Fatigue

Key messages

Definition and prevalence

Fatigue in palliative care is commonly described as a subjective feeling of extreme tiredness, weakness, or energy depletion, which is disproportionate to recent activity and unrelieved by rest. [1,2] It arises from multiple sources, including physical issues like anaemia or infection, and psychological factors such as emotional distress and depression, making it highly variable between patients depending on their health status and disease progression. [3] This complexity makes fatigue difficult to fully manage in palliative care settings.

Fatigue is particularly prevalent in patients with advanced cancer or undergoing chemotherapy, affecting up to 80% of these individuals, with nearly 99% of those receiving chemotherapy reporting it as a persistent issue. [1] Cancer-related fatigue is often more severe than in non-cancer populations, worsened by treatment and often persisting through end-of-life care. [3,4]

In non-cancer conditions, such as end-stage renal disease, fatigue is similarly common due to muscle atrophy, anaemia, and metabolic imbalances from long-term dialysis. [2] This leads to reduced physical and mental well-being, further complicating daily activities and quality of life. [2] Fatigue in palliative care, regardless of the underlying cause, presents unique challenges due to its subjective nature and the interplay of disease progression and treatments. [3]

Assessment

Assessing fatigue in palliative care requires both physical and psychological evaluations. Common tools include the Brief Fatigue Inventory (BFI) and Piper Fatigue Scale (PFS), which provide numerical ratings for fatigue severity and its impact on daily functioning, guiding clinical decisions. [1,3] The Edmonton Symptom Assessment System (ESAS) is also frequently used in cancer-related fatigue, offering a quick, patient-reported scale (0–10) that assesses fatigue alongside other key symptoms such as pain and anxiety. [1,3]

Patient-reported outcomes, such as fatigue diaries, add depth to assessments by tracking daily energy variations and activity levels, providing valuable longitudinal data for more tailored management. [1] Simple screening questions, like ‘Do you feel unusually tired or weak?’, are also practical in triggering more comprehensive assessments, especially when integrated into routine care. [3] This approach creates a thorough, yet patient-centred, understanding of fatigue in advanced illness.

Non-pharmacological treatment

Managing fatigue in palliative care often requires a multidimensional approach, with non-pharmacological interventions forming a core part of the strategy. Allied health professionals play a key role in managing fatigue in palliative care populations. Exercise-based interventions, though adapted to the abilities of patients with terminal illness, have demonstrated benefits in reducing fatigue and maintaining mobility. [2,5] Light physical activity, such as walking, cycling, or resistance training, helps address the physical aspects of fatigue by counteracting the deconditioning associated with prolonged illness. [2] These interventions may also have psychological benefits, as they allow patients to engage in meaningful activities, fostering a sense of control over their condition and helping to maintain emotional well-being. [3,5]

Mindfulness-based interventions, such as mindfulness meditation, yoga, and art therapy, have shown promise in managing both the physical and psychological dimensions of fatigue, particularly in patients who may not be able to engage in more strenuous physical activity. [3,4] These practices help reduce emotional stress and foster present-moment awareness, addressing the cognitive and emotional burdens that often accompany fatigue in terminal illness. [4] The use of mindfulness can provide a way for patients to cope with the mental strain of their illness, improving their capacity to manage the overall impact of fatigue. [3] In addition to mindfulness-based practices, integrative approaches like lifestyle modifications and complementary therapies—including nutrition counselling, acupuncture, and gentle physical activity—are increasingly recognised for their role in alleviating fatigue. [6] These strategies offer holistic support, aiming to enhance physical vitality and emotional resilience, which can be particularly valuable for palliative care populations facing complex symptoms. [6]

Energy conservation strategies and psychosocial support also play a vital role in fatigue management. Techniques such as pacing, prioritising activities, and incorporating regular rest periods help patients use their energy more efficiently, thereby mitigating the effects of fatigue on daily life. [1,3] Fatigue diaries are a useful tool for tracking energy levels and fluctuations throughout the day, allowing patients to make more informed decisions about how to allocate their energy. [1] Cognitive Behavioural Therapy (CBT) has been particularly useful in reframing negative thoughts about fatigue, promoting more adaptive coping strategies, and improving emotional resilience, especially in cases of cancer-related fatigue. [3]

Pharmacological treatment

In managing fatigue within palliative care, pharmacological interventions often focus on psychostimulants and corticosteroids, with other agents such as melatonin and testosterone considered in specific cases. Psychostimulants, such as methylphenidate and modafinil, are commonly used to alleviate cancer-related fatigue. Methylphenidate has shown some effectiveness in improving fatigue scores, such as the Brief Fatigue Inventory (BFI), although patient responses vary. Some patients experience notable relief, while others report minimal improvement, with evidence remaining mixed due to small trial sizes and potential placebo effects. [1,7] Despite this variability, psychostimulants are often regarded as a useful short-term option for managing fatigue, provided careful monitoring is in place. [1]

Corticosteroids, such as dexamethasone and methylprednisolone, are also widely used in palliative care, especially when fatigue is linked to inflammation or cachexia. These medications may offer temporary relief by enhancing energy levels and appetite, but long-term use is discouraged due to potential side effects such as myopathy and immunosuppression. [1] Short courses of corticosteroids are typically prescribed to provide symptom control while minimising the risk of adverse effects. [7]

Other pharmacological agents, such as melatonin and testosterone, are less frequently used but may be considered in specific cases. Melatonin has been explored for its anti-inflammatory and antioxidative properties. [7] Testosterone therapy may be appropriate for patients with documented hypogonadism or muscle wasting, although the evidence supporting its effectiveness in addressing fatigue is inconsistent. [7] Ultimately, the choice of pharmacological treatment should be tailored to the patient’s individual condition, with a careful balance between potential benefits and side effects.

