Palliative care – dealing with common symptoms

Every person is different and symptoms experienced at end of life vary. Some common symptoms are pain, constipation, nausea, tiredness, breathlessness, fatigue and delirium.

In most cases symptoms can be controlled to a comfortable level, but some symptoms may not disappear completely.

Relief of symptoms is one of the major aims of the palliative care team. Contact your GP (doctor), a palliative care team member, or the Palliative Care Advice Service if you are concerned about management of symptoms.

Pain

Pain is a common symptom during end of life and palliative care. We all feel discomfort in different ways and people experience pain differently. Not all people who need palliative care suffer ongoing pain. Some people may feel uncomfortable if they feel sick, tired, worried or restless and this can result in feeling more pain.

Although there have been many advances in treatment of pain, it may not always be completely eliminated.

Assessing pain

The palliative care team and your GP will work together to enhance your quality of life. If your pain changes or is concerning, contact them and describe the problem. The GP or palliative care team may ask you:

• Where is the pain?
• How long has the pain has 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 lifestyle changes occurred?
• Do you feel like vomiting?
• When did you last have a bowel movement? (Constipation can cause pain.)
• How would you rate the pain on a scale of one to ten? (1 being ‘no pain’ through to 10 being ‘excruciating pain’). Anything scoring more than 4 out of 10 is regarded as pain that needs attention.

Pain management

Pain management is a key part of end of life and palliative care. If your pain is well managed, you will have a better quality of life. You are likely to sleep better and have more energy during the day. If you feel less pain, you can be more active, which also reduces your risk of complications.

In order to help manage pain, try the following:

• Lie on the bed or sit down.
• Take 10 deep breaths.
• Try to take your mind off the pain by reading, watching television or listening to music.
• If you think nausea (feeling like vomiting) or constipation (no bowel action for several days) may be causing the pain, refer to sections on nausea and constipation below.
• If the discomfort has not eased after 30 minutes, phone the palliative care team. They will be able to review the problem and suggest other ways to reduce the pain.

Pain medication

Pain relievers (or analgesics) are used frequently in end of life and palliative care. Always follow the instructions for taking your pain medication. Talk to your doctor or pharmacist if your medicines lose their ability to reduce your pain or are causing side effects. This can occur if you are taking pain relief medications 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 they may react with other medication you take.

Keep a good supply of your pain medication on hand so you do not run out.

Concerns about opioid use for pain management

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; they are predictable in their effect and the dose can be adjusted precisely.

Some people fear opioids because they think they might cause addiction or hasten 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 the same way as opioids. It’s also important to know that what causes death is the underlying disease, not the medication, when taken as prescribed. People with a life-limiting illness often take opioids for long periods without death being close.

If your doctor suggests the use of opioids, it is important that you know about the effect of these medicines and why they are used. Ask your doctor and palliative care nurse for more information. If side effects do occur, your doctor will manage them by prescribing other medicines, such as an anti-nausea tablet, or by carefully reducing the opioid dose.

Keeping a pain diary

If you are having difficulty keeping track of when your symptoms occur, it is a good idea to use a pain diary. By recording your pain every time it occurs, your healthcare team can chart the changes and make sure your medications are working correctly.

Medication charts are also useful tools. They can help you to remember to take your medication, take the right dose, and chart changes and progression of your symptoms.

Talk to your doctor or palliative care provider about setting up a pain diary or medication chart.

Nausea

Nausea is when you feel the urge to vomit or just feel sick. Nausea can be due to the disease itself, or occur as a result of medications, chemotherapy, radiotherapy, constipation or an imbalance of chemicals within the body.

If you have been prescribed anti-nausea medicines, and you feel nauseous, take them as directed, unless the thought of trying to take a tablet makes you feel worse.

Some people prefer not to eat or drink anything until the nausea passes; others find small amounts of food or drinks helpful. Rest or try deep breathing or play some soft music. A massage or bath or shower may help.

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

Constipation

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

To prevent constipation:

• drink plenty of fluids such as water or juice
• eat foods high in fibre
• take a short walk each day if you are up to it
• ask your doctor to prescribe a laxative if you have been prescribed strong pain medicines (such as morphine).

More information is available on the Constipation page.

Breathlessness

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

Some general tips that may help include:

• Sitting in an upright position.
• Put on a fan or open a window.
• Wear loose fitting clothing.
• Put on some calming music.
• For carers, maintain a gentle, reassuring presence – you could offer a foot, hand or shoulder massage, or hold their hand, if it makes the person feel better.
• If medicines for breathlessness have been prescribed, ensure they have been taken as directed. Morphine is often effective for relieving breathlessness.

If breathlessness is not relieved and is causing distress, phone the GP or palliative care team.

