Critically examining the end of life care of people with interstitial lung disease: views of patients, families and healthcare professionals

Abstract

Background Interstitial lung diseases (ILDs) are a heterogeneous group of conditions causing inflammation and fibrosis of the lung parenchyma. Progressive fibrotic ILD is characterised by the development of irreversible lung fibrosis, causing progressive respiratory failure, which is associated with a poor prognosis. People with ILD experience a high symptom burden and many experience poorly controlled symptoms at the end-of-life. There is a paucity of research considering the end of life experience of people with ILD. Aims This research study aimed to explore the experience of end of life for people with ILD and examine potential barriers to accessing palliative care services. Methods Semi-structured interviews were conducted with people with ILD (n=9), bereaved relatives (n=9) and healthcare professionals (n=12). Constructivist grounded theory methodology was employed for data collection and analysis. Findings Four overarching categories were constructed from the research data: i) acknowledging uncertainty, ii) accessing and organising support, iii) avoiding discussion about an uncertain future, iv) accelerating symptoms at the end of life. Rapid deterioration of symptoms at the end of life influenced symptom control, presence of family and location of death. People with ILD prioritised a peaceful death over the location of death; central to this concept were well-controlled symptoms and that death was anticipated. Abstract Patient associated barriers preventing access to specialist palliative care services included prognostic uncertainty, misconceptions about the role of palliative care and avoiding advance care planning conversations. Healthcare professional related barriers included prognostic uncertainty, time limitations, remote consultations, prioritisation of malignant disease, geographical disparity and scarce community palliative care resources. Conclusions These findings highlight the requirement for increased explanation of prognostic uncertainty and acknowledgement that symptoms may deteriorate rapidly, meaning that end of life plans should focus on ensuring a peaceful death rather than on location of death.