‘Total Pain’ as the Pain of a Lifetime
This post looks at Cicely Saunders’ influential term ‘total pain’ in terms of endings and limits. ‘Total pain’ articulates how pain for someone whose life is ending is a whole overwhelming experience which combines physical, psychological, social and spiritual elements. My own PhD project looks at how Saunders used ‘total pain’ to champion the modern hospice movement and how this evocative phrase has come to be used and understood in a variety of ways in the wider contexts of end-of-life and palliative care.
At an obvious level, ‘total pain’ is a holistic term which appreciates that a dying person’s pain is conditioned by the context of their whole life and the fact of its ending. As I wrote in a previous post on this blog, the term was an attempt to remind medical professionals that ‘the dying patient is a person too, with a present body, an existing social network and a complex past, all of which may contribute to their current pain’.
However, we can perhaps use ‘total pain’ to think more broadly than this. Saunders saw herself in a tradition of person-centred medicine advocated by doctors such as Paul Tournier or William Osler, and ‘total pain’ is often still used today alongside other terms which encourage a sense of the patient as a person, such as ‘total’, holistic or whole-person care. But where does a person begin and end and how do you care for the whole of them? And how do you define the limits of a pain that is ‘total’?
Saunders certainly understood pain to go beyond the dying person’s physical body. Her account of social pain is interpersonal, extending out to include family, friends, and even other patients and staff, who also experience the ‘long pain’ of bereavement and mourning. ‘Total pain’ is also longitudinal, encompassing what some call biographical pain (see (Johnson, 2013)) that involves pain which is accumulated over a person’s lifetime. In this post, I want to consider how ‘total pain’ understood in this way as a pain that ranges across time and between people might be a useful phrase not just for describing the extinction of an individual’s life but for articulating our relation to larger-scale versions of extinction during the coronavirus pandemic and the climate emergency.
Unmaking the World
Writing in 1995 about holistic ideas of pain, health researcher and nurse specialist Anne Lanceley talks in the same breath about ‘total pain’ and the end of the world. Reacting to interpretations of ‘total pain’ that assume it is simply the sum of its four parts, she writes how pain is ‘anything but a clearly boundaried, knowable, ‘whole’ phenomenon’ (Lanceley, 1995, p. 156), and quotes from Elaine Scarry’s canonical book, The Body in Pain, in which Scarry writes that ’what is quite literally at stake in the body in pain is the making and unmaking of the world‘ (Scarry, 1985, p. 23). Lanceley uses Scarry’s words to imply that the interrelated complexity of pain challenges a person’s sense of self in such a way that requires them to reassess their life and their relation to the world.
When Saunders introduced ‘total pain’ she often used the words of one of her patients, Mrs Hinson, that echo this sense that pain seems, if only temporarily, to overwhelm everything else: ‘the pain began in my back, but now it seems that all of me is wrong’. What is so powerful about Mrs Hinson’s words, and presumably the reason that Saunders used them so often, is how they express that when pain is associated with dying it is bound up with the patient’s wider life which is coming to an end. As a result, Scarry’s making and unmaking of the world seems even more pressing when there may not be time to remake it. By claiming that all of her was wrong, Mrs Hinson was effectively describing how she felt her whole world was coming to an end.
The End of the World
‘Total pain’ and ‘all of me is wrong’ feel like they have taken on additional meaning as a result of the coronavirus pandemic. The pandemic has brought death and loss to the forefront of all our minds and, in combination with a toxic political landscape and daily indications that our planet is struggling under the effects of anthropogenic (human-caused) climate change, you could be forgiven for thinking it’s the end of the world.
