Sleeping problems

Key messages

Definition and prevalence

Sleep disturbances in palliative care refer to a variety of conditions, including insomnia (difficulty initiating or maintaining sleep), hypersomnia (excessive sleepiness), sleep-disordered breathing (e.g., obstructive sleep apnoea), and circadian rhythm disruptions. These problems are prevalent among both patients and caregivers in palliative care, with causes often multifactorial, including physical, psychological, and environmental factors. [1]

Physical symptoms such as pain, breathlessness, and nausea frequently contribute to disrupted sleep, especially in patients with advanced conditions like cancer, end-stage renal disease, and neurodegenerative diseases such as dementia. [2,3] Additionally, psychological factors such as anxiety, depression, and existential distress are common in palliative care settings, further exacerbating sleep disturbances like insomnia. [1]

The prevalence of sleep disturbances is particularly high in this population. Between 50-80% of advanced cancer patients experience significant sleep disruptions, predominantly insomnia. [2,4] Similarly, over 60% of patients with end-stage renal disease experience sleep-disordered breathing and other sleep disruptions. Up to 60% of people living with dementia suffer from sleep issues including nocturnal agitation and excessive daytime sleepiness. [2,3] Caregivers, especially those caring for people living with dementia, are also highly susceptible to poor sleep, with approximately 70% reporting disrupted sleep due to emotional and physical caregiving burdens. [5,6]

Assessment

Assessing sleep disturbances in palliative care requires a holistic approach, considering both subjective and objective measures. Self-report tools, such as the Pittsburgh Sleep Quality Index (PSQI) and Insomnia Severity Index (ISI), are frequently used to gauge patients' sleep quality and identify specific disruptions. [1] These tools can be beneficial, yet their effectiveness may be limited in patients with cognitive impairments, such as those people living with advanced dementia. [2,3] In these cases, caregiver input becomes essential, particularly for monitoring nocturnal behaviours like wandering and agitation. [5,6]

For patients with advanced cancer, the assessment often focuses on identifying sleep-related issues linked to physical symptoms, including pain, breathlessness, and nausea. [2] Objective measures, for example, actigraphy or polysomnography, may provide valuable insights, particularly in detecting sleep-disordered breathing or fragmented sleep. [1] However, the feasibility of these assessments in a palliative care setting can be challenging, given the burden of illness and the limited availability of advanced diagnostic tools in many care environments.

In patients with neurodegenerative conditions, particularly dementia, assessments should consider both behavioural symptoms and the impact of circadian rhythm disturbances. [2,3] Informal caregiver reports are often important in such cases, as patients may be unaware of their sleep disruptions. [5,6] Additionally, non-verbal cues like restlessness or changes in night-time activity may be indicators of poor sleep quality, which standard assessment tools may not fully capture.

Non-pharmacological treatment

Non-pharmacological interventions are increasingly seen as valuable in managing sleep disturbances in palliative care, particularly due to the limitations of pharmacological treatments. Cognitive Behavioural Therapy for Insomnia (CBT-I) has been identified as a potentially effective approach, especially in cancer patients, as it targets the negative thought patterns and behaviours that contribute to poor sleep. [4] By doing so, CBT-I may reduce reliance on medications and improve overall sleep quality. [7] Physical activity, such as light to moderate exercise, has also been found to alleviate fatigue and pain, key factors in sleep disruption for patients in palliative care. [4]

Relaxation techniques, including mindfulness, meditation, and progressive muscle relaxation, have been associated with improvements in anxiety and sleep quality. These interventions are particularly useful for patients experiencing existential distress, as they may help reduce psychological discomfort and promote emotional well-being. [7, 8] While mindfulness-based therapies show promise for improving sleep, their effectiveness can depend on patient engagement and the complexity of the underlying condition. [1]

Environmental modifications can also play a key role in improving sleep, particularly in institutional care settings where disruptions are common. Ensuring a quiet, dark, and comfortable sleeping environment is important, especially for patients in hospital or care homes. [1] For individuals with dementia, maintaining consistent routines and reducing stimuli such as excessive light and noise may help manage nocturnal agitation. [3] Sensory interventions, such as the use of weighted blankets, are also being explored as potential strategies, though more research is needed to confirm their effectiveness across different patient groups. [7]

Pharmacological treatment

Pharmacological treatments are frequently employed in palliative care when sleep disturbances significantly affect quality of life and non-pharmacological approaches are insufficient. Benzodiazepines are widely used for their sedative and anxiolytic properties, helping to manage insomnia related to anxiety. However, long-term use is typically discouraged due to risks including dependence, cognitive impairment, and the potential for exacerbating sleep-disordered breathing, particularly in patients with respiratory conditions or frailty. [1,3] Careful consideration of dosage and patient condition is essential, particularly in elderly populations where side effects may be more severe. [8] If required for the treatment of insomnia, short-acting benzodiazepines are recommended in general. Currently, temazepam is the only benzodiazepine recommended for insomnia by Australian guidelines. [9]

