Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease

Summary

People with advanced chronic obstructive pulmonary disease (COPD) have distressing physical and psychological symptoms, often have limited understanding of their disease, and infrequently discuss end-of-life issues in routine clinical care. These are strong indicators for expert multidisciplinary palliative care, which incorporates assessment and management of symptoms and concerns, patient and caregiver education, and sensitive communication to elicit preferences for care towards the end of life. The unpredictable course of COPD and the difficulty of predicting survival are barriers to timely referral and receipt of palliative care. Early integration of palliative care with respiratory, primary care, and rehabilitation services, with referral on the basis of the complexity of symptoms and concerns, rather than prognosis, can improve patient and caregiver outcomes. Models of integrated working in COPD could include: services triggered by troublesome symptoms such as refractory breathlessness; short-term palliative care; and, in settings with limited access to palliative care, consultation only in specific circumstances or for the most complex patients.

Introduction

Chronic obstructive pulmonary disease (COPD) is a major contributor to global morbidity and mortality.1, 2 Despite the decreasing prevalence of smoking in developed countries, tobacco consumption in low-to-middle income countries is increasing, and the prevalence of COPD is projected to increase with global population growth and ageing.³ The disease is characterised by chronic airflow limitation and symptoms of breathlessness, exercise intolerance, and cough.⁴ The mainstay of pharmacological treatment is inhaled bronchodilator and anti-inflammatory therapies. These have modest effects on airflow limitation and rates of exacerbations, but no effect on survival.⁵ COPD is recognised as a multisystem disease, the effects of which are not limited to the lung and are associated with symptom burden and prognosis.4, 6, 7 Many people with COPD also have multiple other disorders. In a recent meta-analysis,⁸ COPD was found to be associated with substantially higher comorbidities than other diseases. Thus, even when medical treatment is optimised, a large proportion of people with COPD have symptom-related distress.⁹ Hence, there is a clear need for additional intervention, with the therapeutic aims to reduce symptoms, improve functioning, and optimise quality of life.

Palliative care could have a prominent role in the management of people with COPD. Palliative care is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering”.¹⁰ The person is put before the disease, life is affirmed, and death is regarded as a normal process. Palliative care supports people to live fully through the early identification and impeccable assessment and treatment of physical, psychosocial, and spiritual concerns by providing education about the disease to patients and families and discussing treatment preferences towards the end of life (figure 1).2, 11 A growing amount of evidence supports use of palliative care in non-cancer diseases, even early in the disease course. In a recent systematic review and meta-analysis of pooled patient (n=12 731) and caregiver (n=2479) data,¹² palliative care was associated with improvements in patients' symptom burden (standardised mean difference −0·66, 95% CI −1·25 to −0·07) and quality of life at 1–3 months (0·46, 0·08–0·83), and there was a consistent pattern of reduced health-care use.

Almost 20 years ago, the investigators of the SUPPORT study¹³ of seriously ill people with COPD who were admitted to hospital advocated for earlier and enhanced palliative care, even for patients remaining open to life-sustaining treatments. However, progress has been slow and patients with COPD still face barriers to palliative care referral. The disease has an unpredictable course, punctuated by frequent exacerbations and often without a distinct terminal phase.¹⁴ Clinicians have difficulty predicting patient survival, even when a patient has been admitted to hospital.15, 16 Although composite prognostic indices such as the body-mass index, degree of airflow obstruction and dyspnoea, and exercise capacity (BODE) index, and the age, dyspnoea, and airflow obstruction (ADO) index can help,17, 18 these do not have the accuracy needed to change short-term management of individuals (C statistics for survival 0·61 and 0·74), in part because they do not consider non-respiratory causes of death such as cardiovascular disease. Unsurprisingly, people with COPD are less likely than patients with other chronic illnesses to be referred to palliative care.¹⁹ Results of large cohort studies19, 20 show that only 2–20% of patients with advanced disease, such as those receiving long-term oxygen therapy or who have been admitted to hospital with exacerbation, have accessed palliative care services. Findings from population-based studies21, 22 suggest that the gap in receipt of palliative care between patients with COPD and patients with other chronic illnesses is widening with time, leading to reduced quality end-of-life care.²³ People with COPD are more likely than people with lung cancer to die in a hospital setting,²⁴ which is against their general preference to die at home.²⁵ In a UK population-based study spanning 14 years,²⁶ 67% of patients with COPD died in hospital, 20% of patients died at home, and less than 1% of patients died in a hospice setting.

In this Series paper, we (1) describe the common physical and psychosocial symptoms and concerns of patients with advanced COPD; (2) summarise current evidence on how these symptoms and concerns can be addressed using palliative care interventions; and (3) consider models of integrated palliative care in COPD and evidence for their effectiveness in high-income countries.