“Total pain” is the term used within hospice, palliative, and end-of-life care to describe pain which is complex and overwhelming, and which encompasses physical, psychological, social, and spiritual dimensions. It is an attempt to encapsulate experiences of suffering that are unique to advancing life-limiting illness, the end of life, and dying. The term was first used in 1964 by the founder of the modern UK hospice movement Dame Cicely Saunders. Since that time, addressing total pain through a holistic approach that attends to both prevention of physical pain and patients’ experiences of illness remains a central concern in hospice and palliative care.
Here at the Glasgow End of Life Studies Group, total pain is one of our enduring interests, and members of our group have researched and written about it extensively its origins and definitions, as a care philosophy and a set of clinical practices, and as a descriptor of personal experience, including experiences of climate change. However, there is currently very little known about the entanglement of the different aspects encompassed by the concept of total pain.
Over the last few years, in tandem with growing research about the importance of the gut microbiome, I’ve become interested in thinking about how our gut bacteria might shape our experiences of different types of pain at the end of life. Sounds a bit out there, right? Stay with me.
We now know that there are many more bacterial cells in our body than human cells, by about a factor of 10:1. Well over 90% of bacteria in the human body reside in the large intestines, with a combined weight that is greater than our brains, and it is collectively known the gut microbiome.[1] The gut microbiome is a central feature of a multi-directional communication system linking our gastrointestinal tract and our brain, and it’s called the brain-gut-microbiome axis (BGMA). Many now consider the gut microbiome to be of such critical importance that it is best conceptualized as a ‘invisible’ organ of the body. Increasingly, attention has focused on the apparently central role of the gut microbiome in regulating health and well-being. So, could experiences of complex pain during advancing life-limiting illness and at the end of life be shaped by the microbiome?
I was awarded a Carnegie Research Incentive Grant to explore this question from a transdisciplinary perspective that draws from research across life, medical, and social sciences to better understand how the health of our gut microbiome may predispose us to, or protect us from, certain forms of pain experience in advancing life-limiting illness. I am very pleased to announce the results of this review is now available as a free resource for viewing and download. A new approach to suffering in life-limiting illness: total pain and the microbiome is a large searchable report with six main sections focused on:
- Different types of pain
- Mood, cognition, and affective ‘disorders’
- Ageing, advanced, critical, and life-limiting illness
- Medical treatments impacting the microbiome
- Microbiome interventions
- Inter- and transdisciplinary approaches to the microbiome
Along with my co-authors Dr Natalia Calanzani and Dr Joe Wood, our primary goal in creating the report was to summarize findings across a diversity of literature to help us to think about total pain in a new way. The graphic here highlights some of the key connections we found. The report also has a comprehensive executive summary; more than 50 hyperlinked subtopics; and further detailed discussion linking the microbiome specifically to total pain and the end of life. We also provide a list of nearly 200 citations. Tp learn more please click on the document link.
Publishing this report as an open access resource allows us to make our findings available to a wide audience. As our aim was to be exploratory in scope rather than systematic and exhaustive, the report is designed to provide a foundation – a jumping off point – for further transdisciplinary thought and research. We will be publishing further from these findings, but we also feel the report itself represents a valuable resource which should be made freely available for others. We hope that it generates further interest in developing a truly transdisciplinary approach to experiences of pain, distress, and suffering in advanced life-limiting illness, and at the end of life.
[1] The gut microbiome is the combined intestinal microorganisms and genetic material of these microorganisms. There are also viruses, fungi, and protozoa that constitute the gut microbiome, and other human microbiomes (e.g., mouth, skin, vaginal).