Caring for someone with chronic respiratory diseases at end of life
Please be aware - this information is for healthcare professionals
- chronic obstructive pulmonary disease (COPD)
- cystic fibrosis
- lung cancer
- idiopathic pulmonary fibrosis.
The symptoms for these conditions vary. You can find further information about them at blf.org.uk .
What are the main symptoms of a long-term lung condition?
In the UK, over half of respiratory deaths are caused by lung cancer and COPD.
The main symptoms of lung cancer are:
- a cough that lasts more than three weeks
- feeling out of breath
- wheezing from one side of the chest (this might make it difficult to sleep on one side)
- blood in the mucus or phlegm
- weight loss.
The main symptoms of COPD are:
- getting short of breath easily when performing everyday things such as going for a walk or doing housework
- having a cough that lasts a long time
- wheezing in cold weather
- producing more sputum or phlegm than usual.
A person affected by COPD might get these symptoms all the time or they might appear or get worse when they have an infection or breathe in smoke or fumes. Going out in cold weather can also have a harmful effect due to cold air entering the lungs.
Palliative care for long-term lung conditions
Most long-term lung conditions get worse gradually over several years, so it might be a good idea to find out whether the patient has an advance care plan.
The most common symptom someone will experience in the final stages is feeling increasingly out of breath and a gradual worsening of their breathing. Some people’s breathing might get worse much more quickly, over weeks or months. This is particularly true of interstitial lung diseases, such as idiopathic pulmonary fibrosis.
Towards the end of their life, a person with a long-term lung condition will probably experience frequent flare-ups. After a flare-up, their lung function will not return to the level it was at before, and breathing will become more difficult.
As the person’s lungs become less efficient, any exertion – even just changing their position, talking or eating – might make them feel out of breath. It can also become uncomfortable to breathe if they are lying flat, so they may need to try sleeping in a fairly upright position.
Reduced lung function results in low levels of oxygen in the blood. This can cause fluid retention in the person’s legs and tummy and also a congested liver, which can be uncomfortable. The person may also feel tired and light-headed. Flare-ups will usually reduce oxygen in their blood further and can make these symptoms worse.
Palliative care for lung conditions focuses on treating symptoms of breathlessness, flare-ups and other symptoms, including:
- a troublesome cough
- poor appetite
- chest pain
- disturbed sleep patterns
- frequent hospital admissions or needing intensive home support due to regular flare-ups
- finding it difficult to maintain a healthy body weight
- feeling more anxious and depressed.
How can I support a person with a long-term lung condition?
Palliative care for someone with a long-term lung condition will focus on controlling their symptoms, which can be distressing and uncomfortable.
The patient’s breathing might be improved by using inhalers, tablets and occasionally nebulisers. You could also suggest that the patient uses a hand-held fan when they are feeling breathless, as the sensation of air on their face can make it feel easier to breathe.
If the patient’s breathlessness is more severe and blood oxygen is low, long-term oxygen might be prescribed to improve their breathing and quality of life.
This is generally delivered from a machine called an oxygen concentrator, which concentrates the oxygen from the air. The machine normally needs to be used for at least 16 hours a day. The amount of oxygen given to the patient needs to be carefully assessed and monitored and may need to be increased over time.
Oxygen is available by prescription only and is provided by a local oxygen supplier. Normally, the local respiratory team will assess the patient’s need for oxygen, however, their GP can also prescribe oxygen. See our page on oxygen therapy for more information.
Coughing attacks could be a problem for your patient. Helping them sit as upright as possible, supported by pillows, can help. There are a number of medicines that can help stop a distressing cough.
Coughing attacks and severe breathlessness may also produce distressing and embarrassing incontinence of urine. This can be managed by reducing drinks containing caffeine, such as tea and coffee, and alcohol. There are also a number of continence products that can help, such as pads and special pants.
The patient may experience a flare-up of their symptoms if they contract a chest infection. Their cough is likely to worsen and they may produce a discoloured, yellow or green phlegm. They will probably feel more short of breath. This should be treated promptly with their rescue medication, following their flare-up plan.
If the patient experiences severe flare-ups, they should be admitted to hospital (see NICE guidance on COPD in over 16s) or a hospice, where they may be given non-invasive ventilation to help improve the level of oxygen taken into the lungs. This is delivered by a mask and a portable machine that supports breathing by providing air or oxygen under slight pressure. There may also be an option for them to stay at home with support from a specialist respiratory team or specialist physiotherapist.
End of life
In the last few days of someone with a long-term lung condition’s life, there are a number of physical and emotional changes that might occur. Not everyone will experience the same or all of the changes, and they might occur over a period of weeks, days or maybe only hours.
Signs to look out for in respiratory patients include:
- loss of appetite or not wanting to drink very much or at all
- difficulty swallowing
- loss of energy, the ability or desire to talk and signs of withdrawing from family and friends
- feeling sleepy or drowsy most of the time, being very inactive and eventually becoming unconscious. It is not unusual for someone to stay in bed or a comfortable chair rather than getting up
- changes in breathing rate or pattern. As the body becomes less active, the need for oxygen reduces
- needing oxygen, if it’s not already being used, and the support of other medical equipment
- changes in skin colour and temperature. Skin may become pale, moist and slightly cooler just before death
- involuntary twitches. These are normal and do not mean that someone is distressed or uncomfortable
It’s best practice to look for these symptoms along with a significant change in baseline observations to identify if the person is nearing the end of their life. At this point, primary or palliative care teams may choose to start anticipatory drugs to control some symptoms in line with advance care planning. For more information, see our page on recognising the deterioration/dying phase.
This content has been provided by the British Lung Foundation .
Points to remember
- Each person’s experience of the final stages of a long-term lung condition is different and the presence of one or more symptoms doesn’t necessarily mean your patient is close to death. They might have been part of their life for months or years before.
- The patient is more likely to have flare-ups of their symptoms and their lung function is likely to deteriorate after each one.
- Consult a local respiratory or specialist palliative care team for treatment and therapy options.
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