‘Total Pain’ in the 21st Century

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. We answer this call by foregrounding the continued relevance of ‘total pain’ in hospice and palliative care, and by extending it to new considerations and sites of care.

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. The concept emphasizes issues of personhood, complexity, and temporality. It entwines practical, financial, and cultural issues, and positions some pain as overwhelming or unspeakable, potentially unrepresentable. As a concept, total pain attends to, but goes beyond, the individual suffering body. Relational aspects extend to include family, friends and even staff, as well as long-term concerns of meaning, narrative, and biography. 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.

While it appears foundational in palliative care and end of life studies, there is a definitional confusion surrounding total pain. Saunders’ own flexible approach to its meaning has left a legacy of parallel interpretations as, among others, a checklist for care, a theory of personhood, and an experience of pain compounded by existential crisis. Total pain has become a flexible concept for describing and identifying complex suffering, yet also risks being a hollow appeal to forms of holistic care unattainable within contemporary biomedical healthcare systems.

Our Research Topic explores the relevance of total pain in practice and research today. How can the concept challenge the continuing curative impetus of modern biomedicine, even at the end of life? What is its relevance to emerging challenges such as assisted dying or dementia care? What can sociological approaches such as organization, embodiment, or affect theories bring to addressing total pain? What might a politics of total pain look like in the 21st century? In extending the concept to new territories, we also ask: 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? Finally, 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 on, but not limited to, the following themes:

- social pain
- the politics of suffering
- time and embodiment
- affect and emotions at the end of life
- social inequalities at the end of life
- total pain and Covid-19
- witnessing
- intersectional pain
- narrating/expressing complex pain
- complexity at end of life
- clinical empathy or compassion
- holism in medicine and nursing
- total pain and the value of death
- responding to unsolvable suffering
- non-human understandings of pain
- transdisciplinary perspectives.

Keywords: total pain, end-of-life care, suffering, death and dying, embodiment

Important note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.