Caring for someone with a long-term lung condition
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Towards the end of life, people with long-term lung conditions may need extra support with symptoms such as breathlessness, coughing and flare-ups. They might also need extra emotional support. Health and social care professionals can support them, those important to them, and access other experts who can help.
On this page:
Key points
- Long-term lung conditions affect each person differently.
- Symptoms might have been part of the person's life for months or years. Having one or more symptoms does not necessarily mean the person is at the end of their life.
- Towards the end of life, flare-ups of the person's symptoms become more likely. The person's lung function is likely to get worse after each flare-up.
- There are a lot of things you can do to support someone with a long-term lung condition. These include helping to manage breathlessness and offering emotional support.
- Find out if the person has an advance care plan and support them to have discussions about their future care.
- Consult a local respiratory or specialist palliative care team for treatment and therapy options.
What are long-term lung conditions?
There are many different types of long-term lung conditions. These include, but are not limited to:
- chronic obstructive pulmonary disease (COPD)
- bronchiectasis
- cystic fibrosis
- lung cancer
- interstitial lung disease (ILD)
- mesothelioma and other asbestos-related conditions.
The symptoms for these conditions vary. Find out more about these conditions on the Asthma and Lung UK website.
Long-term lung conditions are usually considered terminal illnesses. Lung cancer and COPD are among the most common long-term lung conditions.
Each year, more than 43,000 people are diagnosed with lung cancer in the UK.
There are more than one million people living with COPD in the UK.
What are symptoms of long-term lung conditions?
The symptoms below are common in lots of lung conditions, including lung cancer and COPD.
Breathlessness and flare-ups
Most long-term lung conditions gradually get worse over time. The most common symptom someone will have is feeling increasingly out of breath. They might also notice their breathing becoming worse.
Flare-ups are when a person's symptoms become particularly severe. Flare-ups are sometimes called exacerbations.
As the person's lungs become less efficient, any physical effort might make them feel out of breath. This could include even small physical effort, such as changing their position, talking or eating.
It can also become uncomfortable to breathe if they are lying flat, so they may need to try sleeping with their head propped up.
Read more about breathlessness.
Read more about sleeping positions on the Asthma and Lung UK website.
Breathlessness and flare-ups in interstitial lung diseases
Interstitial lung disease is a term used for a large group of diseases that cause scarring of the lungs. For people with interstitial lung diseases, such as idiopathic pulmonary fibrosis, breathing can get worse more quickly, over days, weeks or months. Flare-ups can be severe, and potentially cause someone to die.
Asthma and Lung UK has more information about interstitial lung diseases.
Breathlessness and flare-ups in COPD
For people with COPD, flare-ups can impact the person's lung function at any time during their condition. In the last year of life, a person with COPD is likely to have more frequent flare-ups. After each of these flare-ups, their lung function will not return to the level it was at before, and breathing can become more difficult.
Asthma and Lung UK has more information on flare-ups in people with COPD.
Mental health symptoms
People living with long-term lung conditions can experience mental health symptoms as well as physical symptoms. Breathlessness can often cause a person living with a long-term lung condition to feel anxious. It can also cause some people to feel depressed.
Read about supporting someone with anxiety.
Low levels of oxygen in the blood
Reduced lung function may result in low levels of oxygen in the person's blood. Flare-ups may reduce oxygen in their blood further and can make these symptoms worse.
Other symptoms
A person with a long-term lung condition might have other symptoms including:
- a severe cough, or a cough that does not go away
- wanting to eat less or feeling less hungry
- chest pain
- swallowing problems
- voice changes
- sleep problems
- frequent flare-ups requiring hospital admissions or needing intensive home support
- finding it difficult to maintain a healthy body weight
- extreme tiredness (fatigue)
- a build-up of fluid in the body.
What are the symptoms of lung cancer?
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, which might make it difficult to sleep on one side
- blood in the mucus or phlegm
- pain when breathing or coughing
- weight loss.
What are the symptoms of COPD?
The main symptoms of COPD are:
- getting short of breath easily when doing everyday activties such as going for a walk or doing housework
- having a cough that does not go away
- wheezing in cold weather
- producing more sputum or phlegm than usual
- fatigue.
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 hot or cold weather can also cause a flare-up.
Asthma and Lung UK has more information about keeping well in the cold.
What are long-term lung condition symptoms towards the end of life?
Towards the end of life, physical and emotional changes might occur. These changes will affect each person differently. Some people might not experience these changes at all. They might happen over a period of weeks, days or maybe only hours. The presence of one or more of these changes does not necessarily mean the person is close to the end of life.
Skin changes
- Skin may become pale, moist and slightly cooler just before death. In people with darker skin tones, look for changes in colour of the lips, cheeks, mouth and nail beds.
- In people with lighter skin tones, a reduction in oxygen can present as a blue-ish tinge to lips, nail beds and ear lobes.
- In people with darker skin tones, a reduction in oxygen can present as a grey or white-ish tinge to lips, nail beds and ear lobes.
Movement and energy changes
- Loss of energy.
- Loss of the ability, or desire, to talk.
