Information for consumers - Chronic Obstructive Pulmonary Disease Clinical Care Standard
The Chronic Obstructive Pulmonary Disease (COPD) Clinical Care Standard describes the health care that you should expect to receive if you have COPD. Find out more about the ten quality statements from the COPD Clinical Care Standard, as well as helpful resources - including a video of John's experience living with COPD.
What is Chronic Obstructive Pulmonary Disease (COPD)?
COPD is a common lung condition that causes narrowing of the airways and makes it difficult to breathe. The most common risk factor for COPD is current or past tobacco smoking. But people who have never smoked can also develop COPD. In some people, COPD may also cause damage to the lungs (sometimes called emphysema).
When the condition occurs, it is long-term in nature and there is currently no cure. However, there is a range of things that people living with COPD can do to help manage their symptoms and improve their quality of life.
Information resources
The COPD Clinical Care Standard contains 10 quality statements. This guide explains each quality statement and what it means for people living with COPD.
Consumer video
This video helps raise awareness about the impact of COPD and has been developed to provide insight about strategies that can be used to manage symptoms and live well, from a person with a lived experience of COPD.
What the standard means for you
The standard contains ten quality statements describing the care that you should be offered if you have chronic obstructive pulmonary disease. Find out what the standard says and what it means for you in the statements below. You can use this information to inform discussions with your healthcare provider, and help you make informed decisions about your care.
What the standard says
A person over 35 years of age with a risk factor and one or more symptoms of chronic obstructive pulmonary disease (COPD) receives high-quality spirometry to enable diagnosis. Spirometry is also performed for a person with a recorded diagnosis of COPD that has not yet been confirmed with spirometry.
What this means for you
Chronic obstructive pulmonary disease (COPD) is a long-term condition that causes narrowing of the airways in the lungs, making it difficult to breathe. In some people, COPD may also cause damage to the lungs (sometimes called emphysema).
It is important to identify COPD early as there are a range of treatments that can help prevent your symptoms from getting worse, improve your lung health, and reduce the risk of flare‑ups of the condition (sometimes called exacerbations).
COPD is more likely if you are over 35 years of age and have at least one risk factor and one or more symptoms of the condition.
The most common risk factor for COPD is current or past tobacco smoking (for example, cigarettes or waterpipes [shisha]). People who have never smoked can also have COPD. Other risk factors include:
- Exposure to second-hand smoke
- Exposure to harmful chemicals, fumes, or dust, especially at work
- Exposure to indoor air pollution from using cooking or heating fuels without proper ventilation
- Exposure to outdoor air pollution, including bushfire smoke
- Childhood factors such as premature birth, low birthweight or frequent respiratory infections
- History of asthma
- Genetic conditions (for example, alpha-1 antitrypsin deficiency).
Symptoms of COPD include:
- Shortness of breath, which worsens with activity or exercise
- Having a cough that does not get better
- Regularly coughing up mucus or phlegm
- Frequent chest infections
- Wheezing
- Chest tightness
- Feeling more tired than usual.
A breathing test called spirometry (sometimes called a lung function test) is the only way to accurately diagnose COPD. Accurate diagnosis is important because other lung conditions such as asthma can cause similar symptoms to COPD but have different treatments.
You should have spirometry if you are over 35 years of age and:
- Have any risk factor for COPD and one or more symptoms
- Have been told that you have COPD but have not had spirometry, even if you have been in hospital because of COPD symptoms.
Your healthcare provider will provide you with information on spirometry and how to prepare for the test (see the fact sheet Getting ready for spirometry for more information). Spirometry is done by taking a deep breath in and then breathing all the air out as quickly as you can into a machine called a spirometer. The spirometer checks how well your lungs are working and if there is something affecting the airflow in your lungs as you breathe.
Your healthcare provider will explain your spirometry results to you. If the results show that you have COPD, they will explain what this means and discuss ways to manage the condition. This may include medicines and other treatments. If your spirometry does not suggest COPD, your healthcare provider will discuss other possible causes and next steps with you. They may recommend additional tests such as a chest X-ray or more detailed breathing tests.
