It can be helpful to understand what might happen when you or someone important to you is nearing the end of life. It will help you to prepare and understand what you can do to help. However, it‘s important to remember that not everyone follows a set pattern; each person’s death is unique.

Death can sometimes occur suddenly or earlier than might have been expected. You may experience or see some, none or all of these signs in the last days and hours of life. If you have any worries or concerns, please speak to the doctor or nurse involved in your or your loved one’s care. They will be able to help.

Although this information falls within the section ‘If you have been diagnosed with an incurable illness,’ we are aiming this article at family members rather than directly to the patient. Our experience at Katharine House Hospice is that it is family members who find information about what to expect at the end of life more helpful.

Tiredness and reduced energy

The dying person will have much less energy. This may mean they become less able to interact with others or do things they previously found enjoyable. The person may appear withdrawn and show less interest in the world around them. They may not be able to talk as much and will tend to sleep more than usual.

In the days or hours before death, the dying person is likely to respond less to voices and touch and may drift in and out of consciousness. Sometimes, quite unexpectedly, they might suddenly be more alert and talkative and even look as if they have improved. This may be a ‘window of opportunity’ to say anything you might feel you still need to say and to have some valuable time together.

What you can do

  • Remind them who you are before you speak.
  • Use gentle touch and provide reassurance. Tell them where they are, and what is happening around them.
  • Even if they are confused or in a coma and cannot respond to you, it may be very reassuring for the person to hear familiar voices.
  • Remember that hearing is said to be the last sense to go, so assume that everything you say may be heard and understood, even if they don’t
  • Sometimes the sounds of familiar music, the radio or television programmes can help the person to relax.
  • Also allow quiet and restful times, as sometimes peace and calm are what the person needs.
  • Sometimes it is important just to be there and not necessarily talk or touch – be reassuring so that they know a loved one is there.

Loss of appetite

When a person is dying, they will often lose interest in food and drink. This is because their body no longer needs fuel to keep it going. This is a normal part of dying. It is important not to push food or drink onto someone that no longer feels like eating or drinking, as this can be upsetting for both them and you – and even harmful.

It can also become more difficult for the person to swallow, and they may not be able to swallow safely. If you notice the person is coughing when or after they swallow, this could be a sign they are unable to coordinate their swallowing movement safely, so food or drink may be going down the wrong way.

This is called ‘aspirating’ and can cause distressing symptoms. The doctor and nurses caring for the person may talk about options, including altering food and fluid consistency for their safety and comfort.

What you can do

  • Offer food and drink if it is wanted, but don’t worry or press them to eat or drink if they don’t want to.
  • Tell the doctor or nurse if the person coughs when taking food or drink, so they can give advice.
  • Offer ice chips or sips of fluid to moisten the mouth.
  • Wet the lips and mouth with a soft toothbrush dipped in water.
  • Apply lip balm to protect the lips from dryness.

Change in bladder and bowel function

As energy levels drop and the person is less able to move around, they may no longer be able to get to the toilet or commode. It is very important to help the person remain as dignified and comfortable as possible.

People who are at the end of life often lose control of their bladder and bowels. This is normal and the nurse will advise you about how to manage this.

What you can do

  • Reassure your loved one that there is no need to be embarrassed if they have lost control of their bladder or bowels.
  • Keep affected areas clean and dry to promote comfort and avoid pressure sores (also known as bedsores).
  • Tell the doctor or nurse if the person is constipated or has become incontinent so they can give advice. For some people, a catheter might be used.

Confusion or hallucinations

People who are dying often experience confusion, vivid dreams and hallucinations (delirium). You may notice the dying person talking to or seeing things or people that are not present.

It is not unusual for them to see or hear people important to them who have already died. This is quite normal but can be unsettling for loved ones who are unsure how to respond.

Sometimes these dreams and hallucinations do not cause the dying person any distress, and can even be comforting, but sometimes they can be frightening or distressing.

If they are distressing for the dying person, the doctor will be able to adjust their medication, helping the person feel calmer and more settled.

What you can do

  • Remind the person where they are and tell them who is with them and what’s happening around them.
  • Contradicting or trying to explain to the person is unlikely to help. If this happens, try not to challenge what they believe to be real; distraction can sometimes be helpful.
  • Tell the doctor or nurse if the person is having vivid dreams or hallucinations, particularly if the person is distressed by them, as changes to their medication might be needed.

Restlessness and agitation

Restlessness and agitation are common at the end of life. Sometimes there is a clear cause (such as pain, a full bladder or rectum, or anxiety) that can be treated, but sometimes it’s difficult to tell why a person is unsettled.

Restlessness can be the result of unresolved issues or worries. People who are dying often need to be reassured that those things they were previously responsible for will be taken care of and that those they are leaving behind will be all right.

Sometimes they are worried about something they have said or done in the past; that any wrongdoing will be forgiven; that their life had meaning and that they will be remembered.

What you can do

  • Even if the dying person knows you well, they might not recognise you, so always introduce yourself and remind them who you are, where they are and what is going on around them.
  • Use a soft gentle voice and reassuring touch.
  • Be sensitive to any cues that might be a sign there is something the person wants to resolve before they die.
  • Tell the doctor or nurse if the person is restless. They will be able to assess for any probable causes and see if there are any medications that might be helpful.
  • Stay calm yourself – a peaceful and relaxed environment can help to reassure the person and help them to feel settled.

Changes in breathing

You might notice a number of different changes in the person’s breathing. It can become shallow and fast, or slow and laboured. There might also be gurgling or rattling sounds as the person breathes.

Saliva and mucous, which are usually cleared by swallowing or coughing, collect at the back of the throat; it is air passing through these secretions that causes this sound. This noisy breathing is often not distressing for the dying person.

Breathing can also become very irregular. A particular pattern frequently seen at the end of life is called Cheyne-Stokes breathing. This involves very slow breathing or periods of time without a breath, followed by more rapid breathing or a much deeper breath.

This is not uncomfortable or distressing for the dying person but might be unsettling to see or hear. It is a sign that death may be near.

What you can do

  • Try to remain calm - your calmness can help reassure the dying person. Speak calmly and use gentle, reassuring touch.
  • Adjusting the head of the bed (mechanically or with pillows) or turning the person onto their side can sometimes be helpful.
  • If secretions are collecting in the mouth, gently turn the person’s head to the side so gravity can help to drain them.
  • Tell the doctor or nurse if you are worried that the person’s breathing has become more difficult, or you are concerned they are distressed.

Download the NHS Oxford University Hospitals Foundation Trust (OUH) leaflet

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