- Feeling sleepy or drowsy most of the time.
- Being very inactive and eventually becoming unconscious – they might spend a lot of time 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.
- Involuntary twitches – these are normal and do not mean that someone is distressed or uncomfortable.
Mouth, swallowing and coughing changes
- Difficulty swallowing fluids, certain foods and saliva.
- Difficulty coughing and a build-up of fluid (secretions) that may sound rattly. Read about noisy chest secretions towards the end of life.
- Dry mouth, especially if using oxygen therapy by face mask. Read about oxygen therapy.
Worsening condition
- Loss of appetite, or difficulty swallowing leading to less eating and drinking.
- More dependence on others for help with daily tasks, such as eating or going to the toilet.
- More frequent flare-ups, happening closer together.
- Needing oxygen, if oxygen levels are low.
- Needing the support of other medical equipment, such as a stairlift or ramp.
If you suspect the person might be nearing their last few days, talk to their GP or district nurse. They might arrange medicines which can be prescribed in advance and then given when needed to control any symptoms. These are sometimes called anticipatory medicines.
Find out more about anticipatory medicines.
Read more information on caring for someone who is near the end of life.
Read more information from Asthma and Lung UK about signs someone is the last weeks or days in life.
How can I support someone with a long-term lung condition?
Palliative care for long-term lung conditions focuses on treating breathlessness, flare-ups and other symptoms.
Understand how their condition affects their daily life
It's important to listen to the person and understand how their symptoms are affecting their life. Symptoms may affect daily activities – including washing, dressing, moving around and holding conversations. They may also have an impact on things like sexual relationships.
Asthma and Lung UK has more information about sex and breathlessness.
Consider which professionals might be able to help improve the person's quality of life and offer support. This might include a social worker or complementary therapist.
Offer access to pulmonary rehabilitation
Consider referring the person you are caring for to pulmonary rehabilitation or respiratory physiotherapy. This is an exercise and education programme designed for people with long-term lung conditions who experience symptoms of breathlessness. It aims to help people better understand their condition and supports effective self-management of their symptoms.
Check if the person has a personalised self-management or symptom management plan. If they do not have a plan, talk to their GP or district nurse about putting this in place.
Find out more about pulmonary rehabilitation on the Asthma and Lung UK website.
Offer access to palliative care
Palliative care can support a person to have the best possible quality of life. Early access to this care can mean their symptoms can be managed by specialists.
Find out if the person is already on the local palliative care register. This ensures appropriate support in case of an emergency. Some areas have an electronic palliative care coordination systembre (EPaCCS) or electronic patient records.
Plan care for the future
Find out if the person has an advance care plan. This is a way for them to tell others what's important to them and how they'd like to be cared for. It is especially helpful in case they're unable to make these decisions or communicate them in the future. Health and social care professionals are well-placed to help guide and prompt open discussions about future care plans.
It is important to remember that end of life care can be culturally sensitive in some communities. Think about the person's cultural needs, as well as their physical care needs when talking about future care.
Find out more about advance care planning.
The person might choose to nominate someone to look after decisions about their health and care, or their finances, for them. This is called a Lasting Power of Attorney.
Share information about making a Power of Attorney.
Find the best way to communicate
Ask the person how they would like to communicate. Symptoms such as breathlessness, or receiving oxygen can mean that a person with a long-term lung condition might have low energy, or find it difficult to speak. Think about other ways to communicate such as gestures or writing things down.
If you are unsure about how to best communicate with the person you are caring for, reach out to a speech and language therapist.
Read more about communication needs in palliative care.
Check vaccinations for long-term lung conditions
Check whether the person is up to date with vaccinations. It's usually recommended that people with long-term lung conditions have a flu vaccine and pneumococcal vaccine, as these conditions can be more severe in this group. You might also want to check if the person has had any COVID-19 vaccinations.
Asthma and Lung UK has further information about vaccinations on their website.
Help to manage mental health symptoms
Mental health symptoms such as anxiety and depression can have a negative effect on the person's quality of life. So, it is important to manage these symptoms alongside the physical symptoms of the person's long-term lung condition.
Some mental health therapies such as cognitive behavioural therapy (CBT) may be appropriate. You might also consider referring the person to relaxation therapies, such as meditation, breathing exercises, or visualisation techniques.
Read more about anxiety towards the end of life.
Read more about providing emotional care to people towards the end of life.
Help to manage breathlessness
Breathlessness might be managed using tablets and occasionally nebulisers. For people with COPD, breathlessness might be managed with inhalers.
Visit Asthma and Lung UK for information about nebulisers.
You could suggest the person uses a hand-held fan or opens a window when they are feeling breathless, as the sensation of air on the face can make it feel easier to breathe.
Consider showing the person breathing techniques, or help them get into positions to help them feel less short of breath (see useful resources).
Consider referring the person to a breathlessness management group. These groups are usually set up locally, and aim to promote living well with long-term lung conditions that cause breathlessness. Find out what is available in the person's area and signpost them to these opportunities, if appropriate.
Accessing complementary therapies such as massage therapy, mindfulness and yoga can also help aid relaxation and boost wellbeing.
