End-stage chronic obstructive pulmonary disease
(COPD) is a progressive illness without a cure.
Be-cause of its unpredictable trajectory, prognosis is
dif-ficult as, even in end-stage disease, patients may
ex-perience exacerbations and stabilization. There are
many symptoms to manage until ultimately,
respira-tory 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
re-views COPD, the management of subsequent
symp-toms, and the role of the home care nurse.
Case Example (Part 1)
Eunice is a 55-year-old mar-ried woman with COPD. She began smoking when she was 15 but stopped when she was 40. She spent many years working for a cleaning ser-vice. Ten years ago, she de-veloped an intractable cough with increased sputum. At first, Eunice thought she just had a persistent cold. However, when it didn’t re-solve after several months, she sought medical care. A chest x-ray revealed
nothing, but her forced expira-tory volume in 1 second (FEV
1) was less than predicted. Eu-nice 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.
Chronic obstructive pulmonary disease (COPD) is a common respiratory disease. It includes chronic bronchitis, chronic ob-structive bronchitis, emphy-sema, or a combination thereof. Because there is no cure, COPD is a terminal
dis-ease; however, the loss of lung function is a grad-ual process (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 com-pletely dependent on oxygen, barely able move without becoming short of breath. Even if a pa-tient 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 hos-pice nurses. This article reviews COPD, offers strategies for end-stage symptom management, and discusses the role of the nurse.
COPD is defined by its pathophysiology, an irre-versible 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 thick-ened 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 con-ditions is ineffective breathing, causing abnormal exchange of oxygen and carbon dioxide.
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.
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 dif-ficult. She is taking multiple medications, includ-ing 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.
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 (USD-HHS 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
num-bers of females who smoke. Each year approxi-mately 726,000 patients are hospitalized with ex-acerbations 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, includ-ing 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.
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 di-rect cost related to COPD is estimated at approxi-mately $32 billion per year (USDHHS et al., 2003a). The potential and essential role for nurses in re-ducing emergent care, controlling costs, and as-sisting in optimal end-of-life care cannot be under-estimated. By understanding the complex trajectory of end-stage COPD, nurses in the home can assist patients in anticipating symptom man-agement and preventing inappropriate or un-wanted emergency room visits.
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, dysp-nea, or exposure to risk factors of cigarettes, en-vironmental 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 spu-tum 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 FEV
1and less than 1.5 L for forced vital capacity. These spirometry
mea-surements 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).
With end-stage COPD, patients experience se-vere dyspnea and inability to do most activities, including self-care. The FEV
1is usually less than 0.5 liters, resulting in hypercarbnia adding further to breathing difficulties (Warren et al., 2002). Acute exacerbations occur with worsening of dis-ease, 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
Table 1. Classification of COPD
Staging of COPD is done by a single measurement that is spirometry. The classifications of disease are as follows: • At risk: Symptoms are mild, with chronic
cough and sputum. Spirometry results are normal predicted levels.
• Mild COPD: Patients experience mild airflow limitation. Spirometry results reveal that FEV1 and FVC are less than 70%.
• Moderate COPD: Patients develop worsening airflow limitations with shortness of breath. Spirometry results of FEV1, FVC less than 70%.
• Severe COPD: Patients develop severe airflow limitations and become very short of breath after little activity. A further complication includes right heart failure.
Note.COPD = chronic obstructive pulmonary disease; FEV1= forced expiratory volume in 1 second; FVC = forced vital capacity.
From the U.S. Department of Health and Human Services, National Institute of Health, National Heart, Lung and Blood Institute. (2003a). Chronic obstructive pulmonary disease. NIH Publication Number 03-5229. Available at www.nhlbi.nih.gov/health/public/lung/other/ copd_fact.htm.
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 ex-acerbation and stabilization, the disease and its prognosis are difficult to predict, and most end-stage care is provided in a crisis mentality. In the imminently terminal phase, the patient may re-quire ventilatory support without any hope of sur-vival.
Case Example (Continued)
Eunice has had many respiratory infections re-quiring frequent hospitalizations, and she subse-quently has lost increasing amounts of time at work. She is fearful about her declining health, particularly in losing her job and her health insur-ance. Eunice has been afraid to talk to anyone about her fears because that would affirm her ill-ness. 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 coordi-nated 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 Eu-nice’s values and beliefs about life-sustaining treatments.
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 thera-pies (Gore et al., 2000). Advanced care planning is often neglected, resulting in crisis decision mak-ing when assisted ventilation is the only option available (Sullivan et al., 1996). Thus, the patient or family is left with making the awful decision be-tween 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 de-teriorate to death or death by withdrawal of such support.
Advanced care planning is a process of initiat-ing discussion, reflection, and understandinitiat-ing 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-sus-taining measures, such as mechanical ventilation or intensive care unit transfers.
Often, these decisions are based on the pa-tient’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 in-fections, and emergency room visits. For patients with COPD, these are difficult conversations be-cause 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 me-chanical ventilation (Sullivan et al.). However, being given choices, particularly without any dis-cussion about what the choices mean in the con-text of end-stage COPD, may cause a patient to feel excessively burdened. Nurses, by their con-tinual close proximity to patients, have the op-portunity to initiate these discussions earlier in the disease trajectory.
