National approach to assess consumer and carer experience.

Project Overview: How patients and caregivers experience the care they receive is a vital measure of care quality. The purpose of this project is to develop a set of tools to provide individual organisations with valid measures of real time patient and caregiver experience of end-of-life care that are standardised at a national level to inform local, state and national improvement activities. A survey based on tools identified and adapted from a scoping review of current measures of experiences of care at the end of life will be piloted in palliative care services currently participating in the Palliative Care Outcomes Collaboration (PCOC) that meet the project eligibility criteria.

Project status: In progress.

2.2a What factors influence consumers’ end-of-life treatment decision-making? A systematic review.

Project Overview: The overall aim of this review is to identify and explore the factors that influence consumers’ end-of-life treatment decision-making. For the purpose of this systematic review, the term consumers refers to persons with life limiting illnesses and their primary informal carers (e.g., family members). Scientific and grey literature sources were searched, for example PubMed, relevant databases on the EBSCOhost platform and Dissertations & Theses database, from the year 2000. Analysis continues. Findings will inform the development of an intervention to assist consumers to make well informed end-of-life treatment decisions.

Project status: In progress.


2.2b Evaluation of interventions to improve end of life decision making.

Project Overview: Informed by the systematic review outlined in project 2.2b, the overall aim of this study is to develop, implement, and evaluate strategies to improve end-of-life decision-making.

Project status: In progress.