COPD as a Life-Limiting Illness: Implications for Advanced Practice Nurses

Donna M. Goodridge, RN, PhD

Disclosures

Topics in Advanced Practice Nursing eJournal. 2006;6(4) 

In This Article

Living With Advanced COPD

People with advanced COPD commonly experience a course of inexorable decline, marked by disabling dyspnea and increasingly frequent hospital admissions.[11] They are often socially isolated, and they experience a high symptom burden, low quality of life, and considerable psychosocial needs.[30] APNs need to be aware of the burden associated with advanced COPD in order to appropriately intervene in the practice setting.

In 2005, the American College of Chest Physicians issued a position statement on palliative and end-of-life care for patients with cardiopulmonary disease.[1] The College affirmed that the prevention, relief, reduction, and soothing of symptoms "without affecting a cure" should be an integral part of cardiopulmonary medicine. Three components of palliative and end-of-life care for people with cardiopulmonary disease were highlighted: (1) support for patient and family; (2) care of the patient; and (3) responsibility of the professional caregiver (see Table 4 ). The position statement may be recommended as a useful guide to practice for APNs caring for people with severe COPD.

Symptom burden in patients with severe COPD has been compared to that of persons with lung cancer.[11,31,32,33,34] Studies have consistently demonstrated that patients with advanced COPD experience significant impairment of health status, with physical and psychological needs that match or surpass individuals with lung cancer. Edmonds and colleagues[32] found that persons with chronic lung disease experienced significantly more breathlessness than persons with lung cancer in both the final year of life (94% vs 69%, P < 0.001) and in the final week of life (76% vs 67%, P = .06). In fact, 90% of patients with severe COPD suffered clinically relevant depression or anxiety,[11] compared with 52% of patients with advanced lung cancer, although only a small percentage in each group had been formally assessed or treated for anxiety or depression.

Poor quality of life is a powerful predictor of both hospitalization and mortality in individuals with COPD.[35] After adjusting for comorbidity, long-term steroid use, and prior hospitalizations for COPD, patients in the lowest quartile of physical function had an increased risk of death that was 5 times higher than that for patients with scores in the highest quartile. This highlights the need for APNs to include quality of life as a key element of their assessments of people with COPD.

While dyspnea is the most common and distressing symptom for people with COPD,[33,36,37,38] the evidence base regarding adequate management of this symptom lags far behind that for pain management. Dyspnea is defined by the American Thoracic Society as "a subjective experience of breathing discomfort that consists of qualitative distinct sensations that vary in intensity. The experience derives from interactions among multiple physiologic, social, and environmental factors and may induce secondary physiologic and behavioral responses."[39]

Dyspnea is a frightening, distressing, and ultimately subjective phenomenon that can only be described by the patient.[40] There is evidence, however, that the severity and terrifying nature of dyspnea are often minimized by healthcare providers who suggest that the dyspnea would improve if only these individuals "just learned to relax."[21,41]

The burden of fatigue and sleep disturbances[16,33,35,38,42] suffered by people with COPD also needs to be recognized. Over time, dyspnea and fatigue result in extreme functional limitations that lead to a curtailing of daily activities such as self care, household chores, and leisure activities.[11,30,37,38,42,43] Bathing can be particularly challenging, given the high environmental humidity and the effort of getting in and out of the bath tub.[37] For some patients, even eating can be taxing, accompanied by a fear of not being able to breathe while eating. Therefore, APNs should include basic daily activity performance and nutrition in their assessments of persons with severe COPD, and should intervene appropriately.

The psychosocial impact of living with a devastating illness such as COPD can be overwhelming. Social isolation and loneliness are often exacerbated by the serious functional disabilities that characterize advanced COPD,[33,37,42,44] and depression and anxiety are common.[11,29,45,46] Additional psychosocial challenges are panic, fear, and frustration.[21,37] In fact, feelings of worry, sadness, nervousness, irritability, and difficulty concentrating have been reported to be as common in people with COPD as in those with cancer.[34]

As part of the APN's assessment, the needs of family members must also be considered. Family members are the patient's advocates, companions, personal caregivers, and surrogate decision-makers.[1] There is relatively little research on the specific challenges faced by these long-term caregivers, although Rhodes[30] notes that their needs often are unrecognized or simply ignored by practitioners.

These caregivers face a protracted period of responsibility as they assume multiple new roles throughout the course of the patient's illness.[42,47] They are often aging spouses themselves, and may be dealing with their own illness or compromising their own health.[1] Wives of persons with COPD have reported ongoing fear about their husbands' sudden death, resulting in a high level of vigilance about their husbands' conditions.[47] Study participants also reported a lack of support from healthcare providers and said that they needed more assistance and information about their husbands' disease. Often, family members are sent home with the newly discharged patient without adequate instruction on equipment and medications.[1]

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