While many assume the ‘total’ of ‘total pain’ or the ‘whole’ of whole person care mean it is possible to knowing everything about another person, my research suggests that, rather than indicating that Mrs Hinson’s pain can be calculated or summarised, Saunders is using ‘total’ to show that her pain is so complex that it is impossible to measure. Unlike postoperative pain which is directed towards healing and so can be assigned meaning, ‘total pain’ is part of an ongoing situation from which the individual is unlikely to escape without help and which Saunders claims consequently ‘seems to be meaningless as well as endless’ (Saunders, 1967, p.14). Regardless of how you’ve been affected by events of 2020, the wholesale shift into a ‘new normal’ that removes many of our methods of consolation and support makes the idea of a total overwhelming pain shared by a larger community seem suddenly relevant.
Moreover, like a terminal diagnosis, our new normal doesn’t look like it will disappear anytime soon. Scientists believe that Covid-19 was caused by human exploitation of Earth’s resources and the rapid spread of the disease is attributable to globalised travel and supply chains. This makes it highly likely that there will be more pandemics like this one (Settele et al., 2020). Even without another pandemic, human suffering and deaths related to climate change are increasing. Global heating, increased pollution, extreme weather events, flooding and unpredictable harvests all affect health outcomes. Moreover, advanced healthcare systems, particularly in the Global North, are significant polluters and therefore part of the problem: for example, the NHS produces 5.4% of the UK’s carbon emissions. Conversely, many of the factors which mitigate climate change improve the prospects of, for instance, cancer patients, such as better air quality or lower red meat consumption (Nogueira, Yabroff and Bernstein, 2020). Death and climate change are closely linked.
Homesick for a Dying Planet
In a newspaper article earlier this month, researchers used the term ‘solastalgia’ to describe the ‘deep pain’ of vulnerable populations whose way of life is being effaced by climate change. The environmental philosopher Glenn Albrecht coined solastalgia to describe a homesickness for the home you still occupy but which environmental changes, such as habitat destruction and species extinction, have altered beyond recognition (Albrecht et al., 2007). The term captures a pain related to the loss of history and traditions and sense of place that is shared by a community.
Cicely Saunders was fascinated with the more familiar word that inspired Albrecht’s term, nostalgia, which literally means ‘homecoming-pain’ or homesickness – she even read a whole book on the subject (Harper, 1966). Although nowadays seen as a mood rather than a disease, nostalgia started with a definable pathology as a sickness associated with missing one’s homeland. It was common among mountainous people (sometimes attributed to a discrepancy in atmospheric pressure between a sufferer’s homeland and their new life on the plains) and was even listed in early volumes of the Diagnostic and Statistical Manual of Mental Disorders (DSM). Saunders understood death as a kind of homecoming (for her to the Kingdom of Heaven) but also that dying meant loss of your life as you knew it. Like solastalgia, ‘total pain’ communicates how the natural reaction to the loss of your home on this earth is perhaps a crippling despair.
The Second Body
All three of these terms – solastalgia, nostalgia, and ‘total pain’ – foreground how the body is affected by a total change in environment. In some ways this is a straightforward suggestion. Holistic ideas in medicine like ‘total pain’ originate in part from concepts like Walter Bradford Cannon’s homeostasis which rely on understanding that bodies self-regulate by reacting to a given situation as a dynamic complex whole, including physiological and psychological responses that are specific to both them and their environment (Geroulanos and Meyers, 2018). Inspired by these ideas and her practical background as a nurse and a medical social worker, Saunders was intensely aware of the affective power of a person’s surroundings. She paid detailed attention to the built environment of St Christopher’s, the hospice she founded in 1967, making sure that all rooms had lots of natural light and that beds could be wheeled out into the sun. She foregrounded the social importance of tea or alcohol as well as noting the benefit not only of medical interventions but of a particular homely atmosphere of security and ‘warm acceptance’ (Saunders, 1965, p. 150). In combination with the social component of ‘total pain’, such attention to the space around a patient seems to suggest that a person’s experience of ‘total pain’ is intrinsically environmental, closely related to the objects and people that surround them.
