Pain

Key messages

Definition and prevalence

Pain in palliative care is generally considered a complex and subjective experience, shaped by both physiological and psychological factors. It appears to be prevalent among patients with advanced diseases, with estimates suggesting that between 50% and 90% of patients in palliative care experience some level of pain. [1,2] Pain may arise from the disease itself (e.g., tumour growth in cancer), treatment side effects, or related comorbidities, and the severity and type of pain can vary considerably between individuals. [2] For instance, cancer pain is often categorised as somatic, visceral, or neuropathic, depending on tumour location and invasion. [3]

In non-malignant conditions, pain also appears prevalent, though it tends to be under-recognised. Chronic diseases such as chronic obstructive pulmonary disease (COPD), heart failure, and end-stage renal disease may contribute to pain through mechanisms like organ failure, inflammation, or side effects from treatment. [4,5] This pain can be particularly challenging to assess and manage, especially in elderly populations or those with communication difficulties, such as people living with dementia. [5,6]

Pain in palliative care is often further classified into acute, chronic, and malignant categories. Acute pain arises suddenly, typically due to injury or treatment, and may require short-term interventions. [7] Chronic pain, by contrast, persists over longer periods and is often managed differently from acute pain, with a focus on long-term pharmacological strategies, including the use of adjuvant therapies alongside opioids. [3] Malignant pain, often linked to cancer or progressive diseases, presents additional complexities in management, as it can include components of both acute and chronic pain. [3,7]

Types of pain in palliative care

Somatic pain: Typically originating from damage to tissues such as skin, muscles, bones, or joints, somatic pain is often well-localised and described as sharp, aching, or throbbing. It is commonly associated with conditions like bone metastases and musculoskeletal disorders. [8]

Visceral pain: This pain arises from internal organs like the intestines, liver, or heart. It tends to be diffuse and poorly localised, often described as deep, cramping, or pressure-like. Visceral pain may occur in cancer affecting the abdomen or chest, as well as in non-malignant conditions like COPD and heart failure. [4]

Neuropathic pain: Neuropathic pain results from damage or dysfunction of the nervous system, potentially caused by tumour compression or side effects from treatments like chemotherapy. It is often described as burning, shooting, or tingling, and can be more challenging to manage effectively. [2,9]

Assessment

Pain assessment in palliative care requires a multidimensional approach that captures not only pain intensity, but also its impact on a patient's physical, emotional, and psychological well-being. Standardised tools such as the Numerical Rating Scale (NRS) and the Visual Analogue Scale (VAS) are widely used in clinical practice to measure pain intensity across a range of conditions, including cancer and non-cancer diagnoses. [1,10] These tools offer simplicity and ease of use, but they may not fully capture the complexity of the pain experience, particularly when psychological or emotional components are involved. [1,4]

In populations where communication is limited, such as people living with dementia, specific tools like the Pain Assessment in Advanced Dementia (PAINAD) scale are utilised. This tool assesses pain based on observable behavioural cues, such as facial expressions, body movements, and vocalisations, offering a non-verbal means of evaluating pain. [5,11] Despite its usefulness, the PAINAD scale may not always detect more subtle or less overt expressions of pain, particularly in advanced dementia, where symptoms can be misinterpreted as being unrelated to pain. [5] This highlights the importance of frequent reassessment in vulnerable populations.

More comprehensive assessment tools, such as the Brief Pain Inventory (BPI) and the Edmonton Symptom Assessment System (ESAS), are widely used in palliative care to not only measure pain intensity but also assess its impact on the patient’s overall quality of life. [1,4] These tools are valuable because they incorporate the effects of pain on mood, activity, and sleep, providing a holistic view of the patient’s experience. [10] By capturing these broader impacts, healthcare providers can adjust treatment plans to address not only pain but also associated symptoms like anxiety, fatigue, and depression. [4]

For non-verbal populations or those with cognitive impairments, proxy assessments from caregivers are also important. Caregivers often serve as the primary observers of behavioural changes and are key in providing input on pain-related behaviours when patients cannot effectively communicate their discomfort. [5,6] Consideration should be given to whether the pain requires further investigation, as this can influence treatment decisions. Integrating patient-reported outcomes and pain diaries into regular assessments can also help to track pain patterns over time, especially in home care settings, where formal medical assessments may be less frequent. [4,6]

Non-pharmacological treatment

Non-pharmacological interventions are increasingly recognised as valuable components of pain management in palliative care. While they may not replace pharmacological treatments entirely, evidence suggests they can play a significant complementary role, particularly in enhancing quality of life by addressing the physical, emotional, and psychological aspects of pain. [2,6] Such interventions may be especially useful for patients who are unable to tolerate or prefer to minimise pharmacological treatments.

