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Coping with End-Stage COPD

COPD

Chronic obstructive pulmonary disease (COPD) is a progressive condition that affects your ability to breathe well. It encompasses several medical conditions, including emphysema and chronic bronchitis. In addition to a reduced ability to breathe in and out fully, symptoms can include a chronic cough and increased sputum production.

Learn more: Everything you need to know about chronic obstructive pulmonary disease (COPD) »

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Signs and symptoms

Signs and symptoms of end-stage COPD

End-stage COPD is marked by severe shortness of breath (dyspnea), even when at rest. At this stage, your medications typically don’t work as well as they had in the past. Everyday tasks will leave you more breathless. End-stage COPD also means increased visits to the emergency department or hospitalizations for breathing complications, lung infections, or respiratory failure.

Right-sided heart failure is also common in end-stage COPD. You may experience an accelerated resting heart rate (tachycardia) of more than 100 beats per minute. Another symptom of end-stage COPD is ongoing weight loss.

Daily living

Living with end-stage COPD

Quitting smoking is one of the best things you can do at any stage of COPD. Your doctor can prescribe medications to treat COPD that may also relieve your symptoms.

These include bronchodilators, which help to widen your airways.

There are two types of bronchodilators. The short-acting or “rescue” bronchodilator is used for the sudden onset of asthma or shortness of breath. The long-acting bronchodilator 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. 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.

If you have a difficult time using an inhaler, adding a spacer can help. A spacer is a small plastic tube that attaches to your inhaler. Spraying your inhaler medication into the spacer allows for your medication to mist and fill the spacer prior to breathing it in. Using a spacer helps more medicine get into your lungs and less medicine is trapped in the back of your throat.

A nebulizer turns a liquid medicine into a continuous mist that you inhale for around 5 to 10 minutes at a time through a mask. The mask covers your nose and mouth and is attached to a tube connected to your nebulizer machine.

Supplemental oxygen is often needed if you have end-stage COPD (stage 4).

The use of any of these treatments is likely to increase significantly between mild COPD (stage 1) and stage 4.

Read more: A list of COPD medications to help relieve your symptoms »

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Diet and exercise

Diet and exercise

You may also benefit from exercise training programs. Therapists for these programs can teach you breathing techniques that reduce how hard you have to work to breathe. This step won’t extend your life, but it’ll help enhance your quality of life.

You may be encouraged to eat small, high-protein meals at each sitting, such as protein shakes. A high-protein diet can enhance your well-being and prevent excess weight loss.

Weather preparation

Prepare for the weather

In addition to taking these steps, you should avoid or minimize known COPD triggers. For example, you may have greater difficulty breathing during extreme weather conditions, such as high heat and humidity or cold, dry temperatures.

Although you can’t change the weather, you can be prepared by limiting the time you spend outdoors during temperature extremes. Other steps you can take include the following:

  • Always keeping an emergency inhaler with you but not in your car. Many inhalers operate most effectively when kept at temperatures between 59°F (15°C) and 86°F (30°C).
  • Wearing a scarf or mask when going outside in cold temperatures can warm the air you breathe in.
  • Avoid going outdoors on days when the air quality is poor and smog and pollution levels are high. The American Lung Association offers an app called State of the Air that’s available from Google Play and iTunes. The Environmental Protection Agency (EPA) also updates air quality levels on Airnow.gov.
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Palliative care

Palliative care

Palliative care or hospice care can greatly enhance your life when you’re living with end-stage COPD. A common misconception about palliative care is that it indicates someone will be dying soon. This isn’t the case.

Instead, palliative care involves identifying treatments that can enhance your quality of life and help caregivers provide you with more effective care. The main goal of palliative and hospice 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 as much as possible.

You can ask your doctor and insurance company for information about palliative care options.

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Classifying COPD

Stages (or grades) of COPD

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

Various organizations may define each stage differently. However, most of their classifications are based in part on a lung function test known as the FEV1 test. This is your forced expiratory volume in one second. The result of this test is expressed as a percentage and measures 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.

