Breathlessness is a common symptom for people living with a terminal illness. It can be distressing for patients, as well as those around them, but there are lots of things you can do to help manage it.
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What is breathlessness?
Breathlessness, also called shortness of breath or dyspnoea, is a physical symptom which can affect a patient’s ability to do day-to-day tasks and the things they enjoy.
Breathlessness can also have a psychological impact – how the patient is feeling mentally can affect how severe their breathlessness is.
How can breathlessness affect a patient’s life?
Breathlessness can affect patients in different ways. It can:
- make them feel uncomfortably aware of their own breathing
- be an overwhelming symptom that affects everything they try to do
- come on when exerting lots of energy, like when walking up the stairs
- come on when they’re not active, like when they’re resting or sitting down.
How might patients describe breathlessness?
Breathlessness feels different for different patients. It can feel like:
- tightness in the chest
- they’re having to work harder to take a breath
- they’re not getting enough air with each breath they take
- they’re not able to finish their sentences because they’re so breathless.
Breathlessness can come on suddenly and last a short amount of time, or it can develop slowly and gradually get worse over time. It can be continuous or it can come and go (episodic breathlessness).
Severe breathlessness can be an emergency. Read more about this in When to ask for help below.
Breathlessness and anxiety
Breathlessness is closely linked to anxiety. Patients may become anxious because they're breathless. This anxiety can also make their breathlessness worse. It's sometimes described as a cycle.
Treatment for breathlessness should always involve listening to and addressing the patient’s fears and concerns. Read more about this in Managing breathlessness below.
Breathlessness and daily life
When breathlessness limits a patient’s ability to do day-to-day tasks, they can become more dependent on carers. Breathlessness can also limit their ability to have social interactions and do the things important to them.
But with the right care and intervention, breathlessness can be properly managed. The right care can give patients greater independence and enable them to do the things that are important to them.
Causes of breathlessness
Breathlessness can be caused by many different illnesses.
Chronic illnesses that can cause breathlessness include:
- chronic obstructive pulmonary disease (COPD)
- pulmonary fibrosis
- heart failure
- neurodegenerative disorders such as motor neurone disease and multiple sclerosis
- cystic fibrosis (CF).
Acute illnesses can cause breathlessness, including:
- infections like pneumonia
- pulmonary embolism.
Symptoms and side effects of an illness can also cause breathlessness. For example, cancer can cause breathlessness as a result of:
- tumours, which can cause compression of the airways
- anaemia (when red blood cells can’t carry enough oxygen around the body)
- lung metastases (cancer which has spread to the lungs from elsewhere in the body)
- pleural effusion (a build-up of excess fluid between the lining of the lungs).
As well as the illness itself, there are some common factors that can make breathlessness worse in patients with a terminal illness. These include:
- fatigue
- a lack of exercise, or an inability to exercise
- if a patient has asthma
- anxiety and fear.
Assessing breathlessness
Breathlessness affects every patient differently. The best way to assess it is by asking the patient to describe what they are experiencing.
Ask the patient to regularly rate the severity of their breathlessness from one to 10 and write it in their notes. This can help you measure how it changes over time and monitor how well they're responding to treatment.
Speak to your patient about any feelings of anxiety, panic or fear associated with their breathlessness. Allow plenty of time to talk sensitively and at the patient’s pace.
You can help to address their concerns by asking what helps with their feelings of anxiety – for example, having their hand held, or sitting in a different position. You can also give them techniques to help manage their feelings of anxiety and panic. Read more about this in Managing breathlessness below.
Ask the patient what makes their breathlessness better or worse. Ask them about the impact of breathlessness on their daily activities and relationships. You can ask them specific things, like how far they can walk without getting breathless. You can also ask what’s important to them, and whether they’re still able to do these things.
Try not to assume how much the patient can or can’t do. Find out what’s too much for them – for example, whether their breathlessness makes it hard for them to get washed and dressed in the morning.
If the patient is happy to, you can also involve their family and friends in the conversation. They may be able to give examples of when they’ve noticed the patient become breathless.
Remember to document anything the patient has told you or any advice you've given them. This helps the next person looking after them to get a good picture of how they’re managing.
The patient may need a clinical examination by a doctor or specialist nurse. They may do further investigations to identify any reversible causes of the patient’s symptoms. An examination should only be carried out if:
- the patient is happy to be examined
- further investigations could lead to an improved quality of life for the patient
- further investigations wouldn’t cause the patient harm.
Managing breathlessness
When a patient is able to manage their breathlessness, they often report greater feelings of wellbeing, dignity and control over their symptom.
Breathlessness should be 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, physiotherapist and counsellor. Read more about this in Things specialists can help with below.
There are general measures, non-pharmacological techniques and medications that help to manage a patient’s breathlessness. Remember that the patient is the expert of their own breathlessness – they should be encouraged to plan activities and learn techniques which will help them to manage the symptom.
