Idiopathic Pulmonary Fibrosis & Palliative Care: A Qualitative Exploration of Nurses’ Experiences

Idiopathic Pulmonary Fibrosis (IPF) is a rare terminal respiratory disease caused by scarring of the terminal airways resulting in eventual respiratory failure (King et al. 2011). IPF has a median life expectancy of three to five years, however the disease trajectory is often unpredictable (Martinez et al. 2005 & Lindell et al. 2010). While both nonpharmacological and pharmacological interventions are available, lung transplantation is the only treatment option associated with reduced mortality rates (Sampson et al. 2015). However, only a minority of individuals diagnosed with IPF receive a lung transplant (Irish Thoracic Society 2018), therefore symptom management is imperative. In correlation with the National Patient Charter for IPF, palliative care implementation at diagnosis is recommended for optimum symptom management (Irish Lung Fibrosis Association 2015). In contrast, current literature appears to be inconsistent with these guidelines and portrays evidence of poor palliative care implementation practice in IPF at present. As nurses predominantly spend the greatest amount of time with patients (Delucia et al. 2009), the nurses’ experiences on the provision of palliative care in IPF including the impact on the nursing professional appears vital to enhance future care for those with IPF. Thus, the aim of this study is to explore nurses’ experiences in relation to the delivery of palliative care in IPF to improve future care for both patients and nursing professionals. 

To address this research question, a qualitative description (QD) approach was used to explore nurses’ experiences. Semi structured interviews facilitated data collection while data analysis was conducted through a thematic analysis (TA) strategy. Four themes emerged from the data collected, hope, symptom burden, nurse impact and palliative care implementation measures to name some. 

In conclusion, IPF is associated with high symptom burden thus palliative care is required for better patient outcomes. However, as a result of stigma, palliative care discussions often result in a sense of hopelessness for those with IPF. Overall improvement is required in palliative care implementation in current practice; nevertheless, implementation timing should be assessed on an individual level. Strategies such as disease awareness, palliative care education and improved communication are required to enhance IPF management in the future.