Equity and access

Managing fatigue in palliative care for underserved populations requires a nuanced understanding of the social and structural determinants that shape access to care. Aboriginal and Torres Strait Islander peoples, culturally and linguistically diverse (CALD) populations, prisoners, and those in rural areas face distinct barriers to equitable fatigue management.

For Aboriginal and Torres Strait Islander people, access to fatigue management is often limited by a lack of culturally safe care and late referrals. Fatigue is intertwined with broader concepts of health, spirituality, and well-being, which are not always recognised in conventional care models. Integrating traditional practices and fostering culturally respectful relationships between healthcare providers and Indigenous communities may improve engagement and symptom management. [8,9] Addressing this requires a commitment to understanding and embedding cultural knowledge within palliative care frameworks.

CALD populations encounter challenges primarily around language and cultural misunderstandings, which can hinder effective communication about fatigue. The absence of culturally competent care models often leaves patients feeling misunderstood, resulting in underreporting of symptoms like fatigue. Providing adequate interpreter services and training healthcare providers to recognise and respect cultural differences is key to enhancing fatigue management in these communities. [10] Care pathways that are sensitive to diverse cultural contexts offer a more appropriate way to address fatigue.

In prison settings, fatigue management is constrained by limited resources and inconsistent access to palliative care. While peer caregiver models exist in some prisons, they may not be sufficient to address complex fatigue-related needs. Expanding resources and establishing standardised care frameworks across prison systems could provide a more reliable approach to fatigue management. [11] Similarly, in rural areas, geographic isolation and limited infrastructure pose challenges to providing comprehensive palliative care. Telehealth has offered some relief, but the ongoing need for local infrastructure and healthcare provider training remains important for effective fatigue management. [12]

Care context

Fatigue management in palliative care presents unique challenges across various care settings, including home care, residential aged care homes, and acute care settings. Each context brings specific factors that influence how fatigue is assessed and treated, particularly in terminally ill patients.

In home care settings, informal caregivers often shoulder the responsibility of managing fatigue with minimal external support. This can lead to underreporting of fatigue or delayed interventions due to the complex emotional and physical toll of caregiving. [13] Tools like telehealth consultations and fatigue diaries may help both caregivers and patients by providing continuous monitoring and offering a structure for symptom management. [14] The flexibility of home-based care allows for personalised approaches, but support systems are necessary to ensure that caregivers can manage fatigue effectively without becoming overwhelmed. [1] Healthcare professionals should also include checking energy levels as part of routine assessment to help alleviate underreporting and management of fatigue.

In residential aged care homes, the coexistence of fatigue with other comorbidities such as pain, depression, and cognitive decline is common. Fatigue interventions in this setting often favour non-pharmacological approaches, such as task pacing and light physical activity, which need to be carefully adapted to the individual’s physical and cognitive capacities. [7] Coordination between care staff, healthcare professionals, and families is essential in creating tailored care plans that effectively manage fatigue within these populations, where frailty complicates standard treatments. [12]

In acute care settings, where the focus is often on addressing immediate and life-threatening symptoms, fatigue management can be deprioritised. However, pharmacological treatments like corticosteroids or psychostimulants may be used to mitigate extreme fatigue in terminal patients. These interventions must be balanced with other acute symptoms being treated. [1] The inclusion of palliative care teams in acute settings is important for ensuring that fatigue management is integrated into broader care strategies, offering a more holistic approach. [7]

Implications for families and carers

Fatigue in palliative care can deeply affect both families and carers, influencing their physical and emotional well-being. For caregivers in home care settings, the unpredictability of fatigue may cause added stress, especially when they are balancing caregiving with other responsibilities. The physical and emotional toll of managing fatigue, combined with limited resources, can lead to burnout if professional support is not provided. This can be mitigated by offering patients and caregivers structured guidance on how to monitor fatigue symptoms, such as through telehealth services or fatigue diaries. [13,14]

In residential aged care settings, family members often play a key role in advocating for their loved ones. While they may not be directly involved in day-to-day care, they can have an important influence on decisions regarding fatigue management. Residents and their families tend to prefer non-pharmacological interventions, such as task pacing or light exercise, which align with the person's desire to maintain a sense of agency and dignity. Clear communication between families and health professionals is essential for making informed decisions that prioritise the resident's comfort and quality of life. [7]

Acute care settings present distinct challenges for families, where they may face pressing decisions about fatigue management. In these fast-paced environments, fatigue is often deprioritised in favour of addressing more urgent symptoms, yet families may need to advocate for its inclusion in the care plan. Short-term pharmacological treatments, such as corticosteroids or psychostimulants, may be used to manage extreme fatigue, but they must be balanced with the patient’s overall symptom management strategy. The active involvement of family members, alongside allied health professionals, in these discussions can help ensure that fatigue is appropriately managed as part of a holistic care plan. [13]