Understanding what might happen

During the last few weeks of life, you may experience emotional and physical changes or symptoms. This is normal, but it can be upsetting for you and the people around you. Being prepared for what may happen can make the situation a little easier to cope with.

Emotional changes

You may feel lots of different emotions, including:

  • worry
  • anxiety
  • panic
  • anger
  • resentment
  • sadness
  • depression.

It is natural to have these feelings in the last few weeks of your life. You may also feel concerned that you are less able to do things. You may worry about losing your role in your family or with friends.

It may help to talk about how you are feeling with:

  • your family and friends
  • someone in your healthcare team, such as a palliative care nurse or doctor
  • someone you do not know, such as a trained counsellor
  • a support organisation
  • a religious or spiritual adviser – you can do this even if you have not attended religious services or had contact with spiritual leaders before.

You may not want to talk about what is happening. Everyone is different, and it is important to do what is right for you. If other people want to talk about your situation and you do not, just tell them gently that you would prefer not to. They may find it helpful to talk to our cancer support specialists about how they are feeling.

You may become withdrawn and quiet. This may be caused by depression. If you think you might be depressed, tell your doctor or nurse. They can give you help and support.

Becoming withdrawn can be a natural part of slowly retreating from the world. You may find yourself losing interest in the things and people around you – even close family.

Physical changes and symptoms

The physical changes and symptoms that happen can vary. On this page we describe physical changes that generally happen in the last few weeks of life.

As you become less well, your doctor or nurse will review your medicines. They may stop some if you do not need them any more. If you have new symptoms, your doctor or nurse may prescribe new medicines to manage them. Medicines can be changed as often as you need. Some people also find complementary therapies help (see below).

Tiredness and lack of energy

It is normal to have less energy. You may need help to do things you usually do for yourself. Tiredness and weakness can make it harder for you to concentrate or take part in what is going on around you. You may find you need to rest a lot during the day.

Things that can help

  • Try to pace yourself. Save your energy for the things that matter to you and that you enjoy.
  • Try to do less cooking, cleaning and other household jobs. If you can, ask your family and friends to help you with these tasks.
  • If washing and getting dressed tires you out, ask a carer to help you with this.
  • Use equipment that helps you with daily tasks, such as a raised toilet seat, bath board or walking frame. These can help stop you getting so tired.
  • If you have important things you want to do, such as sorting out your financial affairs, do them at a time of day when you have more energy.
  • If you find eating difficult, try eating little and often.

We have more information about coping with fatigue.

Difficulty sleeping

You might find you cannot sleep well at night. There may be many reasons for this, including:

  • taking medicines that can keep you awake, such as steroids
  • feeling anxious or depressed
  • feeling afraid you might die in the night
  • having symptoms that are not well controlled, such as pain, breathlessness or incontinence
  • other factors, such as light, noise or sleeping too much during the day.

Tell your doctor or nurse if you are not sleeping well. There are things that can help you sleep better. Also tell them about any specific anxieties or symptoms that might be affecting your sleep. They may be able to suggest things to help, for example taking some medications at a different time. They may also suggest you try taking sleeping tablets.

Things that can help

  • If your mattress is uncomfortable, ask your nurse for advice about a more comfortable one.
  • Try to reduce light and noise at night. Wearing an eye mask might help if your room is too light.
  • Have a warm drink before going to bed, but avoid caffeine and alcohol.
  • Keep your bedroom for sleeping. If you wake up during the night, try not to toss and turn. Go to another room in the house, if you can. When you feel sleepy, go back to bed again. If you need to sleep during the day, go to your bed and sleep there.
  • Avoid using any screen, such as a TV, computer, tablet or smartphone, for at least an hour before going to bed.
  • Keep a notebook by your bed. If you wake up during the night, write down anything you are worried about or need to do. You can work through your list during the day and get support and advice from your carers, doctor or nurse.
  • Try using relaxation techniques at night. You may find it helpful to use a relaxation CD or listen to some soothing music. An occupational therapist or physiotherapist may be able to show you some relaxation techniques.
  • If you find touch and massage helpful, you could ask your carer to give your hands or feet a gentle massage.

We have more information about having trouble sleeping.

Pain

Many people are worried about pain as their illness gets worse. Not everyone has pain in the last few weeks of life. But if you do, there are usually effective ways of controlling it.

Everyone feels pain differently. There are different painkillers for different types of pain.

Painkillers are often given as:

  • tablets
  • liquid medicines
  • patches stuck on to the skin.

You may need more than one type of painkiller to get the best effect.

If you have trouble swallowing or are being sick, you can have painkillers as an injection or through a syringe pump. These drugs include morphine, diamorphine and oxycodone.

Syringe pumps

A syringe pump is a small portable pump that can be used to give medicines. It is sometimes called a syringe driver.

Syringe pumps are used for different reasons. They can be used if you:

  • cannot absorb medicines properly through the stomach
  • have difficulty swallowing.

