While some children remain responsive, many children spend more time asleep than awake. This increased sleeping is caused by a combination of factors. The progression of their illness can affect vital organs and will cause increased drowsiness. Medications to control pain may also contribute to increased sleep. Despite a loss of wakefulness, people at this stage can still hear and feel touch. You may want to play your child’s favourite music and have familiar voices talking to them.
Restlessness and agitation
Some children become confused and agitated in the last few days of life, causing them to wake from sleep and become unsettled. This is not uncommon and can be caused by anxiety and fear, increased pain, nausea, decreased levels of oxygen or changes in their body’s functions.
For children who are unable to speak at this time, displaying unsettled behaviour may be their only way of communicating that they are uncomfortable. It is important to check that there is no obvious reason for their distress. Examples can include a wet bed, hot or cold body temperatures or uncomfortable resting body position. Gently talking to your child and reassuring them that you are there will help in reducing anxiety. Simple measures like holding the hand and stroking their face can help to make them feel safe and secure.
Playing music or videos, or sharing stories or prayers may also be comforting.
If your child continues to be unsettled and distressed, it is important that you phone for advice, even if it is in the middle of the night. The distress may be from increased pain and their pain medication may need to be adjusted. This could be all that is needed. If the restlessness is from other causes then it may not be possible to correct these and instead the focus will need to be on ensuring your child is comfortable. This may be achieved by giving other medications. If it is not possible to give oral medications, then the medication can be given rectally or subcutaneously through a syringe driver. These medications will decrease agitation but may also have a sedative effect, making it difficult for your child to speak to you. It is likely that they will still be able to hear you and will be greatly comforted and reassured by hearing familiar voices and knowing that the family is there.
Loss of bladder and bowel control
On occasion, as a result of weakness or relaxation of the muscles to the bladder or bowel, children may lose the awareness of the need to go to the toilet. If this happens, there are options available to ensure that the child’s dignity is maintained and that they are kept dry and comfortable. Parents may choose to use nappies, disposable incontinence pads or disposable draw sheets. In some situations a catheter into the bladder to drain urine may be considered.
As a child becomes more drowsy the level of consciousness or awareness decreases. As a result it may be more difficult to clear secretions from the mouth. This may make breathing sound noisy or ‘rattly’. This noisy breathing will cause no pain to your child, however family may find it very upsetting. Sometimes lying your child on their side will reduce this sound and having music on in the background can also reduce the awareness of this. Medications can also be given through a syringe driver to help. If these methods are not helpful, a portable suction machine may help by gently removing excessive saliva from your child’s mouth. If special equipment is required, the care team will assist you in learning how to use it.
Circulation and breathing changes
With further progression of your child’s condition, circulation to the hands and feet is often reduced making them feel cool to touch, pale, bluish, or mottled in colour. Putting on their favourite socks and using a doona or blanket over their arms and legs can help. You may also want to stroke your child’s face, as sensation to the hands is reduced with impaired circulation.
A change in the rate or depth of breathing can also occur. At times your child may even seem to stop breathing and then start breathing again. This is called “Cheyne-Stokes breathing” and may continue for a few hours or even longer until they die. This type of breathing causes no distress to your child however, it can be very distressing for you and your family to watch.
If your child has had irregular breathing it is often hard to know when breathing has finally stopped. Parents often have an awareness of when their child has died. The most important role for parents at this time is to just be with your child for as long as you want.