Coping with End-Stage COPD

End-stage COPD is the most severe stage of COPD. It’s also called very severe COPD. During this stage, symptoms such as coughing and shortness of breath worsen and can become life threatening.

COPD has four stages, and your airflow becomes more limited with each passing stage. The stages of COPD are:

• mild
• moderate
• severe
• very severe

Your doctor may use guidelines from the Global Initiative for Chronic Obstructive Lung Disease (GOLD) to help determine which stage you’re in.

The classifications are based on a number of factors, including:

• results of a spirometry test, which measures lung function
• the severity of your symptoms
• the frequency and severity of exacerbations (times when COPD suddenly gets worse)

A spirometry test assesses your lung function by measuring how much air you can breathe in and out of your lungs.

The result of this test is expressed as a percentage. It measures your forced expiratory volume (FEV1), which is how much air you can let out during the first second of a forced breath. It’s compared to what is expected from healthy lungs of similar age.

The GOLD criteria uses FEV1 results to grade COPD as follows:

In addition to FEV1 results, the 2023 GOLD guidelines use symptom severity and number of exacerbations to further categorize people with COPD into groups labeled A, B, or E.

The groups are defined by the seriousness of symptoms, such as:

• shortness of breath (dyspnea)
• excess mucus (phlegm)
• cough
• fatigue
• interference with daily living

Exacerbations are periods when symptoms get noticeably worse. Exacerbation symptoms can include:

• worsening cough
• increased yellow or green mucus production
• more wheezing
• lower oxygen levels in the bloodstream

The groups are defined as:

• Group A: This group has a GOLD grade 1 or 2 and includes minimal to mild symptoms. People in group A have not had an exacerbation in the past year or just had one that did not lead to hospitalization.
• Group B: This group has a GOLD grade 1 or 2 and includes more serious dyspnea and other symptoms. People in group B have not had an exacerbation in the past year or had one mild exacerbation that did not require hospitalization.
• Group E: The 2023 GOLD guidelines merged groups previously called C and D into one group E to emphasize the importance of exacerbations. People in Group E have a GOLD grade 3 or 4 and experience severe symptoms. They have had two or more moderate exacerbations or one or more exacerbations that required hospitalization.

If you have end-stage COPD, you have very little lung function left. The lack of oxygen can start to affect your heart and circulatory system. A COPD exacerbation during this stage could be life threatening.

End-stage COPD is marked by severe shortness of breath, even when at rest. At this stage, medications typically don’t work as well as they may have in the past. Everyday tasks will leave you more breathless.

Other symptoms you experienced in earlier stages of COPD may also worsen. These include:

• cough
• wheezing
• sputum production
• chest tightness or heaviness
• fatigue

Additional symptoms and complications of end-stage COPD include:

• increased visits to the emergency department or hospitalizations for breathing complications, lung infections, or respiratory failure
• pulmonary hypertension, which can lead to right-sided heart failure
• an accelerated resting heart rate (tachycardia) of more than 100 beats per minute
• ongoing weight loss
• loss of muscle mass

In end-stage COPD, you’ll likely need supplemental oxygen to breathe, and you may not be able to complete activities of daily living without becoming very winded and tired. Sudden worsening of COPD at this stage can be life threatening.

The outlook for end-stage COPD varies from person to person. Your outlook may depend on a number of factors, such as:

• Weight: In end-stage COPD, even the act of eating can cause you to become too winded. Additionally, your body uses up a lot of energy just to keep up with breathing. This can result in extreme weight loss that affects your overall health and outlook.
• Shortness of breath with activity: This is the degree to which you get short of breath when walking or doing other physical activities. It can help determine the severity of your COPD.
• Distance you can walk in 6 minutes: The farther you can walk in 6 minutes, the better outcome you’ll likely have with COPD.
• Age: With age, COPD may progress in severity. The outlook tends to become poorer with passing years, especially in seniors.
• Proximity to air pollution: Exposure to air pollution and secondhand tobacco smoke can further damage your lungs and airways.
• Smoking: According to a 2020 study, smoking is the leading risk factor for disability and death due to COPD globally for men.
• Frequency of doctor visits: Your outlook is likely to be better if you follow your treatment plan, see your doctor regularly, and keep your doctor up to date on any changes in your symptoms or condition. You should make monitoring your lung symptoms and function a top priority.

