The last few days of life
Each person’s experience of the last few days of life will be different and it can be difficult to predict exactly what will happen or how quickly the changes will occur.
Usually, you’ll gradually become very weak and have very little energy. You may:
find it difficult to move around and need help getting from your bed to a chair
need to spend most or all of the day in bed
lose interest in eating and have no appetite because your body can no longer digest food and doesn’t need it
sleep a lot and feel drowsy when you’re awake
feel disorientated and unsure whether you’re dreaming
dream about people who aren’t there or that you knew in the past - your mind may bring up old memories
lose interest in your surroundings and even your close family.
During your last few days, the people looking after you will need to give you a lot of physical care. It may be strange for you to have to accept so much help but it can also be a time when you become very close emotionally. If your carers need help to wash and bathe you, your district or specialist nurse can arrange this. They can also show your carers how to lift and move you safely.
As your mouth often becomes dry, it will need to be moistened regularly. Your district nurse can get mouth-care sticks (like big cotton buds) and show your carers how to use them. They can also put lip balm on to your lips to stop them getting dry and cracked.
To prevent your skin from getting sore, it’s important that your carers moisturise it and help you change position regularly. Your nurses can advise your carers on how to make sure you’re in a comfortable position when you’re unable to move yourself. You can use various pressure care aids to help keep you comfortable. These can include cushions for chairs, mattresses for beds and special beds with pressure-relieving mattresses. Your district nurse can assess what you need and arrange these for you.
There may be a lot of time when you don’t need to have anything done and you can just lie quietly with your relatives and friends sitting with you. This can be a very intimate and special time. You can let them know whether you’d like to talk, have a quiet time or listen to music that you like. You can also let them know if you need some time on your own.
If your symptoms change, your medicines may also need to change. Some medicines may no longer be needed and may be stopped. If you develop new symptoms, new medicines can be started.
If you have problems swallowing, it’s possible to give your medicines either by injection, by patches stuck on to the skin or by using a syringe driver.
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You may hear your doctor, district nurse or palliative care nurse talk about leaving a small case or box of medicines in your home ‘just in case’ you need them. This is because it can sometimes be hard for them to access drugs quickly at night or at weekends. This might be a problem if you get more pain or start to feel or be sick. If you have just-in-case medicines in your home, it means that a nurse or doctor can give them to you without delay if you need them.
Just-in-case medicines usually include injections to help with pain, sickness, restlessness and secretions on your chest.
Information for relatives and friends
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This information is written for relatives and friends, but you may find it helpful to read it together.
As your relative or friend nears the end of their life, you may find that you need more support and help from professionals to care for them. You can contact their district nurse, specialist nurse or social worker. They will reassess their needs and arrange extra care services, if necessary.
Your relative or friend may seem to be in pain. They may be restless, grimacing (screwing up their face) or moving as if they’re in distress. They may sweat and have a fast heartbeat and breathing rate. If this happens, the dose of their painkillers may need to be increased. Let their doctor or specialist nurse know so they can advise you about this. They can also check for other causes of these changes, such as an infection.
Your relative or friend may develop breathing changes. For example, their breathing may become noisy due to fluid collecting in the breathing passages. Although this can be distressing for relatives and friends, the person won’t usually seem distressed themselves. Their doctor or specialist nurse will be able to give medicines to help.
Restless moving, agitation, confusion, shouting, twitching or jerking of the body
Sometimes people have symptoms of restlessness, agitation, confusion, shouting or twitching. This is often known as terminal restlessness. These symptoms can be caused by pain, constipation, infection, side effects of medicines, or a build-up of waste chemicals (toxins) in the blood. Some people become restless because of emotional distress, a fear of dying or a fear of losing control. In this situation, they may get comfort from a close friend, trusted health professional or a spiritual or religious leader.
Terminal restlessness can often be well controlled with medicines such as sedatives that can be given by injection or a syringe driver.
As someone gets closer to death, they may lose control over their bowel and bladder. You can talk to the district nurse about this, and they can get you aids to help, such as bed covers and pads. Men can have a sheath put over their penis to collect urine and drain it into a catheter bag. Sometimes it may be more comfortable for the person to have a tube (catheter) put into the bladder to drain away the urine.
Sometimes urine can’t drain out of the bladder, and so the person cannot pass urine. This causes severe abdominal pain, and their tummy (abdomen) will feel very hard and bloated. If this happens, it’s important to contact your doctor or nurse and ask them to come urgently. They can put a catheter into the bladder to drain the urine and relieve the pain.
Religious and spiritual needs
Your relative or friend may want particular practices carried out, or prayers read, as they are dying. It’s important to do whatever you both feel is right and most helpful. Keep a note of anyone you need to contact in this situation.
Contacting support services
If you’re worried that your relative or friend seems to be distressed or has new or uncomfortable symptoms, contact their GP, district nurse or specialist nurse for advice and support. You should be given telephone contact numbers for these services and numbers for use out-of-hours (for example, at night and weekends). Keep them in a safe place and use them if you need to.
You can also call our cancer support specialists for free.