We present a 2-year patient journey through four Australian hospitals and three states to highlight barriers to treatment and the need for responsive, patient-centred models of education and care.
A 45-year-old Warumungu woman from Tennant Creek Northern Territory (NT), Australia, presented to Tennant Creek Hospital (TCH) with severe dyspnoea. A saddle pulmonary embolism was diagnosed at Alice Springs Hospital (ASH), NT.
The patient re-presented to TCH 18 months later with right heart failure. Another transfer to ASH facilitated an echo showing severe pulmonary hypertension. Further transfer to the Royal Adelaide Hospital (RAH) South Australia, diagnosed chronic thromboembolic pulmonary hypertension (CTEPH). Pulmonary endarterectomy was planned at the Alfred Hospital, Melbourne, Victoria.
The patient returned to Tennant Creek pre-operatively, receiving close follow-up from Cardiac Nurse Consultants at ASH via phone. The patient stopped alcohol and smoking, and had excellent medication adherence. Despite this, symptoms progressed. Surgery was delayed due to family commitments (carer for multiple children) and fear of surgery (complex procedure to explain in a city far from home).
Surgery was successful. The patient reported full understanding of her surgery only after seeing a photo of what was removed.
Conclusions
Our patient’s experience underscores the importance of continuity of nursing care and the role of visual-based learning in enhancing understanding for Aboriginal and Torres Strait Islander patients. This empowers patients to make informed decisions about their health in a way that aligns with their values and priorities. Further improvement is needed to deliver a model of care that incorporates two-way learning and allows us to walk alongside patients on their journeys.