In light of solastalgia and the climate emergency, perhaps we can take ‘total pain’ further and extend this sense of the wider environment outwards. In her book The Second Body (2017), Daisy Hildyard suggests that we have two bodies. The first is your physical body which eats and drinks and sleeps and is bounded by your own skin. The second is more diffuse but found in the global effects and implications that this first physical body has in the rest of the world: from biodiversity loss due to rainforests felled for the crops your body eats to the garment worker injured making what you wear or the smoke that fills the sky above the power plant that provides the electricity for the operation that saved your life. Hildyard uses this idea of a second body to demonstrate how we have a presence in the rest of the world as a result of the acts of consumption which our own first body requires.
The second body is really just Hildyard’s conceptual device rather than a thinking feeling ‘embodied’ entity. However, it is interesting for considering the limits of ‘total pain’ in a globalised world where everyone, particularly those in the Global North, is implicated in chains of pollution, exploitation and extinction. If our bodies and their effects stretch outwards like Hildyard’s second body, the aims of the whole-person care implied by ‘total pain’ might then not stop at that individual’s symptom management or their family problems, but extend to the viability of the ecosystem they leave behind (indeed, of which their physical body will become part after death) or their despair at the suffering their children may undergo as a result of the environmental changes to which their lifestyle has contributed. It involves the effects they’ve had across their lifetime and extends to care for each of the communities of which they’ve been a part. As my colleagues have suggested, thinking about palliative care in terms of public health is sometimes simply a ‘policy bandwagon’. Yet, if we consider the possibilities of intergenerational or global collective experiences of pain, public health might be a self-evident way of approaching a ‘total’ experience of pain.
Ecologies of Pain
Rather than simplifying a person’s ‘total pain’ to a checklist of physical, psychological, social and spiritual, extending our sense of the person outwards like this affirms its unique complexity. Sociologist Yasmin Gunaratnam values ‘total pain’ as a means of articulating how various aspects of a person’s pain exist in ‘a mysterious ecology’ in which it is not always possible to understand how one aspect of pain relates to or is distinct from another (2012, p. 115). Gunaratnam’s words capture the similarity of ‘total pain’ to the current climate emergency and the way that issues such as biodiversity, pollution, or global heating are often too vast, too localised or too complicated for our current scientific knowledge to fully understand. Instead, understanding ‘total pain’ as ecological makes clear the close interdependence of factors, despite them being unpredictable or even unknowable.
In this way, ‘total pain’ could appear unhelpfully limitless. However, my reading of Saunders’ published works suggests the term is already part of her wider critique of modern society as obsessed with individualism and materialism. Saunders frequently utilises a lexicon of mystery and excess which gestures beyond boundaries or limits towards the infinite. This comes in part from her Christian faith – ‘[t]he spirit is more than the body which contains it’ (1961, p. 396) – but also from her conception of how pain functions. She cites William Noordenbos who inspired Melzack and Wall’s influential gate control theory of pain: ‘Pain is experienced when stimuli, whatever their nature, exceed certain limits […] might it not simply be stated that painis too much?’ (1959; cited in Saunders, 1964, p. 16). By communicating the ‘too much-ness’ of modern dying, the value of a term like ‘total pain’ might be precisely because it expresses how deeply our own personal embodied experiences are imbricated in the lives and histories of everyone and everything who shares this planet with us. More pressingly, it articulates how our particular moment of globalised consumption and high-tech medicalisation, emerging infectious diseases and increasing climate change, affects the way we die.
An Eco-System that is Terminally Ill
Saunders never articulated any ideas she might have had about ‘total pain’ in relation to global pandemics or environmentalism. Born in 1918, she missed the Spanish Flu and came from the last human generation for whom changes in ecosystems were remote possibilities rather than alarming real-life events. Yet, that does not mean her ideas are irrelevant.
Some have used hospice as a metaphor for how to deal with the imminent end of the human race. Ecologist Guy McPherson picks up on the work of Stephen Jenkinson who believes that we have lost our relation to cycles of life and death, and that we need to embrace grief rather than suppress it. McPherson suggests that hospice, i.e. an approach which understands that death is inevitable and tries to make what life is left free from pain, is the only way to respond to the climate emergency. Indeed, he believes that a hospice approach is a way of accepting our fate and becoming ‘hope-free’ (McPherson, 2019).