COPD can also affect people who are younger than 35 years of age. Speak to your healthcare provider if you’re worried about any symptoms related to your breathing, regardless of your age.
See our list of related resources for this quality statement
A person with a confirmed COPD diagnosis receives a comprehensive assessment to determine their individual care needs. This includes assessing their symptoms and disease severity using a validated assessment tool, history and risk of exacerbations, and comorbidities. Follow-up assessment occurs at least annually.
What this means for you
If you have been diagnosed with COPD, your healthcare provider will work with you to understand more about your symptoms, needs and health goals. They will also check if you have had or are at risk of having a COPD flare-up (also called an exacerbation) and identify any other health conditions you have. Depending on your needs, you may need to see more than one healthcare provider (for example, a general practitioner, nurse, physiotherapist or lung specialist).
Your healthcare provider will ask about your medical history, your medicines, your physical and mental wellbeing, and the assistance you have, or may need, to help you live well. They may ask you to complete questionnaires to help understand your symptoms, their impact on your day-to-day activities, and your care needs. You may need to have more than one conversation with your healthcare provider or longer appointments to discuss these aspects of your care.
As well as spirometry, you may need other tests such as blood tests, a chest X-ray or more detailed breathing tests. Your healthcare provider should share the results of any tests completed with you and explain to you what they mean.
A full assessment can help ensure that your treatment plan suits your individual needs and help you to make decisions with your healthcare team about your care. You can also involve support people (such as a family member or carer) to help you make decisions about your care.
Your healthcare provider should offer you a follow-up appointment to check how you are going with your COPD management, and whether any changes are needed. This follow-up should occur at least once every year, or more frequently depending on your health needs. It is important to see your healthcare provider if you are not feeling well between appointments.
See our list of related resources for this quality statement
A person with COPD is supported to learn about their condition and treatment options. They participate in developing an individualised self-management plan that addresses their needs and treatment goals and includes an action plan for COPD exacerbations.
What this means for you
Your healthcare providers will help you understand more about COPD, available COPD treatments and what you can do to manage your health. Although there is no cure for COPD, you can live well with your condition and there are things you can do to manage your symptoms. This information may be provided by your general practitioner, pharmacist, physiotherapist, nurse, nurse practitioner or lung specialist.
Information about COPD should be provided to you in a way that you can understand and use. This could be verbal information, written information, or information about where to find out more. It is important to ask questions, to make sure that your care is right for you.
You can manage and improve your symptoms, reduce the chance of flare‑ups (exacerbations) and support your overall wellbeing by:
- Quitting smoking if you smoke or vape (see Quality statement 4)
- Keeping up to date with recommended vaccinations (see Quality statement 4)
- Keeping physically active and exercising
- Participating in pulmonary rehabilitation (a supervised exercise, education and self‑management program) (see Quality statement 5)
- Using ways to help relieve breathlessness (for example, using a handheld fan, breathing techniques or breathlessness recovery positions); more information on breathlessness is available at the Lung Foundation Australia website
- Learning ways to manage tiredness and to conserve your energy
- Using your medicines as prescribed, and knowing how to use, clean and store your inhalers and spacers correctly
- Eating a healthy diet and having a healthy weight
- Washing your hands regularly and using a face mask and physical distancing when out in public, to reduce your chance of catching a cold, flu, or other virus.
Your healthcare provider will discuss the management options available and develop a self‑management plan with you so you know what to do. The plan should include a written summary of the self‑management activities you have discussed, as well as information about your inhalers and other medicines and how to take them. You may also be given referrals or recommendations for other services or healthcare providers (such as a dietitian, speech pathologist, or physiotherapist).
See our list of related resources for this quality statement
It is important to have an up-to-date COPD action plan as part of your self‑management plan. A COPD action plan explains what to do if your symptoms are getting worse despite your usual treatment. The plan should say what medicines to use and how to use them and explain when to seek medical help (including contact phone numbers). Keep your COPD action plan somewhere you can easily find, if you have a flare-up of your symptoms.
If you are unsure about anything in your plan, ask questions to make sure it is clear to you. It is important that you and your healthcare provider check your COPD action plan regularly to make sure it is up to date and discuss any changes that may be required. This is especially important if you have a flare-up or have a hospital admission.
A person over 35 years of age with a risk factor and one or more symptoms of chronic obstructive pulmonary disease (COPD) receives high-quality spirometry to enable diagnosis. Spirometry is also performed for a person with a recorded diagnosis of COPD that has not yet been confirmed with spirometry.
What this means for you
There are some things you can do to slow the progression of COPD, reduce the risk of flare‑ups, and improve your symptoms and overall health.
Vaccination
People with COPD are more likely to become very unwell and have complications from infections such as influenza (the flu) than other people.
Vaccination can protect you against infections caused by viruses and bacteria and has been shown to prevent flare‑ups and severe illness for people with COPD.
Recommended vaccinations include a flu vaccination every year and regular vaccinations for pneumococcal disease and COVID-19. Your healthcare provider may also recommend other vaccinations (for example, shingles), depending on your needs.
Vaccinations are available at a range of healthcare services, including general practitioner clinics, community pharmacies, local council immunisation clinics, community health centres and Aboriginal Medical Services. You can ask your preferred vaccination provider about the vaccines they provide and whether you are eligible to receive funded vaccinations (free to the consumer) as part of the National Immunisation Program.
Quitting tobacco smoking
Quitting tobacco smoking is one of the most effective ways to slow the progression of COPD, reduce flare‑ups, and improve symptoms and overall health.
This is why your healthcare provider will ask you about tobacco smoking. This includes the use of cigarettes or electronic cigarettes (sometimes called e-cigarettes or vapes). Although research is ongoing, there is evidence that vaping can be harmful to your health. Your healthcare provider may also ask if you smoke substances other than tobacco.
Discussing tobacco smoking, if you currently smoke cigarettes or vape, can help your healthcare provider to understand more about your health. If you do smoke tobacco, it is important for your health that you quit. Your healthcare provider should discuss tobacco smoking in a non‑judgemental way, and work with you to find ways to help you quit. There are different options they can advise you about.
For most people, quitting tobacco smoking is not easy, and usually takes more than one attempt. Because of this, your healthcare provider will offer to refer you to support services such as Quitline. This is a telephone service staffed by counsellors who are trained to help people to quit tobacco smoking, including vaping. Your healthcare provider may also recommend nicotine replacement therapy or other medicines that may improve your chances of successfully quitting smoking.
Your healthcare provider will check your progress with the treatments or services they have recommended and can provide further advice and support on your journey to quit.
See our list of related resources for this quality statement
A person with COPD is referred for pulmonary rehabilitation. If the person has been hospitalised for a COPD exacerbation, they are referred to a pulmonary rehabilitation program on discharge and commence the program within four weeks.
What this means for you
An important part of managing COPD is staying active and exercising to improve your wellbeing and help make your daily activities easier. If you find physical activity difficult and still have symptoms such as breathlessness despite using your medicines, you could benefit from a pulmonary rehabilitation program.
Pulmonary rehabilitation is a six-to eight-week program that combines exercise, education and self‑management techniques to improve lung health in people with COPD. The program is delivered by healthcare professionals with specific training, including physiotherapists, accredited exercise physiologists, nurses and rehabilitation specialists. Depending on your needs, other healthcare providers such as dietitians, speech pathologists or psychologists may also be involved. These programs are offered through hospitals but may also be available in community clinics or delivered online.
Pulmonary rehabilitation programs can reduce breathlessness and fatigue, boost fitness levels and muscle strength, and reduce anxiety and depression in people with COPD. They can also reduce the risk of COPD flare‑ups.
