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It Takes My Breath Away END-STAGE COPD: Part 1 :A Case Study and an Overview of COPD


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Author Information

Constance Dahlin, APRN, BC, PCM, is Nurse Practitioner, Palliative Care Service, Massachusetts General Hospital, Boston, MA.

Address for correspondence: Constance Dahlin, APRN, BC, PCM, MGH Palliative Care Service, Founders House 601, 55 Fruit Street, Boston, MA 02115 (

The author of this article has no significant ties, financial or otherwise, to any company that might have an interest in the publication of this educational activity.

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End-stage chronic obstructive pulmonary disease (COPD) is a progressive illness without a cure. Because of its unpredictable trajectory, prognosis is difficult as, even in end-stage disease, patients may experience exacerbations and stabilization. There are many symptoms to manage until ultimately, respiratory function is severely compromised.

Home care nurses provide much of the care at home and can make a difference in promoting advanced care planning and optimal comfort. This article reviews COPD, the management of subsequent symptoms, and the role of the home care nurse.

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Case Example (Part 1)

Eunice is a 55-year-old married woman with COPD. She began smoking when she was 15 but stopped when she was 40. She spent many years working for a cleaning service. Ten years ago, she developed an intractable cough with increased sputum. At first, Eunice thought she just had a persistent cold. However, when it didn’t resolve after several months, she sought medical care. A chest x-ray revealed nothing, but her forced expiratory volume in 1 second (FEV1) was less than predicted. Eunice received a diagnosis of mild COPD. She has been able to care for herself and her older husband. Although she has no children, her sister and nieces live nearby and are able to assist her when needed.

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FIGURE. No caption a...
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Chronic obstructive pulmonary disease (COPD) is a common respiratory disease. It includes chronic bronchitis, chronic obstructive bronchitis, emphysema, or a combination thereof. Because there is no cure, COPD is a terminal disease; however, the loss of lung function is a gradual process (a U.S. Department of Health and Human Services [USDHHS] et al., 2003a). It may be many years before the lung function deteriorates, causing so much debilitation that a person is completely dependent on oxygen, barely able move without becoming short of breath. Even if a patient is in the end stage of COPD, the prognosis may be as long as 2 years (Claessens et al., 2000). Therefore, many of these patients receive much of their end-stage care from home health and hospice nurses. This article reviews COPD, offers strategies for end-stage symptom management, and discusses the role of the nurse.

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COPD is defined by its pathophysiology, an irreversible condition caused by airway and airspace disease resulting in airflow limitations (Croxton et al., 2003;Manda & Rennard, 2003). Specifically, the bronchi, bronchioles, and alveoli lose their elasticity, leading to incomplete expiration in the breathing process (Manda & Rennard; USDHHS et al., 2003a). Chronic bronchitis causes the walls of the bronchi and bronchioles to become thickened and swollen from inflammation. In chronic obstructive bronchitis, cells in the bronchi and bronchioles produce excess sputum that causes plugging. In emphysema, the alveoli walls collapse (USDHHS et al., 2003b). The result of all three conditions is ineffective breathing, causing abnormal exchange of oxygen and carbon dioxide.

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Case Example (Continued)

During the past 7 years, Eunice has progressed to having moderate COPD. She loses her breath and becomes anxious, making her breathing more difficult. She is taking multiple medications, including bronchodilators, anti-anxiety medications, and steroids. Eunice resists using oxygen because she is afraid once she starts using it, she will not have anything to help her when she becomes more ill.

Even if a patient is in the end stage of COPD, the prognosis may be as long as 2 years. Many of these patients receive much of their end-stage care from home health and hospice nurses.

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According to the National Heart, Lung, and Blood Institute, 12.1 million adults aged 25 years and older received a diagnosis of COPD in 2001 (USDHHS et al., 2003a, 2003b). It is now estimated that COPD affects more than 15 million Americans. The incidence of COPD appears to be higher in females than in males, which may reflect the rising numbers of females who smoke. Each year approximately 726,000 patients are hospitalized with exacerbations of the disease and approximately 119,000 patients die (Croxton et al., 2003). COPD is the fourth leading cause of death (USDHHS et al., 2003a).