Unlike McPherson, Cicely Saunders believed that hope ‘can exist in different forms’, even if that new hope includes your own imminent death (Saunders, 1982). Likening a hospice patient’s death to a soldier’s death in war, she concluded ‘such a death is not just an end in itself, it must also be made creative for others, for the future’. I believe that being aware of and capable of experiencing the broad-ranging version of ‘total pain’ that I have described in this blog post is not all doom and gloom. Indeed, it might even be hopeful.
Understanding ‘total pain’ as expressing the end of the world more broadly in this way might be useful for coordinating our responses to seemingly irrevocable losses of species and habitats. A recent article by conservationists in the US suggests that current resource allocation in species conservation tends to follow a triage model in which certain at-risk species and environments are prioritised because they have a better chance of recovery. However, the researchers argue that the holistic outlook of the hospice model might offer a better way forward. Although the hospice model is already being used for some high-profile animals that are unlikely to survive, such as cheetah or rhinoceros, the researchers point out that hospice patients often live longer than similar patients who do not receive hospice treatment. The case-based attention exemplified by the specificity of ‘total pain’ would encourage more attention to the local ecological context and habitat and better understanding of the traditional knowledge of indigenous peoples (Peterson, Bruskotter and Rodriguez, 2020).
care for an individual’s ‘total pain’ could extend to campaigning for social
and environmental justice in a modern world that often disallows it. As early
as 1991, Douglas MacDonald wrote in The American Journal of Hospice and
Palliative Care outlining how the holistic outlook of the hospice movement
could be used to frame wider environmental challenges in the world. MacDonald
suggested that hospice was well placed to combat anthropocentrism,
hyper-individualism, relentless economic growth and the cult of technology,
claiming that we are living in ‘an ecosystem that is terminally ill’ (1990).
MacDonald’s ideas are echoed more recently by philosopher Eric Cazdyn, who suggests that the dominant mode of experience, at least in the Global North, is of ongoing crisis management, powered by the consumption encouraged by capitalism and inspired by our denial of death, which he terms the ‘new chronic’. In place of the ‘new chronic’ which fosters political apathy so that we are ‘forever sick’ (2012, p. 5), Cazdyn proposes we aspire to a ‘palliative present’. Modelled on terminal palliative care and the understanding that death is inevitable but need not be intolerable, instead of denying death, it focuses on seemingly ‘noninstrumental acts’ performed in the present with an awareness that they may only be a solution for the moment (2012, p. 46).
Like Cazdyn, Saunders implies that small changes that make some improvement in the present can have profound lasting effects. She describes the joy of a bedbound patient who was helped to create an impromptu ‘face-scratcher’ out of a roll of cardboard and a handkerchief, or the benefit to a patient’s whole family of being allowed to share a last meal. These are interim solutions which make a person’s experience of dying bearable, but they have broader ramifications for Saunders in changing societal attitudes towards death and dependence, however incrementally. In doing so, they foster resourcefulness and demonstrate the possibility of doing some good.
Similarly, little behavioural changes or small decisions to help, such as joining Covid Mutual Aid or reducing plastic waste, will not end crises immediately but they will make a small difference and can contribute to much-needed change in the future. For example, social scientists John Barkdull and Paul Harris suggest that an ecological for-the-moment hospice approach will help those humans who are left survive the coming mass extinction (Barkdull and Harris, 2015). A ‘palliative present’ accepts the almost boundless nature of ‘total pain’ or the climate emergency but also demonstrates a trust in shared dependencies and asserts the possibility of finding time to do something about painful experiences. While many of us may currently be able to identify with the feeling that ‘all of me is wrong’, as Saunders often writes, it is never true to say that there is ‘nothing more to be done’ (Saunders, 1978, p. 1).