The American Nurses Association (1991) states that nurses have a responsibility “to facilitate in-formed decision-making,” including but not lim-ited 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 knowl-edge about how the disease has affected their quality of life. Although patients may differ in the extent to which they wish to participate in treat-ment decisions, a number of studies have indi-cated a patient’s preference to take a collabora-tive role. Being provided with adequate information is critical (Claessens et al., 2000; Crox-ton et al., 2003; Fischer et al., 2000; Weeks et al., 1998). The nurse can ascertain the patient’s qual-ity 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 treat-ments and explain medical jargon. Having the pa-tient 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 of-fers some sample questions to start the discussion.
Patients tend to express their preferences for care after they understand their condition and op-tions 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 treat-ments 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.
Case Study (Continued)
Eunice is at home with continuous oxygen under the care of a home health agency. She is on dis-ability, and her insurance is covered by Medicare and provides her relief from worrying about fi-nances. Eunice wants to avoid hospitalizations and the emergency room, although she is still fearful of losing her breath. Her nurse helps reas-sure 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 medica-tion management and energy conservamedica-tion. Di-etary 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.
The profile of patients with a projected prognosis of approximately 1 year includes best FEV
1less than 30% of predicted amount, declining perfor-mance status, uninterrupted walking distance lim-ited to a few steps, more than one urgent hospi-talization within the past year, right heart failure, and other comorbid diseases, along with the ac-companying demographics of older age, depres-sion, 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 be-cause there are few options. Pulmonary rehabili-tation may help increase exercise tolerance, de-crease dyspnea, and inde-crease both body and muscle strength through supplemental nutrition if a patient can tolerate such activity. Surgery, for selected patients, may be performed with the in-tent 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 as-sist the person’s breathing, no matter how close to death the patient is. Flu shots and pneumococ-cal 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 prob-lems 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, he-patomegaly, ascites, peripheral edema, and weight gain. Patients may need diuretics to reduce swelling and ascites (Warren et al., 2002).
Table 2. Questions for
Advanced Care Planning
• What do you understand from what the doctor has told you?
• What do you understand about your current health situation?
• What fears or worries do you have about your illness, or about medical care?
• Do you have other worries or fears? • What activities or experiences are most
important for you to do to maximize the quality of your life?
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 help-lessness. Because patients become panicked, anx-ious, and breathless, it also renders family mem-bers helpless. In the hallmark Study to Understand Patient Preferences in Outcome for Outcomes and Risks of Treatment (SUPPORT), al-most 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 un-derstand the complexity of res-piratory function. The respira-tory center is located in the medulla and pons and coornates the activity of the di-aphragm, intercostal muscles, and the accessory muscles of respiration. The center receives sensory information from sev-eral sites: the central and pe-ripheral chemoreceptors in the blood vessels; peripheral mechanoreceptors from the muscles tendons and joints; and pulmonary vagal stretch re-ceptors activated by lung infla-tion, air flow, smooth muscle tone, and interstitial and capil-lary pressure (Thomas & von Gunton, 2003).
In COPD, the dyspnea progresses as the dis-ease progresses, and the respiratory center is stimulated by various receptors. Central and pe-ripheral chemoreceptors are stimulated by chem-ical changes in response to changes in arterial car-bon 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 respira-tory system, increased ventilation, weakened res-piratory muscles from fatigue, and increased lung volume (Janssens et al., 2000).
Dyspnea in end-stage COPD is caused by pneu-monia and disease progression. The result is in-creased ventilatory effort to breathe and de-creased 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, necessitat-ing the patient to sit up and lean forward to breathe (Wickham & Malac, 2003). Obtaining a de-tailed 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
nons-The profile of patients with a projected
prognosis of approximately 1 year includes
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.
teroidal anti-inflammatory drugs, bisphospho-nates, 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 dysp-nea. Measurements of respiratory rate, oxygen
sat-urations, or blood gases are not clinical indicators of dyspnea because results may be negatively cor-related with how the patient actually feels. There-fore, 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 manage-ment strategies and the patient’s continued pro-gression over time.
It is helpful for the nurse to begin with com-ments about observations of the patient’s actual breathing. Questions such as, “I notice how hard breathing is for you; is this constant? Does any-thing help?” allow the patient to describe his or her dyspnea experience. These questions serve to gain further assessment, including patient de-scription of the breathlessness: when in the course of the disease it began, what things make it better or worse, medications used and how effec-tive, effect on daily function, and what the symp-tom 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 pharma-cological interventions, such as nebulized bron-chodilators, 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 pharmacolog-ical intervention, opioids (Campbell, 2004; Thomas & von Gunton, 2003).
Sitting upright with the head elevated is important be-cause this helps promote more effective breathing with better lung expansion. The nurse can educate pa-tients and families about ap-propriate upright position-ing, 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 for-ward. Other creative mea-sures 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 po-sitions (Jantarakupt & Poruck, 2005).
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 humid-ifiers, 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 re-ceptors 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. Ther-apists can help obtain assistive devices to help with personal care in the bathroom.
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
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 man-agement; treatment, which includes pharmacolog-ical management of infections and invasive and noninvasive ventilation; and palliation, which in-cludes positioning, oxygen, and pharmacological management. In a future issue, Part II will review palliation of dyspnea along with other symptoms and management of COPD.
Constance Dahlin, APRN, BC, PCM, is Nurse Practi-tioner, Palliative Care Service, Massachusetts Gen-eral Hospital, Boston, MA.
Address for correspondence: Constance Dahlin, APRN, BC, PCM, MGH Palliative Care Service, Founders House 601, 55 Fruit Street, Boston, MA 02115 (email@example.com).
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 educa-tional activity.
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