Light physical activity, where appropriate, has been associated with improvements in pain management and overall well-being. Although physical interventions may not be suitable for all palliative care patients, studies suggest that even modest activity—such as walking, passive stretching, or gentle resistance training—could potentially alleviate musculoskeletal pain by preventing deconditioning. [6,12] The effectiveness of physical interventions may, however, vary depending on individual capacity and the nature of the underlying condition. [8]

Psychological interventions, particularly Cognitive Behavioural Therapy (CBT) and mindfulness-based approaches, are thought to offer benefits by addressing the cognitive and emotional components of pain. CBT has been shown to help patients reframe their thoughts about pain, reducing the emotional distress that often exacerbates pain perception. [10,13] Mindfulness techniques, such as meditation and breathing exercises, are also believed to help by fostering relaxation and reducing anxiety, both of which can contribute to heightened pain experiences. [10] However, individual responses to these therapies may vary, and further research is needed to fully establish their efficacy in palliative care populations. [13]

Complementary treatments, including acupuncture, massage, and music therapy, have shown potential for improving pain management in palliative care. Electroacupuncture has been suggested as a potentially effective treatment for cancer-related pain, with studies indicating that it may reduce pain intensity and decrease the need for opioid medications. [14] Similarly, massage therapy has been reported to improve physical comfort by relieving muscle tension and promoting relaxation, though its effects may be temporary. [6,15] Music therapy is thought to alleviate pain by providing distraction and reducing anxiety, contributing to an improved pain experience. [10,13] While these therapies are generally considered low risk, their effectiveness can be highly individualised and may depend on the patient’s preferences and condition.

Radiation therapy, particularly for bone metastases, is also an important non-pharmacological intervention that can provide significant relief for pain caused by tumour growth. Radiation can help shrink tumours, reduce pressure on surrounding tissues, and improve overall comfort, making it an integral component in the management of cancer pain. [16]

Non-pharmacological approaches such as energy conservation strategies and relaxation techniques are also widely used in palliative care. Task pacing, regular rest periods, and planned activity breaks may help patients manage their energy levels more effectively, particularly when fatigue-related pain is an issue. [4,11] Additionally, relaxation techniques like deep breathing exercises, guided imagery, and progressive muscle relaxation may offer temporary relief from pain by reducing tension and anxiety. [13] These strategies can often be tailored to the individual’s needs and are relatively easy to implement across different care settings.

Although non-pharmacological treatments are unlikely to fully replace traditional pain medications, they appear to offer valuable adjunctive benefits in comprehensive pain management strategies. Their low-risk nature and adaptability make them suitable for a wide range of patients in various care environments, though ongoing assessment of their effectiveness and suitability is required to ensure optimal outcomes. [8,12]

Pharmacological treatment

Pharmacological management remains a primary approach to pain control in palliative care, particularly for moderate to severe pain. Opioids are frequently employed, especially for cancer-related pain, though there is increasing interest in opioid-sparing strategies to mitigate side effects and address concerns about tolerance and dependency. [1,17] These strategies involve using adjuvant medications or non-pharmacological treatments to reduce opioid dosages while maintaining effective pain relief. Medication choices are typically tailored to the individual's pain type, severity, and overall health, and are reassessed as the patient's condition evolves.

Opioids: Strong opioids, including morphine, oxycodone, and hydromorphone, are commonly used for cancer-related pain and other severe pain syndromes. [18,19] These medications are effective in managing somatic and visceral pain, and the World Health Organization’s (WHO) three-step analgesic ladder continues to recommend their use in severe pain scenarios. However, opioids are associated with significant side effects, such as constipation, nausea, sedation, and the risk of opioid-induced hyperalgesia. [2,19] Moreover, their efficacy in treating neuropathic pain remains contentious, as this type of pain often responds less well to opioid therapy. [1] Consequently, opioid-sparing strategies are increasingly adopted to reduce reliance on opioids by incorporating adjuvant analgesics. [2,17]

