“Primary care providers [and] specialty pulmonologists should be … capable of screening patients who would benefit from proactive outpatient supportive care: … nursing, social work, respiratory, physical and pastoral.”
—Vermylen et al, International Journal of Chronic Obstructive Pulmonary Disease
The Importance of Meeting the Needs of COPD Patients
Patients with chronic obstructive pulmonary disease (COPD) are frequently under-supported, experiencing significant symptom burden, disability, and quality of life impairment during the last few years of life. They also aggressively use healthcare resources near the end of life, according to an article published in the International Journal of Chronic Obstructive Pulmonary Disease.
“Despite refractory symptoms and recurrent hospitalization, many patients with COPD die without access to palliative care,” write the authors, a team of experts in hospice and palliative medicine and pulmonary disease from Northwestern University Department of Medicine, Chicago.
The authors urge the practice of “proactive primary palliative care”—the incorporation of palliative care into the routine management of COPD. Their article offers a framework for the provision of palliative care and includes a list of triggers for when to initiate or escalate palliative care interventions.
“Primary care providers as well as specialty pulmonologists should be trained and capable of screening patients who would benefit from proactive outpatient supportive care,” they write. “Interdisciplinary teams, including nursing, social work, respiratory and physical therapists and chaplains or pastoral care should be engaged to meet the complex needs of their patients.”
COPD, a chronic and frequently disabling disease for which there is no cure, is the fifth leading cause of death worldwide, point out the authors. Unlike heart disease and stroke, which have seen mortality rates decrease in recent years, COPD is increasing in prevalence and its symptom burden is heavy.
“The burdens of significant symptoms and comorbid health conditions in COPD are comparable to or worse than other chronic illnesses, including heart failure, HIV and metastatic cancer,” write the authors. “Patients with COPD, however, are less likely to have adequate treatment of symptoms at the end of their life, are more likely to have a decreased health-related quality of life, and are significantly less likely to receive specialist palliative care referral.”
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Burdens of COPD:
- Disability. COPD is the 11th leading cause of disability worldwide and is projected to be the seventh leading cause by 2030.
- Shortness of breath. Breathlessness is a distressing symptom in itself and one associated with decreased quality of life and greater risk for further exacerbations and functional decline. Nearly all COPD patients, even those with stable lung function, report shortness of breath.
- Fatigue, cough and pain.
- Depression and anxiety. These symptoms often go unrecognized and unaddressed.
Palliative care has been found to improve symptom burden, quality of life and patient satisfaction in patients with COPD, the authors note. In its 2008 official policy statement on palliative/hospice care, the American Thoracic Society recommended that palliative services be available to patients with respiratory diseases “at all stages of illness.” However, delivery of these services to COPD patients is still far from the norm, due to persistent barriers.
Barriers to timely palliative care provision:
Prognostication. Because COPD patients typically experience a slow decline punctuated by episodes of acute exacerbation—many of which the patient will survive—recognizing the terminal phase of COPD is extremely difficult for physicians, patients and their families, the authors note.
The authors recommend a care approach that does not rely on precise prognostication and the identification of imminent death, but that instead proactively provides early access to palliative services.
Communication. Physicians may tend to avoid conversations with COPD patients about palliative and hospice care due not only to the difficulty in determining prognosis, but also because of a perception of inadequate training or time for holding such discussions. Further, some physicians may view palliative care as a service appropriate only for the actively dying, and fear they may take away a patient’s hope by introducing the topic “too early.”
Patients may prefer not to think about or discuss the end of their lives, or feel uncertain which physician they should talk to. But many COPD patients want emotional support and the peace of mind of knowing their suffering will be addressed and their wishes respected.
Palliative care triggers:
Triggers for initiating or intensifying palliative care resources for COPD patients:
- Advanced age (≥75 years)
- Comorbidities, particularly cardiac
- Poor functional status and/or patient-reported minimal physical activity
- Poor health-related quality of life
- Low forced expiratory volume in one second (<30%)
- Low body mass index (<20%)
- One or more hospitalizations in the past year
Framework for providing primary palliative care:
- Use a team: share responsibility for care with nurses, social workers, respiratory and physical therapists, chaplains and—if additional support and/or complex symptom management are required—experts in palliative medicine.
- Screen for and address unmet needs in the management of symptoms such as breathlessness, depression and anxiety.
- Conduct early and regular discussions about future care and concerns. “Would it help to talk about what to expect or what to prepare for as your illness worsens?”
- Encourage advance care planning: Identify decision-makers and clarify any desired limits to potential interventions. “Are there treatments or interventions that you would not want as you approached the end of life?”
Source: “Palliative Care in COPD: An Unmet Area for Quality Improvement,” International Journal of Chronic Obstructive Pulmonary Disease; August 6, 2015; 10:1543-1551. Vermylen HJ, Szmuilowicz E, Kalhan R; Section of Palliative Medicine and Asthma and COPD Program, Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago.