Background Pulmonary fibrosis is a chronic respiratory condition with a poor prognosis and significant symptom burden, yet has traditionally been managed purely by respiratory physicians. It was the experience in the Greater Manchester town of Wigan that many patients with pulmonary fibrosis were not recognised to be in the last year of life and often presented to and ultimately died in hospital during their final illness. There were missed opportunities for improving symptom control, advance care planning (ACP) and achievement of preferred place of death (PPD).
Methods A new service was established where a Palliative Medicine Consultant and clinical nurse specialist reviewed patients in a dedicated clinic running alongside the respiratory clinic. The monthly face to face clinic was complemented with a fortnightly telephone follow up clinic in-between. Symptom issues were addressed guided by Integrated Palliative care Outcome Scale (IPOS) completion, hand-held fans given out to help manage breathlessness, referrals considered to the local AHP-run palliative care out-patient centre and ACP and PPD discussed and recorded.
Results Since December 2017, to date 36 patients with Pulmonary Fibrosis have been referred to the clinic. Three patients died prior to review. Of the 33 who have been assessed, 9 remain under active follow-up, 6 have been discharged to community palliative care services, 1 back to GP and 17 have died. Advance care planning was initiated in 26 patients (79%) and completed in 18 (55%). Of the 17 patients that died, all but two died out of hospital (88%), 11 in their own home/nursing home and 4 in hospice, significantly greater than national averages for non-malignant conditions.
Conclusion The development of a hospital-based dedicated palliative medicine clinic for patients with Pulmonary Fibrosis has resulted in a majority of out-of-hospital deaths for this group of patients.
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