In the last few weeks of life, you may find it harder to swallow medicines. Your doctor or nurse may suggest using a syringe pump to help you get the medicines you need. You can have painkillers, anti-sickness medicines, anti-anxiety medicines and several other medicines through a syringe pump.

How much painkiller you will need

You might worry you will need to take increasing doses of strong painkillers as you near the end of your life. It is important to remember not everyone will have pain that gets worse. There is no right dose of morphine. The right dose is the dose that helps your pain.

Specialist palliative care doctors and nurses have lots of experience in managing pain. They can help make sure you have the right dose of painkillers to control your pain, without too many side effects. Your GP or cancer doctor can refer you to a specialist.

Side effects of painkillers

Strong painkillers have three common side effects:

  • Drowsiness.
  • Sickness.
  • Constipation.

We have more information about these and other side effects of painkillers.

Things that can help

  • Always take your painkillers regularly, as your doctor or nurse tells you to.
  • Tell your doctor or nurse as soon as possible if your pain is not controlled.
  • Keep a pain diary if you can. You could use our pain diary, or ask your district nurse or specialist nurse if they can give you one.
  • Be aware of the side effects of your painkillers and take medicines to keep them controlled, if needed.
  • Make sure you do not run out of your prescribed medication. If you do not have much left, ask your doctor or nurse for another prescription.

Other ways of controlling pain

There are other things that may help control pain – these can be used alongside painkillers:

  • Find a comfortable position to sit or lie in.
  • Use any special equipment you have been given.
  • Use relaxation techniques.
  • Try to distract yourself from the pain.
  • There are other, more specialised ways of controlling pain. These include transcutaneous electrical nerve stimulation (TENS) and acupuncture. Your doctor or nurse can tell you if these might be suitable for you.

We have more information about these ways of controlling pain.

Feeling sick and vomiting

Your illness, or your medicines, may make you feel sick (nausea) or be sick (vomit). If this happens, your doctor or nurse can prescribe anti-sickness drugs (anti-emetics), which usually help.

Our information about nausea and vomiting includes different ways to take anti-emetics and other ways of managing this symptom.

Weight loss and loss of appetite

You may lose weight, even if you are eating well. This can be upsetting. You may find your appetite reduces over time, because:

  • of your illness
  • of the medicines you are taking
  • you are put off eating by the sight and smell of food.

As you near the end of your life, your body slows down. It does not need food, as it cannot digest it or absorb nutrients from it. Do not force yourself to eat. This could make you feel unwell.

Medicines, such as steroids, can sometimes boost your appetite. Your doctor can prescribe these if they are suitable for you.

Things that can help

  • Eat small, frequent meals. Try using a smaller plate and serve small portions.
  • Do not feel you must eat. It is normal for your appetite to reduce as you near the end of your life.
  • Eat if you feel like eating. And eat the things you want to.
  • If you want to eat but do not like the smell of cooking, ask someone else to cook your food.
  • Have snacks nearby to eat.
  • Eat slowly.
  • Consider eating foods that are easy to chew and digest, such as soups, custard and ice cream.

Your family and friends might feel anxious or upset because you no longer feel hungry or enjoy food. Talk to them about what you would like to eat or drink. This means they will know the best things to offer you.

Constipation

Many people find they get constipated more easily, because they are not moving around or eating and drinking as much. Medicines such as strong painkillers can also cause constipation.

Things that can help

  • Take your laxatives as your doctor or nurse tells you to.
  • If you are constipated, tell your GP or nurse as soon as possible. Tell them if your laxatives are not working or if your stools (poo) become too loose.
  • Drink as much fluid as possible.
  • If you can eat, try to have things that are high in fibre. This includes fruit and vegetables, brown rice, brown bread or brown pasta.

We have more information about constipation.

Breathlessness

Some people may feel breathless. Breathlessness can be very frightening. But there are things that can help, depending on what is causing it

It is important to tell your doctors and nurses as soon as possible if you:

  • are breathless
  • suddenly become more breathless than usual.

Then they can give you the best treatment to help.

Things that can help

Nurses can show you and your carers the best positions for you to sit or stand to help with your breathing. They can also teach you how to breathe more effectively, plan your activities and save your energy.

Breathlessness may make you feel anxious. This can make your breathing feel even more difficult. Your nurse or a physiotherapist can teach you ways to relax, so that you feel less anxious and breathless.

Medicines to help breathlessness

  • Some medicines can be used to help, such as a very low dose of morphine, or medicines that treat anxiety.
  • Oxygen may be helpful for some people. Your GP or nurse can arrange for you to have oxygen at home if you need it.
  • If you have a pleural effusion, your doctor at the hospital or hospice may be able to drain the fluid.
  • If you are anaemic, your doctor may arrange for you to have a blood transfusion if they think it would help.

