The recent Lancet Commission into the Value of Death reports endemic suffering at the end of life in both global North and South countries and calls for the further expansion of holistic philosophies and practices of end of life care. Here at the End of Life Studies Group, we believe that one way to do so it by foregrounding and debating the continued relevance of the concept of total pain in hospice and palliative care, as well as by extending it to new considerations and sites of care. We are therefore organizing a Special Issue on total pain, in collaboration with the open access journal Frontiers in Sociology. This Special Issue will also be published in book form. Below you can read further information about the unique value of this collection and how you can contribute.
In the 1960s, the hospice pioneer Cicely Saunders began promoting the concept of ‘total pain’ to articulate how end-of-life pain is not only physical but also psychological, social, and spiritual. Since that time, it has proven to be an incredibly useful, enduring, and flexible concept across medicine, social sciences, and the humanities.
One of the key reasons for the continuing popularity of the concept is that total pain provides a way to articulate how we come to know the world and ourselves through felt experience, where the physical, emotional, and cognitive are all inextricably entwined. The concept foregrounds how pain shapes our capacity to make meaning, and that some pain is overwhelming or unspeakable, potentially unrepresentable. At the same time, total pain attends to, but goes beyond, the individual ‘suffering’ body. Relational aspects extend to include family, friends, and even health care providers, as well as larger cultural and environmental contexts. Total pain is therefore useful for considering how complex pain experienced at the end of life is individually felt, relationally constructed, and institutionally shaped; a biopsychosocial and environmental phenomenon requiring care attentive to all its manifestations.
However, while total pain appears foundational in palliative care and end of life studies, there is a definitional confusion surrounding the concept. Saunders’ own flexible approach to its meaning has left a legacy of parallel interpretations. Among others, she presented it as a checklist for care, a theory of personhood, and an experience of pain compounded by existential crisis. While total pain has become a useful concept for describing and identifying complex suffering, it also risks being a hollow call to forms of holistic care unattainable within contemporary biomedical healthcare systems and/or valued only for its rhetorical appeal.
We are therefore seeking contributors to our Special Edition who are interested in exploring, debating, and extending the relevance of total pain in practice and research today. Potential topics include:
- What is its relevance to emerging care challenges such as assisted dying or dementia care?
- What might a politics of total pain look like in the 21st century?
- What can sociological approaches such as organization, embodiment, or affect theories bring to understanding and addressing total pain?
- Is total pain useful for thinking more generally about complex experiences of pain or imminent death?
- How can total pain articulate health inequalities or community responses to dying and suffering?
- How might total pain offer new ways of thinking about non-human suffering or the climate emergency?
We welcome contributions which utilize empirical, theoretical, ethnographic, and non-conventional approaches to total pain. You can find out more here.
We look forward to hearing from you.
Dr Marian Krawczyk, University of Glasgow
Dr Naomi Richards, University of Glasgow
Dr Lisbeth Thoresen, University of Oslo
Dr Joe Wood, King’s College London
This sounds like an eminently useful way forwards and I look forward to contributing. Tamsin Grainger, Author Death and Loss in Shiatsu Practice, a guide to holistic bodywork in palliative care (pub 2020 Singing Dragon / Hachette)