As part of pulmonary rehabilitation, you will be offered an exercise program to improve your symptoms and overall fitness. Your program will be tailored to your individual needs and abilities. It is important to continue exercising and stay active even after you have completed the pulmonary rehabilitation program so that you maintain the health benefits. Your healthcare provider will discuss what exercise may be best for you and how often you should exercise.
Pulmonary rehabilitation programs will also help you to better understand how to manage breathlessness and other COPD symptoms, use your inhalers effectively, and manage other aspects of your condition. For example, some people with COPD can experience swallowing difficulties, problems with their nutrition, or mental health concerns.
Depending on your needs, your healthcare provider can provide referrals to other clinicians (for example, speech pathologist, dietitian or psychologist) for further assessment and management.
If you are admitted to hospital because of a COPD flare-up, you should be referred to a pulmonary rehabilitation program, even if you have completed one before. For the best outcomes, it is recommended to start the program within four weeks of leaving the hospital.
In some areas, accessing a pulmonary rehabilitation program can be difficult. Your healthcare provider will help you find the nearest available program. If it is difficult for you to join a program, they may explore other ways to support you to exercise. This may involve online programs with at-home exercises (sometimes called telerehabilitation), local exercise programs, or a referral to a healthcare professional with experience in exercise and lung health (such as a physiotherapist or accredited exercise physiologist) who can provide advice about suitable exercises.
For further information, you can refer to the Lung Foundation Australia’s pulmonary rehabilitation fact sheet.
See our list of related resources for this quality statement
A person with a confirmed COPD diagnosis is offered individualised pharmacotherapy in line with the COPD-X stepwise approach. Inhaler technique is demonstrated, assessed and corrected when starting treatment and regularly thereafter, including after any change in treatment or a COPD exacerbation.
What this means for you
Medicines are an important part of managing COPD. Although they cannot cure COPD, they can help reduce your symptoms and prevent flare‑ups.
There are different medicines used for COPD. Because every person’s health needs are different, your healthcare provider will recommend medicines that are appropriate for you and explain how they can help improve your symptoms and reduce the risk of flare‑ups.
When you are first diagnosed with COPD, your healthcare provider will prescribe a ‘reliever’ medicine – a medicine to provide quick relief if you are experiencing symptoms such as breathlessness or wheezing. Your healthcare provider may also prescribe a ‘maintenance’ medicine – a medicine to be used regularly to help control your symptoms and prevent flare‑ups. If your COPD becomes more severe, your healthcare provider may prescribe additional medicines.
It is important to use your medicines as prescribed. If you are unsure about how and when to take your medicines, ask your prescriber to explain, or seek advice from your pharmacist.
Most medicines for COPD are given through an inhaler. Some inhalers are best used with a ‘spacer’ – a device which attaches to the inhaler and can make it easier to use. Your healthcare provider may recommend using a spacer if it suits the type of inhaler you have been prescribed.
There are different types of inhalers available and each one has different instructions for use. It is important to understand how to use your inhaler correctly.
Your healthcare provider should show you how to use your inhaler (and your spacer if you have one) and explain how to look after it. This is to make sure you are getting the full dose of your medicine. They may ask you to show them how you use it, to make sure you are comfortable using it correctly. They may also give you written information on how to use your inhaler, so you can refer to this later on if needed. Your inhaler technique should be checked regularly, including:
- When you start an inhaler for the first time
- Whenever you are prescribed a different inhaler
- If you experience a flare-up of your symptoms.
Remember to take your inhalers with you to any follow-up appointments. This will help your healthcare provider check how you are using your inhalers.
You can ask any member of your healthcare team (for example, general practitioner, nurse, pharmacist, physiotherapist or lung specialist) if you are not sure how to use your inhalers, and you can ask more than once – your healthcare team will know this is important.
See our list of related resources for this quality statement
A person having a COPD exacerbation receives short-acting bronchodilator therapy at the onset of symptoms and, if indicated, oral corticosteroids in line with the current COPD-X Guidelines. Antibiotics are only considered if criteria for prescribing are met, and they are prescribed according to evidence-based guidelines.
