When Opioids and Regional Anesthesia Are Not Enough: A Case Report About “Total Pain” and the Merits of Multi-Professional,Multi-Dimensional,Patient-Centered Care

Abstract

Background:

The concept of “Total Pain” encompasses the interplay of physical, emotional, social, and spiritual suffering in palliative care patients. This case demonstrates how identification and consideration of “Total Pain” components by multidimensional and multiprofessional care may even make previously installed traditional pain management with regional anesthesia unnecessary.

Case Description:

An 80-year-old male with advanced bone-metastasized prostate cancer presented with severe pain in various regions of the body, refractory to comprehensive pharmacological pain management, including intrathecal anesthesia. A comprehensive approach in specialist palliative care addressed the patient’s emotional, social, and spiritual needs. Intrathecal analgesia could be weaned off, and instead oral opioids and co-analgesics could be established.

Conclusion:

Pain in advanced illness, when unresponsive to pharmacologic and invasive pain management, may be driven by multi-dimensional aspects of “Total Pain.” The identification and consideration of “Total Pain” by multi-dimensional and multi-professional care can be the key to alleviate these patients’ suffering.

Key Findings

Ineffective opioid therapy for cancer pain not correlating to clinical findings may indicate “Total Pain.”

Active, empathetic listening with respect for the patient’s individuality, biography, and values can help uncover burdens and activate existing resources.

The acknowledgment of “Total Pain” as a concept and addressing it in a holistic, multiprofessional manner may in some cases make previously installed ineffective traditional pain management, such as regional anesthesia, unnecessary.

Introduction

Pain is a frequent and sometimes disastrous consequence of advanced cancer. ¹ Despite adequate treatment in line with the World Health Organization recommendations ² and even with the addition of regional anesthetic measures, ³ 10–15% of cancer pain patients may not be adequately relieved from their pain. ⁴

It is known that pain must be understood and addressed holistically, considering its multifaceted nature. In advanced, life-limiting illnesses, psychological, social, spiritual, and existential factors play significant roles. The concept of “Total Pain,” introduced by Cicely Saunders, the founder of the hospice movement and a key figure in palliative care, reflects this comprehensive perspective.^5,6 To enable effective pain management, it is crucial to convey this concept to patients, their informal caregivers, and health-professionals avoiding a reduction to a purely physical understanding of pain.

CARE guidelines for reporting case reports were followed. ⁷

Case Description

An 80-year-old male patient of Southeast European origin was admitted to our specialized inpatient palliative care unit. He was fluently speaking German. Previously, he had been diagnosed with advanced prostate cancer and extensive osseous and locoregional metastases, for which further tumor-directed therapies were not anymore indicated. Due to severe cancer pain, he had undergone unsuccessful treatment with strong opioids, co-analgesics, and an intrathecal (i.t.) catheter delivering opioids and local anesthetics. The i.t. morphine therapy (0.1 mg/h, equivalent to ∼720 mg/day oral morphine equivalent, depending on conversion factors) was reduced and later paused due to presumed opioid-induced pruritus while local anesthetics were continued. Discussions on realistic goals for further chemotherapy or immunotherapy were described as “challenging” or “futile” by the treating oncology team and a palliative care consultant of the academic center where he had been treated. In this situation he was referred to our specialist palliative care ward.

On admission, the cachectic patient presented in reduced performance status (Eastern Cooperative Oncology Group 4). There was inconsistent percussion tenderness over the axial skeleton and kidney areas. Diffuse, left-sided hyposensitivity was noted in the legs, not confined to a specific dermatome. Muscle strength was graded as on the Medical Research Council scale M3/5 in the right leg and M1/5 in the left leg. He was alert and completely oriented but reported severe, diffuse pain, varying in location (legs, pelvis, and flanks) up to a numeric rating scale (NRS 0-10) of 10. He initially avoided conversation about his well-being, resources, and potential sources of distress other than pain.

