Top Ten Tips Palliative Care Clinicians Should Know About Total Pain

Abstract

“Total pain” is a fundamental concept in palliative care. It emphasizes the multidimensional nature of pain and suffering in patients with advanced illnesses. Originally introduced by Dame Cicely Saunders, the spectrum of total pain extends beyond pure physical pain to further encompass psychological, social, and spiritual distress. By focusing on the above four components of total pain, clinicians can provide better care for their patients with advanced illnesses and ultimately improve their overall quality of life. Compiled by a multidisciplinary team of experts in the field, this article provides ten key strategies (tips) for palliative care clinicians to enhance their understanding and management of total pain in clinical settings.

Introduction

Total pain is a widely used concept in palliative care settings. It represents the multifaceted nature of pain and suffering often experienced by patients with advanced illnesses. Dame Cicely Saunders initially used this term in the 1960s to point to psychological, social, and spiritual domains of a patient’s perceived pain.^1,2 Her work with terminally ill cancer patients further stressed the overlap of these domains and the need for comprehensive approaches focusing on all these domains to alleviate overall suffering in such patients. This concept of total pain has been further validated by future research and practical clinical work in various palliative care settings.

To understand total pain, it is imperative to understand that in a patient with an advanced or terminal stage of an illness, the patient’s overall distress is rarely limited to just physical pain symptoms. It usually also involves psychological, social, and spiritual domains. The psychological domain presents with symptoms of anxiety, depression, and existential fear, which often overlaps with the social domain and presents with issues such as social isolation, strained personal relationships, and even financial burdens. ³ This is further aggravated by distress from the spiritual domain where the suffering often presents with the patient questioning their lifelong belief systems, and the loss of meaning in everything near and dear to them. ⁴ Such a complex interplay of symptoms from all these domains leads to overwhelming total pain in patients with advanced illnesses. With such a multifactorial etiology, its management subsequently requires a multifaced and multidisciplinary approach for optimal clinical management.

In practical clinical settings, managing total pain involves treatment with multiple pharmacological and nonpharmacological strategies that are tailored to individual patients’ needs. It starts with a detailed history and review of systems or using simple clinical tools such as the Edmonton Symptom Assessment System that can help clinicians in the identification of various symptomatic underpinnings of total pain. In addition to analgesia for physical pain, the patients often require psychological symptom management with counseling; social support via social workers; and expert spiritual support by chaplaincy services. Such collaborative and multidimensional care can cover all significant aspects and domains of total pain and provide far superior clinical care for the management of suffering at advanced stages of illness.

This article discusses various theoretical concepts related to the domains of total pain, and strategies for early identification. It also talks about multiple collaborative expert strategies for optimal management of total pain emanating from the individual and the combined impact of all these domains.

Tip 1: Provide a Safe Space and Listen Actively to Better Understand the Patient’s Pain Narrative; Use Open-Ended Phrases (e.g., “Tell Me More”) to Gain a Comprehensive Understanding and Validate Their Emotional Expression of Pain

Pain is a common symptom in advanced illnesses and end-of-life situations regardless of the underlying disease process. ⁵ Various tools such as the numerical pain scale and visual analog scale are available to assess a patient’s pain level. Similarly, in cognitively impaired persons, the Pain Assessment in Advanced Dementia scale is available for pain evaluation. Although these tools may be helpful in quantifying physical pain symptoms, they are not useful in quantifying or assessing “total pain” given the psychological, social, and spiritual dimensions of pain. ⁶

Since many physicians often feel inexperienced in discussing end-of-life situations with patients, communication skills training can improve their ability to show empathy and discuss such aspects of care in advanced illnesses. ⁷ A relevant communication strategy in eliciting an effective pain history first involves providing a safe space and listening actively. This includes showing the patient that this discussion is important to you by taking a seat close to them, putting away one’s cell phone or computer, and assuring that the patient is in a comfortable place to have this discussion. Second, eliciting a detailed pain history by using open-ended phrases such as “tell me more” followed by active listening and empathic verbal responses and nonverbal communication cues is helpful in gaining a comprehensive understanding across patients’ total pain domains. The NURSE (Name, Understand, Respect, Support, Explore) can provide an effective strategy for engaging with the patient’s emotional state while eliciting a comprehensive history of symptoms. ⁸ Third, it is very helpful to create an emotional connection to the unique patient situation and validate its emotional expression to unburden the patient’s distress and reduce the overall pain experience. ⁶ Finally, regularly following up with the patient after such discussions is crucial in further building on the trusting clinical relationship that can improve the therapeutic impact of the other concomitant pain interventions.

