Understanding “Total Pain” in the Context of Oncology Care

Patricia Jakel, RN, MN, AOCN, Co–Editor-in-Chief

Suppose you have a 45-year-old patient with triple-negative breast cancer, who has recently experienced a recurrence in her liver, causing her to restart treatment. Historically, she has experienced treatment-related pain, including peripheral neuropathic pain. She is also constantly preoccupied with worries for her young children, the irrational behavior of her mother toward her husband, and guilt over the financial burden of her disease and what it represents for her family.

One day, this patient arrives in the clinic, complaining of pain on her right side radiating to her back. Would you say she is experiencing social, emotional, spiritual, or visceral pain?

Pain emerged as an area of clinical specialization in the 1960s, and with research and clinical application, this led to a better understanding
of the individual meaning of pain.¹ By the 1970s, the field of pain had its own journal (Pain) and associa- tion (International Association for the Study of Pain). Providers began to acknowledge the impact of pain and sought out new ways to address it.

As we know, oncology nurses everywhere are advocates for relieving pain. Margo McCaffery taught millions of nurses that pain is “whatever the experi- encing person says it is, existing whenever and wher- ever the person says it does.”² An important concept to remember is that pain and suffering are related but not necessarily the same.

Dr Cicely Saunders, a professional trained in the 3 disciplines of nursing, social work, and medicine, coupled with a strong personal religious faith, developed the background for the concept of “total pain.” From Saunders’ work with dying patients, the concept of total pain was formulated to include physical, psychological, social, emotional, and spiritual elements. Total pain is a concept that has been used in hospice since 1960 and is now widely utilized in palliative care patient models.³

For example, Hospice of the Western Reserve utilizes the following 9 pillars of the total pain/hospice model:⁴

• The hospice model of care is based on the concept of total pain, which acknowledges that patients with serious and life-limiting illness suffer because of phys- ical, emotional, social, and spiritual sources of pain and suffering.
• Pain and suffering are related but not necessarily the same. Pain, whether physical or emotional, has a phys- iologic basis. On the other hand, suffering arises when we apply meaning to or tell ourselves stories about the pain we are experiencing.
• Pain can often be alleviated or improved with medi- cation, whereas suffering often is resistant to medi- cation. Failing to recognize the difference can lead to overmedication and oversedation of patients who have serious and life-limiting illness.
• Seriously ill patients and their families often resist the recommendation for a hospice referral because of concern about oversedation and overmedica- tion. Understanding the role of the hospice team in addressing total pain can enable the referring physi- cian to alleviate these concerns.
• Suffering can be successfully evaluated and treated
  by using a spiritual pain model that addresses the following 4 aspects: forgiveness, meaning, relatedness, and hope.
• Pain and suffering, particularly in the setting of terminal illness, often involves and affects the care- givers and the patients. The hospice team can be a valuable resource in terms of time and expertise in helping the referring physician address and manage the complex impact of pain and suffering on family relationships.
• The hospice transdisciplinary team is made up of compassionately skilled professionals from many disci- plines who work as a cohesive and integrated unit. This allows the patient and family to receive focused care that addresses the complexity of terminal illness.
• The appropriate management of suffering, especially spiritual pain, requires time and is best delivered by hospice involvement early in the course of a terminal illness.
• Appropriately timed referrals that allow sufficient time for hospice to do this important work are funda- mental to maximizing quality of life and achieving peace for both the patient and caregiver.

Although this model is referencing hospice/palliative care and is designed specifically for that setting, these same principles can and should be applied for all institu- tions treating for patients with cancer.

We care for patients who use pain medication to cope with a potential terminal diagnosis, reduce terror and anxiety, and escape from difficult family or financial situations. Oncology nurses must assess the total pain of their patients by considering the physical, psychological, social, emotional, and spiritual elements.

Back to the case study

Returning to the question of the young patient with breast cancer, it is fair to say she is experiencing all the aforementioned options. She will need assistance from the entire health care team to alleviate her total pain, alongside her chronic and acute pain.

Fortunately, this is where oncology nurses can truly make all the difference. By remaining vigilant in assessing fatigue, nausea, constipation, sleep, and sexual relationships, we can create a comprehensive profile of this patients’ total pain assessment and consequently provide a more thoughtful and comprehensive care strategy for our patients.

References

1. Collier R. A short history of pain management. CMAJ.2018;190(1):E26-E27. doi:10.1503/cmaj.109-5523
2. McCafferty M. Nursing Practice Theories Related to Cognition, Bodily Pain, and Man-Environment Interactions. 1968.
3. Ong CK, Forbes D. Embracing Cicely Saunders’s concept of total pain.BMJ. 2005;331(7516):576. doi:10.1136/bmj.331.7516.576-d
4. The total pain model - 9 key points. Hospice of the Western Reserve. September 2020. Accessed March 10, 2022. https://bit.ly/3MR66Q2
5. Goebel JR, Doering LV, Lorenz KA, Maliski SL, Nyamathi AM, Evangelista LS. Caring for special populations: total pain theory in advanced heart failure: applications to research and practice. Nurs Forum. 2009;44(3): 175-185. doi:10.1111/j.1744-6198.2009.00140.x