Later that afternoon, he engaged in a second conversation with the attending physicians in the company of his daughter. He expressed a vague wish for “something to happen” but struggled to articulate specific goals of the “therapies” he was hoping for. When asked about the objectives of the desired therapies as well as his personal believes and values, he was given minutes in silence to answer and think about the potential answer. He expressed awareness of his deteriorating physical condition, saying his body “could no longer go on,” that life and death were “in god’s hands,” and it was “time to go.” As he mentioned the upcoming end of his life, he shed tears, seeking physical connection with his family and one of the attending clinicians. This spiritual perspective was acknowledged and mirrored back without offering quick solutions or minimizing his emotions. Later during this communication, the patient expressed specific wishes for his funeral arrangements. Remarkably, when asked about the presence of pain at the end of the discussion, he stated he was free of pain.

A few days after admission, during discussions with the patient and members of various professions of the multiprofessional team (i.e., psychology and spiritual care), the patient’s relief from existential and spiritual distress became evident. His average pain scores were reduced to around 4/10 (NRS) while the intrathecal bolus counts remained stable (Fig. 1). The multiprofessional team concluded that “Total Pain” might have been a significant factor in his suffering. The patient was initially emotionally overwhelmed due to the gratitude for pain relief and the compassionate care provided. He expressed both a desire for life and an acceptance of death as being coexisting. Pain remained a less prominent concern since the initial conversation. The multiprofessional team, including psychologists, physiotherapists, spiritual care providers, and social workers, played a crucial role in addressing his multidimensional needs, incorporating elements of Dignity Therapy. ⁸

FIG. 1.

Clinical course of pain and mobility scores in relation to analgesic regimen. Numeric Rating Scale (NRS) scores for pain (orange area, left y-axis) and mobility (green bars, right y-axis) over 16 days of inpatient care. Analgesic interventions included PCA bupivacaine 0.5% at 0.1 mg/h with variable daily boluses (yellow arrows), subcutaneous (s.c.) and later oral (p.o.) hydromorphone (blue arrows), and escalating doses of oral pregabalin (light blue arrows). A marked reduction in pain and gradual improvement in mobility is observed following multimodal adjustments, including tapering of local anesthetic boluses and opioid conversion.

Subcutaneous hydromorphone was initiated at 2 mg/day (∼20 mg/day oral morphine equivalent) while i.t. bupivacaine was continued. No acute pain exacerbation occurred during these days.

Although pain control appeared adequate with intrathecal buprenorphine (11–17 boluses per day), it likely contributed to significant weakness in both legs, rendering the patient unable to mobilize. Given that effective pain management had not been achieved for many weeks, we faced a difficult decision: either maintain the current analgesic regimen or gradually wean the intrathecal catheter to restore mobility and potentially facilitate the patient’s discharge home, in alignment with his wishes.

Recognizing “Total Pain” as possibly the major driver of suffering in the patient influenced our decision to start weaning the intrathecal catheter. This decision-making process was guided by a multiprofessional team meeting including all professions involved in the care of the patient. The potential for improved mobility and eventual discharge home was weighed against the risk of pain exacerbations. Following these discussions, they engaged the patient and caregivers in a shared decision-making process, and all agreed to discontinue the intrathecal catheter. Nurses, one psychologist, a social worker, and palliative care physicians worked together closely accompanying this process. They informed the patient and caregivers multiple times that weaning of the local anesthetic bupivacaine could be achieved by gradually reducing daily boluses and that such tapering could be stopped and reversed at any moment. At the same time, they increased the continuous subcutaneous hydromorphone infusion from 5 mg to 8 mg/24 h and offered additional hydromorphone boluses, which ultimately were not required. Eventually, pain management was switched from subcutaneous to oral hydromorphone (16 mg/day), which led to an increase of average pain scores. Pregabalin was started at day 10 with a 50 mg daily dose for residual neuropathic pain and, in the absence of adverse effects, was consequently increased to 125 mg/day. However, improved mobility due to cessation of subcutaneous and intrathecal therapies allowed the patient to walk with a walking aid, and he enjoyed visits from different members of his large family (Fig. 1): mobility scores on a scale from 0 to 10 (0 meaning no mobility at all, 10 meaning normal mobility) improved from 0 at days 1–9 to 6 when the patient was released.

Encouraged by his increased physical well-being and reduced suffering, discharge planning to his home was initiated. An outpatient support network was established, including specialist home palliative care and contingency planning including symptom control schedules for potential medical emergencies. The patient was discharged home, supported by his family.

