Understanding the dying process
It is important to remember that just as people are unique, so too is their death. It is almost impossible to tell you exactly when or how a person will die.
Regardless of the illness there are several changes that are likely to happen as death gets closer. This information can help you be prepared for what to expect as death approaches.
The information on this page is also available as a pdf:
Increasing tiredness
Over time the person who is dying will become increasingly tired and weak. This is hard to avoid, but spacing out everyday activities and making sure they get enough rest can help.
It is important that this is understood by family and visitors.
For most terminally ill people, this tiredness gradually increases until they become unconscious.
Anxiety and confusion
Just before death some people become restless, agitated and confused. This is known as terminal restlessness. It often occurs within the last few days of life.
Terminal restlessness can be caused by a range of things and sometimes calming drugs are needed.
A calm and quiet environment with support from those who are close to the person can provide comfort. You can also hold or massage their hands or feet to maintain contact.
Playing soft music that the person enjoys can be soothing.
Difficulty communicating
Extreme tiredness can mean that the person finds it hard to talk. After they rest, talking might become easier.
If they become unconscious, they will still know you are there and hear the voices around them.
Managing pain
Many people (but not all) with a terminal illness may experience pain. Pain can be caused by a variety of things, such as pressure on an internal organ, damage to nerves or lack of blood supply.
Medication might be prescribed to help. People respond to the same treatment in different ways, so sometimes changes to medications are necessary.
Simple approaches like repositioning pillows or bed clothes and gentle massage can also help provide relief from pain.
As an unconscious person might still feel pain, so pain medication will continue to be given.
If you are concerned your loved one looks uncomfortable in any way, please inform the health care staff and they will complete a pain assessment.
Loss of appetite
Most people lose their appetite in the last few weeks of life.
This is a very natural and normal part of the dying process. The body’s metabolism slows down and the person needs less nutrition.
Your instincts may be to try and feed the person to keep up their strength. However as the person gets weaker, swallowing and digesting food and drinks can become harder and can place strain on their body.
Even if they aren’t eating and drinking, it is still important to make sure their mouth is kept clean. Wetting their mouth and lips can also make them more comfortable.
Becoming unconscious
Some people will become unconscious a few days before dying and others may die quite suddenly, even remaining awake to some extent right up until they die.
If the person becomes unconscious, changing their position can help prevent soreness and stiffness. They might also be given a special mattress to relieve pressure and make them more comfortable.
Most people have very little or no urine output, but sometimes a catheter (tube) is inserted to relieve the feeling of a full bladder.
Some people are unable to cough and secretions can build up at the back of the throat. This can cause a rattling or gurgling noise as they breathe. This noise can sound distressing to us but is not usually a cause of discomfort to the person.
Laying the person on their side can help loosen these secretions. There are also medications available that may be prescribed to help dry them up. The secretions aren’t usually suctioned out as doing this can be uncomfortable and distressing, and the irritation can increase the secretions.
Maintaining mouth and eye care is very important at this time.
Breathing changes
Before death you might notice that the person’s breathing pattern changes.
Periods of rapid breathing followed by short periods of no breathing at all are very common towards the end of life. They are known as Cheyne-Stokes respirations.
Once death has occurred
When people die:
- they stop breathing
- their heart stops beating
- they can’t be woken up
- their mouth may fall slightly open
- their eyes may be open but their pupils will be large and fixed on one spot
- they may lose control of their bladder and bowel.
When this happens a doctor will usually come and confirm the death.
You may wish to contact a close friend or relative to be with you for support.
Take your time to say goodbye. Other close friends and relatives may also wish to say goodbye.
Some people will find additional comfort from the support of a spiritual advisor.
Services Australia (external site) has more information about the steps you need to take and who you need to notify following a death.
As the death was expected, it is not usually necessary to contact the police or ambulance services.
Caring for yourself
Caring for someone who is dying can be a tiring and stressful time.
The experience may bring up unresolved feelings or upsetting emotions including grief, regret and distress. You may feel overwhelmed.
If this is how you feel, it may help you to talk through your thoughts. The health care staff or your general practitioner may be able to support you at this difficult time or refer you to an appropriate service.
There are also a number of organisations that can provide you with support.
Acknowledgement:
Adapted and revised from a brochure by the Comprehensive Evidence Based Palliative Approach to Residential Aged Care (CEBPARAC) Project. A version of this brochure is available from CareSearch (external site).
Acknowledgements
WA Cancer and Palliative Care Network
This publication is provided for education and information purposes only. It is not a substitute for professional medical care. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your healthcare professional. Readers should note that over time currency and completeness of the information may change. All users should seek advice from a qualified healthcare professional for a diagnosis and answers to their medical questions.