Sleep issues

Please be aware - this information is for healthcare professionals

Sleep problems are very common in people living with a terminal illness, though not everyone will be affected. Because people are likely to be less physically active, their need for sleep reduces. Sleep patterns can change and people may find they sleep during the day and not at night, or are sleeping much more or less than they were. Some people develop insomnia (where getting off to sleep and staying asleep are difficult), and sleep is often poor quality.

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 feel much worse, and can be distressing for both the patient and their family. The patient may become irritable, uncomfortable and fatigued.

Why is my patient having difficulties with sleep?

There are many reasons why someone may have sleep problems or a change in their sleep patterns, and there is often more than one factor at work. Two major factors are unrelieved pain and discomfort, and psychological issues such as anxiety, depression, and hopelessness can also cause difficulties. The patient may be going over and over their concerns or may be frightened of dying at night in their sleep. 

Some of the other causes of sleep difficulties are:

  • neurological problems, such as cognitive impairment, delirium and restless legs
  • bladder or bowel symptoms
  • environmental conditions, such as noise and light levels
  • medication, such as diuretics and stimulants
  • respiratory difficulties, for example breathlessness or obstructive sleep apnoea
  • withdrawal from medicines or substances, such as nicotine or alcohol
  • other uncontrolled symptoms, such as sweating and pruritus
  • visitors staying late.

How can I help the patient?

You can help the patient by relieving any physical symptoms, by creating an environment that helps to promote sleep and by supporting relaxation techniques and therapy.
Firstly, check that the patient is comfortable and that any pain is well controlled. Manage symptoms such as breathlessness and nausea and check that physical needs, such as passing urine, have been taken care of. Make sure the patient is comfortable in bed; this can include managing incontinence and changing their position regularly.

Try these non-pharmacological measures:

  • Relaxation techniques, such as progressive muscle relaxation and meditation. These can help the patient to relax physically, and can also help to reduce feelings of fear and break the cycle of worry and troubling thoughts. Relaxation tapes or quiet music may also help. Some health professionals have additional training and can offer meditation, mindfulness and other relaxation therapies. Ask the patient’s GP or specialist nurse if there are local NHS services or organisations that can offer this kind of support
  • Encourage good sleep habits, such as using the bed only for sleep, getting up and going to bed at the same times and not sleeping during the day
  • Help the person feel ready and able to sleep. Create a sleep environment that is quiet, calm and comfortable
  • Ask visitors not to stay too late. If the patient 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. It may help to talk to family members and visitors about the person’s need for sleep and reassure them that it’s normal for sleep requirements to change
  • Encourage the patient not to have caffeine or alcohol before they go to bed, and not to use electronic devices such as tablets and smartphones for at least an hour before wanting to sleep
  • Earplugs and eye masks may help the person to feel more settled and able to sleep
  • If the patient has breathing difficulties, sitting upright in a riser/recliner chair may be more comfortable than sleeping in a bed. 

If the patient is distressed by sleep problems, then medication may help, though it should be used with caution. Hypnotic drugs, such as lorazepam, can be prescribed for people with sleep problems only, whereas sedatives may be used if the person has other symptoms such as pain or delirium. In people living with a terminal illness, the smallest dose is given for the shortest period.

If you think that the patient may need medication to help them manage sleep problems, speak to their GP, district nurse or specialist nurse.

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The patient is sleeping during the day but not at night, how can I help?

It’s common for sleep patterns to reverse because patients get disturbed at night, they’re often inactive during the day and their usual daytime routine has gone. This causes sleepiness in the daytime and later waking and settling times.

If the patient prefers to keep it this way, then carers and family members may need to accept it. Talking with family members may help them to understand why sleeping patterns change, why the person may have difficulty sleeping and the challenge of getting back into a night-time sleep routine.

If the patient wants to get back into a night-time sleep routine, try to support them in developing good sleep habits, having a regular bed time routine and being physically prepared for sleep. If possible, encourage the person to use their bed only for sleeping, rather than reading or watching TV.

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Do sleep changes mean that death is imminent?

Changes in sleep patterns don’t always mean that death is about to happen. For example, an excess of opiate medicines can cause drowsiness. However, in the last few days and hours of life a person’s level of consciousness usually starts to deteriorate.

If the patient starts sleeping more, has less and less energy and shows signs such as reduced appetite and withdrawing from family, then death may be imminent. Contact the patient’s GP, district nurse or specialist nurse if this happens.

The family say that the patient is sleeping more than they expect or want them to, what can I say?

When sleep patterns change, particularly when the person’s level of consciousness begins to alter, it can be very distressing for family and friends. People can become less alert, depressed and irritable and they may withdraw socially. The person may not respond when someone talks to them, and family members may feel they still have things left to say, but can’t say them.

Talk to family members about their concerns and find out what they understand the changes to mean. You may need to ask the GP, district nurse or specialist nurse to talk to the family about what is likely to happen next and prepare them for this. 

Encourage the patient’s family to keep talking to them, to stay close by and hold their hand. The patient may still be able to hear what is said, so it can be comforting to them if family members carry on talking quietly to them. Remind relatives not to say anything that they wouldn’t want the patient to hear.

Points to remember

  • Changes in sleep patterns are normal at end of life and may need to be accepted rather than changed
  • Not everyone’s sleeping patterns will change
  • Sleep difficulties can impact widely on the patient and their family, including affecting the patient’s response to physical symptoms and family communications in the last few days of life
  • There are many reasons why the person might find sleep difficult and there can be more than one factor at work
  • There are coping strategies that can be tried before using medication
  • Changes in sleep patterns don’t always mean that death is about to happen. However, in the last few days and hours of life a person’s level of consciousness usually starts to deteriorate.

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