131 consumers and carers from 13 different towns and cities across Queensland have recently participated in 19 Kitchen Table Discussions to talk about what high benefit care at end of life means to them.
Health Consumers Queensland was contracted by Clinical Excellence Queensland (CEQ) to undertake statewide consultation with Queenslanders about their experience with care at end of life.Sometimes, the treatment and care provided to those who have been diagnosed with a life limiting condition (including advanced disease and frailty) does not align with the wishes and values of those who receive it. This project sought to understand what high and low value care means to consumers, in addition to better understanding how consumers can be empowered to participate in decisions about treatment and care that is right for them.
Understanding the needs of the consumer, right from the point of diagnosis of a life limiting condition, is essential for developing strategies that ensure the delivery of high benefit, patient centred care at end of life. Two thirds of the Kitchen Table Discussion participants had themselves been diagnosed with a life limiting condition or cared for someone who has. Yet, the term ‘high benefit care’ was unfamiliar to many and people had very different understanding of what it means in relation to a life limiting condition.
It was important for many participants that people can be assisted in making informed choices and decisions and that families and care-givers are also heard and involved in decision-making.
The second part of the project involved a numberr of Kitchen Table Discussion hosts and participants participating in a series of focus groups to develop a consumer friendly decision aid for people diagnosed with a life limiting condition. The Care at the End of Life project team within Queensland Health are keen to progress the decision-aid to implementation.
This important project was led by HCQ’s Anne Curtis, Engagement Consultant – Specific Projects with support from Kirra Wilson, Administration Officer. The completed findings from the discussions have now been shared with Queensland Health’s Healthcare Improvement Unit, Clinical Excellence Queensland.