The etiology of COPD is not well understood. Risk factors include exposure to tobacco, including cigarettes, pipes, cigar, and second-hand smoke. However, only 15% of patients, with a long history of tobacco use, experience the disease (Croxton et al., 2003). Other risk factors include occupational exposure to dusts, chemicals, and perhaps pollution.

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It is estimated that each year there are more than 15 million healthcare visits and 150 million days of disability related to COPD (Croxton et al., 2003). Of these, 1.5 million were emergency department visits made for COPD complications. The total direct cost related to COPD is estimated at approximately $32 billion per year (USDHHS et al., 2003a). The potential and essential role for nurses in reducing emergent care, controlling costs, and assisting in optimal end-of-life care cannot be underestimated. By understanding the complex trajectory of end-stage COPD, nurses in the home can assist patients in anticipating symptom management and preventing inappropriate or unwanted emergency room visits.

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Because COPD is not preventable and there are no screening tests, it appears to be greatly under-diagnosed. Clinicians consider COPD in patients with cough, increased sputum production, dyspnea, or exposure to risk factors of cigarettes, environmental pollutants, and family history of chronic respiratory illness (American Thoracic Society, 2004).

The symptoms of COPD include chronic cough and sputum production accompanied by severe disabling shortness of breath (USDHHS et al., 2003a). In the initial presentation of the disease, patients may or may not notice symptoms. Later, patients tend to experience cough, increased sputum production, wheezing, chest tightness, and shortness of breath, particularly with exertion. Demonstration of decreased airflow limitations and progressive disease are below the normal range of 83% or greater of FEV1 and less than 1.5 L for forced vital capacity. These spirometry measurements are the best predictors of COPD and are done with measurements of breathing after bronchodilator administration (Croxton et al., 2003). Other work-up includes chest radiograph to determine other lung abnormalities, sputum cultures for infections, and electrocardiogram as baseline for heart function because right-sided failure may develop later (see Table 1).

Table 1
Table 1
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With end-stage COPD, patients experience severe dyspnea and inability to do most activities, including self-care. The FEV1 is usually less than 0.5 liters, resulting in hypercarbnia adding further to breathing difficulties (Warren et al., 2002). Acute exacerbations occur with worsening of disease, secondary right heart failure, and secondary pneumonia or viral infections (Sullivan et al., 1996). Exacerbations include difficulty with both catching one’s breath or talking, blue-gray lips and/or fingernails, clubbing of fingertips, and tachycardia. These symptoms are frightening, often necessitating emergent medical attention. Frequent episodic exacerbations may occur in which the patient’s condition is stabilized and the patient returns home. Because of the cycle of exacerbation and stabilization, the disease and its prognosis are difficult to predict, and most endstage care is provided in a crisis mentality. In the imminently terminal phase, the patient may require ventilatory support without any hope of survival.

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Case Example (Continued)

Eunice has had many respiratory infections requiring frequent hospitalizations, and she subsequently has lost increasing amounts of time at work. She is fearful about her declining health, particularly in losing her job and her health insurance. Eunice has been afraid to talk to anyone about her fears because that would affirm her illness. She is referred to a social worker to help her consider completing disability paperwork for Medicare benefits. Her pulmonologist orders home care support and that her care be coordinated by a primary nurse. Eunice is reluctant to accept this help. However, because she is also worried about her husband, she thinks this may help her stay out of the hospital. When her nurse, Mary, hears this, she begins discussions about Eunice’s values and beliefs about life-sustaining treatments.

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Advanced Care Planning

Often, patients with COPD receive suboptimal care because of lack of knowledge about end-stage COPD and the lack of any additional therapies (Gore et al., 2000). Advanced care planning is often neglected, resulting in crisis decision making when assisted ventilation is the only option available (Sullivan et al., 1996). Thus, the patient or family is left with making the awful decision between life with constant mechanical ventilation, BiPAP (bilevel positive airway pressure) or CPAP (continuous positive airway pressure), knowing that a person’s quality of life will continue to deteriorate to death or death by withdrawal of such support.

