Terri Maxwell, PhD, APRN

Almost 15.7 million Americans are diagnosed with chronic obstructive pulmonary disease (COPD), a chronic respiratory illness with multiple disabling symptoms that impact quality of life. More than half of adults with low pulmonary function are not even aware that they have COPD, so the actual number may be higher. 

COPD usually develops in people who are age 40 or older and is associated with smoking, although it can also occur in non-smokers. It is characterized by chronic airway obstruction and lung hyperinflation resulting from chronic bronchitis and emphysema. It is a progressive illness, and even with treatment, lung function generally worsens over time.

COPD severity is based upon the level of symptoms, future risk of exacerbations, and the presence of co-morbidities that can lead to complications. The Global Initiative for Chronic Obstructive Lung Disease (GOLD) guidelines describe four stages of COPD ranging from mild to very severe based upon worsening airflow limitation as measured through spirometry.

Reductions in airflow due to inflammation, fibrosis and exudates cause air to get trapped in the lungs and results in respiratory symptoms, such as dyspnea, cough and infections. In addition to respiratory symptoms, patients with advanced COPD frequently have systemic features, such as weight loss, fatigue, anorexia and severe coughing spells.  

Severe COPD

The mortality and morbidity associated with severe COPD is high, and the patients are mostly housebound and in need of continuous care and support. The uncertain nature of its prognosis due to the variable illness trajectory makes the introduction of palliative care and discussion of end-of-life issues difficult even in the advanced stage of the disease. The provision of palliative care should be based on patient need, especially with regard to symptom management and declining functional status.

Assessment of severity of lung function impairment, frequency of exacerbations and requirement for long-term oxygen therapy can help to identify patients entering the final 12 months of life.  It is important to recognize that the symptom burden and impact on activities of daily living for patients with COPD are comparable with that of cancer patients, and palliative care approaches are equally necessary.

COPD disease trajectory is usually marked by a gradual decline in health status, worsening symptoms and more frequent exacerbations that are associated with an increasing cycle of repeated and more frequent hospital admissions, including the possible use of non-invasive ventilation or mechanical ventilation. While the presence of acute or chronic respiratory failure is often seen as a terminal phase of COPD, there is great variability among these patients mainly because physicians are not always able to correctly predict survival.

Palliative care is better sooner than later

It has been suggested to start palliative care earlier, together with curative and restorative care, when there is an increased intensity of symptoms. Palliative care includes the management of dyspnea, provision of oxygen therapy, nutritional support, antianxiety, and antidepressant treatment, and advance care planning. Many professionals believe that it is necessary to pursue a holistic care approach for palliative care services, along with disease-specific medical management of all such patients to improve the quality of life in end-stage COPD.

Delays in offering palliative care are often compounded by inadequate communication and counseling with patients and their loved ones. However, there is a need for a clear discussion about decision making before acute respiratory failure sets in. In fact, a perceived poor quality of life does not necessarily correlate with a clear willingness to refuse invasive or noninvasive mechanical ventilation. Instead, decisions about the use of invasive ventilation and other aggressive care are frequently based on the patient’s prognosis, which, as described above, can be difficult to determine.

Pulmonologists and other physicians should discuss care goals with patients and families prior to acute crises requiring resuscitation or ICU care, but most have not received training on how to conduct these conversations, nor do they always see it as their role to do so. Furthermore, lack of prognostic tools makes it challenging to determine the ideal time for initiating these conversations and frequently only take place when all treatments have been exhausted.

Need for communication

Effective palliative care relies upon a willingness of COPD patients and their families to have honest and clear communication about the condition and what to expect in the future. The introduction of innovative new approaches to palliative care supports the need for advance care planning and emphasizes the role of community-based, specially trained nurses and clinical social workers.  

These professionals are particularly experienced and adept at conducting sensitive, meaningful conversations among patients, families and caregivers, which results in shared decision making that advances a clear understanding of what members and families view as important at the end-of-life. Such discussions help align treatments to individual wishes and goals of care.

These new models are grounded in the growing and broad recognition that palliative care, including symptom management, advance care planning, communication, and caregiver support, are needed throughout the course of serious illness such as COPD.  Specialized supportive care and help with decision-making regarding treatment options that match individual wishes not only improve satisfaction with care, but also enhance quality of life.

Increased need

Despite a longer life expectancy, baby boomers will have higher rates of hypertension, high cholesterol, diabetes and obesity, and this generation is more likely to report COPD than other age groups.

Many seriously ill patients don’t receive the services they need because their diseases aren’t ones that typically come to mind as end-of-life. For instance, individuals with COPD are far less likely to receive palliative care than patients with cancer or dementia — diseases typically associated with the end-of-life.

Patient-centered COPD care is comprehensive, going beyond the diagnosis and treatment to work with each patient to provide the best care possible that is in line with their goals and addresses the needs of the whole person, including their physical and emotional needs, to improve their quality of life.

With a tailored management plan, they will know how and when to take their medicines, when to call their healthcare provider and when to get emergency care. They will also be better able to track how they are doing overall and with specific health issues.

Palliative care professionals can be extremely influential in connecting patients with the resources they need to quit smoking. Additionally, the American Lung Association offers services to assist COPD patients. It is an organization that also advocates for pulmonary rehabilitation to improve a patient’s pulmonary function and mobility while providing opportunities for social interaction, screening for anxiety and depression, and in-person support groups and a caregiving coordination service.

Terri Maxwell is the chief clinical officer at Turn-Key Health.