Sleep problems in palliative care

Sleep problems are very common in people living with a terminal illness, though not everyone is affected. Sleep problems can be distressing for the patient and the people who are close to them. There are practical things you can do to encourage good quality sleep.

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Common sleep problems

Sleep is a complex function and is essential for our wellbeing. The pattern of when we wake and when we sleep is part of the body’s overall circadian (daily) rhythm. This sets the pattern for other essential functions including controlling temperature and hormone levels.

Common sleep problems in terminal illness include:

• Insomnia – difficulty getting to sleep or staying asleep, or not feeling rested after sleep. This means people feel tired during the day. And they will feel as though they cannot function as they would if they had slept better.
  
• Disorders of the sleep-wake cycle – this can happen when someone’s sleep at night is disrupted.  It could be caused by a noisy environment or it could be due to distressing symptoms or worries. Disrupted sleep at night can then mean a person is more tired during the day. Reduced activity in the daytime then contributes to not feeling sleepy at night and can cause a cycle of disturbed sleep.
  
• Excessive daytime sleepiness – when people have difficulty staying awake during the day and may fall asleep or become drowsy. This is different to the tiredness and fatigue which is common in people with a terminal illness.
  

The quality and quantity of sleep can have a significant impact on a person’s wellbeing and quality of life. Being tired and unable to sleep can make physical symptoms and difficult emotions harder to manage. Difficulty sleeping can also lead to low mood and anxiety.

What causes sleep problems?

There are many reasons why someone may have sleep problems or a change in their sleep patterns, and there is often more than one contributing factor.

Common causes include:

• uncontrolled pain
• nausea and vomiting
• restless legs syndrome – a common condition of the nervous system that causes an overwhelming urge to move the legs and is associated with many illnesses including anaemia and chronic kidney disease
  
• bladder or bowel symptoms – having to get up to go to the toilet or being incontinent
• depression
• anxiety, worries, spiritual concerns and distress
• reduced activity during the day
• delirium
• medication, such as steroids and some antidepressants
• respiratory problems, for example breathlessness, cough or obstructive sleep apnoea
• taking caffeine, nicotine or alcohol  
• withdrawal from medicines or substances, such as nicotine or alcohol 
• other uncontrolled symptoms, such as sweating and itch
• environmental conditions, such as noise and light levels, and visitors staying late.

Some people may already have had difficulty sleeping before they were diagnosed with a terminal illness.

What can I do to help?

There are practical things you can do to support someone to get good quality sleep. If you are concerned about uncontrolled symptoms, or if simple measures are not improving sleep, speak to the person’s GP or specialist nurse who can arrange further assessment and treatment. The person might also benefit from emotional support and relaxation therapies.

Practical tips

Check with the patient about what changes they want to make. The overall aim should be to improve their quality of life and make them as comfortable as possible.

The following tips may help.

During the day:

• Encourage the person to go to bed and get up around the same times each day.
  
• If possible, avoid napping during the day.
  
• If appropriate, encourage physical activity during the day.
  

Managing symptoms:

• Check that the patient is comfortable and that pain and other symptoms are well controlled.
  
• Speak to their GP or specialist nurse if you’re concerned about any symptoms.
• If they are living at home, you can ask for a referral to a district nurse for a review of their mattress.
• If the patient is spending large amounts of time in bed and they find it hard to change their position, regular repositioning by care staff can help to keep them comfortable and so better able to rest and sleep.

Preparing for bed:

• Help the patient to feel relaxed before going to bed. Listening to music or relaxation techniques such as deep breathing might help. If they're able to have a bath, then some people find this can be helpful too.
• Encourage them to avoid caffeine, nicotine or alcohol before they go to bed. Some people will be able to drink tea and coffee earlier in the day without it affecting their sleep, but it’s best to avoid it in the evenings.
• Ask visitors not to stay too late. If the person is finding it tiring having visitors, then you may need to ask them to leave. Some patients find it difficult to sleep if their partner or family member is in the room, so you may need to be mindful of this.
  

Sleeping environment:

• Set up their sleeping environment to be quiet, calm and at a comfortable temperature.
• Use earplugs and eye masks if noise and light levels could be disruptive.
• Encourage them to avoid electronic devices such as tablets and smartphones before wanting to sleep.
• If someone cannot sleep because of worries and concerns, it may help if they have a pen and paper beside their bed so they can write things down and deal with them in the morning.

Talking and wellbeing

Encourage the person to talk about any worries or fears that are keeping them awake. They might benefit from talking to a professional such as a psychologist, counsellor, faith leader or spiritual advisor. Cognitive behavioural therapy (CBT) can be effective too. They may be able to access these services from their local hospice or through their GP.

You could suggest free sleep apps or podcasts that are designed to help people fall asleep.

Wellbeing therapies such as aromatherapy, massage or hypnotherapy might also be helpful.

Medical management

If you think that the patient may need medication to help them manage sleep problems, speak to their GP, district nurse or specialist nurse. There are different ways they can help:

• Review any medicines, such as steroids, that might be contributing to sleep problems.
• Make sure that any symptoms, which could be contributing to sleep problems, are being managed as well as possible.
• Arrange further assessment or prescribe medicines.

Medicines might include:

• short-acting benzodiazepines such as lorazepam or temazepam
• hypnotics such as zopiclone or zolpidem.

End of life sleep changes

People often become more drowsy and sleep more towards the end of life. This is one of many signs that a person may have when they are in their last few days and hours of life, but not everyone will experience this. Everyone is different. This may be concerning for family and friends as it can make communicating with their loved one more difficult.

Read more about the signs that someone is in their last days of life.

Management of sleep problems will change at this stage. It might not be appropriate to encourage someone to be active or to avoid sleeping during the day.

Encourage the patient’s family to talk to them every now and then, to let them know they're close by. The patient may still be able to hear what is said, so it can be comforting to them if family and friends carry on talking to them. Remind them not to say anything that they wouldn’t want the patient to hear. 

How can I support family and friends?

Sometimes people who have an altered sleep-wake cycle cannot get back into a normal rhythm of sleeping during the night and being awake during the day. They may prefer to sleep when they feel tired, regardless of the time of day. This can be difficult for family and friends as it means adjusting to a new pattern. Explain what’s happening to family and friends and help them to find new times to spend with the person.

Sleep problems are also common in people who are caring for someone with a terminal illness. Family members and friends may be caring for someone overnight which will disrupt their sleep and could affect them during the day. They may also have difficulty sleeping due to stress or worries and fears about their loved one. Sleep problems are associated with depression in carers. You might find it helpful to share our information for carers on getting support for themselves.

Useful resources

NICE CKS: insomnia  

NHS information for patients and carers: insomnia