Other ways to manage breathlessness

We have more information about other ways to manage this symptom, including:

Difficulty moving around

As your illness progresses, you may find it harder to move around. This may be because you:

If you are not moving around very much, you may get sore areas. For example, you may get sore on your bottom or heels. Your district nurse can arrange equipment to help prevent this, such as a pressure-relieving cushion for your chair or a mattress for your bed. You can also help to ease soreness by changing your position regularly, if you can.

Cough and wheezing

You may have a cough or feel wheezy. This can be tiring and upsetting. Your doctor can prescribe medicines to help with these symptoms. You may find it helpful to sit as upright as possible, supported on pillows. This may also help you breathe more easily.

Mouth problems

You may develop problems with your mouth, such as:

  • a dry mouth
  • ulcers
  • an infection.

Some medicines can make these problems worse. Looking after your mouth is important and can help prevent mouth problems. Tell your nurse or doctor if you develop any mouth problems, so they can help.

Things that can help

  • If you can, brush your teeth twice a day using a fluoride toothpaste. If your mouth is sore, use a soft children’s toothbrush.
  • Rinse your mouth with fresh water after brushing.
  • Rinse your mouth 3 or 4 times a day to remove debris and keep it clean. You can use plain water or a salt-water rinse (add 1 teaspoon of salt to 1 pint of cold or warm water). You should rinse your mouth with cold or warm water after using a salt-water rinse.
  • If you have false teeth, clean them as usual and soak them overnight.
  • Use any mouthwashes that have been prescribed for you, and follow the instructions.
  • Cut down on smoking and substances that can dry or irritate the mouth, such as caffeine and alcohol.
  • If you have a dry mouth, sip tonic water or lemonade, suck ice lollies or ice cubes, or chew sugar-free gum.

Fluid build-up (oedema)

For some people, fluid collects in a part of the body. This is called oedema.

Water tablets (diuretics) can sometimes help get rid of the fluid. Your doctor can tell you if they may be suitable for you.

Things that can help if your legs and ankles are swollen

  • Your doctor may prescribe pressure stockings to help. These are not suitable for everyone.
  • Use a footstool to keep your feet up when you are sitting down.
  • Gently exercise your legs. A nurse or physiotherapist can show you some exercises to do.
  • You may find it harder to move around, which can be frustrating. Your nurses can help you find ways of moving around.

Changes in appearance

Your appearance may change as your illness progresses. For example, you might put on or lose weight. This can be upsetting. You may find it helpful to talk about your feelings with your carers or nurses. They may be able to help you find ways to look and feel better.

We have more information about changes to your appearance.

Infection

You may be more at risk of an infection, such as a chest or urine infection, if:

  • you are not moving around much
  • you are not eating or drinking well.

Tell your doctor straight away if you:

  • develop a high temperature
  • start to feel shivery, shaky or unwell.

They may prescribe antibiotics to treat the infection.

Anaemia (low number of red blood cells)

Anaemia can make you very tired and breathless. If you are anaemic, your doctor or nurse may suggest you have a blood transfusion if they think it will help. You usually have this as a day patient in a hospital or hospice.

Bladder problems

You may have problems passing urine (peeing) or controlling your bladder. A nurse can put a thin, flexible tube (catheter) into the bladder to drain the urine. This can also help you avoid the discomfort of using a bedpan or bottle if you cannot get out of bed.

Swollen tummy (ascites)

In some types of cancer, fluid may build up in the tummy (abdomen). This can make your tummy:

  • swell
  • feel tight and uncomfortable.

This is called ascites. Your GP or specialist palliative care nurse can talk to you about ways to treat ascites.

High calcium levels (hypercalcaemia)

Some types of cancer can cause high calcium levels in the blood. This is called hypercalcaemia. It can:

  • make you feel drowsy
  • make you feel sick
  • cause confusion 
  • cause constipation
  • make pain harder to cope with.

If you develop these symptoms, tell your nurse or doctor. They can do a blood test to check your calcium levels.

If your calcium level is high, your doctors may give you medicines to help reduce it. These are called bisphosphonates. You have them through a drip. You will need to be in hospital or a hospice for a few days.

Managing difficult symptoms

Usually, it is possible to manage your symptoms at home. But sometimes it can help to have them treated in a hospital or hospice for a few days or weeks. Your community palliative care team, district nurse or GP will talk to you about this if they think it would help. Being in the hospital or hospice means the doctors and nurses can assess your symptoms better. They can adjust any medicines more quickly than if you were at home. This means they can control your symptoms more quickly.

When your symptoms are controlled, you can often go home again. You are then under the care of your GP, with the support of your community palliative care team and district nurses.

Complementary therapies

Many people find complementary therapies can help them:

  • feel stronger
  • manage physical changes
  • cope better with worries about dying
  • improve their quality of life
  • improve their symptoms.

Our information about complementary therapies explains the different types available and how you and your carers can access them.

How we can help

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