Glasgow End of Life Studies Group

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

What does our gut bacteria have to do with how we experience pain? Dr. Marian Krawczyk was awarded a Carnegie Research Incentive Grant to explore this question. Her research focuses on people with advancing life-limiting illnesses, where cumulative physical, psychological, social and spiritual distress can lead to a state known as ‘total pain’. However, while we know that total pain causes significant suffering, we currently know very little about the precursors of total pain.

This study aims to develop a new interdisciplinary approach, by synthesising existing research from anthropology, medicine, and biology to better understand how the health of our gut microbiome may predispose us to, or protect us from, certain forms of pain experience.

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.

You can learn more about the project here: https://www.youtube.com/watch?v=ZDTHxh4H20E&feature=youtu.be

The relevance of ‘total pain’ in palliative care practice and policy

In 2019, Dr. Marian Krawczyk and Dr. Naomi Richards co-authored a journal article which proposed that a decades-long lack of inquiries into the concept of total pain has led to a knowledge gap and disparity in understanding between clinicians, and that a deeper understanding of total pain is a priority for the evolution of palliative care practice and policy.

The article 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.

You can read a longer blog post about the article at the European Journal of Palliative Care website:

https://eapcnet.wordpress.com/2018/07/30/the-relevance-of-total-pain-in-palliative-care-practice-and-policy/

The full article can be found here:

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

Total pain: origins, current practice, and future directions

In 2018, three of our End of Life Studies team members collaborated on a journal article about the origins, current practice, and future direction of total pain. The concept of total pain holds a key place in the history of palliative care. Its origins in the work of Cicely Saunders have been described in some detail, yet there is still much to be learned about and from it. The article addresses some of the intellectual influences on the conceptualization of total pain and explore it as a form of practice. The conclusion sets out some future directions for thinking about and evaluating total pain - building on the legacy of Cicely Saunders, who first brought it to prominence.

The full article can be found here:

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

Total pain in hospital palliative care

Dr. Marian Krawczyk has undertaken ethnographic research into total pain, which resulted in an open-access book chapter.

The chapter explores who palliative care was initially developed to address the multi-faceted symptoms unique to end of life, and gave rise to the ‘diagnosis’ of total pain. It then examines the origins of total pain within the genesis of palliative care as a medical speciality and explores how total pain is diagnosed, treated, in contemporary hospitalized palliative care in Canada. The chapter focuses on the story of one patient, and through her story suggests  that the diagnosis of total pain may be best be understood as both enabling and constraining particular forms of conduct as the end of life nears.

The full chapter can be found here:

Krawczyk, M. (2018) "I'm here to help with pain": diagnosing and resolving total pain in hospital palliative care. In: Nissen, N. and Risør, M. B. (eds.) Diagnostic Fluidity: Working with Uncertainty and Mutability. Universidad de Tarragona: Tarragona, Spain, pp. 149-169. ISBN 9788484246633