Can Dying With Scleroderma Be Dignified? A look at the evidence for palliative care for people with scleroderma

Can Dying With Scleroderma Be Dignified? A look at the evidence for palliative care for people with Scleroderma

Dr Julie McDonald, Respiratory and Palliative Care Physician, St Vincent’s Hospital Melbourne and Clinical Senior Lecturer, The University of Melbourne

This talk highlights the critical need for palliative care for patients with scleroderma, a disease with a high symptom burden and significant challenges at the end of life. Given the high prevalence of fatigue, breathlessness, pain, gastrointestinal dysfunction and psychological distress patients experience, early palliative care could be a considered standard management rather than a late-stage intervention. We propose a structured model of early palliative care for patients with scleroderma, which involves symptom management, advance care planning, and psychosocial support, provided hand in hand with disease orientated care. Early data suggests patients and caregivers find early integration of palliative care beneficial, but gaps remain. Evidence for effective symptom management strategies is lack…