The BODE index is one tool your doctor may use to help determine your outlook. It measures:

• body mass index (BMI)
• airway obstruction
• dyspnea
• exercise capacity

Treatments for COPD can’t reverse damage that’s already been done, but they can be used to try to slow down the progression of the condition.

Treatment options for end-stage COPD are similar to those used in earlier stages of the condition. These may include:

• medications
• pulmonary rehabilitation
• oxygen therapy

The use of any of these treatments is likely to increase significantly from mild (stage 1) COPD to end-stage COPD.

Medications used to treat COPD and relieve your symptoms include bronchodilators, which help to widen your airways.

There are two types of bronchodilators:

• Short-acting (rescue) bronchodilators are used for the sudden onset of shortness of breath.
• Long-acting bronchodilators can be used every day to help control symptoms.

Glucocorticosteroids may help reduce inflammation. These medications can be delivered to your airways and lungs with an inhaler or a nebulizer. A glucocorticosteroid is commonly given in combination with a long-acting bronchodilator for treatment of COPD.

An inhaler is a pocket-sized portable device, while a nebulizer is larger and meant primarily for home use. While an inhaler is easier to carry around with you, it’s sometimes harder to use correctly.

Using a spacer with your inhaler can help ensure the medication gets deep into your lungs, where it works best. A spacer is a small plastic tube that attaches to your inhaler. The medication moves into the spacer, where it becomes a fine mist that can be inhaled more easily and more deeply into the lungs.

A nebulizer is a machine that turns a liquid medication into a continuous mist that you inhale for around 5 to 10 minutes at a time through a mask or mouthpiece connected by tube to the machine.

Pulmonary rehabilitation is a medical program that can help people with COPD and other lung diseases breathe easier. It can help people:

• improve lung function
• ease symptoms
• reduce the risk of hospitalization
• improve overall quality of life

An individualized pulmonary rehab program may include:

• COPD management education
• exercise training
• breathing techniques
• social support
• nutrition education
• counseling

Supplemental oxygen is typically needed if you have end-stage COPD. It involves receiving oxygen to increase the amount of oxygen that flows into your lungs. This can help you breathe easier.

You may receive oxygen through a nasal cannula or a face mask.

Surgery for advanced COPD

You may need surgery if you have very severe COPD or if other treatments aren’t working.

There are several types of surgery that may be used to treat COPD. These include:

• Bullectomy: During this procedure, a surgeon removes one or more bullae from the lungs. Bullae are large, damaged air sacs that can expand and stop air from moving in and out of the lungs.
• Lung volume reduction surgery: A surgeon removes the most diseased portion of the upper lung tissue. This allows the healthier part of the lungs to work better. It won’t cure COPD, but can help make it easier to breathe, increase lung capacity, and improve quality of life.
• Lung transplant: A transplant involves replacing a damaged lung with a healthy lung from a donor. A lung transplant may be an option for people with end-stage COPD if lung damage can’t be repaired, if they’ve had three or more severe exacerbations within the past year, or if they aren’t a candidate for lung volume reduction surgery.

Speak with your doctor about the risks and benefits of each surgery and whether you may be a candidate.

In addition to receiving treatment, there are lifestyle changes you can make to help manage the symptoms of end-stage COPD.

These may include:

• Avoiding smoking: If you smoke tobacco products, quitting is one of the best things you can do at any stage of COPD. Talk with your doctor about smoking cessation programs that may help.
• Exercising: Talk with your doctor about how much exercise you should get and which types may be right for you. You may also benefit from exercise training programs where you’ll learn breathing techniques that reduce how hard you have to work to breathe.
• Eating a balanced diet: You may be encouraged to eat small, high protein meals at each sitting. A high protein diet can improve your well-being and prevent excess weight loss. A doctor or registered dietitian can help you create a meal plan that provides the nutrients you need.
• Avoiding triggers: Triggers are things that can worsen your COPD symptoms. They may include smoke, fumes, chemicals and sprays, allergens, air pollution, and infections. Keep track of your triggers and create a plan to avoid or limit your exposure to them.
• Preparing for extreme weather: You may have greater difficulty breathing during extreme weather conditions, such as high heat and humidity or cold, dry temperatures. Limit the time you spend outdoors during extreme temperatures, wear a scarf or mask when it’s cold outside, and avoid going outside when air quality is poor.
• Conserving energy: If you have COPD, daily tasks can leave you feeling fatigued and breathless. Pacing yourself, prioritizing your tasks, resting when needed, and practicing breathing techniques can help you conserve your energy.
• Finding support: Connecting with others who understand what it’s like to live with COPD can help you manage the physical and emotional challenges of COPD. Consider joining a virtual or in-person support group.