Advanced care planning is a process of initiating discussion, reflection, and understanding of a one’s health state in terms of goals, values, and preferences for future treatment. An important area in the process includes decision making around life sustaining treatments. Specifically for the patient with a COPD diagnosis, the patient is asked to define what a good quality of life is, how this would change when the COPD becomes more symptomatic, and his or her wishes for life-sustaining measures, such as mechanical ventilation or intensive care unit transfers.

Often, these decisions are based on the patient’s family support and previous experience in the intensive care unit along with other previous interactions with the healthcare system, including deaths of other family members, respiratory infections, and emergency room visits. For patients with COPD, these are difficult conversations because there often are no preferable alternatives (Sullivan et al., 1996). Even more important is that these conversations often do not occur until too late, when physicians feel the only option is mechanical ventilation (Sullivan et al.). However, being given choices, particularly without any discussion about what the choices mean in the context of end-stage COPD, may cause a patient to feel excessively burdened. Nurses, by their continual close proximity to patients, have the opportunity to initiate these discussions earlier in the disease trajectory.

The American Nurses Association (1991) states that nurses have a responsibility “to facilitate informed decision-making,” including but not limited to advanced directives. By the time patients are in the end stage of COPD, they usually have been in and out of the hospital, with clear knowledge about how the disease has affected their quality of life. Although patients may differ in the extent to which they wish to participate in treatment decisions, a number of studies have indicated a patient’s preference to take a collaborative role. Being provided with adequate information is critical (Claessens et al., 2000;Croxton et al., 2003;Fischer et al., 2000;Weeks et al., 1998). The nurse can ascertain the patient’s quality of life, values, beliefs, and preferences for life-sustaining care with a good understanding of the patient’s functional status.

The process of advanced care planning begins with the patient’s understanding of the disease and discussion about possible scenarios leading to death, which in itself may prepare the patient for the course of disease. Nurses can discuss some of the burdens and benefits of life-sustaining treatments and explain medical jargon. Having the patient consider such questions as, “What if we are not sure whether we will be able to get you off the breathing machine?” can help facilitate thought and decision about how much chance of success a patient needs to have to make certain decisions (Sullivan et al., 1996;Weeks et al., 1998). Table 2 offers some sample questions to start the discussion.

Table 2
Table 2
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Patients tend to express their preferences for care after they understand their condition and options for therapy (Maguire, 1999). The result may be a sense of control and a sense of trust with the nurse and the healthcare team. Moreover, a change in focus from future cure-oriented treatments to goals of current living may facilitate meaning and purpose and life closure (Fischer et al., 2000). Having determined the patient’s wishes, nurses play a pivotal role in advocating for these wishes and preferences, as well as communicating them to family members and other healthcare providers.

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Case Study (Continued)

Eunice is at home with continuous oxygen under the care of a home health agency. She is on disability, and her insurance is covered by Medicare and provides her relief from worrying about finances. Eunice wants to avoid hospitalizations and the emergency room, although she is still fearful of losing her breath. Her nurse helps reassure Eunice that she can be cared for at home, even though her husband cannot help with care. Her physician and her nurse have developed a care plan to help her stay at home with COPD flares. Her nurse also has helped her with medication management and energy conservation. Dietary recommendations have helped her avoid malnutrition and dehydration. Physical therapy has helped her with exercises to maintain her muscle strength. She has a home health aide to help with personal care and a homemaker to help with household chores.

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End-Stage Management

The profile of patients with a projected prognosis of approximately 1 year includes best FEV1 less than 30% of predicted amount, declining performance status, uninterrupted walking distance limited to a few steps, more than one urgent hospitalization within the past year, right heart failure, and other comorbid diseases, along with the accompanying demographics of older age, depression, and single marital status (Hansen-Flaschen, 2004). These patients are appropriate candidates for hospice care.