According to the Lung Institute, the criteria for each COPD stage (or grade) are as follows:

Stage or grade Name FEV1 (%)
1 mild COPD ≥ 80
2 moderate COPD 50 to 79
3 severe COPD 30 to 49
4 very severe COPD or end-stage COPD < 30
 

Stages 1 to 3 may or may not be accompanied by chronic symptoms, such as excess sputum, noticeable shortness of breath with exertion, and chronic cough.

In addition, new Global Initiative for Chronic Obstructive Lung Disease (GOLD) guidelines further categorize people with COPD into groups labeled A, B, C, or D. The groups are defined by the seriousness of problems such as dyspnea, fatigue, and interference with daily living, as well as exacerbations. Exacerbations are periods when symptoms get noticeably worse. Exacerbation symptoms can include a worsening cough, increased yellow or green mucus production, more wheezing, and lower oxygen levels.

Learn more: COPD symptoms »

Groups A and B include people who’ve had no exacerbations in the past year or only a minor one that didn’t require hospitalization. Mild to moderate dyspnea and other symptoms would put you in Group A, while more serious dyspnea and symptoms would place you in Group B.

Groups C and D indicate that you’ve either had at least one exacerbation that required hospital admission in the past year or at least two exacerbations that did or didn’t require hospitalization. Milder breathing difficulty and symptoms puts you in Group C, while having more breathing troubles means a Group D designation. People with a stage 4, Group D label have the most serious outlook.

Read more: COPD life expectancy and prognosis »

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

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Outlook

Outlook

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. Less than half of people with end-stage COPD and an FEV1 under 35 percent may not survive beyond four years.

However, the FEV1 test isn’t the only factor that affects your outlook. Your doctor will also take into account the following factors when determining your prognosis:

Weight

Although being overweight can make breathing more difficult if you have COPD, people with end-stage COPD are often underweight. This is because even the act of eating can cause you to become too winded. At this stage, 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.

Shortness of breath with activity

Shortness of breath with activity is the degree to which you get short of breath when walking. It can help determine the severity of your COPD.

Distance walked in six minutes

The farther you can walk in six minutes, the better outcome you will have with COPD.

Age

The outlook is poorer for people with COPD who are older than 70 years than it is for people with COPD who are younger than 70 years.

Proximity to air pollution

Exposure to air pollution and secondhand smoke can further damage your lungs and airways. Also, it’s never too late to quit smoking.

Frequency of doctor’s visits

Your prognosis is likely to be better if you follow through with all of your scheduled doctor’s visits 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.

Coping

Coping

Dealing with COPD can be challenging enough without feeling lonely and scared about this disease. Even if your caregiver and the people closest to you are supportive and encouraging, you may still benefit from spending time with others who have COPD. Hearing from someone going through the same situation may be inspiring and helpful. They may be able to provide some valuable insight, such as feedback about various medications you’re using and what to expect.

Maintaining your quality of life is very important at this stage. There are lifestyle steps you can take, such as checking air quality and practicing breathing exercises. However, when your COPD has progressed, you may benefit from additional palliative or hospice care.

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Q&A

Q&A: Humidifiers

  • I’m interested in getting a humidifier for my COPD. Would this help or hurt my symptoms?
  • It depends.

    Just as every person with COPD is different, so is their reaction to humidity. Some people find that humidity causes flares while others don’t.

    Overall, winter months are most likely to be the time when humidified air may be useful. Experts recommend keeping indoor humidity at around 40 percent. If you don’t have a built-in humidifier system with your furnace, you may benefit from a standalone humidifier when temperatures drop. A hygrometer can keep track of indoor humidity levels.

    However, there are several potential negatives to using a humidifier. Besides possibly making your COPD symptoms worse, humidifiers require regular cleaning and maintenance in order to avoid the buildup of mold. Humidified air also encourages the growth of dust mites, possibly making allergies worse.

    Bottom line, it’s best to talk with your doctor before using a humidifier when you have COPD so that your individual needs are best met.

    - Judith Marcin, MD
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