Adjuvant Analgesics: For pain that does not respond fully to opioids—especially neuropathic pain—adjuvant medications, including gabapentinoids (gabapentin, pregabalin) and antidepressants (amitriptyline, duloxetine), are frequently used. [1,2] These drugs act on nerve-related pain pathways and are often prescribed alongside opioids to improve overall pain control. While these agents can be effective, they also require careful dosing and monitoring due to potential side effects, such as dizziness, sleepiness, and dry mouth. [6,18]

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs): NSAIDs like ibuprofen and celecoxib are commonly used for mild to moderate somatic pain, especially where inflammation is a contributing factor. [17] They are often combined with opioids to enhance pain relief and reduce the required opioid dose. However, long-term NSAID use must be approached cautiously, particularly in patients with gastrointestinal or renal issues, as these drugs can increase the risk of ulcers, gastrointestinal bleeding, and kidney damage. [6,17] In some frail or elderly patients, the risks associated with NSAIDs may outweigh their benefits, necessitating alternative approaches. [9]

Corticosteroids: Corticosteroids such as dexamethasone and prednisolone are commonly prescribed for pain linked to inflammation, including pain due to tumour-related swelling or nerve compression. [17] These medications can provide relatively quick pain relief in such cases, though their long-term use is limited by side effects, including immunosuppression, muscle weakness, and hyperglycaemia. [2] Short courses of corticosteroids are often employed to manage acute pain flares, particularly in terminal phases, with careful monitoring to balance their benefits against potential harm. [1]

Cannabinoids: There is growing interest in the use of cannabinoids such as cannabidiol (CBD) and tetrahydrocannabinol (THC) for managing chronic and neuropathic pain in palliative care settings. [20,21] Although early evidence suggests cannabinoids may be beneficial for some patients, particularly for neuropathic pain, their efficacy remains uncertain, and side effects such as dizziness, cognitive impairment, and sedation must be considered. [20] Legal and regulatory issues also complicate cannabinoid use in many jurisdictions, and further research is needed to clarify their role in palliative care. [21]

Pharmacological treatments, though essential in palliative care, require a nuanced approach. Balancing the efficacy of medications against their potential side effects is key, particularly in frail or older populations. Multimodal pain management strategies, which incorporate both pharmacological and non-pharmacological interventions, are often recommended to provide comprehensive and holistic care.

Equity and access

Access to pain management in palliative care is shaped by various social, cultural, and structural determinants, with underserved populations often facing additional barriers. Populations such as culturally and linguistically diverse (CALD) communities, Aboriginal and Torres Strait Islander peoples, rural populations, and incarcerated individuals may encounter inequities in pain management due to both systemic issues and individual healthcare needs.

Pain management for CALD populations can be complicated by language barriers, differing cultural perspectives on pain, and varying degrees of familiarity with Western medical treatments. [22] These patients may experience a disconnect between their cultural views on pain and the standardised approaches to pain management used in palliative care. For instance, the reluctance to use opioids or the preference for traditional healing methods can affect treatment adherence. [23] Healthcare providers must adopt culturally sensitive communication strategies, ensuring that patients and their families understand available pain management options while respecting their beliefs. [22]

Pain management for Aboriginal and Torres Strait Islander peoples is closely linked to cultural beliefs about health, illness, and dying. There may be a preference for traditional healing methods, which can complicate the integration of conventional pain treatments. [24] Inadequate access to culturally competent healthcare services, particularly in remote areas, exacerbates these challenges. [25] Healthcare providers working with these populations must engage with local communities and traditional knowledge to provide pain relief that aligns with patients' cultural practices while also ensuring access to effective medical treatments. [26]

Geographic isolation and a lack of specialised healthcare resources can create significant barriers to pain management in rural areas. Patients in these regions often have limited access to palliative care services, including pain specialists, leading to delayed or inadequate treatment. [26] Telehealth initiatives and remote consultations have emerged as potential solutions, providing a means for rural patients to access expert advice on pain management without the need for travel. [27] However, these technologies may not be accessible to all, due to varying levels of digital literacy and infrastructure limitations. [28] Addressing these gaps requires targeted policy interventions and investment in local healthcare infrastructure. [26]

Individuals in prison face unique challenges in accessing adequate pain management due to restrictive healthcare policies and concerns about misuse of pain medications, particularly opioids. [29] The prison environment often prioritises security over healthcare, leading to under-treatment of pain in inmates nearing the end of life. [30] Bias against inmates, particularly those with a history of substance misuse, can further complicate access to effective pain relief. [31] Efforts to improve pain management for incarcerated individuals should focus on enhancing the availability of palliative care services within prisons and addressing the stigma associated with opioid use in this setting. [29]