Tip 2: The Causes, Covariates, and Presentations of Total Pain Are Complex and Subjective; Expect the Unexpected and Individualize Interventions to Meet Patients Where They Are in Their Pain Experience

Total pain can be caused by a multitude of factors including physical, psychological, spiritual, or social factors. Rarely does one factor alone lead to total pain. Most often, there is a mix of multiple factors with varying intensities that lead to the perception and progression of total pain. ⁹ Each of these factors usually amplifies pain from other factors through a positive feedback mechanism, creating a circle of pain often seen as overwhelming distress that clinically does not respond to isolated interventions for management of these individual factors.^9,10 The intensity of these factors and their interplay is complex and subjective, necessitating an individualized care plan. Thoughtful planning is even more important in palliative care settings since most patients have advanced illnesses, multiple preexisting comorbidities, and a progressive pattern of clinical decline with limited prognosis. ¹¹ Under these challenging circumstances, an interplay across total pain domains can lead to a vicious circle with intense and overwhelming total pain that significantly impairs the quality of life for the patient.

Diagnosing and treating total pain can be achieved by eliciting careful and detailed personal, social, spiritual, and psychological history, and collaborating closely with a multidisciplinary team that addresses these factors both individually and collectively.^12,13 Such synergistic strategy provides an optimal management plan tailored to each patient and their underlying subjective distressing factors, to minimize the circle of total pain. ¹³

Tip 3: When Treating Physical Aspects of Total Pain, Employ a Polymodal Analgesic Pharmacological Approach, Including Anesthesia-Based Interventions Focused on Various Anatomical Elements of Patients’ Physical Pain Where Applicable

The etiology of physical pain encountered in palliative care is commonly disease or treatment related. In oncologic settings, pain is frequently due to bone metastases, malignant infiltration or compression of soft tissues and neural elements, or end-organ damage. ¹⁴ Common geriatric comorbidities such as degenerative musculoskeletal processes can also contribute to acute or chronic pain and impaired overall functional status; urinary and fecal incontinence can increase caregiver burden, decrease the overall patient independence, and reduce the overall quality of life.^15–18 Understanding the cause of physical pain’s contribution to total pain is critical in selecting the most effective analgesic approaches. Multimodal analgesic pharmacological approaches that involve using various combinations of opioids, nonopioids, and adjuvants allow the clinician to target the various physiological causes of the physical pain. ¹⁹

In addition, anesthesia-based interventions can provide effective analgesia in specific scenarios. Indications include pain refractory to traditional opioid pain management, significant dose-limiting opioid adverse effects, and coexisting comorbidities precluding the safe use of opioids.^14,20 This also provides a collaborative opportunity with anesthesia colleagues to use novel pain management approaches in terminal illnesses where preserving mentation is important to the patient and caregivers.^20,21

Anesthesia-based interventions offer a variety of pain relief options. ²⁰ They include simple landmark or image-guided joint, bursal, or trigger point injection. Epidural steroid injections, medial branch blocks, kyphoplasties, and vertebroplasties can be used to treat spinal pain.^14,20 For nonspinal pain, peripheral nerve blocks can provide regional analgesia in various parts of the body. ¹⁴ Celiac plexus, superior hypogastric plexus, and ganglion impar blocks can provide visceral pain relief in the abdominal and pelvic regions. ¹⁴ Intrathecal drug delivery systems are considered when systemic analgesia is ineffective or causing adverse effects with prognosis >6 months. ¹⁴

Tip 4: Incorporate Nonpharmacological Integrative Approaches (e.g., Acupuncture, Massage Therapy) for Their Dual Benefits on Physical and Psychological Pain

Total pain encompasses multiple interrelated physical, social, psychological, and spiritual dimensions. Employing complementary treatment options that address these factors can provide broader clinical benefits. Complementary modalities, when used appropriately, can be effective in managing pain either in combination with conventional therapies or as stand-alone treatments, ²² particularly in vulnerable populations such as frail or elderly patients. ²³ The appeal of complementary therapies often stems from their perceived safety profile and holistic nature, and both patients and family members increasingly advocate for their inclusion in care plans. Multiple complementary therapies have been found to be beneficial in advanced illnesses. ²⁴

