Death in ILD - Why arent we talking about it?

Abstract

Background: There is growing appreciation for early palliative care (PC) input in the management of patients with interstitial lung disease (ILD). Patients receiving PC experience improved quality of life, but it is our anecdotal experience that PC input may not always be introduced promptly. Aim: The aim was to increase the regularity with which the ILD MDT discussed end of life (EOL) care and to improve the quality of patient care. Methods: 21 ILD Clinicians working in a tertiary unit were surveyed and ILD inpatients were interviewed. The results of the initial survey led to three interventions:(a)Regular attendance of the PC team at inpatient ward reviews,(b) Routine implementation of the surprise question; “Would you be surprised if this patient died within the next 12 months” and (c)Written documentation identifying patients appropriate for PC. Results: 81% of clinicians surveyed felt that EOL conversations with patients could be timelier. Reasons cited for delayed discussion included ambiguity of patient wishes, unpredictability of disease behaviour and uncertainty of prognosis. Prior to the interventions, only 40% of ILD inpatients had PC discussed; within 14 weeks this increased to 100%. There was an average increase of 3.21 minutes per patient in discussion time. The number of referrals to PC increased, as did patient awareness of advanced care planning. The intervention also prompted 2 new transplant referrals. Patient experience interviews were conducted and responses were universally positive. Conclusion: Implementation of PC conversations in this group can be challenging due to the difficulty in predicting trajectory of disease. Routine involvement of the PC team is valued by inpatients with ILD and may improve outcomes.