Introduction Referral rates to Specialist Palliative Care are low in Idiopathic Pulmonary Fibrosis (IPF) despite mean survival of 3 years,1 and a high symptom burden in the final year, in particular dyspnoea, chest pain, anxiety and depression, and fatigue.2 This study aimed to explore chest clinicians’ experiences in delivering care in advanced IPF.
Methods Questionnaires were distributed at a regional Respiratory meeting, focussing on initiating End-of-Life discussions, predicting prognosis, training, and reasons for low palliative care referrals.
Results 57 completed questionnaires - 17 chest consultants, 28 chest registrars, 11 physiotherapists, and 1 nurse clinician. 23 (40%) initiated End-of-Life discussions in severe IPF frequently or very frequently, and 47 (84%) felt it was a very important or important part of their role, but 42% felt predicting prognosis in advanced IPF was difficult or very difficult. More consultants felt End-of-Life discussions were an important part of their role than registrars.
Several aspects of End-of-Life care were felt to be harder in severe IPF than advanced malignancy (Figure 1), although similar to advanced COPD. 22 (42%) referred patients with severe IPF to hospital palliative care services very frequently or frequently, and 19 (37%) to community palliative care very frequently or frequently. Less than 10% of all respondents felt they had significant training in initiating End-of-Life discussions, palliating symptoms, or services available.
The three symptoms perceived to be experienced most in patients dying with IPF were breathlessness, anxiety and fatigue (cohort data supports this2). The three commonest reasons for low palliative care referrals were healthcare team perceptions that palliative care services focussed on cancer, patient’s lack of awareness of prognosis, and difficulty clinicians have in predicting prognosis.
Conclusion Chest clinicians find predicting prognosis in ILD difficult, and this contributes to low palliative care referrals. They have minimal training in End-of-Life issues in IPF and there is a lack of local services for such patients. Respiratory training, and commissioning groups, are challenged to develop better End-of-Life services for a condition carrying a high symptom burden and often distressing death.
References 1 Hubbard R, Johnston I, Britton J. Survival in patients with cryptogenic fibrosing alveolitis: a population-based cohort study. Chest. 1998;113:396–400
2 Bajwah S, Higginson IJ, Ross JR. et al. Specialist palliative care is more than drugs: a retrospective study of ILD patients. Lung. 2012;190:215–20