When a person is dying, carers often have lots of questions: Can they hear me? Are they in pain? What can I do to make this easier? How long will it be now?
There will probably be gradual changes. Some people can continue with their activities, others find they have to pace themselves or spend more time at home. It can be upsetting to witness physical changes. It may help to know that they are part of the dying process, and don’t mean that the person is distressed or uncomfortable.
You don’t have to face these changes alone. The palliative care team can help you provide physical, emotional, and practical comfort. You can call Cancer Council 13 11 20 to find out what support is available.
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Changes that occur before death
Some family and friends find that information about the physical process of dying helps them prepare. Others prefer to take one day at a time and ask health professionals for explanations as the need arises. If you would like to know what to expect, this section describes the physical changes in the last days and hours of life.
Each death is unique, but as a person nears the end of life they often show common signs. In medical terms, the dying process is viewed as the body’s systems closing down.
The dying person has less energy, often spending most of the day sleeping or resting.
Loss of appetite
The body needs less energy to keep going and appetite decreases. The person may begin to resist or refuse meals or liquids, and weight loss can occur.
Little interest in the outside world
The dying person may gradually lose interest in those nearby. They may find it hard to concentrate and stop talking. Withdrawing is part of letting go. Near the end, some people have a sudden burst of alert behaviour.
Breath intakes and exhalations often become rattly, irregular and laboured. You may hear a pattern of breathing known as Cheyne-Stokes: a loud, deep inhalation followed by a pause of not breathing (which may last from five seconds to as long as a minute), before a loud, deep breath resumes and again slowly fades out.
Sometimes excessive secretions create loud, gurgling inhalations and exhalations, which some people call a ‘death rattle’. Various medicines can help dry up new production of secretions but not what is already there; however, it is thought that this breathing pattern is not painful.
Bladder and bowel changes
As the body’s systems slow down, the person may have trouble emptying the bladder, so a nurse or doctor may need to insert a catheter into the bladder to drain the urine and avoid a blockage. The doctor can also prescribe medicine to help with constipation, a common side effect of some pain medicines.
As the person eats and drinks less, they will produce less urine and faeces. Loss of bladder and bowel control may happen in the last stages of the dying process, but not always. Special disposable incontinence sheets can be used.
Disorientation and confusion
Carers are often unprepared for the delirium that can occur in people who are dying. This delirium can involve:
- a lower level of consciousness
- memory loss
- hallucinations (seeing or hearing things that aren’t there) and delusions (false beliefs)
- mood swings
- sleep disturbances.
A person who is dying may not be aware of where they are or who else is in the room, may speak or reply less often, or may respond to people who can’t be seen by others in the room. The person may drift in and out of consciousness and possibly enter a coma.
Delirium may occur when waste chemicals (toxins) build up in the brain as vital organs begin to shut down, but it can also have a range of other causes, such as fever or constipation. Talk to the palliative care team about how the delirium can be controlled.
Restless moving, twitching, groaning or calling out
These symptoms are part of terminal restlessness, a type of delirium that may include agitation, anxiety, anguish and anger, all of which can be very distressing for carers. However, these symptoms are common and not necessarily uncomfortable for the dying person.
Cool skin, especially the hands and feet
As circulation slows down, the hands, feet, fingers and toes (the extremities) become cooler and turn a bluish colour. It’s thought that the person will be unaware of feeling cold.
Dry mouth and dry or cracked lips
This can happen if the person is dehydrated or has been breathing through their mouth, or it may be due to some medicines.
Choosing the moment to die
Sometimes people appear to pick the moment to die. You may have heard stories of some people holding out until a particular relative or friend arrives at their bedside, or until a special occasion occurs, before dying. Others appear to wait until their family or friends have left the room before they die.
It can be difficult if you’ve been sitting with someone for many days, and they die while you are taking a break. You may feel guilty or regretful for not being there for them at that crucial moment, but it’s a fairly common occurrence.
What happens at death
No-one really knows what death feels like, but we know what death looks like from those who have nursed a dying relative or friend. The person’s breathing will cease, although they may stop breathing for a time and then take one or two final breaths. As soon as the heart stops beating, the body rapidly cools down and takes on a pale appearance.
The moment of death is sometimes described as being peaceful.
Many carers say it was a profoundly moving experience and it felt like a privilege to be there. The memory of the final moments are likely to stay with you for a long time.