Respiratory physicians need to take a more proactive approach to managing the end-of-life care of patients with interstitial lung disease, palliative experts say.

The call comes after research showed patients dying from interstitial lung disease receive lower quality end-of-life care, experience more breathlessness and are more likely to die in hospital compared to patients dying of lung cancer.

The study published in Thorax by an international research team that included palliative care expert Professor David Currow from the Flinders University in Adelaide compared the end-of-life journey of 285 patients with ILD with over 10,000 patients with lung cancer.

Results showed that death in ILD patients was more likely to be ‘unexpected’ (15% vs 4%), less likely to occur in a palliative care setting (17% vs 40%) and end of life discussions were less common (41% vs 59%) compared to patients dying from lung cancer.

Patients with ILD also had more breathlessness (75% vs 42%) that was more likely to remain unrelieved, and higher levels of pain and anxiety, the data showed.

The findings support the need for a proactive palliative approach in these patients, the researchers say.

“Referral to specialised palliative care should be offered when starting LTOT, if not earlier… a more proactive palliative approach may allow patients to avoid hospital admission at the EOL if that is consistent with the patients’ wishes,” they wrote.

The research team noted that some of the observed differences between the patient groups may relate to disease-specific factors.

However the findings could also indicate that respiratory physicians are uncertain when and how to involve palliative care in advanced ILD.

“Though all recognise that ILD is progressive, the terminal decline often seems sudden or unpredictable, resulting in late referral to palliative care,” they said.

Better recognition of symptom burden for patients with oxygen-dependent ILD, perhaps through use of structured symptom assessments earlier in the disease course, could discover under-recognised palliative care needs, they say.

“This patient population would benefit from comprehensive palliative care needs tools similar to those employed in cancer,” they concluded.