An Overview of End-Stage COPD

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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. 

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:

  • 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 are likely to have low oxygen saturation levels and you will probably be prescribed supplemental oxygen. If you take a break from your oxygen supplementation, you may notice your symptoms worsening.

Complications

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.

Diagnosis

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.

Treatment

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 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.

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

Updated 2020 guidelines recommend that people with moderate or severe COPD who experience shortness of breath and/or exercise intolerance receive a combination 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.

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.

Glucocorticoids

Glucocorticoids (or "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, high blood sugar, infections, and gastrointestinal bleeding.

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. If a person has not had a COPD exacerbation for a period of one year, and does not have asthma or a high eosinophil count, it's recommended that inhaled glucocorticoids be discontinued.

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.

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

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 may be suggested because malnutrition is a common complication in end-stage COPD and 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.

Complementary Therapies

Complementary and alternative therapy such as relaxation and visualization techniques, therapeutic massage, and music therapy with live instruments, CD, or radio 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 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.
  • Review your medications with your doctor frequently: Making sure you receive the optimal combination of medications can do a lot to maintain or even improve your quality of life. That said, research is ongoing, and guidelines as to the most effective therapies can change. Going over your medications often with your doctor can ensure you are receiving the most up to date and effective therapies.

End-of-Life Issues

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 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, 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.

Advanced directives are documents that allow you to explain your wishes regarding end-of-life care so that your loved ones will know what you want when it comes to 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 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. 

A Word From Verywell

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.

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