Acupuncture exemplifies this multidimensional approach through its complex neurophysiological mechanisms. Acupuncture triggers the release of endogenous opioid peptides and neurotransmitters, including serotonin and norepinephrine, resulting in analgesia and psychological benefits in patients with advanced illnesses.^24,25 Systematic reviews have demonstrated both the safety and efficacy of acupuncture in cancer-related pain management, ²⁵ with documented improvements in pain control, sleep quality, mood, and overall quality of life in cancer survivorship settings. ²⁶

Similarly, therapeutic massage demonstrates dual physical and psychological benefits in addressing total pain. Its mechanisms include neurological effects—through the release of endogenous opioids, serotonin, and dopamine—and mechanical effects that alleviate muscle tension and fatigue. ²⁷ Clinical studies have shown significant improvements in physical and emotional well-being, functional independence, and quality of life measures.^27–29

Many barriers exist to the implementation of complementary therapies in cancer pain management (such as cost, insurance coverage, lack of familiarity among health care providers). However, given their demonstrated capacity to address multiple dimensions of total pain simultaneously and their positive impact on patient outcomes, these modalities warrant serious consideration as integral components of comprehensive pain management strategies. ³⁰

Tip 5: Plan for Early Intervention from Psychiatric/Psychological Care Colleagues for Patients with Preexisting Complex Behavioral and Psychological Comorbidities and Those with Personality Disorders

Behavioral and psychological comorbidities are common in the general population. These mental illnesses worsen with stressors related to advanced illness and at the end of life and can add to total pain (Table 1). A 2003 study found that almost two-thirds of the palliative care population studied had comorbid psychiatric illness. One-third of these disorders had not been identified or treated appropriately prior to admission. ³¹

Table 1.

Etiology, Manifestations, Interventions, and Outcome Goals for Various Aspects of Total Pain

Aspect of total pain	Description	Underlying causes	Clinical manifestations	Interventions	Outcome goals
Physical pain	Somatic pain Visceral pain Neuropathic pain	Progression of disease/space occupying lesions/ compression or obstruction of an anatomical structure Injury to anatomical structures Nerve damage	Physical distress due to pain Neuropathy from illness of treatments Loss of physical functional status due to pain	Pharmacologic pain management through via oral, intravenous, or other routes Procedural pain management and nerve blocks Physical therapy	Numerical pain reduction with analgesia Improved physical comfort Improved physical functional status
Psychological pain	Mental distress from worries about the illness and associated prognosis	Loss of independence Fear of death Mental trauma	Anxiety related to treatments and prognosis Depression Hopelessness	Counseling Psychotherapy Cognitive behavioral therapy Pharmacologic mood management with medications	Improvement in overall mood Decreased anxiety Decreased depression
Social pain	Loss of personal relationships Loss of individual identity Social isolation	Changes in relationships Inability to maintain social status Financial stress	Strain in personal relationships Job loss with financial difficulties Loss of purpose in life	Early involvement of social workers Couples or family therapy Support groups	Improvement in personal relationships Increased sense of purpose
Spiritual pain	Loss of long-standing spiritual or religious beliefs Existential distress Loss of purpose of life	Loss of faith Existential crises Unfinished goals of life	Feeling of abandonment Questioning one’s faith	Early involvement of chaplains Spiritual counseling Support from community-based spiritual/religious organizations	Reconnection with faith/religion Peace with one’s life’s purpose Reduction of existential distress

Psychological pain as a component of total pain not only affects patients but their close family and caregivers as well. ³² Worry about the illness and its treatment are often the biggest stressors. Financial and social stressors can also worsen behavioral and psychological comorbidities. Such scenarios can add significantly to total pain, impair the ability to cope with dynamic circumstances involved in complex and advanced diseases and worsen the overall quality of life.^33,34

Early diagnosis of psychological distress is the key to timely intervention in these cases. Expert psychiatric and psychological involvement in the early stages can help with both diagnosis and early intervention, with subsequent reduction in total pain and improvement in quality of life at advanced stages of illness. Mental health-trained colleagues can help with both medication and behavioral interventions for identified patients.^33,35 In clinical settings with a full interdisciplinary team, a palliative care social worker can help with certain early behavioral interventions and also find resources for more complex behavioral and psychological issues that necessitate a full expert psychiatric consultation. ³⁶

Tip 6: Include a Detailed Initial Spiritual Assessment to Understand and Address the Various Causes of Spiritual Pain

