Managing your pain and other symptoms during a life-limiting illness

Pain management is a key part of end of life and palliative care. When your pain is well managed, you tend to have a better quality of life. You are likely to sleep better, have more energy during the day, and be more active, which in turn reduces your risk of complications.

We all feel discomfort differently, and people experience pain in their own way. Not everyone who needs palliative care has ongoing pain. When pain is present, pain relievers (also called analgesics) are commonly used in end of life and palliative care.

Taking your pain medication safely#

Always follow the instructions for taking your pain medication. Talk to your doctor or pharmacist if your medicines stop reducing your pain as well as they did, or if they are causing side effects. This can happen if you have been taking pain relief for a long time.

Let your doctor know if you are taking, or are about to take, any over-the-counter medication, herbal remedies or natural supplements, as these can interact with your other medicines. Keep a good supply of your pain medication on hand so you do not run out.

Pain medication can cause side effects, but most are temporary or can be managed easily. They may include:

• constipation
• nausea and vomiting
• drowsiness or confusion
• dry mouth or itchy skin

Speak to your doctor or palliative care team if any of these side effects occur.

Understanding opioids#

Opioids (such as morphine) are prescribed for some types of pain that do not respond to milder medicines. For people with a life-limiting illness, opioids usually provide the best relief for most pain. Their effect is predictable, and the dose can be adjusted precisely.

Some people fear opioids because they worry about addiction or about the medication hastening death. People who take opioids for opioid-responsive pain do not become addicted to them. It may be reassuring to know that the body naturally makes chemicals (endorphins) that work in a similar way. What causes death is the underlying disease, not medication taken as prescribed.

People with a life-limiting illness often take opioids for long periods without death being close. If your doctor suggests opioids, it is important to understand how these medicines work and why they are used. Ask your doctor and palliative care nurse for more information.

If side effects do occur, your doctor can manage them, for example by prescribing an anti-nausea tablet or by carefully reducing the opioid dose.

Complementary therapies and self-management#

You can lower your everyday levels of pain by learning some self-management techniques and using complementary therapies alongside your pain-relieving medication. Your doctor or palliative care team may be able to recommend reputable therapists. Helpful approaches may include:

• heat and cold: heat packs can ease chronic musculoskeletal pain, while an ice pack can help reduce swelling immediately after an injury such as a fall
• gentle exercise: walking and muscle-strengthening exercises may help relieve pain, maintain mobility and improve your mood. Ask a physiotherapist or osteopath to design a program for your pain condition
• relaxation and breathing: correct breathing using the diaphragm and abdomen can soothe the nervous system and manage stress
• hypnotherapy: uses imagery to induce a relaxed state of mind, and may also ease side effects of cancer treatment such as nausea
• massage: soothes muscles, encourages relaxation and increases circulation to the area
• meditation: regular practice offers long-term benefits such as reduced stress and blood pressure
• mindfulness: the deliberate clearing of the mind to bring about calm and heightened awareness
• tai chi: gentle movements that clear the mind and relax the body
• yoga: a system of postures done in time with the breath
• acupuncture: inserting and stimulating fine needles at specific points of the skin. Studies suggest it can help some pain syndromes, though there is little research into cancer pain
• transcutaneous electrical nerve stimulation (TENS): a very small electrical current passed through the skin via electrodes, which can prompt a pain-relieving response

Always check with your doctor or palliative care team before starting a new type of pain management, and follow their instructions carefully so you do not make your pain worse.

Talking to your team about pain#

The palliative care team and your doctor work together to improve your quality of life, including managing your pain so you can focus on the things you enjoy. If your pain changes or is concerning, contact them and describe the problem. They may ask:

• Where is the pain?
• How long has it been there?
• What type of pain is it: sharp, tingling or aching?
• Is it a new type of pain?
• Is the pain persistent, or does it come and go?
• Have any other changes occurred?
• Do you feel like vomiting?
• How would you rate the pain on a scale of one to ten (1 being no pain, 10 being the worst)?

Anything scoring more than 4 out of 10 is regarded as pain that needs attention.