Overall, patients with end-stage COPD have been found to have poor quality of life with worse physical, social, and emotional health status (Gore et al., 2000). Management is difficult because there are few options. Pulmonary rehabilitation may help increase exercise tolerance, decrease dyspnea, and increase both body and muscle strength through supplemental nutrition if a patient can tolerate such activity. Surgery, for selected patients, may be performed with the intent of decreasing hyperinflation and improving respiratory muscle mechanics (USDHHS et al., 2003b). A bullectomy, or removal of large air sacs compressing good functioning lung, allows good lung to expand (Luce & Luce, 2001). In extremely rare cases, a lung transplant may be possible (Croxton et al., 2003; Luce & Luce; USDHHS, 2003b).

Smoking cessation, at any time, may greatly assist the person’s breathing, no matter how close to death the patient is. Flu shots and pneumococcal vaccine, to prevent infections that may cause additional respiratory compromise and distress, are other preventive strategies (USDHHS et al., 2003a).

It is also important to treat secondary problems related to COPD, particularly cor pulmonale or right-sided heart hypertrophy. Cor pulmonale is caused by hypoxia, which produces pulmonary hypertension. Right-sided hypertrophy is caused by the ineffectiveness of the lungs, causing the heart to work harder to maintain oxygen levels. The result is jugular venous distention, hepatomegaly, ascites, peripheral edema, and weight gain. Patients may need diuretics to reduce swelling and ascites (Warren et al., 2002).

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The major symptom of COPD is dyspnea, which severely affects a patient’s quality of life. Dyspnea is defined as the sensation of difficult breathing and is a very distressing experience for patients because there is loss of control and extreme helplessness. Because patients become panicked, anxious, and breathless, it also renders family members helpless. In the hallmark Study to Understand Patient Preferences in Outcome for Outcomes and Risks of Treatment (SUPPORT), almost all patients, particularly those with COPD, experienced dyspnea; however, it was not well managed (Claessens et al., 2000).

To better manage dyspnea, it is important for the nurse to understand the complexity of respiratory function. The respiratory center is located in the medulla and pons and coordinates the activity of the diaphragm, intercostal muscles, and the accessory muscles of respiration. The center receives sensory information from several sites: the central and peripheral chemoreceptors in the blood vessels; peripheral mechanoreceptors from the muscles tendons and joints; and pulmonary vagal stretch receptors activated by lung inflation, air flow, smooth muscle tone, and interstitial and capillary pressure (Thomas & von Gunton, 2003).

In COPD, the dyspnea progresses as the disease progresses, and the respiratory center is stimulated by various receptors. Central and peripheral chemoreceptors are stimulated by chemical changes in response to changes in arterial carbon dioxide, oxygen, and the resulting change in blood pH. Airflow obstruction and low-volume breathing, which stimulate mechanical receptors in the chest walls, respiratory muscles, and the vagal stretch receptors in the airways and lungs, may contribute to the sensation of breathlessness caused by airflow obstruction or breathing at low lung volumes. Extrathoracic receptors on the face that stimulate the central nervous system may also affect breathlessness (Jantarakupt & Poruck, 2005;Luce & Luce, 2001;Thomas & von Gunton, 2003). These changes are caused by receptors in various areas. Other factors that create dyspnea include increased mechanical load for the respiratory system, increased ventilation, weakened respiratory muscles from fatigue, and increased lung volume (Janssens et al., 2000).