Three weeks later, the patient had to be readmitted to the palliative care ward due to a significant decline in general condition, making home care unfeasible. He had enjoyed and valued his time at home. Pain was no longer a major concern. He passed away peacefully on the 14th day of hospitalization of his second stay on the palliative care ward, accompanied by family members.

Discussion

This case highlights the multidimensional nature of pain in life-limiting illness (“Total Pain”), and the limitations of traditional analgesic management. Despite potential somatic origins, the patient’s pain was also rooted in existential distress. His reflections on illness and death underscored the spiritual dimension, while psychological pain from loss, hope, and fear manifested in frequent crying. Providing time and acceptance enabled him to express these emotions. “Total Pain” was key to understanding his suffering and guiding care. ⁶ While a few similar cases exist,^9–11 none demonstrate how a multidisciplinary approach allowed discontinuation of intrathecal therapy. As a single case, our findings remain nongeneralizable, and the factors contributing to improvement are complex.

The pathophysiological mechanism by which emotional states such as anxiety and existential distress may influence pain perception are not well understood. Yet, just as in neuropathic pain, proposed mechanisms involve a strong interplay of brain regions that are involved in pain perception on the one side and structures involved in emotional regulation on the other. These include subdivisions of the primary and secondary somatosensory cortex and subcortical structures such as the cingulate gyrus, amygdala, and hippocampus—the limbic system. ¹² Specifically speaking, neuroimaging demonstrates that perceived emotions such as pain and anxiety can alter pain-evoked activation, for example, in the anterior cingulate cortex. ¹³ Furthermore, a descending inhibitory pathway involving the amygdala is downregulated in patients with chronic pain. ¹⁴ Likewise, additional mechanisms implicated in chronic pain, such as central sensitization and neuroinflammation ¹⁴ might play a role in patients perceiving “Total pain.”

Acknowledging and empathizing with the patient’s emotional expressions, combined with multiprofessional support, likely contributed to the observed relief over time. Establishing a foundation of trust and identifying the right moments for deeper conversations were essential. The “Intensive Caring” model ¹⁵ and Dignity Therapy ¹⁶ offer frameworks for empathic, value-centered care, applicable across various palliative care settings.

Saunders’s valuable concept of “Total Pain” was highly influenced by Viktor Frankl who thought that meaning was the antidote to suffering and we could choose how to respond to it. ¹⁷ However, the concept may unintentionally contribute to suffering for patients who struggle to come to terms with the end of life and are unable to find peace in its acknowledgment. For these patients, validating and normalizing their specific experience, e.g., not wanting to let go, may be a source of relief. ¹⁸ It is of utmost importance to emphasize that not all refractory pain is “Total Pain,” even when somatic causes appear to be excluded. Clinicians should also consider unknown or evolving somatic causes and other mechanisms such as opioid hyperalgesia. To prevent undertreatment of pain, weaning of intrathecal therapies should only be considered in specialized environments with the capacity of close monitoring. Moreover, the impression that “Total Pain” may substantially add to the patients’ pain perception must be critically weighed. A nihilistic, paternalistic attitude that may result in insufficiently treated physical pain (i.e., by regional anesthesia and potent medication beyond opioids) must be prevented at any times.

Psychological interventions employed by our multiprofessional palliative care team, such as cognitive-behavioral therapy components, relaxation with imagery, and self-hypnosis, have been shown to reduce pain in people with advanced cancer. ¹⁹ However, most studies have cross-sectional designs and do not focus on end-of-life situations, making it difficult to determine if psychological factors lead to increased pain or vice versa. ¹⁹ Future research should focus on closing this evident gap through longitudinal study designs.

Conclusion

In conclusion, pain in life-limiting illnesses extends beyond the physical, encompassing emotional, psychological, social, spiritual, and existential aspects (“Total Pain”). Often, the deeper suffering behind pain is not immediately conscious or easily expressed. When opioid therapy alongside other pharmacological and nonpharmacological interventions is ineffective and pain does not align with clinical findings, “Total Pain” should be considered. Addressing “Total Pain” holistically with a multiprofessional approach may sometimes reduce the need for traditional pain interventions like regional anesthesia.

Authors’ Contributions

C.B., E.O., J.G. contributed equally to the article’s preparation.