Advance Care Planning: A Retrospective Audit in a National Referral Center for Interstitial Lung Diseases

Background: Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP). Objective: To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF. Methods: A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed. Results: The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns. Conclusion: The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient.