Attitudes to Palliative Care Amongst People With Interstitial Lung Disease and Their Carers

Distressing symptoms such as cough, fatigue, and chronic breathlessness are highly prevalent among people with interstitial lung disease (ILD). Despite high symptom burden, treatment options are limited, and access to palliative care is suboptimal. We aimed to explore the knowledge and beliefs of people with ILD, and their carers regarding symptom management, and understand the barriers, and facilitators to accessing supportive and palliative care.

Qualitative interviews with people with ILD and carers recruited from Australian public and private respiratory clinics were conducted. Transcripts were analysed thematically.

Four themes emerged from 15 people with ILD and 2 carer interviews: (1) symptom burden and management; (2) beliefs and perceptions regarding opioids and supportive and palliative care; (3) informational needs; and (4) access to care and trust through continuity of care. Participants described managing frightening breathlessness, challenging symptoms, and treatment side effects as overwhelming. Relentless functional decline and variable self-management adherence were reported. Opioids and palliative care were associated with end-of-life care. Participants indicated greater acceptance of supportive care if more reliable information and educational resources regarding disease and symptom management were available. Participants noted that healthcare access requires multimodal delivery, digital literacy, the establishment of trust, continuity of care, and multidisciplinary collaboration.

People with ILD had high symptom burden but limited knowledge regarding symptom management and palliative care, with misperceptions influencing acceptance. Early integration of palliative care within multidisciplinary specialist ILD clinics, together with educational resources, is needed to facilitate holistic care.