Fatigue

Fatigue is very common in people with life-limiting illness. It is a feeling of weariness, tiredness, or lack of energy that does not go away when you rest. Fatigue reduces the ability for people to be active, and can be frustrating and debilitating.

Possible causes of fatigue are lack of sleep, low blood oxygen levels, poor diet, depression, effect of chemotherapy or radiotherapy, infection, or the effects of the disease itself.

The following strategies may help manage fatigue:

• Have short naps during the day.
• Do some regular, gentle exercise.
• Eat nutritious food and drinks.
• Plan to do the most energetic tasks (such as having a shower or bath) when energy levels are higher.
• Take up a hobby that does not require a lot of energy. For example, board games, talking books, listening to the radio or watching television or videos.

If you think that fatigue has become worse, contact the GP or palliative care team.

More information is available on the Fatigue page.

Delirium

Delirium is a change in a person’s thinking, memory and behaviour. It can be distressing for the person who has it, and for their family. People with delirium may:

• become confused quickly
• experience sudden and fluctuating changes in behaviour and mood
• not recognise familiar people
• have difficulty remembering new information, concentrating and paying attention
• become fixated on one thing
• have difficulty telling day from night
• experience hallucinations (see things that are not actually there).

Delirium is caused by a disturbance in brain function. It may be caused by several factors, including dehydration, illness, recent surgery, medication or a combination of these. If you are older, or already have some memory problems, you may be more likely to develop delirium.

Treating delirium

The doctors and palliative care team looking after you check for causes of delirium and try to treat them so that the delirium is reduced. Changes in thinking and behaviour caused by delirium are not usually permanent. However, patients in a palliative care setting may be very ill and close to the end of life. In this situation the thinking, memory and behaviour problems associated with delirium may not be resolved completely.

Suggestions for helping someone with delirium include:

• When you are talking with a person with delirium, make sure you have eye contact with them. Speak slowly and calmly and remind them who you are, where they are and that you are there to help.
• Have family or friends stay with the person whenever possible.
• Try not to have too many visitors at once, or to have too much stimulation such as loud music or television.
• Encourage them to drink fluids as they may get thirsty, especially if they are restless.

Advise the GP or palliative care team if you think there are changes that might be due to delirium. Provide as much information as you can about recent health history. The GP or palliative care team may also ask you about any previous memory problems experienced. This information can be helpful in diagnosing the cause of the delirium, and preventing its recurrence.

Complementary therapies and self-management techniques

Complementary therapies and techniques can be used to help manage pain and other common symptoms in palliative care. Deep physical and mental relaxation can reduce anxiety and ongoing pain. Your doctor may be able to recommend therapists for natural pain relief.

Therapies and techniques may include:

• Heat or cold (used safely) – heat packs can aid relief of chronic musculoskeletal injuries and associated pain. An ice pack can be used to help reduce swelling immediately after an injury, such as after a fall.
• Physical therapies – walking, stretching and muscle strengthening exercises may help relieve pain, depending on its cause. Physical activity can also help people to maintain mobility and improve mood. A physiotherapist or osteopath can design a specific program.
• Breathing and relaxation – correct breathing technique, using the diaphragm and abdomen, can soothe the nervous system and manage stress.
• Hypnotherapy – uses imagery to induce a dreamy, relaxed state of mind. Hypnotherapy can also help to ease some of the side effects of cancer treatment, such as nausea.
• Massage – soothes muscles, encourages relaxation and increases circulation to the area being massaged.
• Meditation – the deliberate clearing of the mind to bring about feelings of calm and heightened awareness. The regular practice of meditation offers many long-term health benefits, such as reduced stress and blood pressure.
• Tai chi – a Chinese form of non-combative martial arts that consists of gentle movements to clear the mind and relax the body.
• Yoga – an ancient Indian series of postures that are done in time with the breath.
• Acupuncture – this ancient form of Chinese medicine involves inserting fine needles into the skin at specific points. It can be an effective treatment in some pain syndromes, but there is little research into acupuncture and cancer pain.
• Transcutaneous electrical nerve stimulation (TENS) – a very small electrical current is passed through the skin via electrodes, causing a pain-relieving response from the body.

Always check with your GP or palliative care team before beginning a new type of pain management treatment

Acknowledgment: Adapted from Hudson P and Hudson R 2012, Supporting a person who needs palliative care – a guide for family and friends, Palliative Care Victoria, and Palliative Care Expert Group 2016, Therapeutic Guidelines: Palliative Care Versions 3 and 4, Therapeutic Guidelines Limited, Melbourne.

Where to get help

• Your GP (doctor)
• Your palliative care team
• Palliative Care Advice Service