Find out more about complementary therapies for breathlessness on the Asthma and Lung UK website.
Support oxygen therapy, if required
Some people may need support from oxygen therapy if their blood oxygen is low.
Oxygen therapy may not improve breathlessness, but it can help maintain oxygen to vital organs. If breathlessness becomes very distressing despite using oxygen, medications are available to reduce the feeling of breathlessness. This includes painkillers called opioids, such as morphine. Low doses of sedatives such as diazepam or lorazepam might also be prescribed to treat anxiety associated with breathlessness.
It is important to not smoke, or let anyone smoke around the person using the oxygen concentrator. Only use water-based products such as K-Y Jelly on people who are using an oxygen concentrator, rather than oil-based emollients such as Vaseline. This is because oil-based emollients can be flammable.
Read the NHS guidance on oxygen treatment at home.
Read more about assessing and managing breathlessness.
Asthma and Lung UK has more information about home oxygen therapy.
Helo to manage coughing attacks
Coughing attacks could be a problem for the person living with a long-term lung condition. Helping them sit as upright as possible, supported by pillows, can help. There are medicines that can help stop a distressing cough. These include simple linctus (cough syrup) and low dose pain killers, such as morphine. There are also ways to help which do not involve medicines, such as drinking lots of fluids and learning techniques to suppress coughing.
Post-nasal drip can contribute to coughing attacks. This is when mucus drips down the back of a person's throat. Check the person's nose and throat for symptoms, to help prevent this.
Coughing attacks and severe breathlessness may also produce incontinence of urine. This can be distressing and embarrassing for some people. In some people, drinks containing alcohol or caffeine can trigger more frequent urination. Reducing alcohol, and drinks containing caffeine, such as tea and coffee, may help to manage this. Continence products such as pads and special pants, can also help.
Help to manage lung flare-ups and chest infections
The person may have a flare-up of their symptoms if they get a chest infection.
Symptoms of a lung flare-up include:
- worsening cough
- more phlegm
- change in colour of phlegm (sometimes yellow or green)
- change in thickness of phlegm
- feeling more short of breath
- having a temperature
- body aches or headaches.
- fluid build-up (oedema)
- loss of appetite
- chest pain
- fatigue
- sleep problems.
Treat these symptoms promptly by following their flare-up plan, if they have one. Or you could contact their GP.
If the person has a severe flare-up, they may be admitted to hospital.
If the person has COPD, they may be given non-invasive ventilation to help improve the level of oxygen taken into the lungs and reduce the carbon dioxide in their blood.
Find out more about non-invasive ventilation.
If the person has another lung condition, such as interstitial lung disease, they might have a different type of treatment at hospital. This could include high flow nasal oxygen, which can sometimes be delivered at home by specialist teams.
If a flare-up makes the person's symptoms much worse and they need more specialist care, they may be referred to a hospice.
Know where to get extra support
If the person's symptoms cannot be managed, talk to their GP or district nurse about the type of things they need help with, and who may be able to help.
The person may be referred to a specialist palliative care team or local respiratory service for treatment and therapy options.
Professionals such as occupational therapists and physiotherapists may be able to help with things such as getting around and carrying out daily activities. Physiotherapists can advise the person on breathing exercises to help breathlessness, and muscle exercises to improve range of movement.
Speech and language therapists can help with any swallowing or communication difficulties. These problems might occur in people living with COPD or advanced lung cancer.
A counsellor, psychologist or spiritual adviser may be able to help the person come to terms with their condition and what they are able to do. Find out if the person you are caring for would like extra support from another member of the muti-disciplinary team, and find out what is available in their area.
How can I support those important to the person with a long-term lung condition?
Caring for someone with a long-term lung condition can be demanding. Those important to someone with a long-term condition may need support. Here are some ways you can help:
- Help them find which local support services are available.
- Share information about carer's assessments or accessing additional support.
- Provide information about long-term lung conditions at an early stage.
- Encourage them to have conversations with the patient about how they would like to be cared for in the future. This can help reduce stress and plan for future care.
- Share Marie Curie's free booklet about caring for someone with a terminal illness.
- Share Marie Curie's online information about caring for someone with a terminal illness.
- Share Asthma and Lung UK's information for people caring for someone with a lung condition
- Tell them about the Marie Curie Support Line.
- Tell them about the Marie Curie Bereavement Service.
Emotional distress and burden on caregivers can contribute to the distress of the person living with a long-term lung condition. So, supporting those important to the person can reduce stress for them, and for the patient. Supporting those around the patient is an important part of providing care and can improve quality of life.
Who to ask for help
If you're worried about medication or symptoms, speak to:
- your line manager
- the person's respiratory specialist nurse
- the person's palliative care team
- the person's GP.
Useful resources
They also provide a free helpline, which is open 9:15am-5:00pm, Monday to Friday: 0300 222 5800
You can also contact them via email: helpline@asthmaandlung.org.uk
Asthma and Lung UK: Managing breathlessness (information for your patients)
This content has been provided with support from Asthma and Lung UK.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