Keeping track with a pain diary and medication chart#

If you are having difficulty keeping track of when your symptoms occur, a pain diary can help. By recording your pain each time it happens, your healthcare team can chart the changes and make sure your medications are working.

Medication charts are also useful. They can help you remember to take your medication, take the right dose, and record changes and progression of your symptoms. Talk to your doctor or palliative care provider about setting up a pain diary or medication chart.

Managing nausea#

You have nausea when you feel the urge to vomit or simply feel sick. It can be due to the illness itself, or result from medications, chemotherapy, radiotherapy, constipation or an imbalance of chemicals in the body.

If you have been prescribed anti-nausea medicines and you feel nauseous, take them as directed, unless even the thought of taking a tablet makes you feel worse. Some people prefer not to eat or drink until the nausea passes; others find small amounts of food or drink helpful. You can also rest, try deep breathing, play soft music, or have a massage, bath or shower.

If nausea is not relieved after one hour or gets worse, contact your doctor or palliative care team.

Managing constipation#

Constipation occurs when your bowels do not open for several days, which can cause nausea, pain and tiredness. It can result from not drinking enough fluids, limited mobility, poor diet or the illness itself, and it can also be a side effect of medication or some treatments.

In most cases constipation can be prevented. If you have been prescribed strong pain medicines (such as morphine), ask your doctor whether you also need a laxative. If you have not had a bowel action for several days longer than usual, speak with your palliative care team, who can set up a plan for your needs.

There are many natural and over-the-counter remedies that can be used alongside prescribed medicines. Treating constipation may include:

• drinking more fluids, such as water or juice, to help soften the stool
• fiber supplements, if you are unable to include more wholegrain foods
• more fresh fruit and vegetables in your daily diet
• gentle exercise, such as a short walk, to improve bowel movement
• stool softeners
• a short-term course of laxatives
• in some cases, removal of impacted feces, which may involve an enema

Managing breathlessness#

Breathlessness is an unpleasant feeling of having difficulty breathing. It can be caused by lung disease, asthma, emphysema, chest infection, pressure from other organs, or anxiety. Being breathless can itself cause further anxiety and distress.

If you are feeling breathless:

• tell someone and ask them to stay with you
• sit in an upright position
• if you can, turn on a fan or open a window
• wear loose-fitting clothing and try listening to calming music

If you have been prescribed medicines for breathlessness, take them as directed (morphine is often effective for relieving breathlessness). If the breathlessness is not relieved and is causing distress, phone your doctor or palliative care team.

Managing fatigue#

Fatigue is very common in people with a life-limiting illness. It is a feeling of weariness, tiredness or lack of energy that does not go away when you rest. You may feel fatigued in body or mind, and it can be frustrating and debilitating.

Possible causes include lack of sleep, low blood oxygen levels, poor diet, depression, the effects of chemotherapy or radiotherapy, infection, or the disease itself. Strategies that may help include:

• having short naps during the day
• doing some regular gentle exercise
• having nutritious food and drinks
• planning your most energetic tasks (such as showering or bathing) for when your energy is higher
• taking up a hobby that does not need much energy, such as board games, audio books, the radio or television

If you think your fatigue has become worse, speak with your doctor or palliative care team.

Cost of medication#

If you cannot afford your medication, talk to your doctor. Many branded medicines are also available as generic brands at a lower cost, with the same active ingredient. Ask your pharmacist about lower-cost options, and ask whether you qualify for any concessions or assistance programs available where you live.

Asking questions#

Asking questions helps you understand what is happening with your condition and helps you make decisions about your care. If your doctor uses words you do not understand, for example when describing test results, treatment options or side effects, ask them to explain again.

Key points#

• Pain management is a key part of end of life and palliative care
• If you feel less pain, you can be more active, which also reduces your risk of complications
• Pain medication can cause side effects but most of these are temporary or can be managed easily
• Some people fear opioids because they think they might cause addiction or hasten death
• Physical activity can also help you maintain mobility and improve your mood

Where to get help#