An Overview of End-Stage COPD

End-stage chronic obstructive pulmonary disease (COPD) refers to being in the final stages of the disease. At this stage, you can expect to experience significant shortness of breath even when resting. Because of the degree of lung damage at this stage, you are at high risk for lung infections and respiratory failure.

You might associate the term "end-stage" with imminent death or grave disability that's leading up to death. Certainly, there is a higher risk of death at this stage, but you can survive for years with end-stage COPD. 

With advanced COPD, you can have symptoms all the time or almost all the time. And the effects of your disease at the end-stage will be so advanced that they will undeniably affect your day to day activities.

Symptoms you can experience with end-stage COPD include:

• Chronic cough and phlegm production
• Wheezing
• Severe shortness of breath even when at rest
• Difficulty eating
• Difficulty communicating due to shortness of breath
• Limited ability to get around
• Confusion or dizziness
• Fatigue
• Difficulty sleeping

You can develop complications of lung disease such as pneumonia, heart failure, and lower extremity edema (swelling of your legs). With end-stage COPD, you are likely to have limitations in your activity levels—which leads to a risk of blood clots, obesity, and pressure sores.

By definition, "end-stage" refers to the last phase in the course of a progressive disease. There are criteria that help define this stage.

According to the Global Initiative for Obstructive Lung Disease (GOLD), there are four stages of COPD:

• Stage I: Mild COPD. Lung function is starting to decline but you may not notice it.
• Stage II: Moderate COPD. Symptoms progress, with shortness of breath developing upon exertion.
• Stage III: Severe COPD. Shortness of breath becomes worse and COPD exacerbations are common.
• Stage IV: Very severe COPD. Quality of life is gravely impaired. COPD exacerbation can be life-threatening.

Each stage is defined according to the spirometry measurement of FEV1 (the volume of air breathed out in the first second after a forced exhalation). End-stage COPD is considered stage IV, or very severe COPD with an FEV1 of less than or equal to 30%.

A number of factors influence COPD life expectancy, including your smoking history, your level of dyspnea (shortness of breath), fitness level, and nutritional status. Some people in stage IV are still able to function reasonably well with few limitations. On the other hand, there are also many people at this stage who are very sick.

You may be worried that your doctors have done all they can do for you by the time you have been diagnosed with end-stage COPD. But there are still usually aspects of your health that can be managed to help make you feel more comfortable and to avoid complications of your pulmonary condition.

As the severity of your disease advances, the focus of your treatment may begin to shift to palliative care to relieve your COPD symptoms.

With that, if you're facing a diagnosis of end-stage COPD, your doctor may prescribe the following treatments:

• Bronchodilators: Both short-acting and long-acting bronchodilators are recommended if shortness of breath during regular activity is not relieved by short-acting bronchodilators alone.
• Opiates: Morphine, in particular, may significantly improve shortness of breath. However, some studies show that it may have serious side effects and that it might not benefit everyone.
• Inhaled glucocorticoids: These may be prescribed if you have an FEV1 less than 50 percent of the predicted value and a history of repeated COPD exacerbations.
• Supplemental oxygen: Oxygen reduces breathlessness caused by activity and at rest.
• Noninvasive positive pressure ventilation (NIPPV): Noninvasive ventilation may lessen carbon dioxide retention and improve shortness of breath, but it's not routinely recommended.
• Pulmonary rehabilitation: This has been proven to benefit at all stages of the disease.
• Nutritional counseling: This may be suggested because malnutrition is a common complication in end-stage COPD and increases the risk of death.
• Complementary therapies: Relaxation and visualization techniques, therapeutic massage, and music therapy with live instruments, CD, or radio can help soothe symptoms like shortness of breath.

Living with end-stage COPD can make you feel scared and isolated. Getting psychological and social support are important aspects of coping with the condition.

Even when you have already developed very advanced COPD, there are several lifestyle changes that you can incorporate to have the best outcome possible:

• Quit smoking: Smoking cessation is vital because smoking continues to cause lung changes at the late stages of COPD.
• Exercise: Besides that, if you're going to make one lifestyle change after a diagnosis of COPD that will have the greatest impact on your life, consider a daily exercise program. Even just light walking (with your oxygen supply) several times per week can be beneficial for preventing complications and elevating your mood.
• Eat healthfully: Good nutrition is essential because COPD causes your body to consume a lot of calories and can lead to malnutrition. Maintaining your nutrition will give you the energy you need to breathe and fight infection.
• Stay positive: Staying positive in the midst of a chronic illness diagnosis can be difficult, but can have a tremendous impact. It's all about developing some new coping mechanisms that will fit into your lifestyle.

If your doctors have discussed the chance that death is approaching due to your COPD, it's time to consider how you will manage end-of-life issues. Whether you or your loved one is taking charge of the decisions at this point, deciding how you will seek help during the end-of-life stage can make the process a bit easier for everyone involved. For example, you and your family may want to consider enlisting the help of hospice to guide you through this time.

When you have been diagnosed with late-stage COPD, be sure also to talk to your healthcare team and loved ones about your values and beliefs to help ensure that any end-of-life care is consistent with your wishes. For resources to help with planning end-of-life care, visit the National Healthcare Decisions Day website.

Symptom management is one of the most important aspects of end-of-life care because COPD symptoms often worsen in the final days—most notably, dyspnea and cough, pain, anxiety and depression, confusion, anorexia, and cachexia.

The end of life is a time of sadness and deep reflection for you and your loved ones. Remember that simple gestures like holding your loved one's hand and being present can provide immense comfort. 

Understanding end-stage COPD and what you can do to prevent yourself from getting there starts with taking small, daily steps toward improving your health. Work with your care team to develop a plan for healthy lifestyle shifts, such as quitting smoking, eating whole foods, and incorporating gentle exercise if possible.

If you have been diagnosed with end-stage COPD, it's important that you know that there is no way to predict exactly how long you will live. Making decisions about your health involves weighing the value of comfort and the expected benefits of each type of treatment. Loved ones can help you get through these hard times.