Palliative care for people with non-malignant lung disease: Summary of current evidence and future direction

Abstract

Despite medical therapy, most patients with moderate to severe chronic obstructive pulmonary disease, interstitial lung disease and cystic fibrosis experience pain, fatigue and dyspnoea, with the majority not getting relief from dyspnoea towards the end of life. Furthermore, dyspnoea causes social isolation and difficulty performing activities of daily living and impairs quality of life. There is an increasing evidence base for the assessment of supportive and palliative care needs, symptom interventions, prognostication, models of service delivery and implications of these for clinical practice and research in non-malignant lung diseases. WHAT IS UNKNOWN: Despite advances, much still remains unknown regarding assessment, management and prognostication in individual chronic non-malignant lung diseases. Although different service models are being used in clinical practice, the optimal model(s) of service delivery remain unknown. IMPLICATION FOR FUTURE RESEARCH, POLICY AND PRACTICE: We describe key areas for further research, which include the need for large, high-quality trials of pharmacological and non-pharmacological interventions and their combinations as well as evaluation of the efficacy and cost-effectiveness of models of care. As access to palliative care is poor for these patients, the barriers to referral need to be understood and reduced, which along with effective working between palliative care teams, with respiratory services backup, should optimise delivery of care in patients with life-limiting non-malignant lung disease.

Palliative Care for Patients Dying in the Intensive Care Unit with Chronic Lung Disease Compared with Metastatic Cancer

“…Patients with ILD report dyspnea, chest pain, anxiety, and diminished quality of life (1,3). Although these patients seem to understand that their lung disease will progress and is likely to be a terminal condition, implementation of palliative care remains limited.…”

“…Although these patients seem to understand that their lung disease will progress and is likely to be a terminal condition, implementation of palliative care remains limited. Patients with COPD often do not achieve adequate relief of dyspnea and live in fear of suffocation in the last 6 months of life (1). In fact, patients with COPD may experience more severe dyspnea and poorer functional status during a longer and more protracted course of illness than patients with lung cancer (29).…”

“…Palliative care is recognized as an important component of care for all patients with life-limiting illness (1,2); however, historically, palliative care has been focused on patients with malignant diseases (1,3,4) and has been underused in patients with chronic lung disease (1). Recently, interest has grown in providing palliative care for patients with chronic lung disease, including chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) (1,5,6).…”

“…Recently, interest has grown in providing palliative care for patients with chronic lung disease, including chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) (1,5,6). The goals of palliative care for these patients include improving quality of life, symptom management, and advance care planning (5,7).…”

Danish respiratory society position paper: palliative care in patients with chronic progressive non-malignant lung diseases

“…Benzodiazepine treatment in COPD may be associated with a slightly increased mortality [47,49,50] and its effect on the perception of dyspnea is not fully elucidated [11,38,43]. Benzodiazepines reduce anxiety and can be tried when anxiety is a major component [11,50].…”