Sleep Disturbance

Sleep is a very complex process. Good sleep depends on physical, emotional, spiritual and environmental factors. There are many reasons why people with serious illness experience sleep disturbances. Some of these reasons are associated with advanced illness, and some are specific to certain diseases and treatments.

Symptoms of illness
Symptoms commonly experienced with advanced illness may make it hard to sleep. These include pain, shortness of breath, anxiety, depression, and confusion.

Change in activity
A person’s daytime activity may affect nighttime sleep. Many people find they sleep better if they get more fresh air and exercise. Yet this is difficult for someone with a serious illness. Someone who is seriously ill spends more and more of the day lying down, which may make it hard to sleep at night.

Change in surroundings
Changes in sleeping environment may also disrupt sleep. At home, people who are ill often sleep in a different bed or room than usual. In a hospital, sleeping may be even more challenging, due to the different lights, noise and activity during the night. 

Worry
Thoughts, fears and worries that come with serious illness often make it hard to sleep. People often say their mind won’t shut off. They describe the experience of many thoughts playing over and over, and wishing for a remote control to shut off their mind or change the channel.

Specific diseases
Sometimes a disease or its treatment can change the structure and function of the brain and body, or the balance of chemicals in them. Any of these can disrupt sleep, especially changes that affect the central nervous system, respiratory system, or hormones.

Medications
Some medications interfere with sleep. For example, dexamethasone (also known as Decadron) is known to cause sleep problems. Diuretics (such as Lasix), which help the body get rid of extra fluid, may cause frequent urination, which interrupts sleep. Therefore, both of these medications are best taken early in the day.

To find out what is causing the sleep disturbance, the health care team will often ask questions, conduct a physical examination, or order some tests. This will help them make decisions about how best to manage the sleep disturbance.

Questions from the health care team

Your health care team may ask some of the following questions to understand the extent of sleep disturbance, and what may be causing it:

• How many hours do you sleep at night?
• How would you describe your sleep?
• What time do you go to sleep in the evening?
• How long does it take you to fall asleep once you turn off your light?
• What time do you wake up in the morning?
• How often do you wake up or get up through the night?
• What wakes you up at night?
• How many times do you go to the bathroom at night?
• How much time do you spend awake during the night?
• Do you feel rested when you get up in the morning?
• Do you feel sleepy during the day?
• Do you sleep during the day? If so, roughly how many hours or minutes?
• What helps you to sleep at night?
• What makes it hard for you to sleep at night?
  • Do you feel sad or anxious?
  • Do you have restless legs?
  • Do you have nightmares?
  • Do you experience problems breathing?
• What effect is poor sleep having on you? On your family?
• Is your caregiver able to sleep?
• Do you use substances that are known to cause sleep problems? For example, caffeine  (e.g. coffee, tea, cola soft drinks), nicotine, and alcohol.
• What medications are you currently taking?
  
  

Physical examination

The health care team may want to do a general physical examination to sort out sleep disturbance, with particular attention to pain and other symptoms. The exam may give them clues about what is contributing to sleep disturbance, and may help them decide on possible tests and treatments.

Tests

The health care team may order laboratory tests, xrays, or scans based on the results of the physical examination and talks with the patient, to help sort out specific causes of sleep disturbance. Laboratory tests may measure blood counts and values related to nutrition, iron, hormone disturbances, oxygen and medication levels.   Tests may also include some that are specifically for sleep problems:
Actigraphy assesses sleep by measuring a person's movements over a given time period. It provides a picture of the rest and activity patterns.
Polysomnography is a comprehensive assessment in a sleep clinic. It includes detailed measurement of the person’s brain, lung and heart function. Whether the test is done or not depends on the person’s situation and the availability of testing facilities.

Consider all the things you can do to promote sleep. The following suggestions may help.

Be active during the day

• Try to maintain a regular sleep-wake schedule as much as possible.
• Be as active during the day as your condition allows. This may include visiting with family or friends, participating in a hobby, listening to your favorite music or a talking book, or doing some light exercises.
• Nap only when you have to. Avoid naps in the late afternoon or evening if possible.
• Avoid spending time in bed during the day if possible. For example, sitting in the living room provides a change in scenery and keeps your bed and bedroom associated with nighttime sleep. This is one way to help your body tell the difference between night and day, and helps to keep a day-night cycle.
  

Control the sleep environment

• Minimize nighttime interruptions caused by noise or light.
• Remove distractions such as clocks (unless you need to set an alarm).
• Straigthen bed linens to remove wrinkles and place pillows to improve comfort.
• Tidy the bedside area as part of a bedtime routine. This helps create a fresh environment for the night hours. It is another signal for your body to make the switch from day to night.
  

Minimize worries at bedtime

• Identify worries and concerns and talk about them well before bedtime if possible.
• Ask someone to be with you, or to be available to talk on the phone at bedtime, if that helps reduce your anxiety.
  

Pay attention to routine

• Keep a regular bedtime routine as much as possible. This may include washing your face and hands, mouth care, changing into pajamas, putting lotion on your skin and tidying bed linens.
• Notice what helps you relax and add that to your routine. This may be listening to soft music, reading or having someone read to you, having someone give you a hand, foot or back massage, watching TV, or praying.
• Have something warm to drink or eat if that helps you get to sleep.
• Try to go to bed when you’re drowsy so you avoid lying in bed awake. 
• Avoid caffeine (e.g. coffee, chocolate, coca cola) and nicotine (e.g. smoking) before bedtime.
  

Talk to your health care team

• Before talking to your team, think about what physical, emotional, spiritual or environmental factors might be contributing to poor sleep.
• Report your sleep problems to the team when you are reporting other symptoms and concerns.
• Report pain and other symptoms and work with your health care team so you feel as comfortable as possible. This will hopefully help you sleep better.
• Ask the health care team if they can prescribe long-acting medications or schedule doses so you do not need to wake up in the night to take them. If medication does need to be taken at night, have it pre-measured at your bedside and set an alarm. That way you do not lay awake worrying about whether you will wake up at the right time to take your medication. .
• If you have tried other approaches and still have trouble sleeping, ask your team about the possibility of a prescription for sleep medication.
  

Your health care team can do several things to help you sleep better:

• They will help you to manage any symptoms that make it hard to sleep, such as pain, nausea and vomiting, anxiety or shortness of breath. If you are comfortable, you are more likely to fall asleep and stay asleep.
• They can review and perhaps adjust your medication schedule, to minimize sleep interruptions at night. 
• They can consider prescribing sleep medication to improve your sleep.
• They can give you information about sleep and ways to improve sleep.

Your doctor or nurse may connect you to other members of the team who have  specialized skills:

• counselling to help alleviate anxiety or emotional or spiritual concerns;
• teaching relaxation or visualization techniques;
• symptom review and management by a team specialized in difficult symptoms;
• conversation with a social worker, spiritual care provider or hospice volunteer to help you work through emotional, social or spiritual concerns.

See also: Sleep and Caregivers

Content reviewed January 2023