Maintaining your quality of life is very important during end-stage COPD. There are lifestyle steps you can take, such as checking air quality and practicing breathing exercises. When your COPD has progressed in severity, however, you may benefit from additional palliative care.

A common misconception about palliative care is that it’s for someone who will be passing away soon. This isn’t always the case. Palliative care can be beneficial and enhance quality of life at any stage of COPD, including end-stage COPD.

Palliative care involves identifying treatments that can help you manage the physical and emotional symptoms of COPD and help caregivers provide you with more effective care. The main goal of palliative care is to ease your pain and control your symptoms as much as possible.

You’ll work with a team of doctors and nurses in planning your treatment goals and caring for your physical and emotional health.

Ask your doctor and insurance company for information about palliative care options.

COPD is a progressive condition that currently has no cure. At some point, you may need to begin preparing for end of life. Although this can be hard to think about or discuss, it’s important to know what you may expect and to make decisions about practical matters regarding your care.

Talk with your loved ones and healthcare team about your medical choices for your end-of-life care. Having a plan can help ensure your wishes are followed and ease the burden on family members and loved ones.

You may wish to complete an advance directive. This is a legal document that provides instructions for your medical care in case you become severely ill or unable to communicate your decisions.

Common types of advance directives include:

• Living will: This document outlines which treatments you wish to receive and which you want to avoid.
• Durable power of attorney for healthcare: This document names the person who can make healthcare decisions for you if you are unable to make them yourself.

When planning for end-of-life care, here are some questions you may wish to consider:

• Do I want to receive end-of-life care at home, in a hospital, or in hospice?
• Is there a certain point when I want to stop receiving treatment?
• Do I want life-saving measures taken if I stop breathing or my heart stops?
• Who do I want to make healthcare and treatment decisions for me if I’m no longer able to?
• Have I updated my will?
• What funeral arrangements do I want?

Caring for a loved one with end-stage COPD can be physically and emotionally challenging. These tips can help you support your loved one:

• Help them breathe easier: Dyspnea can become worse during end-stage COPD. Elevating your loved one’s head, opening windows, and using a humidifier are some ways you can help make it easier for them to breathe.
• Manage loss of appetite: Encourage your loved one to eat small amounts of food they enjoy, but don’t force them to eat. You may also assist feeding them if feeding themselves causes shortness of breath or fatigue.
• Ease pain: If your loved one is experiencing pain, talk with a doctor about medications that can help relieve their discomfort.
• Find ways to conserve energy: Assistive devices, such as bedside commodes, shower chairs, and grabbers, can help your loved one perform daily tasks with less energy.
• Address emotional needs: Facing end-stage COPD can cause emotional distress. Be there for your loved one and let them openly express what they’re feeling. You may also encourage them to speak with a therapist, counselor, or spiritual advisor.
• Look into palliative or hospice care: The physical and emotional symptoms of end-stage COPD can be difficult to manage. You or your loved one may want to seek additional help from palliative care specialists or hospice providers.
• Prepare for emergencies: Learn to recognize the signs of a COPD flare or emergency and have a plan for what to do if these occur.
• Plan for end-of-life: Talk with your loved one about their preferences for their end-of-life care. You can help them complete advance directives to ensure their wishes are followed.
• Ask for help: Caring for a loved one with COPD can take a physical and emotional toll on caregivers, too. If you feel overwhelmed or just need a break, ask for help. It may be helpful to suggest specific tasks people can assist you with.

End-stage COPD is the most severe stage of COPD. During this stage, you may experience worsening dyspnea, coughing, sputum production, and fatigue.

Treatments such as medications, oxygen therapy, and surgery may help ease symptoms and slow the progression of COPD. Making lifestyle changes, such as avoiding smoking, can also help.

There’s currently no cure for COPD, and the outlook varies from person to person. Seeking palliative or hospice care can provide comfort and help you manage symptoms of end-stage COPD.

You may also wish to create an advance directive that states your decisions regarding your medical care and treatment in the event you become seriously ill.