Introduction: Pain is a common, multi-dimensional symptom which compromises quality of life for many patients with serious illness (1,2). Understanding the concept of total pain and its dimensions should be a prerequisite for clinicians who care for patients facing a life-limiting illness (2). This Fast Fact discusses the concept of total pain along with, evaluation and management strategies.
The concept of total pain: Nociception refers to neural encoding of impending or actual tissue damage (3). Pain refers to the subjective experience of actual or impending harm and is influenced by past experiences and expectations (3,4). A serious illness can fundamentally disrupt previously established expectations for the future. Dame Cicely Saunders, the founder of the modern hospice movement, recognized this and applied the term total pain as having physical, psychological, social, and spiritual components interacting upon one another (5-7). See the figure below used with the author’s permission (2). While clinicians often focus on the physical pain component, the effect of a life-limiting illness on the spiritual, social, and psychological components often gets overlooked. Consequently, treatable suffering may get missed or overmedicated.
The total pain experience – an interactive model: The interaction among total pain components is often complex, yet evident in patients with serious illnesses (2,8-15). For example, loss of hope can have a spiritual, existential, and psychological dimension which may compound the intensity of physical pain if the patient attributes pain with impending death. As suffering intensifies, the family’s sense of helplessness may compel them to visit the patient less frequently. Thus, physical pain may exacerbate social and psychological pain from a perceived sense of abandonment (8,12). Clinicians cannot fully care for patients with life-limiting illnesses without assessing for all domains of total pain. Since no one person or discipline can manage total pain, interdisciplinary teams (IDTs) are vital to address total pain.
Evaluation and management strategies of total pain: Listening to the patient’s illness narrative with unhurried presence is key to developing a therapeutic presence that fosters assessment of all four domains (16). Elizabeth Kubler-Ross taught that dying people commonly yearn for love, touch, and communication (16). She stressed the importance of not just pharmacotherapies and interventional-based analgesics, but sitting, listening, and holding hands to enable care for all components of total pain (16). See the table below for an example of each component can be assessed and addressed.
|Total PainComponent||Description||Manifestation||Example||Intervention towards resolution|
|Physical||Nociceptive, visceral, or neuropathic pain from known tissue injury (1)||Pain leads to impaired function and social isolation from fear of exacerbations away from home||Epigastric pain radiating to the back from unresectable pancreatic cancer||Celiac plexus block significantly improves patient’s pain and function (17).|
|Psycho-logical||Anxiety, hopelessness, helplessness from medical uncertainty (15,18).||Adjustment reactions, despair.||Disengaging from clinical care plan, spending excessive time searching the web||Meeting with the IDT for a serious illness discussion addressing what to expect and how the patient defines quality of life.|
|Social||Fear of dependency on family; loss of role as provider to family (19);||Loss of dignity and sense of worth (13).||Family conflict as the patient declines recommended care and voices an urgency to return home.||Facilitate discussions between patient and caregivers to help find solutions for the patient’s changing clinical status and family role (2).|
|Spiritual||Despair from inner realization that life is finite and without meaning (16)||Feelings of disconnection and abandonment by community/God.||Questioning the meaning of life and the dying process – “Why me?” (20)||Involve clinicians (e.g., social worker, psychologist, chaplain) with skill sets to enable exploration of the patient’s distress from dying (21).|
- Center to Advance Palliative Care. Available at https://www.capc.org/. Last accessed 2/2/2021.
- Mehta, A. and L. Chan, Understanding of the Concept of “Total Pain”: A Prerequisite for Pain Control. Journal of Hospice & Palliative Nursing, 2008. 10: p. 26-32.
- The International Association for the Study of Pain, T.F.o.T. and H.M.N.B. editors, Classification of chronic pain : descriptions of chronic pain syndromes and definitions of pain terms. 1994: Second edition. Seattle, Wash. : IASP Press, 1994
- Koyama, T., et al., The subjective experience of pain: where expectations become reality. Proc Natl Acad Sci U S A, 2005. 102(36): p. 12950-5.
- Saunders, C., The evolution of palliative care. Patient Educ Couns, 2000. 41(1): p. 7-13.
- Saunders, C., The evolution of palliative care. J R Soc Med, 2001. 94(9): p. 430-2.
- Saunders, C., The evolution of palliative care. Pharos Alpha Omega Alpha Honor Med Soc, 2003. 66(3): p. 4-7.
- Caraceni, A. and M. Shkodra, Cancer Pain Assessment and Classification. Cancers, 2019. 11(4): p. 510.
- Clark, D., ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Soc Sci Med, 1999. 49(6): p. 727-36.
- Greenstreet, W., The concept of total pain: a focused patient care study. British journal of nursing (Mark Allen Publishing), 2001. 10(19): p. 1248-1255.
- Klepping, L., Total pain: a reflective case study addressing the experience of a terminally ill adolescent. Int J Palliat Nurs, 2012. 18(3): p. 121-7.
- Lawlor, P.G., N.A. Lawlor, and P. Reis-Pina, The Edmonton Classification System for Cancer Pain: a tool with potential for an evolving role in cancer pain assessment and management. Expert Review of Quality of Life in Cancer Care, 2018. 3(2-3): p. 47-64.
- Mee, S., et al., Psychological pain: a review of evidence. J Psychiatr Res, 2006. 40(8): p. 680-90.
- Morse, J.M. and J. Penrod, Linking concepts of enduring, uncertainty, suffering, and hope. Image J Nurs Sch, 1999. 31(2): p. 145-50.
- Strang, P., et al., Existential pain–an entity, a provocation, or a challenge? J Pain Symptom Manage, 2004. 27(3): p. 241-50.
- Kubler-Ross, E., On death and dying. 1969, London: Routledge, 1989.
- Arcidiacono, P.G.G., et al., Celiac plexus block for pancreatic cancer pain in adults. Cochrane Database of Systematic Reviews, 2011(3).
- Dewar, A.L. and J.M. Morse, Unbearable incidents: failure to endure the experience of illness. J Adv Nurs, 1995. 22(5): p. 957-64.
- Howard, V., A holistic approach to pain. Nurs Times, 2001. 97(34): p. 34-5.
- Coyle, N., The existential slap–a crisis of disclosure. Int J Palliat Nurs, 2004. 10(11): p. 520.
- Chochinov, H.M., et al., Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Lancet Oncol, 2011. 12(8): p. 753-62.
Authors’ Affiliations: Johns Hopkins University School of Medicine, Baltimore, Maryland
Conflicts of Interest: None
Version History: first electronically published March 2021, originally edited by Sean Marks MD
Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.
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