Simple techniques
There are some simple techniques you and the patient can do immediately:
- Encourage the patient to listen to their own body. It’s helpful for them to know when they are exerting themselves too much and when they should be resting.
- Try to identify what’s causing their breathlessness at that time. If the patient is able, talk to them to find out if anything is worrying them or making the breathlessness worse.
- Encourage the patient to plan activities with enough time to rest in between.
- Encourage the patient to prioritise the most important activities.
- Encourage the patient to stay physically active, if appropriate, as this can help prevent respiratory muscle weakness and fatigue.
- Make small adaptations to the patient’s environment which could help them with their breathlessness. For example, move their bed closer to the window or have a fan to help them get a draft of air.
- Refer the patient for an assessment with an occupational therapist or physiotherapist. There is more information on how they can help below.
Share our information for patients and carers on managing breathlessness, including a guide to controlled breathing.
Things specialists can help with
Physiotherapists and occupational therapists can:
- give advice on how to cope with activities which trigger breathlessness, such as walking and climbing stairs
- provide equipment which can help ease the patient’s breathlessness, like walking aids
- teach the patient controlled breathing exercises to reduce breathlessness and allow them to feel more in control.
Relaxation techniques can alleviate the fear and panic that contributes to breathlessness.
Other specialist ways of managing breathlness include:
- cognitive behavioural therapy (CBT), which can help manage fears and negative thoughts associated with breathlessness
- making an advance care plan, which can help patients to feel less anxious about the future. Read more about advance care planning.
- complementary therapies, like acupuncture.
Medication
Medical treatment involves treating any underlying conditions that are contributing to breathlessness. Medications can also be given to relieve symptoms that make breathlessness worse, such as pain and anxiety.
Common medications used to treat causes of breathlessness and related symptoms are listed below.
Opioids
Opioids are effective in treating breathlessness. If breathlessness is episodic (it comes and goes), oral morphine can be given to provide short-term relief.
Oxycodone can be used for patients with impaired renal function. If breathlessness is chronic, longer-acting morphine or oxycodone can be given.
Benzodiazepine
Lorazepam and diazepam can help to reduce anxiety associated with breathlessness.
Midazolam can be used when a patient is dying to treat any agitation secondary to their breathlessness.
Bronchodilators
Salbutamol can be given via an inhaler or nebuliser. It relaxes the airways to allow more air into the lungs.
Mucolytics
Carbocisteine can be used if a patient has difficulty coughing up sputum. It can help to loosen the mucus in their airways.
Corticosteroids
Prednisolone can be used to reduce inflammation in the airways, which makes breathing easier.
Oxygen
Home oxygen can sometimes be used to help manage breathlessness. It is useful for reducing breathlessness in people who have low levels of oxygen in their blood (hypoxaemia), but it’s not helpful for all patients.
Supporting someone who's having a breathlessness episode
You can a draft of air to reduce the sensation of breathlessness by:
- opening a window
- placing a standing fan or desk fan near the patient
- giving the patient a hand-held fan to use when they feel breathless.
Reassure the patient during an episode of breathlessness. Find out how they like to be supported normally – for example, they might find it comforting if you hold their hand. Speak to the patient in a calming manner and offer reassurance that the episode will pass.
Positioning of the patient in the bed or chair is important:
- Sitting upright means gravity can help the lungs expand. It also reduces pressure from the abdomen on the diaphragm.
- Sitting forward and resting the arms on a table or secure surface with the wrists relaxed helps the chest muscles to relax. This allows more air into the lungs.
If you're qualified to administer medications, give the patient any as required (PRN) drugs they have been prescribed for acute breathlessness as detailed in their care plan.
Breathlessness and coronavirus
For patients with coronavirus (covid-19), many of the techniques above will still help to manage their breathlessness.
Keeping the room cool, using relaxation and breathing techniques, and positioning the patient differently can all help with breathlessness.
Seeing healthcare professionals in PPE (personal protective equipment) can cause a patient to feel anxious, which can make their breathlessness worse. Speak to the patient and anyone around them about why you're wearing PPE, and try to reassure any concerns they have.
You may find it helpful to read the following information on supporting patients with coronavirus:
- The NICE rapid guideline on covid-19 which includes information on caring for patients with breathlessness.
- The British Lung Foundation’s information about coronavirus for people with a lung condition.
When to ask for help
Speak to the patient’s GP and district nurse if breathlessness comes on very suddenly, as it could be a sign of a serious condition such as a pulmonary embolus (PE) or superior vena cava obstruction. If the GP isn’t available, call the out of hours service.
You should also speak to the patient’s GP and district nurse if their breathlessness changes suddenly – including if it gets suddenly better.
If the cause of breathlessness is unclear or if it’s not improving with treatment, speak to the district nurse or GP as your patient may need to be referred to a specialist palliative care team.
If you’re unsure about anything to do with your patient and their breathlessness, speak to your manager.