A new approach to suffering in life-limiting illness: Total pain, the brain-gut axis, and the human microbiome

Published on: Author: Marian Krawczyk Leave a comment
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Credit: Michael Schiffer on Unsplash

People with life-limiting illnesses report exceptionally high rates of psychosocial and existential suffering in conjunction with bodily pain. Cicely Saunders famously conceptualized this cumulative distress as ‘total pain’.

As you may already know, we’re pretty interested in total pain around here. Professor David Clark has written extensively about it (see here for an overview), and several members of our team have recently published discussion papers on total pain[1]. We also have two PhD students working on the topic. Joe Wood is investigating Cicely Saunders’ published papers and private notes to explore the literary, philosophical, and theoretical heritage of the term. Claire Morris has just begun to explore total pain in palliative care literature, policy and clinical practice across the UK, Canada, and Australia. 

We are drawn to the concept of total pain because it has been central to the development of palliative and end of life care, and continues to sensitize us to suffering as a complex experience that involves the totality of a person. However, in spite of a strong desire to address the suffering in those with life-limiting illness and the availability of different therapeutic interventions, we also know that total pain remains poorly understood and critically under-treated.

Over the last while I have become interested in thinking about total pain – its origins, expressions, and resolution – from a perspective that draws equally from the social, biological, and medical sciences. I believe this transdisciplinary “biopsychosocial” approach is one way to honour Saunders’ understanding of total pain as a multi-faceted experience that necessary includes attending to the interrelationship between social, material, and biological environments.

In particular, I have been drawn to recent studies that indicate our microbiome is an important contributor to our health and wellbeing. Our microbiome encompass all of the microbes that live in and on our bodies, and which comprise half of all the cells in our bodies. Our microbes have an estimated collective weight similar to that of our brains, and have even been described as an invisible ‘organ’ due to their critical functions in regulating our health. For example, our gut microbes are involved in how our central nervous system and the gastrointestinal tract are able to communicate, a system known as the “brain-gut axis”. Further, the overall health of our microbiome is stress-responsive, meaning that it can be negatively affected by a range of physical, social, emotional and environmental stressors. In turn, a ‘disrupted’ microbiome has been linked to a numerous health and wellbeing challenges.

Reading studies about the microbiome led me to wonder if there might be a benefit to exploring how the multi-faceted experience of total pain may be influenced by microbes. So I was particularly excited when I was recently awarded a Carnegie Research Incentive Grant to explore this linkage. The grant enables me to conduct a targeted review of literature across social, medical, and biological research to develop an innovative transdisciplinary theory that considers the connection between total pain and a disrupted gut microbiome in those with advancing life-limiting illness, as well as to identify future research directions.  An important contributor to this work is Natalia Calanzani, who joins this project as she finishes her PhD work in Population Health Sciences at the University of Edinburgh.

Total pain is a complicated, multi-factorial experience. Exploring it from a microbial perspective may enable us to better understand this complex biopsychosocial phenomena, including new clinical approaches for engaging with it. I look forward to giving you further updates on the project, and if you are interested in this topic, please do be in touch.

[1] Krawczyk, M., & Richards, N. (2018). The relevance of ‘total pain’ in palliative care practice and policy. European Journal of Palliative Care, 25(3), 128-130.

Krawczyk, M., Wood, J., & Clark, D. (2018). Total pain: origins, current practice, and future directions. Omsorg: The Norwegian Journal of Palliative Care, 2018(2).

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