What happens when someone is dying?

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. But 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 you 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 you 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 or syringe)
• 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

Your doctor may prescribe an oral gel that is used to help moisten the person’s lips and mouth.

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 sound noisy or 'rattling'. 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 you 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 you 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.

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 and 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 you 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 you 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’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 reduced circulation). Occasionally, a person’s hands or other parts of the body may swell a little. Their skin may also become mottled and blue or patchy and uneven in colour.

Should you be worried?

These changes are all normal parts of the dying process. If the person’s hands swell, please be assured that this is not usually painful. The swelling is not usually painful or uncomfortable.

Is there anything you can do to help?

It may be comforting to put gloves or socks on the person, and to make sure they are covered with a blanket or duvet.

You don't 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 become more restless and 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 you 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 full consciousness, rather like what can happen when we are half-awake or half asleep.

Is there anything you 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 may lose control of their bladder or bowels.

This happens because the muscles in these areas relax and don’t work as they did.

They may also have fewer bowel movements as they eat less, and their urine may get darker as they drink less.

Should you be worried?

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

Is there anything you 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 the person’s bladder to drain urine).

Incontinence pads can be used to absorb urine (avoid sanitary towels as they don’t absorb as well as incontinence pads) and absorbent sheets can be put underneath the person to soak up any leaks.

in the absence of specialist equipment

Men can urinate into a large empty jar such as a coffee jar. Women find it difficult to urinate in a bucket so a large towel folded between her legs that can go straight in the washing machine may be easier.

For stool (poo), a few sheets of kitchen roll or newspaper can catch stool and be immediately put into a binbag and tied off. If possible drop the stool off the newspaper into the toilet first, but beware – kitchen roll and newspaper may block your drain. Baby wipes are an easy way to gently clean the person’s body and should immediately be placed in the bin bag you are using for the person, not flushed in the toilet.

If you can’t get disposable gloves, ordinary rubber household gloves are fine and can be washed in the way you wash your hands under running hot water with liquid soap. Disposable gloves can be recycled by doing this too. Then hang them on the line to dry in the sun – sunlight helps sterilise.

If you cannot get washable or disposable bed pads you can improvise as follows: Lay any form of plastic sheeting you have available at home, or large opened large plastic bags (e.g. large bin liners) over the mattress, sticking joins with Sellotape or similar. Cover them with large bath-towels in a couple of layers, then put the sheet on top.

To change the sheet, lay it longways along the side of the bed and roll it longways. Then roll up the dirty sheet as you unroll the clean one to replace it gently rolling the person onto the clean sheet and off the dirty one. Immediately place dirty sheets in washing machine on a hot wash. 

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 you 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.

How can you help? Who else can help?

• Your GP can give information about this, and prescribe it. If the person is in hospital or a hospice, the doctor looking after them can discuss medication with you.
• The pharmacist can also give information about different medications.
• The person’s doctor can also suggest using alternative ways of giving the medicine if the person has difficulty swallowing or keeping it down.
• Your doctor/ nurse may arrange for you to have extra ‘just in case’ medicines at home so that these can be given if needed.

How can you help? Who else can help?

The doctor or nurse will be able to give some anti-sickness (or ‘anti-emetic’) medication. Sometimes these medications may have to be given as injections under the skin, often using a small, battery operated called a ‘syringe pump’.

Apply a cool, damp cloth to the person’s forehead.

Avoid strong smells, such as air freshener, aftershave/perfume, or smells from cooking.

Give the person smaller amounts of food rather than large meals.

Not necessarily. You can look out for body language which may tell you if a person is in pain, such as wincing, flinching, clenching their teeth, stiffening of the body or a scrunched up forehead. The person may moan occasionally but this could be just an involuntary sound or caused by a change in breathing rather than because they are in pain.

How can you help? Who else can help?

You can help by letting the doctor or nurse know as they will be able to check the person and give extra medication to help if needed.

If the person had been taking pain killers, usually this will need to be continued. If they cannot swallow, they may need this to be given by injection, possibly using a small, battery operated machine called a syringe pump.

How can i help? Who else can help?

The nurse or doctor can give you advice about this.

They can also help by:

• arranging an assessment of what equipment the person needs
• providing equipment for physical care (e.g. mouth care sticks)
• showing you how to use this equipment

You could talk to an occupational therapist about what equipment the person needs.

A physiotherapist or occupational therapist may also help with the person’s breathing and movement.

The person may be feeling angry, scared, guilty or confused.

How can you help? Who else can help?

A chaplain or spiritual care co-ordinator is trained to help people who are experiencing such feelings. They can provide support for the person who is dying and those who are important to them, whether or not they hold a religious belief.

If the person does have religious beliefs, they can also receive a visit from their local faith leader.

A counsellor, social worker or psychologist, as well as a nurse, may also be able to offer support.

Particularly in the last few minutes, the person’s face muscles may relax and they may become very pale. Their jaw may drop and their eyes may become less clear. The person’s breathing will eventually stop. Often, the person’s body will completely relax.

Sometimes it can be difficult to identify the exact moment when the person died. There may be one or two last gasps a minute or so after what seemed like the last breath. However, you should note down the time as close as possible to the moment they died.

This is always a profound moment, even when death has been expected for days. You may suddenly feel overwhelmed with sadness; you may want to be alone, or you may want to ring family and friends. By this time you may be exhausted with the caring and the waiting, and the relief and finality of the moment of death can take you by surprise.