Context: Patients with non-malignant, advanced lung diseases (NMALD), such as chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD), experience a high symptom burden over a prolonged period. Involvement of palliative care has been shown to improve symptom management, reduce hospital visits and enhance psychosocial support; however, optimal timing of referral is unknown.
Objective: The aim of this study was to identify the stage in the illness trajectory that patients with NMALD are referred to an ambulatory palliative care clinic.
Methods: A retrospective chart review was conducted on all patients with NMALD who attended a Supportive Care Clinic (SCC) between March 1, 2017 and March 31, 2019.
Results: Thirty patients attended the SCC during the study period. The most common diagnoses included COPD (36.7%), ILD (36.7%), and bronchiectasis (3.3%). At the time of initial consultation, the majority (89.4%) had Medical Research Council (MRC) class 4-5 dyspnea, however, only 1 patient had been prescribed opioids for management of breathlessness. Twenty-six patients had advance care planning discussions in the SCC. Phone appointments were a highly utilized feature of the program as patients had difficulty attending in-person appointments due to frailty and dyspnea. One-half of patients had at least 1 disease-related hospital admission in the previous year. Six patients were referred directly to home palliative care at their initial consultation.
Conclusions: Referral to palliative care often occurs at late stages in non-malignant lung disease. Further, opioids for the management of dyspnea are significantly underutilized by non-palliative providers.
Keywords: inter-professional clinic; multi-disciplinary clinic; non-malignant lung disease; palliative care; referral timing; supportive care.