Marian Krawczyk and Naomi Richards, The University of Glasgow, School of Interdisciplinary Studies, Glasgow, Scotland, UK, explain the background to their longer article published in the June issue of the European Journal of Palliative Care.
From an anthropological perspective, palliative care can be understood as a distinct ‘culture’ within medicine and healthcare systems, with guiding principles, expertise, beliefs, and norms that mark it as both unique from, and contiguous with, other forms of care. Historically, the concept of ‘total pain’ has been one of the primary distinctions that has marked palliative care as different from other forms of conventional medical care for those with advancing life-limiting illness.
First coined by Cicely Saunders in 1964, the descriptor ‘total pain’ encapsulated her awareness that the patients she cared for often experienced a complex form of pain that entwined physical, psychological, social and spiritual dimensions. As Saunders and her approach to care for those nearing end of life became established within medicine (including her training of many of the first generation of palliative specialists), she continued to strenuously advocate the need for clinicians to be sensitive to all of these dimensions. This holistic orientation, and resulting care practices, became known as ‘total care’ or ‘whole person care’. (1)
Although there have been significant changes to the scope of palliative care in the last 60 years, many professional and policy descriptors continue to use ‘palliative care’, ‘total care’ and ‘holistic care’ as synonyms. (2) This indicates that addressing total pain remains a central guiding concept in the culture of palliative care provision and policy development. Yet paradoxically, discussion about what total pain is remains extremely limited. Further, we have very little insight as to the relevance of the concept in clinical practice across the diverse range of settings and care populations that make up contemporary palliative care.
We aim to address this knowledge gap. As anthropologists interested in palliative care, advancing life-limiting illness, and end of life, and as members of the Glasgow End of Life Studies Group, we are currently engaging in a range of interdisciplinary, cross-cultural approaches to examine how the concept of total pain has been discussed and debated in palliative care and policy literature. We are also exploring how palliative care specialists working in different clinical contexts in different parts of the world understand, assess and work to address total pain, and we will be mapping mainstream clinical interventions that specifically address total pain.
In this spirit, our paper offers a brief outline of key issues in defining total pain, considers some of the professional and system-based challenges to addressing total pain, and suggests how the substantial knowledge gap about total pain has potentially serious consequences in clinical practice and policy development. We hope this stimulates further interest and inquiry as to the relevance of total pain within the contemporary culture of palliative care.
More about the authors …
Marian Krawczyk, PhD, is a Lord Kelvin Adam Smith Fellow at the University of Glasgow, School of Interdisciplinary Studies. Naomi Richards, PhD, is a Lecturer in Social Science (End of Life Studies) at The University of Glasgow, School of Interdisciplinary Studies. Both are members of the Glasgow End of Life Studies Group.
- Mehta, A., & Chan, L. S. (2008). Understanding of the concept of “total pain”: a prerequisite for pain control. Journal of Hospice & Palliative Nursing, 10(1), 26-32.
- E.g. National Palliative and End of Life Care Partnership. “Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020”.
- Follow Marian on Twitter @ MTKrawczyk_42
- Follow Naomi on Twitter @DrNaomiRichards
- Glasgow End of Life Studies Group
- School of Interdisciplinary Studies.
This post relates to the longer article, ‘The relevance of ‘total pain’ in palliative care practice and policy’ by Marian Krawczyk and Naomi Richards, published in the June edition of the European Journal of Palliative Care (EJPC) 2018; 25 (3). (To access the archive, you may need to choose the year, issue and article and then register).
Note from the EAPC concerning the European Journal of Palliative Care
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