 ‘My Encounter With A Pole’, typescript written in the early 1960s, K/PP149/1/7, Cicely Saunders collection, King’s College London Archives
Albrecht, G. et al. (2007) ‘Solastalgia: the distress caused by environmental change’, Australasian psychiatry. Taylor & Francis, 15(sup1), pp. S95–S98.
Barkdull, J. and Harris, P. G. (2015) ‘Climate-induced conflict or Hospice Earth: the increasing importance of eco-socialism’, Global Change, Peace & Security. Routledge, 27(2), pp. 237–243. doi: 10.1080/14781158.2015.1019442.
Cazdyn, E. (2012) The already dead: The new time of politics, culture, and illness. Durham: Duke University Press.
Geroulanos, S. and Meyers, T. (2018) The Human Body in the Age of Catastrophe: Brittleness, Integrations, Science, and the Great War. Chicago: University of Chicago Press.
Gunaratnam, Y. (2012) ‘Learning to be affected: Social suffering and total pain at life’s borders’, Sociological Review, 60(SUPPL. 1), pp. 108–123. doi: 10.1111/j.1467-954X.2012.02119.x.
Harper, R. (1966) Nostalgia: an Existential Exploration of Longing and Fulfilment in the Modern Age. New York: Harper.
Hildyard, D. (2017) The Second Body. London: Fitzcarraldo Editions.
Johnson, M. (2013) ‘Biography and generation: Spirituality and biographical pain at the end of life in old age’, in Kinship and cohort in an aging society: From generation to generation. John Hopkins University Press, pp. 176–190.
Lanceley, A. (1995) ‘Wider issues in pain management’, European Journal of Cancer Care, 4(4), pp. 153–157. doi: 10.1111/j.1365-2354.1995.tb00086.x.
MacDonald, D. (1990) ‘Hospice, entropy, and the 1990’s: Toward a hospice world view’, American Journal of Hospice Care. Sage Publications Sage CA: Thousand Oaks, CA, 7(4), pp. 39–41.
McPherson, G. R. (2019) ‘Becoming hope-free: Parallels between death of individuals and extinction of homo sapiens’, in Clinical Psychology Forum, pp. 7–11.
Nogueira, L. M., Yabroff, K. R. and Bernstein, A. (2020) ‘Climate change and cancer’, CA: A Cancer Journal for Clinicians. Wiley Online Library, 70(4), pp. 239–244.
Noordenbos, W. (1959) Pain: Problems pertaining to the transmission of nerve impulses which give rise to pain: Preliminary statement. Elsevier Pub. Co.
Peterson, M. N., Bruskotter, J. T. and Rodriguez, S. L. (2020) ‘Conservation Hospice: A Better Metaphor for the Conservation and Care of Terminal Species ’, Frontiers in Ecology and Evolution , p. 143. Available at: https://www.frontiersin.org/article/10.3389/fevo.2020.00143.
Saunders, C. (1961) ‘A Patient’, Nursing Times, (31 March), pp. 394–7.
Saunders, C. (1964) ‘The Depths and the Possible Heights’, Medical News, (10 July 1964), pp. 16–7.
Saunders, C. (1965) ‘Telling Patients’, District Nursing, (Sep), pp. 149–54.
Saunders, C. (1967) ‘The Management of Terminal Illness’. London: Hospital Medicine Publications Ltd, pp. 1–29.
Saunders, C. (1978) ‘Appropriate Treatment, Appropriate Death’, in Saunders, C. (ed.) The Management of Terminal Disease. London: Edward Arnold, pp. 1–9.
Saunders, C. (1982) ‘Principles of Symptom Control in Terminal Care’, Medical Clinics of North America, 66(5), pp. 1169–83.
Scarry, E. (1985) Scarry, Elaine, The Body in Pain: The Making and Unmaking of the World. Oxford: Oxford University Press.
Settele, J. et al. (2020) COVID-19 Stimulus Measures Must Save Lives, Protect Livelihoods, and Safeguard Nature to Reduce the Risk of Future Pandemics’, The Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services. Available at: https://ipbes.net/covid19stimulus.