What this means for you
People with COPD can sometimes experience a flare-up of their symptoms (called an exacerbation) that requires extra treatment. It is important to know the signs of a flare-up, as early treatment can prevent it from getting worse and could help prevent a hospital admission. Signs of a flare-up may include:
- Feeling more out of breath than usual
- Feeling more tired than usual
- Having difficulty with usual activities
- Coughing more than usual
- Producing more mucus than usual
- A change in the thickness or colour of your mucus.
If you think you are having a flare-up, follow the instructions in your COPD action plan which should explain what changes to make to your medicines (see Quality statement 3). For most people, this will include using more of your reliever medicine to relieve symptoms of breathlessness or wheeze. Some people may need extra medicines such as corticosteroid tablets (for example, prednisolone) or antibiotics.
Antibiotics are only used for some exacerbations when it is likely a bacterial infection is present. Even if a flare-up is caused by a bacterial infection, antibiotics may not always help and may cause side effects. It is important to discuss the potential benefits and harms of using antibiotics with your healthcare provider.
If antibiotics are required, it is important to take them as prescribed and to complete the whole prescription. Antibiotics are more likely to be prescribed if your flare-up is severe enough to need a hospital stay.
If your symptoms do not improve or they get worse despite treatment, or after following your COPD action plan, contact your healthcare provider as soon as possible.
You can also speak to a registered nurse for advice on what to do next by calling:
- Healthdirect (1800 022 222) in New South Wales, South Australia, Western Australia, Tasmania, Northern Territory and Australian Capital Territory
- NURSE-ON-CALL line (1300 60 60 24) in Victoria
- 13-HEALTH line (on 13 43 25 84) in Queensland.
If you feel very unwell and cannot get in touch with your usual healthcare provider, visit your local hospital emergency department or call 000. Information about when to seek help should be in your COPD action plan.
See our list of related resources for this quality statement
A person experiencing hypoxaemia during a COPD exacerbation receives controlled oxygen therapy, ensuring that oxygen saturation levels are maintained between 88% and 92%. Non-invasive ventilation is considered in anyone with hypercapnic respiratory failure with acidosis.
What this means for you
Experiencing a flare-up of your COPD symptoms (called an exacerbation) can make it more difficult for you to breathe. For some people, this can reduce the amount of oxygen in the blood. This is called hypoxaemia.
If the oxygen levels in your blood are too low, your healthcare provider will recommend that you receive oxygen therapy. This may occur if you are being transferred in an ambulance to the hospital, or while being cared for at the hospital.
Your healthcare provider will prescribe an appropriate amount of oxygen to make sure that you have the right level of oxygen in your blood (for most people with COPD, this is between 88% and 92%). In some people, too much oxygen in the blood can lead to high levels of carbon dioxide, which can be dangerous. It is important to tell members of your healthcare team, including ambulance officers, that you have COPD, and show them your COPD action plan (see Quality statement 3). Also tell them if you have a history of high carbon dioxide levels (sometimes referred to as being a ‘carbon dioxide retainer’) or have been receiving treatment with oxygen at home.
During an exacerbation, sometimes carbon dioxide can build up in the body because of breathing problems. If this happens in hospital, your healthcare provider may recommend a treatment called ‘non‑invasive ventilation’. This involves wearing a tight-fitting mask connected to a machine that can help you to breathe more easily.
A very small number of people may require more support with their breathing, and their healthcare provider may recommend a treatment called ‘mechanical ventilation’. This treatment involves going to the intensive care unit and having a tube put into your windpipe to deliver oxygen into the lungs. It is only provided in emergency settings.
Your healthcare provider will discuss the potential benefits and risks of treatment with you and your support people so you can make an informed decision about oxygen and assisted ventilation.
See our list of related resources for this quality statement
A person who has been hospitalised for a COPD exacerbation is offered a follow-up assessment within seven days of discharge, facilitated by timely and effective communication between their hospital and primary care providers.
