Background: Many people require resource intensive care near the end of life (EOL). This care is often low-value, leading to limited or no benefit, or causing harm to patients and families. In response to a ministerial priority area around enabling high-value care, a project team within Clinical Excellence Queensland was tasked with addressing this issue.

 

Aim: The project aimed to identify an appropriate solution to empower multidisciplinary clinicians across Queensland to deliver high-value care for people with life-limiting illnesses. 

 

Methods: A series of clinician-led workshops established, defined, and explored a problem around low-value care near the EOL, and developed a ‘solution’. Concurrently, a series of Kitchen Table discussions were conducted with consumers exploring the concept of high- and low-value care, and how they could be empowered to participate in decisions about treatment and care. Extensive design, and clinician and consumer user testing of the ‘solution’ were led by a User Experience Designer.

 

Results: A generic patient decision aid (PDA), named the Care Companion, was developed as the ‘solution’ in response to the defined problem: “People with a life limiting illness, and those involved in their care, often don’t receive the information and support they need to fully participate in shared decision-making about treatment and care that is right for them.” The PDA (named Care Companion) supported shared decision-making between patients and clinicians by providing information about the available treatment options, the associated risks and benefits, uncertainties associated with each option, and a patient value clarification exercise. It was developed in an electronic and paper format for use across Queensland.

 

Conclusion: The PDA was developed in response to identified need for greater shared decision-making for people with life-limiting illness. Current work is underway to exploring implementation of the PDA in the clinical setting to enable high-value care at the EOL.