Non-benzodiazepine hypnotics, such as zolpidem, are often viewed as alternatives, offering sleep benefits with a potentially lower risk of dependency. Nevertheless, these agents are not without concerns, as they can still lead to confusion or increased fall risk, especially in older adults. [1] Sedating antidepressants like mirtazapine are another option, particularly for patients experiencing concurrent depression or anxiety. Mirtazapine not only aids in improving sleep but may also address issues like poor appetite and low mood, making it suitable for palliative care patients with complex needs. [3]

Antipsychotic medications, such as quetiapine, are occasionally prescribed for patients experiencing severe agitation or hallucinations that interfere with sleep. These drugs can be helpful but carry risks of extrapyramidal side effects and cardiovascular issues, particularly in frail or elderly patients. [4] Melatonin, a hormone that regulates sleep-wake cycles, has also been considered for patients with circadian rhythm disruptions, although evidence supporting its effectiveness in palliative care remains limited. [7] The overall goal in pharmacological treatment is to balance efficacy with safety, particularly in a population that may be more vulnerable to adverse effects.

Sedating antihistamine diphenhydramine is a readily accessible over-the-counter sleep aid; however, it is not recommended for routine use in the palliative care setting particularly in patients with end-stage kidney disease as it is poorly dialysed. [10] This pre-disposes patients to anticholinergic side effects including delirium and increased risk of falls.

Equity and access

Equitable access to sleep management in palliative care is often influenced by structural and social determinants of health. Rural and remote populations face distinct barriers to receiving specialised sleep treatments, particularly non-pharmacological interventions like cognitive behavioural therapy for insomnia (CBT-I). The geographic isolation often necessitates a greater reliance on pharmacological solutions, which may not always be ideal for older or frail patients, especially when side effects like sedation pose additional risks. [1]

For culturally and linguistically diverse (CALD) populations, language barriers and cultural differences in the perception of sleep may result in underreporting or miscommunication about sleep issues. This can limit access to tailored treatments that align with their cultural needs, particularly non-pharmacological interventions, which are often less accessible in culturally specific formats. [11] Culturally competent care is essential to ensure effective management of sleep disturbances in these populations.

Aboriginal and Torres Strait Islander peoples may experience further inequities, including limited access to culturally safe sleep interventions in palliative care. Incorporating traditional understandings of sleep and health into clinical practice could enhance trust and improve outcomes, especially where Western sleep management strategies may not align with cultural values. [12]

Care context

In aged care facilities, managing sleep disturbances among older adults involves a careful consideration of both pharmacological and non-pharmacological treatments. Sedative medications, while sometimes necessary for managing insomnia, may increase risks such as confusion and falls, particularly in patients with dementia. [3] Therefore, non-pharmacological interventions, such as maintaining consistent sleep routines and reducing environmental disruptions, are often preferred as safer strategies to support better sleep.

In non-cancer conditions, such as end-stage renal disease, sleep disturbances are frequently associated with symptoms like restless legs syndrome and sleep-disordered breathing. Addressing these symptoms, whether through pain management or correcting metabolic imbalances, may help improve sleep. [2] However, pharmacological treatments need to be carefully balanced, as they can potentially exacerbate other symptoms or lead to side effects. [1] This suggests that tailored approaches based on the specific condition may be most appropriate for these patients.

In paediatric palliative care, managing sleep disturbances requires sensitivity to developmental needs. Non-pharmacological treatments, including structured bedtime routines and creating a calming environment, are often prioritised. When pharmacological treatments, such as melatonin, are considered, they are typically prescribed with caution to minimise any potential long-term impacts. [6] Parental involvement is often seen as important in ensuring that interventions are effective, particularly in supporting the emotional well-being of the child.

Implications for families and carers

Sleep disturbances in palliative care patients can lead to considerable challenges for families and carers, who may experience disruptions to their own sleep. Caregivers, especially those supporting individuals with dementia or advanced illness, often report difficulties maintaining their own sleep patterns due to the demands of caregiving. [5] Night-time disturbances, such as agitation or wandering, can require carers to be frequently alert, which may result in ongoing sleep deprivation and fatigue.

The emotional stress associated with caregiving can also contribute to poor sleep quality. The anxiety of managing symptoms and the emotional burden of impending loss may make it harder for carers to prioritise their own rest, potentially affecting their well-being. [13] Addressing these sleep challenges through respite care or emotional support could help carers manage both their responsibilities and their own health. [1]

Families and carers might also benefit from education about managing sleep disturbances in patients. Implementing practical strategies, such as adjusting the environment or using sensory aids, can sometimes improve sleep quality for both the patient and the carer. [3] Offering targeted support for carers may help alleviate some of the sleep-related strain, enabling them to maintain their well-being while continuing to provide care.