End-Stage COPD Symptoms and Prognosis

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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. 

This article defines end-stage COPD and explains how it is diagnosed. It presents treatment options commonly used in end-stage COPD and tips for coping with end-stage concerns.

Types of Chronic Obstructive Pulmonary Diseases (COPD)

Illustration by Emily Roberts for Verywell Health

Symptoms

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:

How Is End-Stage COPD Diagnosed?

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 is mild COPD. Lung function is starting to decline but you may not notice it.
  • Stage II is moderate COPD. Symptoms progress, with shortness of breath developing upon exertion.
  • Stage III is severe COPD. Shortness of breath becomes worse and COPD exacerbations are common.
  • Stage IV is 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%.

Other Tests to Measure COPD Stages

The Global Initiative for Obstructive Lung Disease (GOLD) defines four stages of COPD, with Stage IV as its end stage. It was updated in 2017. Other systems to evaluate COPD include:

  • ADO scores, which measure age, dyspnea (shortness of breath), and obstruction
  • DOSE scores, used to measure dyspnea, obstruction, smoking, and exacerbation
  • BODE assessment for body mass index, obstruction, dyspnea, and exercise 
  • Spirometry, often used to measure lung function

A 12-year study of 490 people in Sweden, published in 2021, looked at these methods and found the ADO and the lung function assessments were most accurate in predicting life expectancy and mortality.

How Long Can You Live With End-Stage COPD?

Research suggests that people diagnosed with COPD lose an average of six years in life expectancy when compared with their counterparts who don't have COPD. But other conditions, such as heart disease, actually accounted for two-thirds of these deaths.

The individual prognosis for someone with end-stage COPD will depend on a number of factors that influence COPD life expectancy. They include:

  • Age
  • Underlying health conditions
  • Smoking status
  • Quality and compliance with treatment
  • Fitness level
  • Nutritional health

Some people in end-stage COPD 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 also can develop complications of lung disease that include:

  • Pneumonia
  • Heart failure
  • 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.

Treatment

Often, treatment options haven't been exhausted when diagnosed with end-stage COPD. There may be aspects of your health that can be managed to help make you feel more comfortable and to avoid complications of your pulmonary condition.

For example, you are likely to have low oxygen saturation levels (needed oxygen in your blood) and you will probably be prescribed supplemental oxygen. If you take a break from your oxygen supplementation, you may notice your symptoms worsening.

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

If you're facing a diagnosis of end-stage COPD, your healthcare provider may prescribe the following treatments:

Pulmonary Rehabilitation

Pulmonary rehabilitation has been found to be beneficial for people with COPD at all stages of the disease. A 2017 study found that for people with severe COPD, pulmonary rehabilitation improved symptoms for 92% of the participants and resulted in 54% fewer days of hospitalization.

Nutritional Counseling

Nutrition counseling can help with malnutrition, a common complication in end-stage COPD that increases the risk of death. A counselor who specializes in caring for people with COPD can also help with tips that make eating easier and more enjoyable amidst shortness of breath.

Bronchodilators

American Thoracic Society guidelines recommend that people with moderate or severe COPD who experience shortness of breath and/or exercise intolerance receive a combination of two different types of long-acting bronchodilators rather than a single long-acting bronchodilator alone.

This includes a long-acting beta-agonist (LABA) medication as well as a long-acting anticholinergic/muscarinic antagonist (LAMA). Some combination inhalers include both of these categories of medication in a single inhaler. Short-acting bronchodilators may also be used for symptoms.

Glucocorticoids

Glucocorticoids (steroids) may be used either via inhalation, or in an oral or intravenous form, and guidelines for their use have recently changed.

Oral glucocorticoids (such as prednisone) were once widely prescribed but should, in general, be avoided on a continual basis. (They may still be needed for exacerbations or during hospitalizations.) These medications were not found to affect shortness of breath, the risk of exacerbations, or survival, but did lead to a number of side effects such as high blood pressure and infection.

Inhaled glucocorticoids may or may not be recommended. While they reduce the risk of exacerbations, they also increase the risk a person will develop pneumonia. They are likely helpful for people who also have asthma or who have one or more COPD exacerbations each year.

Supplemental Oxygen

Oxygen reduces breathlessness caused by activity and at rest. Not only can this improve symptoms, but oxygen may allow some people to engage in other activities (such as rehabilitation and physical activity) that improve quality of life as well.

Opiates

In the past, opiates were often avoided as some studies showed they may have serious side effects and may not benefit everyone. The latest guidelines, however, encourage the use of opiate medications for people who continue to have significant shortness of breath despite maximizing other therapies.

This recommendation came about due to studies showing these medications were beneficial in improving quality of life, while not leading to an increased risk of falls/accidents or overdoses.

Noninvasive Positive Pressure Ventilation (NIPPV)

Noninvasive ventilation may lessen carbon dioxide retention and improve shortness of breath, but it's not routinely recommended.

Surgery

Various surgical procedures may be needed in treating end-stage COPD in some people. These procedures can include:

  • Bullectomy, a surgery to reduce the amount of air trapped in the lungs due to emphysema or bronchiectasis
  • Lung volume reduction surgery in emphysema, to remove the most damaged lung tissue and allow for improved breathing overall
  • Bronchoscopic lung volume reduction (BLVR), with valves placed to assist with air flow in people with certain features of severe COPD

Lung transplant, in eligible candidates with severe COPD, also may be a surgical treatment option.

Complementary Therapies

Complementary and alternative therapy such as relaxation and visualization techniques, therapeutic massage, and music therapy with live instruments or recorded music can help soothe symptoms like shortness of breath.

Coping

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

Lifestyle Changes

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: After a diagnosis of COPD, exercise has a great impact on your life with some studies suggesting its ability to reverse the loss of life expectancy. Consider a daily exercise program; even light walking (with your oxygen supply) several times per week can be beneficial.
  • 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.
  • Review your medications with your healthcare provider frequently: Make sure you receive the optimal combination of medications to maintain or even improve your quality of life. Research is ongoing, and guidelines as to the most effective therapies can change.

End-of-Life Issues

If your healthcare providers 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 a 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, 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.

Advanced directives are documents that allow you to explain your wishes regarding end-of-life care. Your loved ones will then know what you want in terms of issues like resuscitation, feeding tubes, and ventilator support if you are unable to express your wishes at a later time.

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 muscle wasting known as 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. 

Summary

End-stage COPD is diagnosed by a healthcare provider who evaluates your lung function. Symptoms usually include increasing shortness of breath, fatigue and difficulty with mobility, trouble sleeping, and chronic cough.

While COPD is a progressive disease, there are a number of treatments available to keep you as healthy as possible for as long as possible. Lifestyle changes, including exercise and smoking cessation, also will help as you work with your care team to develop a treatment plan.

On average, a person with COPD will lose six years of life expectancy but may have many years yet to live. Your prognosis will depend on many factors and there is no way to predict exactly how long you will live. Be sure to make decisions about your health and treatment options with your providers to ensure your best quality of life.

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By Deborah Leader, RN
 Deborah Leader RN, PHN, is a registered nurse and medical writer who focuses on COPD.