Assessing the quality of end-of-life care in systemic sclerosis.

Abstract

Background: Systemic sclerosis (SSc) is a rare autoimmune disease with the highest mortality among rheumatic diseases, yet little is known about the quality of end-of-life care in SSc.

Aims: To evaluate end-of-life care in SSc against the Australian National Consensus Statement's Essential Elements for high-quality end-of-life care and compare care between palliative care unit (PCU) and non-PCU deaths.

Methods: This retrospective single-centre study included adults with SSc who died between 2013 and 2023 at a tertiary SSc referral centre. Terminal admission records for expected deaths were mapped to the National Consensus domains. Fisher exact and Mann-Whitney U tests compared PCU and non-PCU deaths.

Results: Thirty-three patients died. Six unexpected deaths were excluded, leaving 15 PCU and 12 non-PCU deaths. Multidisciplinary involvement was extensive, particularly from rheumatology and allied health. Palliative care engagement was common, goals of care were frequently reviewed and communication about dying with next-of-kin occurred in most cases. Patients dying outside the PCU had lower rates of documented recognition of dying, significantly greater intensive care involvement and more frequent medical emergency team calls. They also received more potentially non-beneficial investigations and treatments during the final 48 h of life and incurred substantially higher terminal admission costs.

Conclusion: End-of-life care in SSc was broadly consistent with the National Consensus standards, identifying strong rheumatology involvement, multidisciplinary care and frequent palliative care referral. However, differences in care according to site of death highlight opportunities to increase proactive palliative care involvement and regular review of goals of care to ensure high-quality end-of-life care across all settings.