Changes in the last days of life

There are a number of signs which may indicate that a person is dying, ranging from a loss of appetite, changes in breathing, restlessness or agitation, or drowsiness.

The person's appetite is likely to be very reduced

They may no longer wish to eat or drink anything. This could be because they find the effort of eating or drinking to be too much. It may also be because they have little or no need or desire for food or drink.

Eventually, the person will stop eating and drinking, and will not be able to swallow tablets.

Should I be worried?

If a person stops eating or drinking because of their reduced appetite, this may be hard to accept, but it is a normal part of the dying process.

If they stop drinking, their mouth may look dry, but this does not always mean they are dehydrated.

It is normal for all dying people eventually to stop eating and drinking.

Is there anything I can do to help?

If the person is conscious and they want something to eat or drink, you can offer sips, provided they can still swallow.

You can give some comfort to a person with a dry mouth by:

  • offering a drink through a straw (or from a teaspoon);
  • moistening the mouth with a damp sponge - special kinds of sponge are available for this purpose (the person may bite on this at first, but keep holding it, as they will let go);
  • placing ice chips in the mouth;
  • applying lip balm.

The person's breathing may change

As a person's body becomes less active in the final stages of life, they need less oxygen, and their breathing may become shallower. There may be long pauses between their breaths.

Sometimes the person's breathing may also make a noise, commonly known as the "death rattle". This is likely to be because they are not able to re-absorb or swallow the normal fluids in their chest or throat, which can cause a rattling sound.

In the very last moments of life, the person's breathing pattern may change. Breaths may become much slower and quieter before they stop altogether.

Should I be worried?

A change in the breathing pattern is a normal part of the dying process. If the person is anxious, their breath rate may increase a little.

The rattling sound may be upsetting to hear, but it does not seem to cause any distress to the dying person. It can be a bit like snoring - which affects those who hear it more than the person who is making the sound.

The person does not usually need extra oxygen at this stage.

Is there anything I can do to help?

If the person is anxious, sitting with them so that they know you are there may help to reduce their anxiety. Breathlessness can be frightening - a small fan and an open window can help.

If the breathing is very rattly, it may be helpful to change the person's position so that they are on their side if they agree or do not seem too disturbed by being moved. You can ask to be shown the best way to move the person - ask about sliding sheets.

The doctor or nurse may also suggest medication which may help to reduce the fluids in their chest or throat. This is not always needed, and it does not always make a difference.

The person may become much sleepier

The person is likely to spend more time sleeping, and will often be drowsy even when they are awake.

They may also drift in and out of consciousness. Some people become completely unconscious for a period of time before they die - this could be short, or as long as several days.

Should I be worried?

It is normal for a dying person to sleep more. They may generally become less interested in what is going on around them, and have less energy to take part, but this does not necessarily mean they are no longer hearing what you say to them.

Is there anything I can do to help?

It is important to remember that, even when the person is or appears to be sleeping or resting, they may still be able to hear you. Do not feel that you need to stop communicating with the person.

You might want to carry on speaking quietly and calmly to them. You could also try letting them know you are there in other ways - for instance: holding their hand, reading to them, or playing their favourite music.

The person may become more restless or agitated

This may happen in the last few days of life, though the person may become more peaceful again before they die.

Sometimes they may appear confused and may not recognise familiar faces. They may hallucinate, and see or hear people or things that are not actually there - for instance, they may see pets or people who have died.

Should I be worried?

Restlessness and agitation can be caused by many things. It may be manageable by quiet reassurance and the comfort of people like you who are close to the person, though it may still be distressing for you to see.

Agitation could also be caused by physical problems, like constipation or difficulty passing urine - ask the doctor or nurse caring for the person if you are concerned about this.

If the dying person does not recognise you, this may be distressing for you but it is not a sign that they feel differently about you. More likely, it is that they are unable to clearly distinguish between what is real and what is not - especially if they are a bit sleepy and drifting in and out of consciousness, rather like what can happen when we are half-awake or half-asleep.

Is there anything I can do to help?

Simply sitting with the person may often help to calm them down. Keeping things as normal as possible may help comfort the person.

You can also talk to the doctor or nurse, as they can check if there is any treatable reason for this or may be able to offer medication to help settle the person's anxiety.

You can help by:

  • speaking clearly and audibly to the person;
  • telling/reminding them who you are (and being prepared to do so repeatedly);
  • keeping their surroundings calm with minimal changes in noise level;
  • trying not to correct them if they say something wrong, or insist on them getting things accurate, as this may be upsetting for you and for them.

The person's skin may feel cold and change colour

The person's hands, feet, ears and nose may feel cold to the touch (this is due to a reduced circulation). Occasionally, a person's hands or other body parts may swell a little.

Their skin may also become mottled and blue, or patchy and uneven in colour.

Should I be worried?

These changes are all normal parts of the dying process.

If the person's hands swell, please be assured that swelling is not usually painful or uncomfortable.

Is there anything I can do to help?

It may be comforting to put gloves or socks on the person. You do not need to warm them up - but doing so may help you to feel more comfortable.

Gentle massage may help - the nurses may show you how.

The person may lose control of their bladder or bowels

This happens because the muscles in these areas relax and don't work as they did. The person may also have fewer bowel movements as they eat less, and their urine may get darker as they drink less.

Should I be worried?

This may be distressing to see, and you may worry that the person may feel embarassed.

Is there anything I can do to help?

You can ask a nurse to help by showing you how to:

  • keep the person clean and comfortable;
  • protect the bed.

You can also ask the nurse or doctor for equipment that may be able to help with this, such as incontinence pads or a catheter (a long thin tube that can be put into a person's bladder to drain urine).

The person's eyes are closed

It is important to know that in these final stages, the person may close their eyes often. At some point, they may not open them again. Their eyes may often be half-open, which can be distressing to see.

Is there anything I can do to help?

As they may still be able to hear you, take the opportunity to say the things that are important to you both.

I’d like to know more

The organisations and resources listed below can help you find out more about planning for end of life and hospice and palliative care.

Dying Matters

Dying Matters aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. They present useful information on subjects including making plans, writing wills, bereavement, talking to children about death and avoiding misconceptions about dying. All the leaflets are freely available to download and print from their section.

Care for children and young people

Together for Short Lives is a UK-wide charity that speaks out for all children and young people who are expected to have short lives. The Together for Short Lives Charter sets out what families should expect to receive from their local children’s palliative care services in terms of information and support.

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