Spiritual pain is often felt by patients with advanced and terminal illnesses. ³⁷ Spiritual pain can be severe and frequent, and studies show that it is rarely discussed. ³⁸ It can present in various forms of distress and can worsen total pain and decrease patients’ overall perceived quality of life. ³⁹ Patients with higher spiritual and religious competence have better psychological adjustment skills and these skills can reduce the distress caused by other aspects of physical pain. ⁴⁰

Obtaining a detailed initial spiritual history can help with understanding and managing various aspects of spiritual pain. Clinicians can approach spiritual history taking by being fully present and attentive to patients’ spiritual distress and listening to patients’ fears and hopes. ⁴¹ The FICA questionnaire is a validated tool for spiritual distress and has four components:

• -“F” stands for Faith and belief and elicits patients’ spiritual beliefs that help them cope with stress and give their life meaning.
• -“I” stands for Importance and Influence and asks the patient if spirituality in any form is important in their life and if it impacts their health care decisions.
• -“C” stands for Community and focuses on patients belonging to a certain religious or spiritual community.
• -“A” stands for Address/Action, asking if the clinician needs to share the patients’ spiritual needs with someone with more expertise to assist the patient, such as involving chaplains and other spiritual experts with patients’ distress. ⁴¹

Other tools include palliative care-7, which can be used by chaplains to ascertain and quantify patients’ spiritual distress in palliative care settings, and Functional Assessment of Chronic Illness Therapy–Spiritual Well-being which has been used in patients with cancer and other chronic illnesses to evaluate their spiritual well-being.^42,43

Data show that addressing spiritual pain and adding chaplains and other spiritual experts to the interdisciplinary team decreases patients’ overall distress associated with their belief systems, reduces fears related to their illness, and improves their quality of life in advanced illnesses.^44,45

Tip 7: Incorporate Regular Evaluation and Documentation of Spiritual Needs, and Include Interprofessional Spiritual Care Throughout All Illness Phases and Transitions

Total pain is a highly complex, multidimensional condition that requires an interprofessional approach, including spiritual care. ⁴⁶ To mitigate the negative effects of total pain, spiritual distress in its various forms and expressions should be considered. ⁴⁷ Spiritual distress often includes (but is not limited to) religious/spiritual struggle, ⁴⁸ loss of meaning, existential insecurity and groundlessness, fear of death or the afterlife, feelings of guilt, or the conviction that one is being punished for something (Table 1).

To address spiritual distress, careful and ongoing spiritual assessment is necessary, which includes identifying and evaluating the patient’s spiritual resources. A lack of access to relevant resources by the patient can be part of the problem. The widest possible range of spiritual care interventions should be considered to alleviate spiritual distress and strengthen spiritual resources. These can be provided either by spiritual care generalists (nurses, physicians, psychotherapists, etc.) or spiritual care specialists (health care chaplains). ⁴¹ Spiritual care interventions may include compassionate presence; nondirective counseling; different forms of prayer, ritual, or meditation; reading or recitation of religious/spiritual texts; singing or listening to music; and other practices that are deemed safe and appropriate to the clinical context. Such as all interventions in palliative care, spiritual assessments, and interventions should be documented and regularly evaluated for their effectiveness in alleviating spiritual distress and strengthening spiritual resources. ⁴⁹

Tip 8: Provide Dignity-Oriented Therapies That Are Adapted to the Person, Population, and Culture to Reduce Social and Psychological Aspects of Total Pain ⁵⁰

Providing holistic care to address total pain requires clinicians to address not only patients’ physical symptoms but also their social and psychological symptoms. Multiple nonbehavioral therapeutic modalities, including dignity-oriented approaches and cognitive behavioral approaches, can be powerful strategies to tailor care for individual needs, specific populations, diverse cultures, and varying contexts.

In order to manage the psychological and social correlates of total pain, clinicians should prioritize cultural competence and person-centered care. Recognizing the influence of cultural factors on patients’ perceptions of pain is essential to any psychological treatment for pain. This can be achieved through ongoing cultural education and sensitivity training. ⁵¹ In addition, therapies must be tailored to individual preferences and needs to foster a person-centered approach. Engaging patients in shared decision making (SDM) empowers them and promotes their active involvement in care, which is essential in psychotherapy. ⁵² In addition, it is important to consider the broader context of a patient’s total pain. Clinicians should be attuned to social determinants of health and advocate for resources and support to address contextual challenges. ⁵³

