicago: Aldine Transaction; 1968.
This post relates to the longer article, What the social sciences have to offer palliative care by Erica Borgstrom, Natashe Lemos Dekker and Sarah Hoare, published in the June edition of the European Journal of Palliative Care (EJPC).2018; 25 (3).
Note from the EAPC concerning the European Journal of Palliative Care
We regret to announce that Hayward Medical Communications, the publisher of the European Journal of Palliative Care (EJPC), is closing the journal after 24 years.
Since the launch of the journal in 1994, the EAPC and the EJPC have forged a strong and mutually effective bond. Together, we have provided our members and readers with a wide range of papers, including several seminal EAPC White papers, and the book of abstracts for many EAPC congresses. Our successful collaboration has also led to the publication of numerous posts on this blog contributed by many of the EJPC’s authors, providing a background to their longer articles. The diversity and high quality of the content has enriched our blog and we are deeply grateful to past and present authors, and to our colleagues at the EJPC. A tribute from the EAPC is published in the current issue of the journal.
You can view and download more than 120 posts based on EJPC articles in the special category on the blog for the European Journal of Palliative Care.