What this means for you
If you have been in hospital because of a flare-up of your COPD symptoms, it is important to see your usual healthcare provider (for example, general practitioner or nurse practitioner) after you leave the hospital. The appointment should occur within seven days of leaving the hospital, but it can be sooner, depending on your needs.
If you are unable to see your healthcare provider face-to-face, you may be able to have an appointment via telephone or online (this is sometimes called a telehealth appointment). If you need assistance arranging an appointment, speak to your healthcare team before you leave hospital.
The hospital will provide you and your healthcare provider with a summary of your hospital stay. This is called a ‘discharge summary’ and it should include information about reasons for your hospital visit, tests you had while in hospital, any medicines you were prescribed and how and when you should take your medicines. It will also include when you should have a follow-up appointment with your general practitioner or other usual healthcare provider.
Someone from your healthcare team at the hospital should go through the discharge summary with you (or with your family or support people) before you leave hospital, so you know what to do when you go home. The discharge summary should be given to you as a written document before you leave the hospital, added to your personal electronic medical record (known as My Health Record) with your permission, and sent to your healthcare provider when you leave the hospital.
During your follow-up appointment, your general practitioner or usual healthcare provider should:
- Check how you are feeling and your response to any new medicines prescribed in hospital
- Discuss what may have caused your flare-up, and the results of tests completed in hospital
- Discuss ways to reduce the chance of another flare-up (for example, quitting smoking or having recommended vaccinations)
- Review your medicines and check if any changes to your medicines are needed, including checking and correcting your inhaler technique
- Check on your other health conditions and their treatments if relevant
- Check that you have enough supply of your medicines and whether you need any new prescriptions
- Follow up on referrals that were given to you during your hospital stay (for example, for pulmonary rehabilitation, or to see a lung specialist or other healthcare provider)
- Discuss the benefits of a pulmonary rehabilitation program and provide a referral if not already completed in hospital (see Quality statement 5)
- Discuss the need to involve additional healthcare providers in your care if relevant (for example, dietitian, speech pathologist or psychologist).
Your healthcare provider should then update your self‑management plan and COPD action plan (see Quality statement 3) based on the changes that you have discussed, and provide you with a new copy.
See our list of related resources for this quality statement
A person with COPD is offered symptom support and palliative care that meets their individual needs and preferences.
What this means for you
COPD is a long-term condition and symptoms often become worse over time. This can affect people in different ways, and at different times you may need support for physical, emotional, spiritual and practical issues.
Palliative care is care that aims to help people live well and improve their quality of life when they have a severe illness or symptoms that are hard to manage. It is not just for care at the end of life or for people with cancer. For example, care to help relieve COPD symptoms such as breathlessness or fatigue may be part of palliative care.
Palliative care can help address things you may be worried about. It can also help you and your support people make decisions about your health care. This includes making decisions about the health care you would, or would not, like to receive if you were to become very unwell in the future. This is called ‘advance care planning’. See Advance care planning explained on the Advance Care Planning Australia website for more information.
Because of its benefits, palliative care may be offered at any stage in the management of your condition. Your healthcare provider should discuss your palliative care needs with you if you have been to hospital with a flare-up of your COPD symptoms.
Importantly, you can receive usual treatment for COPD and palliative care at the same time. The care offered will be based on your individual needs, and can include things such as:
- Strategies to relieve symptoms (for example, breathlessness, fatigue, anxiety or pain)
- Medicine management
- Dietary advice and support
- Resources to support your care and mobility at home
- Referrals to respite care services
- Discussing and planning your preferences for your future health care (advance care planning)
- Support for family members and carers.
For many people with COPD, palliative care can be provided by the usual members of their healthcare team such as general practitioners, lung specialists, nurses, nurse practitioners, pharmacists, physiotherapists and psychologists. Some people with more complex symptoms or needs may benefit from a referral to a specialist palliative care service. It is important to discuss symptom management and palliative care options with the healthcare providers involved in your care, including when you are admitted to hospital for a flare-up of your COPD symptoms.
See our list of related resources for this quality statement