Certain types of therapies, including dignity therapy, mind–body interventions, and cognitive behavioral therapy, have a robust evidence base for managing pain in diverse patients. Dignity therapy involves guided conversations focusing on life achievements, legacy, and meaningful connections in order to contribute to a sense of purpose. ⁵⁴ Mind–body interventions, such as mindfulness and relaxation techniques, can improve psychological aspects of total pain and enhance mental well-being. ⁵⁵ And finally, cognitive behavioral therapy, which focuses on the interplay among thoughts, behaviors, and emotions, can be an effective therapy for treating chronic pain. ⁵⁶

Tip 9: Cocreate and Encourage a Mutually Acceptable SDM Process Based on Patients’ Value Systems and Treatment Preferences

Both personal and clinical contextual factors can influence decision making for an individual experiencing total pain. For example, personal cognitive and/or emotional factors can distract from decision-making tasks or sharpen attention to a required decision-making task. ⁵⁷ Clinician biases and health care system structures, such as limited visit time and regulatory requirements regarding pain management interventions, can also influence decision making. ⁵⁸ The SDM model is a proactive approach to inclusive decision making that involves patient and clinician contributions to make the best possible health care management decisions for a patient at a given point in time. This collaborative approach can be especially valuable when there is more than one option for management as SDM allows for options to be weighed and affords patients the opportunity to engage with a plan to be part of the selection process. ⁵⁹

Multiple concrete approaches to SDM have been set forth. One such model is the shared approach, which has shown improvement in patient satisfaction, therapeutic alliance, and adherence to the management plan. ⁶⁰ This approach involves the following steps: “seek your patient’s participation; help your patient explore and compare treatment options; assess your patient’s values and preferences; reach a decision with your patient; and evaluate your patient’s decision.” ⁶⁰

SDM has value from an ethics standpoint as well, especially in places where medical aid in dying is permitted and patients may be considering this option as a final treatment modality. ⁶¹ In such cases, the SDM approach fosters a necessary detailed conversation among the patient, caregivers, and clinicians. This enables exploration and understanding of the patient and caregiver’s hopes, wishes, values, and goals under the given circumstances. The SDM model also integrates collaborative conversation and planning among the multiple interprofessional clinicians involved in care for patients with total pain. It is important to know that any member of the clinical team can suggest and coordinate this SDM approach.

Tip 10: Ensure You Are Actively Integrating the Expertise of Multidisciplinary Colleagues Including Social Workers, Chaplains, Psychologists, Nutritionists, and Integrative Specialists in Screening for and Treating All Aspects of Patients’ Total Pain and in Supporting Their Caregivers

As pain can be totally encompassing for the patient and their caregivers, palliative care clinicians must evaluate the multidimensional nature of pain and engage an interdisciplinary group of experts to manage various aspects of total pain. This includes having pain management clinicians with backgrounds in various aspects of pharmacologic and nonpharmacologic physical pain control, spiritual care experts such as chaplains to manage the spiritual aspects of pain, social workers to assist with social distress, and mental health experts to assist with psychological distresses involved in advanced illnesses to comprehensively meet the total pain needs of their patients and their caregivers. ⁶²

The literature demonstrates that failure to manage pain effectively leads to higher health care costs and it has been suggested that utilizing a multidisciplinary team may produce better outcomes in such scenarios. ⁶³ In addition, such a comprehensive pain management approach helps in maintaining or improving patients’ overall function and independence with activities of daily living and instrumental activities of daily living. Moreover, the use of techniques including physical therapy, occupational therapy, and speech language pathology can help reduce physical and psychosocial aspects of total pain by improving function and ability to communicate.^64,65 From a coordination standpoint, it is important for multidisciplinary teams to have similar goals with a shared understanding of each other’s roles and acknowledgment of the values they all offer. ⁶⁶ Often the challenges that such teams encounter center around the inability of each member of the team to obtain appropriate reimbursement for their clinical work. Understanding this is critical, medical teams should secure an appropriate budget from leadership to support all team members by demonstrating impactful outcomes and high satisfaction with their patients and caregivers. ⁶⁷

Conclusions

Total pain is a common finding in palliative care. Dame Cicely Saunders first described total pain during the early hospice movement as multifactorial in origin and comprised of physical, social, spiritual, and psychosocial pain (Table 1). Each of these factors can combine and amplify the overall pain experience of the patient in advanced disease settings and reduce the overall quality of life for the patient and their caregivers. It is imperative for palliative care clinicians to recognize this important concept and address all aspects of total pain to optimally manage their patients’ pain in palliative care settings. Such an approach can improve both pain and functional outcomes, and consequently enhance the patient’s overall quality of life.