Managing your symptoms when you're dying

During your last few weeks and days of life, there are ways to manage the symptoms you might have. 

This page is about controlling symptoms you might have in the last few weeks or days of life.

If you are not at this stage of your illness, you might find it more helpful to read our information on coping with the symptoms of advanced cancer for your cancer type.

Palliative care and controlling symptoms

When people are asked about dying, most say that they want a peaceful and pain free death. And this is usually possible with the right care and treatment. This makes the thought of death far less frightening. 

Your GP, district nurses and healthcare team all work to control any symptoms you have. They will try to keep you as comfortable as possible. They might also refer you to a palliative care team for specialist care. 

What is palliative care?

Palliative care offers relief, support and comfort to people affected by cancer and their family and friends. It involves caring in the best possible way for needs you might have in the following areas: 

• symptoms related to your cancer
• physical
• psychological
• social
• activities of daily living
• religious and spiritual
• cultural

Palliative care teams are made up of:

• specialist doctors and nurses
• social workers
• volunteers
• pastoral care workers
• other healthcare professionals, such as dietitians, physiotherapists, counsellors, and pharmacists

Common symptoms at the end of life

The palliative care team members work together to give you relief from pain and other symptoms. They offer you support to allow you to live the rest of your life as fully and well as possible.

They also support your friends and relatives, helping them to cope during your illness and after you die.

Pain

Some people don't have pain. But if you do, it is usually possible to control pain and other symptoms without side effects such as drowsiness. You will not become addicted to strong painkillers.

So if you do have pain or are frightened of getting it, the important thing is to let your healthcare team know. Be as honest with them as you can. This helps them decide on the best treatment for you. They will talk you through the best ways to control your pain.

Controlling pain is much easier if you use painkillers regularly as prescribed by your healthcare team. It takes longer to get the pain under control if you avoid taking painkillers.

Feeling sick

Some people who are dying might feel sick due to their cancer. Or sometimes, the sickness is a side effect of medicines they need to take. Feeling sick can be very unpleasant and distressing. But your healthcare team can usually control it well with anti sickness medicines.

Tiredness and exhaustion (fatigue)

People who are dying from advanced cancer often say that feeling very tired is the most worrying symptom they have. It disrupts their life the most. You might notice that you can't:

• concentrate for long
• finish things you started
• stop yourself falling asleep during the day

This can make you feel irritable, easily upset and fuzzy headed. Doctors call this fatigue.

Coping with fatigue

You or your carer needs to discuss fatigue with your healthcare team. There are sometimes things that they can do to help. It can also help to use your energy for the things you like doing and find the most worthwhile. You can leave less important things for other people to do.

Confusion

Some people with cancer might get confused at times in the last few weeks of life. It can be very distressing to see someone you care about when they are confused. Confusion can often be mild. But for some people it can be more serious.

Signs of confusion

A confused person might not be aware of their surroundings. Their speech could become slurred, disjointed and rambling. You could have trouble understanding what they are trying to say. They can misunderstand what they see or hear happening around them. They might seem to see or hear things that are not there (hallucinations). Confusion might make people anxious, upset, restless or even aggressive.

Treating confusion

As people get weaker and become more ill, it is common for them to be confused at times. But sometimes, there's a treatable physical cause. For example:

• a high temperature caused by an infection
• side effects of medicines
• pain
• bowel problems (constipation)
• changes in the chemical balance in the body, such as high calcium levels
• lack of oxygen to the brain caused by cancer or another illness
• cancer spread to the brain

Caring for a confused person

Confusion might clear up quickly if doctors can treat its cause. But sometimes this is not possible in the final weeks or days of life. The palliative care team can help with tips and care that make the confusion less distressing for you and your loved ones. 

• To help a confused person, it could help to talk quietly and reassuringly. For example, you could hold their hand when you are talking.
• Confusion can often be worse at night, so it might help to leave a night light on and keep the door open in case they wake.
• You could try to make the surroundings peaceful, safe and calm. For example, use low lighting, soft background music and pleasant smells.
• Avoid changing the surroundings too much and let them know if you’re going to move something or take it away. Always let them know when you go into or leave the room.

Being very restless

Restlessness, as someone gets closer to dying, is called terminal restlessness or agitation. It might happen in the final days or hours of life. The symptoms are very similar to confusion, but the person may also become very restless or agitated. The person's muscles might twitch or contract. They may grab their nightclothes and bedclothes continuously. Moaning or calling out is also common.

The causes of restlessness can be similar to those of confusion. But terminal restlessness is usually due to the body organs slowing down and not getting rid of waste products. The waste products then build up in the blood.

Caring for a restless person

Tell the doctor if you are worried that the person you care for is restless. The doctor might be able to prescribe medicines to help them relax. Often they can have these drugs through a syringe pump. This can give continuous small amounts of a drug to help control symptoms.  

Support for carers

Terminal restlessness can be distressing for carers to see. You might need to talk about your feelings if you’re distressed at seeing the person restless and confused. You can do this with the doctor, nurse, or palliative care team members.

As a carer, it's important to look after yourself to help you cope with your situation.

Other symptoms

You might have symptoms other than the ones we mention here. Different types of cancer affect different parts of the body. Even in the late stages of your cancer, your doctor might want to treat some of these changes. 

You might have symptoms other than the ones we mention here. Different types of cancer affect different parts of the body. Even in the late stages of your cancer, your doctor might want to treat some of these changes. Possible changes include:

• high calcium levels in your blood (hypercalcaemia)
• bowel problems
• infections
• breathing problems
• a build up of abdominal fluid known as ascites – doctors treat it by draining the fluid to help relieve pressure and discomfort
• problems passing urine – putting a tube into the bladder (catheter) can help relieve this

Treatment can make you much more comfortable. But there may also be times when treatment causes you more distress than comfort. So your doctor may decide against treatment, and try to keep you as comfortable as possible

Your emotions

Understandably, knowing that you are dying can bring up some very strong emotions. This can include sadness, depression, anger and anxiety. You can read about your feelings, reactions and how to cope in our section about coping emotionally.