Dyspnea in end-stage COPD is caused by pneumonia and disease progression. The result is increased ventilatory effort to breathe and decreased ability for any activity. Objectively, the patient may have labored breathing, with rapid respiratory rate, use of accessory muscles, and staccato speech. Each breath takes extreme work, causing the patient to appear anxious, necessitating the patient to sit up and lean forward to breathe (Wickham & Malac, 2003). Obtaining a detailed history is critical in distinguishing dyspnea from other symptoms, such as pain, fatigue, and weakness, which also may cause tachypnea. Pain is rare in COPD unless there is another comorbid disease. If pain is present, it can be distinguished from dyspnea because it is usually intermittent throughout the breathing cycle. Some patients may experience pain from corticosteroid-induced bone fractures that are best treated with nonsteroidal anti-inflammatory drugs, bisphosphonates, or calcitonin (Warren et al., 2002). Fatigue and weakness may be differentiated from dyspnea in that the patient can actually breathe but it takes quite a bit of effort to move or breathe.

There is no reliable objective measure of dyspnea. Measurements of respiratory rate, oxygen saturations, or blood gases are not clinical indicators of dyspnea because results may be negatively correlated with how the patient actually feels. Therefore, like pain, the use of a rating scale can help the clinician manage breathlessness. Campbell (2004) and Thomas & von Gunton (2003) suggest a scale of 1 to 100, with 0 as no breathlessness and 100 being the worse possible breathlessness, to better gauge the dyspnea. It helps the clinician assess management strategies and the patient’s continued progression over time.

There is no reliable objective measure of dyspnea. Measurements of respiratory rate, oxygen saturations, or blood gases are not clinical indicators of dyspnea because results may be negatively correlated with how the patient actually feels. Therefore, like pain, the use of a rating scale can help the clinician manage breathlessness.

It is helpful for the nurse to begin with comments about observations of the patient’s actual breathing. Questions such as, “I notice how hard breathing is for you; is this constant? Does anything help?” allow the patient to describe his or her dyspnea experience. These questions serve to gain further assessment, including patient description of the breathlessness: when in the course of the disease it began, what things make it better or worse, medications used and how effective, effect on daily function, and what the symptom means for the patient.

Management of dyspnea is divided into three categories: prevention, treatment of underlying cause, and palliation (Campbell, 2004). Prevention can include maximal therapy, including pharmacological interventions, such as nebulized bronchodilators, and oxygen. Treatment includes treating infections, as well as the use of invasive and noninvasive mechanical ventilation. Palliation includes the mainstay management for dyspnea: positioning, oxygen, and the most effective pharmacological intervention, opioids (Campbell, 2004;Thomas & von Gunton, 2003).

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Sitting upright with the head elevated is important because this helps promote more effective breathing with better lung expansion. The nurse can educate patients and families about appropriate upright positioning, even when the patient is sleeping in a recliner chair or home hospital bed. An over-the-bed table allows a patient to safely lean forward. Other creative measures include the use of bolster pillows, wedges, or body pillows in bed to maintain the upper body in an upright position while sleeping. Additional training may include how to lean into stairs, the use of shopping carts to walk, and how to best perform activities of daily living with preferred positions (Jantarakupt & Poruck, 2005).

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Environmental Strategies

Room temperature is a consideration because cooler temperatures decrease oxygen demands. In warm weather, the nurse can help patients and families consider air conditioners, cool air humidifiers, or cooling fans. In cold weather, a patient needs warm clothes and a scarf over the face to avoid the dry cold air that can irritate the face receptors and provoke dyspnea. Patients also may need humidifiers to increase the moisture in air, which becomes dry because of heating systems. Energy conservation is paramount for the patient. The nurse can help the patient prioritize activities based on importance and meaning and help the patient and family develop a daily schedule. Therapists can help obtain assistive devices to help with personal care in the bathroom.

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COPD is a progressive, irreversible lung disease. Although progression can occur over many years, the initiation of advance care planning can help the patient attain quality of life. Because there is no cure, management of end-stage disease focuses on palliation of symptoms, particularly dyspnea. Interventions are divided into three categories: prevention, which includes pharmacological management; treatment, which includes pharmacological management of infections and invasive and noninvasive ventilation; and palliation, which includes positioning, oxygen, and pharmacological management. In a future issue, Part II will review palliation of dyspnea along with other symptoms and management of COPD.

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© 2006 Lippincott Williams & Wilkins, Inc.