Handbook for Mortals : Learning about specific illnesses : Concerns about lung disease

Lung disease is also known as chronic obstructive lung disease (COPD), or as emphysema or chronic bronchitis. They are progressive and irreversible diseases that affect the ability to breathe in oxygen and breathe out carbon dioxide. Common symptoms of lung disease are:

Picture of a dying man in bed with a breathing mask being helped by a nurse

Often, someone with lung disease will experience these symptoms for ten years or more before they become so bad that activities of daily living become difficult. Most people with lung disease find their difficulty breathing to be the most troublesome symptom. As the disease becomes severe, walking even short distances may be impossible, and breathing may become difficult when resting or lying flat. While there is no cure for the underlying disease, there are various methods available to treat shortness of breath.

Often, you will have oxygen at home, which can be used most of the time and as needed to help alleviate the difficulty breathing. The amount of time you spend using oxygen can be increased as the disease progresses. Various drugs dilate, or open, the air passages and make breathing easier. People with lung disease often find these drugs give temporary relief to their shortness of breath, loosening mucus and aiding in the production of sputum, which relieves blockage of the air passages. These drugs do have side effects and may not be right for everyone with lung disease. Also, family caregivers can be taught a technique known as chest physiotherapy, in which they tap on the back of the person and turn them in specific positions to help bring up phlegm and clear the lungs to help prevent bronchitis and pneumonia.

As the lung disease becomes more advanced, you might not have enough oxygen circulating, a condition that doctors call hypoxia. Also, you might not blow out enough carbon dioxide as you breathe, which doctors call hypercapnia. Together, these two effects lead to the feeling of shortness of breath and sometimes to decreased alertness. These problems with breathing can lead to confusion, strange behavior, tremors in the hands, and seizures. Physicians can provide oxygen therapy, medications to reduce shortness of breath, anti-seizure medications, and medications to decrease the tremor.

People with lung disease can also become very anxious because of their difficulty breathing. This anxiety actually makes breathing more difficult. Medication can be given to reduce anxiety until the breathing improves, and meditation or guided imagery often helps you regain control.

People with lung disease may also experience pain. Often, pain is located in the chest as a result of coughing and excessive use of the chest muscles for breathing. At times, persons with lung disease cough so violently that they can fracture a rib. Medication or injections can usually ease these pains. There are times when it will be important to call your doctor right away. Alert your doctor if you:

These worsening or changing symptoms may be signs of a sudden worsening of lung disease. Especially during winter months, you will be more susceptible to infections, including bronchitis and pneumonia, which are the most common cause of setbacks. People whose lung disease has become worse because of infection can be treated with antibiotics and possibly a short course of steroids. Depending on your symptoms, you may benefit from hospitalization and aggressive treatments such as ventilator assistance. One alternative to intubation and ventilation that is available for people with lung disease who are very short of breath is called "CPAP," or continuous positive airway pressure. With this treatment, patients are fitted with a tight air mask and oxygen is given at a continuous pressure that forces the airways to stay open so the oxygen can get into the lungs. For some people, using the CPAP can be enough to get over a period of difficult breathing, and CPAP causes less discomfort than the ventilator. Some people use it every night.

Because of the nature of the disease, it is very difficult for physicians to tell how close people with lung disease are to death. Lung disease can usually involve several emergency episodes in which a person will be acutely ill, requiring "rescue" care to try to keep him alive. The underlying ability of the lungs to function will slowly but steadily decline, and the disease will eventually lead to death. Because of this certainty and the fact that you are usually in no condition to talk during a bad spell, you need to make plans with your family members and physicians about ventilator support. You should read the discussion about how to make decisions concerning various medical treatments.

People with lung disease and their family members need time to think about the illness, the prognosis, and options for treatments. If no discussion occurs until you are admitted to the hospital for an acute episode, you will be too ill and decision making will fall on your family or doctor. Not only does this place a large burden on the family or doctor, but it also can lead to decisions that you would not have wanted. Further, you should talk with your doctor and your family about your preferences for hospitalization and ventilators regularly, because you may well find that your priorities and preferences change.

You may choose not to use cardiopulmonary resuscitation (CPR - attempting to restart the person's heart if it stops beating). As the lungs become more and more damaged, the benefits of CPR and ventilation decrease until they are no longer beneficial at all, but you need to decide when you will have reached that point

A few people will get lung transplants, and some of those will work well for many years. For most, though, serious lung disease will eventually cause death. With the knowledge that lung disease has become advanced, and after multiple hospitalizations, you may determine that quality of life is of primary importance and decide to stay at home even when symptoms worsen. Health care providers can help with home care or hospice, with visiting nurses, oxygen and other breathing treatments at home, antibiotic therapy, and medication to relieve anxiety, pain, and difficulty breathing.

Both you and your family may find it better to be in the comfort of familiar surroundings with adequate treatment for relief of symptoms, knowing that the disease is not curable and hospitalization will not alter the ultimate prognosis. Alternatively, you may decide to try the hospital, but to stop if you are not doing well. Either way, plans need to be made with your family and physician to handle symptoms and events that may occur near death. For example, doctors can prescribe various treatments for shortness of breath; medication can be kept on hand for pain and to relieve anxiety and help with sleep; and drying agents can be prescribed if you have a lot of secretions.

Toward the very end of life, you may become less and less alert and may stop eating and drinking. You may become confused, may not recognize loved ones, and may become agitated and restless. Usually any such symptoms last only a short time, but you really need to have a doctor or hospice that knows how to handle shortness of breath as part of dying. They have to be willing to give opioids to relieve shortness of breath if that is what you need.

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Handbook for Mortals book cover Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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