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Improving palliative care for IPF patients

Despite advancements in slowing down disease progression in idiopathic pulmonary fibrosis (IPF), it’s still a progressive, deadly disease. Wouldn’t extra support during their end-of-life period offer relief to IPF patients who suffer from symptoms like shortness of breath, pain, dyspnea and stress? According to researchers from the Helsinki University Central Hospital, an advanced care plan could make a difference for IPF patients.


A median survival of two to seven years

A median survival of two to seven years, that’s the prognosis for patients when diagnosed with IPF. This causes a lot of uncertainty in patients, as treatment options are limited for them and a lung transplantation is currently the only curative treatment available. But what if your situation gets worse and lung transplantation is not an option? Many IPF patients face this difficult situation and can only choose for extra guidance and support in the last stages of their disease.

To identify the current state of palliative care for patients with IPF in Finland, Rajala and colleagues analyzed healthcare documentation from 59 patients during the last six months of their life. In this national study the majority of patients (80%) died at a hospital with ongoing life-prolonging procedures, like antibiotics and diagnostic tests, until death. Only one third of the patients documented end-of-life decisions, and most of them were made in the three days prior to the patient’s death. The study indicates that end of life decisions were made late in the patients life span. Remarkably, in none of the patients a palliative care specialist was consulted. Also, referrals to hospices were very rare, although that may partly reflect the rarity of these services in Finland.

In patients with IPF it is often unclear which patients remain stable and which show a rapid decline in lung function or acute exacerbations. Due to this unpredictable disease trajectory, an early referral to end-of-life preferences and decisions are recommended. Furthermore, the researchers argue that current guidelines seem to be poorly implemented in clinical practice. The researchers conclude that the late end-of-life decisions and on-going life prolonging procedures during the final days reflect an unforeseeable approaching death and unplanned palliative care. Instead of waiting until the patient's final days, offering an earlier advanced care plan more frequently and discussing treatment preferences could be an appropriate way to improve palliative care for IPF patients.

Rajala et al. End-of-life care of patients with idiopathic pulmonary fibrosis. BMC Palliative Care (2016) 15:85