What to Expect

This page includes valuable knowledge and information from the Hospice New Zealand Guide for Caregivers.

When someone has an advanced illness, death usually comes gradually and peacefully. There are common changes at this time are normal and don’t need special treatment, hospitalisation or professional help. If you’re unsure, call your hospice team or family doctor. It is impossible to predict when your loved one will die but doctors and nurses can give you an indication, based on some of the changes they see in your loved one. These are always just estimations.

What happens when someone is dying?

There are commons changes that occur as a person nears death, which we have outlined below. There are also ideas on what you can do to help during this time.

Not eating or drinking

As people get closer to dying, the body does not need food and fluid to function. Your loved one is likely to lose interest in food and drink to the point that they’re not eating or drinking anything at all. They may have lost the ability to swallow, so it’s okay to not give them drinks at this stage because liquid may collect at the back of their throat.

Increased confusion and restlessness

It is common for dying people to be quite restless or agitated in the last 24 to 48 hours before they die. Try to reassure them by talking quietly and calmly and reminding them who you are. Sudden noises or movement may startle them and make them more anxious. Constant touching or stroking may also be disturbing; try gently holding their hand instead. Quietly playing their favourite music may help to calm them at this time.

Vision and hearing

Sometimes dying people’s vision clouds – they get a faraway look in their eye and don’t seem to focus on anything or anyone. Leaving a soft light on – both day and night – may help. Hearing may not be as acute as it was, although this may be the last sense to be lost, and sometimes people report their loved one’s hearing is very strong. Encourage quiet conversation in the room so your loved one knows people are there and they are not alone.

Incontinence

People near death often lose control of urination and bowel movements (incontinence). Make sure there’s protection of some sort for comfort and hygiene and if possible, set this up so pads can be replaced with as little disruption and stress to your loved one as possible. It is likely that prior to the last few days, you have made a plan with your healthcare team to give your loved one a catheter or use incontinence pads or pants.

Breathing

As your loved one finds it harder to swallow, saliva and secretions may collect at the back of their throat and make a noise when they breathe – this is sometimes called the ‘death rattle’. This isn’t distressing for the person who is dying but it might be hard for you and other family to hear this. Sometimes raising the head of the bed with pillows helps.

Changing colour

As blood circulates more slowly, your loved one’s arms and legs will start to feel cool and may look patchy/mottled and dark. Their face may be pale and pinched looking, their nose may feel cold and the beds of their fingernails and toenails may turn blue in colour. You may notice their skin is clammy and marks easily where they’re touched even by clothing and bedding. These changes are all normal and to be expected.

Watch Dr Kathryn Mannix, Palliative Medicine pioneer talk about what happens as we die.

How to tell if your loved one has died

Their breathing stops
Their chest stops moving up and down
They have no heartbeat or pulse
They don’t respond when you shake them or talk loudly
Their eyes are fixed, and their pupils are dilated (sometimes their eyelids stay open)
Their jaw relaxes (sometimes their mouth stays open)
They may have lost control of urination and bowel movements.

What happens after your loved one dies

If your loved one dies naturally from advanced illness at home, you don’t need to take any immediate action when they die – you and your family can just be with them. If you are comfortable having your loved one with you, you’ll need to lie them on their back with their head and chest raised slightly on pillows and their hands on their chest. If they have died with their mouth open, you can roll up a towel to tuck under their chin and help to close their mouth. Positioning the body in this way is important before stiffness (rigor mortis) sets in, usually after several hours. Bodies are often heavy so you may need help with this – phone your hospice nurse if you need help at this time.

If you choose to, you can keep the body at home. There are a number of organisations who can support you with this, who will guide you through cleaning, preparing and caring for your loved one’s body until they are being buried or cremated. If you prefer to have your loved one’s body collected and taken to a funeral home, you can call them when you are ready, and they will arrange transportation for you. Funeral homes can be contacted 24/7. If your loved one dies suddenly or in unusual or suspicious circumstances, it is important to call the police and an ambulance.

Read more about what to expect from the Hospice New Zealand Guide for Caregivers.

What to do when your loved one dies

If your loved one dies at home of natural causes like advanced illness, you don’t have to do anything straight away. You can spend time with your loved one until you’re ready to call for support from your hospice team or family GP. A doctor will come to visit and will need to confirm the time and place of death to prepare a death certificate for your loved one.

If your loved one dies during the night and you are comfortable having them at home, you can wait until morning to make these calls. If the death is very sudden, unusual or suspicious, it is important to call the police and also an ambulance.