The authors of this blog have both been involved in palliative care for over a decade, albeit for different reasons.
Claire Morris is a global palliative care advocate within a palliative care international non-governmental organisation and Lucy Watts has been accessing palliative care services since she was 17 years old as a result of a rare, progressive neuromuscular and multi-systemic condition
Claire is currently doing a PhD at the University of Glasgow’s End of Life Studies Group looking at the concept of total pain and Lucy has experienced it first-hand. This blog will outline what we understand about total pain and what surprises us about how this concept is used and discussed.
I started my PhD on total pain in 2018 and one of the early questions from my supervisors was “What is total pain?”. Having worked in palliative care since 2004 and heard and used the term regularly, this question did not phase me initially. Saunders’ early description of total pain in 1967 was where physical, mental, spiritual and social issues interact for people with a terminal illness creating an all-encompassing experience.  Yet, when I started to look into the concept in more detail, the precise meaning and consistent use of the term was increasingly elusive, with questions around what the components are, who experiences total pain and whether total pain is indeed an all-encompassing experience.
Roll on to 2020 by which time I had completed a scoping review of the inclusion of total pain in medical and allied health literature relating to hospice, palliative and end of life care. However, many questions remained. One of the major issues that concerned me when doing the scoping review was the absence of the first-person voice and lived experience of total pain. It is true that articles which include total pain contain case studies of patients or the words of patients are quoted to demonstrate what total pain is. This began with Saunders’ early writings on the topic when she quotes her patients – “It seemed that all of me was wrong” and “all of me hurts”. Yet I found no articles written by people who identified their own lived experience of total pain or evidence of co-production of research into this topic.
Some may think this is not surprising, given the possible stage of life of a person experiencing total pain and a belief that people may be too sick or in too much pain to contribute. However, I dispute this given that many people who access palliative care, and may have experienced total pain, have active lives for many months, and even years, like my co-author. Others may not be surprised due to the nature of academic publishing where professional academics are perhaps the majority of those who publish in academic journals. However, there are plenty of examples where non-professional academics are authors of academic journal articles utilising their expertise due to lived experience, including by the co-author of this blog . We should be able to recognise the importance of participants “having an alternative, legitimate expertise to that of academic researchers” and, indeed, that “the valuing of expertise beyond that of professional researchers can be regarded as an ethical stance” . Those who are able to get articles published wield power, demonstrated by their ability to get articles published in the first place. Their power is also demonstrated by the subsequent impact of their publication, including the understanding it generates on the chosen topic. Limiting publishing to professional academics, without meaningful co-production with those with lived experience, narrows our worldview, not enhances it.
While my understanding of the abstract concept of total pain has increased through my reading and discussions, and I have empathy in relation to the total pain experience, I do not believe I can fully understand what is, by definition, a subjective and individualised experience, without experiencing it myself. If we seek to understand experiences of total pain, potentially in order to understand how best to treat pain, then professionals in all disciplines should aim to facilitate the contributions of those who have experienced it, should they wish to take the platform.
I live with a condition that causes chronic physical and visceral pain,
but I recognise the concept of total pain and that physical pain is only one
part of the experience. I find it frustrating that the concept of total pain rarely
enters patient care or the language of individuals living with pain, as I feel
this would improve patient experience. Total pain only came into my own
vocabulary and understanding as a result of the work I do as a patient
advocate, consultant and co-researcher. Every human experience has a
psychological element, but we often don’t talk about the “total” experience of
life, not least the experience of total pain, which is unique to each
individual. Whilst we can gauge an understanding of the concept and notion of
the experience of total pain through research, patient narratives and other
tools, we cannot truly understand the experience for each individual. This is
especially so since we do not introduce the concept of total pain to patients
and give them the language and tools to express that experience. To me, total
pain encapsulates the interaction between and intersection of the physical
sensation, the psychosocial experience, the emotional element, the validation
of our pain by professionals, our past experiences, as well as our own
understanding of our pain. Spiritual pain is also something one must recognise,
not just in the context of religion but general spirituality, individuals’
beliefs and each person’s understanding of their world.
I’m a person with palliative care needs whose experience of pain improved when I came under palliative care; I had experienced the invalidation (perceived and/or actual) of my pain by professionals, until palliative care professionals validated my experience and began to manage my pain proactively. This then changed my relationship with my pain. Rather than consumed by it, I was able to live around it. I wish someone had explained total pain to me many years ago and in the process validated the total experience of pain – maybe I wouldn’t have rejected any notion of pain being anything other than physical and suffered less as a result.
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