How are hospitals talking about end-of-life? The consumer carer perspective on communication at end-of-life in hospital.

“Five of us waited for five hours for the information… We later found out the consultant went home. I think the conversation was too hard for them.” A focus group with consumers and carers to discuss communication at end-of-life in WA hospitals was held in February 2015. Participants were adults with advanced life-limiting illness (or their families) who were receiving or had received end-of-life care in a WA hospital in the last five years. The purpose was to provide a carer/consumer perspective to the WA Clinical Senate to inform their debate in March 2015 on end-of-life care in acute health settings. The WA Clinical Senate provides authoritative clinical advice to WA Department of Health Executive for decision on healthcare reform direction in WA. Seven key themes were identified including patient focus – respecting what they want; lack of general palliative care knowledge; communication – upfront, timely and respectful; early conversations about goals of care – at diagnosis; involvement in the decision-making process; continuity of care across health services; and workforce capacity. The key themes and issues raised are not unique to palliative care, but are applicable to the broader healthcare system when providing care at end-of-life. The consumer/carer perspective was a major influence on the WA Clinical Senate debate which concluded that transformative, system-wide, cultural change towards end-of-life care in acute health settings is required in WA.