Fatigue in palliative care

Fatigue is a very common symptom in palliative care - nearly all people living with a terminal illness will have fatigue at some point. Fatigue can be frustrating and upsetting for patients as they become less able to carry out their usual activities. But you can support them to make small changes to their daily routine which can improve their energy levels.

On this page:

What is fatigue?  

Fatigue is a persistent feeling of extreme tiredness, weakness or lack of energy. It’s different to normal tiredness as it’s not necessarily caused by doing lots of exercise or movement, and it’s not always relieved by rest.

Patients often describe fatigue as one of the most difficult symptoms to manage. Fatigue is a subjective feeling and patients will experience it in their own way. Fatigue can affect all aspects of life and can cause:

• extreme tiredness
• feeling weak and heavy-limbed
• difficulty sleeping or an altered sleep pattern
• difficulty carrying out activities such as washing and dressing
• difficulties with short-term memory
• difficulty concentrating, which makes it hard to do activities like reading, driving and socialising
• difficulty making decisions
• low mood
• lack of motivation.

Fatigue can happen at unpredictable times, and it can mean the patient is less able to do the activities they enjoy. It can also affect relationships with those around them, as they might need more support.

Fatigue can trigger lots of emotions. Patients may feel guilty about not being able to do as much at work or at home as they used to. They may feel frustrated if they feel like they’re missing out on things, or angry if they can’t identify what’s causing their fatigue.

Causes of fatigue

There are lots of causes of fatigue. Sometimes, the exact cause can be difficult to pinpoint. Factors contributing to someone’s experience of fatigue include:

• illnesses including cancer, heart and lung disease, kidney failure, hypothyroidism and neurodegenerative conditions such as motor neurone disease
• treatments, especially radiotherapy and chemotherapy
• medicines, such as opioids and antihistamines
• low blood count (anaemia)
• sleep disturbance
• depression
• illness-related weight loss (cachexia)
• poor nutrition
• environment – having lots of visitors, for example, can add to someone’s fatigue.

Assessing fatigue

Patients and those around them often assume that nothing can be done to help fatigue. They might not tell healthcare professionals unless they’re specifically asked.

Ask patient about fatigue and encourage open discussions about its impact. Acknowledge any worries or feelings of guilt that the patient might have. Helping patients understand what fatigue is can help to reduce their worries.

Ask about:

• any factors that make the fatigue better or worse
• the impact fatigue has on the patient’s activities and relationships.

Some services use questionnaires to assess fatigue such as the Brief Fatigue Inventory.   These should be used alongside a general conversation with the patient.

If you're concerned about fatigue, inform the patient’s GP, district nurse or specialist nurse. They can review their medicines and arrange tests to look for reversible causes.

Managing fatigue

Fatigue is best managed by a multidisciplinary team of health and social care professionals. This may include the patient’s GP, district or specialist nurse, an occupational therapist and physiotherapist. The patient may also be able to use specialist fatigue services at their local hospice.

Conserving energy

Often there's no quick fix for fatigue and the best way to manage it is to help the patient make the most of the energy they do have. The following tips may help:

• Encourage the patient or their carers to keep a diary, to see when they have the most energy.
• Plan the day ahead so that they can do activities when they have most energy.
• Spread activities out across the day with enough rest in between − short naps during the day might be helpful.
• Prioritise the activities that are most important to them.
• Suggest sitting down to do tasks like preparing meals.
• Encourage good sleep habits at night. For example, suggest cutting down on screen time before bed. 

An occupational therapist can help the patient to plan the best way to do activities and supply equipment such as walking aids.

Talk to the patient and anyone who supports them about who can take on extra duties at home, so the patient doesn’t have so much to do. Some patients might feel like they need permission to ask for help, or feel guilty about not doing things themselves. If the patient is having lots of visitors, this may contribute to their fatigue. Let them know they can rearrange visits, or say no to visitors, if they want to.

Medical treatment

Medical and nursing staff involved in the patient’s care will identify and treat any reversible causes of fatigue if appropriate. For example, blood transfusions can be helpful in some patients with anaemia.

Occasionally the medical team will suggest medicines, such as steroids, to improve appetite and energy levels.

Physical activity

Regular physical activity enhances energy levels and can improve quality of sleep at night. Patients might need encouragement to try physical activity if they are feeling tired or low in motivation. A physiotherapist can recommend appropriate exercises for individual patients.

Wellbeing therapies and diet

Fatigue can have an emotional, mental and physical impact. Complementary therapies, like massage or meditation, may relieve feelings of stress and tension and increase energy levels.

A well-balanced diet and plenty of fluids can improve energy levels. Small, frequent meals might be easier than large meals.

Information for your patients

We have information for patients and the people supporting them:

• Complementary therapies
• Keeping active
• Managing weakness and fatigue
• A free booklet about managing fatigue

Useful resources

Scottish Palliative Care Guidelines: Weakness and Fatigue