Managing pain in individuals with severe mental health disorders can be challenging due to communication difficulties, cognitive impairments, and healthcare provider biases. [32] These patients may underreport pain, or healthcare providers may misinterpret their symptoms, resulting in under-treatment. [32] Moreover, concerns about medication misuse may lead to reluctance in prescribing opioids or other strong analgesics. To improve pain management for these individuals, palliative care providers must be trained to recognise the complexities of pain in patients with mental health disorders and use appropriate pain assessment tools. [32]

Care context

Pain management in palliative care can differ significantly depending on the care setting and patient population. Approaches to pain control need to be adapted based on the care environment and the patient’s specific condition. For patients nearing the end of life, limitations on physical activity may require a more focused approach to ensure comfort and dignity.

In home care settings, informal caregivers often manage pain with limited access to healthcare professionals. Tools like pain diaries and telehealth consultations can support caregivers by providing real-time tracking and remote guidance for adjustments to pain management strategies. [4,33] For patients nearing the end of life, physical activity may no longer be possible, shifting the focus to comfort-based interventions, such as light touch or massage when tolerated, and relaxation techniques like breathing exercises. [6] These methods allow for tailored, minimal-effort interventions that help relieve pain and stress, especially when traditional treatments are less feasible. [11]

In residential aged care homes, managing pain in populations with conditions like dementia or frailty presents additional complexities. Many residents nearing the end of life may be non-verbal or unable to express pain, making tools like the Pain Assessment in Advanced Dementia (PAINAD) scale essential. [5] These assessments rely on behavioural cues, such as grimacing or agitation, to detect pain. In these cases, pharmacological interventions, particularly opioids, may be required to manage severe pain, but staff also focus on positioning, environment optimisation, and other comfort measures. [4,6] For patients too frail to engage in non-pharmacological therapies, ensuring a calming, supportive environment can be a primary means of managing pain and maintaining quality of life.

In paediatric settings, assessing and managing pain for children nearing the end of life requires particular sensitivity, as children may find it difficult to articulate their pain. The Faces Pain Scale-Revised (FPS-R) is a valuable tool for young children who can still communicate their discomfort. [34] However, for children who are too ill to express pain, family members and caregivers may rely on subtle non-verbal cues to inform decisions about pain relief. [11] In these cases, managing pain often involves a combination of pharmacological treatments, adjusted carefully to minimise distress, and non-pharmacological interventions like music therapy, which can help provide comfort without the need for physical engagement. [4]

For patients in hospice or acute care settings, pain management often becomes more intensive. Patients nearing the end of life may experience complex pain that requires multimodal approaches, combining strong opioids, adjuvant therapies, and non-pharmacological interventions to maintain comfort. [1] In these settings, the focus may shift from interventions aimed at controlling or treating underlying causes to strategies that prioritise the patient’s comfort. Continuous infusions and intravenous medications are often used when oral routes become challenging, with frequent reassessment by the palliative care team to balance pain relief and the patient’s overall well-being. [17] In some cases, withdrawing more aggressive treatments in favour of purely comfort-based care may be considered, depending on the patient's condition and care goals. [18]

Implications for families and carers

Families and carers have a significant role in supporting patients with pain in palliative care, often managing emotional and physical challenges. Pain management can potentially alleviate some of this burden, though the complexity of care may still create stress.

Witnessing a loved one in pain is emotionally challenging and can lead to feelings of helplessness, particularly when pain is difficult to control. [35] Carers may also experience physical strain from responsibilities such as administering medications and assisting with daily care. [34] Providing clear guidance on medication use and non-pharmacological strategies may help reduce this burden, [9] along with regular communication and emotional support from healthcare teams. [4]

Carers often take on decision-making roles, especially when patients are unable to communicate their preferences. This can lead to stress, especially if there is uncertainty or disagreement within the family. [35] Regular, open communication with healthcare providers may ensure that pain management aligns with the patient’s goals and values. [4] Additionally, carers benefit from practical training on pain recognition, medication management, and understanding when to seek medical support. [17]

Carers may experience anticipatory grief as patients near the end of life, which can be intensified by concerns over uncontrolled pain. When pain is managed effectively, families may find it easier to focus on emotional connection rather than the physical aspects of care. [35] Clear reassurance that pain relief remains a priority can help ease emotional strain during this time. [2]