Managing pain and other symptoms during end of life care

Managing symptoms, including pain, is an important part of end of life care.

Each person will have different symptoms, depending on their condition and the kind of treatment they may be having.

Symptoms can include feeling and being sick, constipation, loss of appetite and pain.

Your doctor and nurses will help you manage your symptoms and feel as comfortable as possible.

Pain

Not everyone approaching the end of life has pain. If you do, your doctor or nurse will assess the pain and decide on a suitable medicine and the correct dose to manage it.

They'll ask you questions about the pain.

These might include:

• where the pain is
• when it started
• the effect it's having on you – for example, whether it's stopping you sleeping

If you have trouble speaking, they may use a different method, like a visual chart or picture cards, or ask your family and carers.

If you're not able to communicate at all, there are other signs that can show you might be in pain, such as grimacing, groaning, changes in breathing and refusing to eat.

The doctor or nurse will sometimes ask the palliative care team to advise them.

Describing your pain

Macmillan Cancer Support has useful information on describing your pain

This can help your doctor or nurse understand the kind of pain you're feeling and work out the best way of treating it.

The information is written for people who have cancer, but is relevant for anybody who's in pain.

Medicine for pain

Pain-relieving medicine is available at home and in hospitals, hospices and care homes.

Your doctor or nurse will use the weakest painkiller available that keeps you free from pain.

In order of strength (starting with the weakest) there are:

• non-opioid painkillers, such as paracetamol
• mild opioids, such as codeine
• strong opioids, such as morphine

An opioid is a chemical that works by binding to opioid receptors in the body (found mostly in the central nervous system and gut), which reduces the pain we feel.

How medicines for pain are given

You'll usually be given medicines in the least invasive way possible. This means they'll be given in a way that causes the least amount of discomfort, pain or distress.

The first step is to take them by mouth (orally).

If taking medicine by mouth is not possible, for example if you're being sick or cannot swallow, you can have painkillers:

• inside your mouth, in your cheek or under your tongue
• through your nose
• in your bottom (rectum)
• through a patch on your skin
• through a feeding tube
• through an injection under the skin (subcutaneous)
• through an injection into the muscle (intramuscular)
• directly into a vein (intravenous)

Sometimes a small battery-operated pump called a syringe driver is used to give medicine continuously under the skin for a period of time, such as 24 hours.

You might be offered a syringe driver if you cannot take medicine by mouth – for example, if you're being sick or have difficulty swallowing.

Sometimes supplementary (adjuvant) painkillers are used alongside non-opioid and opioid painkillers.

Adjuvants include medicines designed for other conditions, such as epilepsy, but that work well with certain types of pain, such as nerve pain.

Side effects

Painkillers, like other medicines, can have side effects. Opioid medicines can cause:

• dry mouth
• feeling or being sick
• constipation
• drowsiness

Some people may be worried about taking strong painkillers because:

• they may be addictive
• using them too early will make them less effective later on
• it may mean that end of life is near

Talk to your doctor, nurse or palliative care team, who can help with managing these side effects and reassure you about any concerns you may have.

Feeling or being sick

Your condition or medicine may make you feel sick or be sick (vomit). There's anti-sickness medicine you can take, so talk to your doctor or nurse if you're feeling sick or being sick.

It may also help to:

• try eating small amounts often, rather than trying to eat large meals
• try eating dry carbohydrate foods, such as toast or crackers
• sip cool, fizzy drinks (rather than hot or still drinks)

Some people find that ginger helps, such as ginger tea (you can buy ginger tea, or make it by adding peeled, fresh ginger root to hot water), stem ginger, ginger beer, or ginger added to food. Peppermint tea or oil may also help with feeling or being sick.

Constipation

Constipation can be a side effect of some medicines. Other things can also cause constipation, including:

• not eating and drinking as much as usual
• not being able to get up and be as active as normal
• having to use a bedpan
• a lack of privacy
• depression

Your doctor can prescribe laxative medicine to help with this, so tell your doctor or nurse if you have constipation.

If you're able to, you can try to help yourself by:

• eating high-fibre foods, such as brown rice, wholewheat pasta and bread, and fruit and vegetables
• drinking as much fluid as you can

Loss of appetite

You may not feel like eating much, and this could be because of:

• your condition
• medicines you're taking
• feeling sick
• difficulty swallowing
• depression or anxiety

Try to eat small amounts. It might be helpful to have snacks nearby so you can graze, rather than having full meals.

As you near the end of life, your body may not be able to digest food as well as it has in the past.

At this stage, do not force yourself to eat if you do not want to. "Little and often of whatever you fancy" can be the best approach to take.

Your doctor or nurse can discuss your appetite with you, and talk about how much you should be trying to eat. Tell them if you think anything else may be affecting your lack of appetite, for example if your mouth is sore or you're feeling worried or depressed.

This information can be helpful for your family and carers, too, as they may be worried if they feel you're not eating enough.

Other methods of managing symptoms

There are ways of managing pain and other symptoms without using medicines. These include physiotherapy and complementary therapy.

Physiotherapy, or physio, uses physical methods such as exercise and manipulation to promote healing and wellbeing. It can also teach you exercises that help you cope with breathlessness.

Counselling or cognitive behavioural therapy (CBT) can also help if you have anxiety or depression.

Some people find complementary therapy, such as massage or reflexology, can help them feel more relaxed. You may find therapies like art, music and relaxation helpful. These can help your mental wellbeing and reduce the effects of some of your symptoms. Many hospices offer complementary therapies.

You can talk to your doctor or nurse about the kinds of treatments to help your symptoms that might be available to you. Always tell your doctor or nurse if you're using any complementary therapies.

Other people's experiences and help for carers

Marie Curie provides information and support about terminal illness and dying:

• Marie Curie: caring for someone with a terminal illness
• Marie Curie: living with a terminal illness

The National Institute for Health and Care Excellence (NICE) has produced guidance for the care of dying adults in the last days of life

It covers how to manage common symptoms, and dignity and respect for the dying person and their relatives and carers.

Hospice UK's Dying Matters website offers resources on death and dying.

You can read more about:

• advance statement about your wishes
• coping with a terminal illness

If your partner, friends or carers want to find out about caring for someone, they can read the Care and support guide.