High Benefit Care at the End of Life (HBCEL) has been identified by the Choosing Better Care Together (CBCT) Program as a priority area for Queensland Health. The project will utilise a clinician led, co-design methodology with participatory consumer engagement, to develop appropriate solutions and resources to guide multidisciplinary clinicians to deliver high benefit, person-centred care, from the point of life-limiting illness diagnosis until the end of life. Understanding the patient journey and empathising with the patient, their family and / or carer and all healthcare professionals involved in providing care, is paramount to the project’s success.
High Benefit Care at End of Life (HBCEL) Project
To develop appropriate solutions and resources to guide multidisciplinary clinicians to deliver high benefit, person-centred care, from the point of a life-limiting illness diagnosis until the end of life.
The overarching anticipated project benefits (solution dependent) are:
- Maximising holistic interventions that confer benefit to the person and family by delivering healthcare that is better aligned with the person’s preferences, wishes and directives (including Advanced Care Plan documents)
- Better support the person in their health care choices following a life-limiting illness diagnosis
- Enabling the delivery of health outcomes that are beneficial, clinically achievable, and realistic for the person during care at the end of life
- Enhancing the use of current, limited resources, and minimise clinical interventions that yield marginal benefits at a disproportionately higher cost
- Better understand clinician behaviour and drivers for decision-making in care at end of life
- Developing system enablers that will support improved utilisation and measurement of clinical services in the care at end of life
In August 2019, the Queensland Clinical Senate (QCS), in partnership with the Statewide Clinical Networks, brought together over 170 clinicians, consumers and health executives from across the state to identify potential low benefit care and interventions. This work concluded with a suite of recommendations for change.
In response, Queensland Health translated the recommendations into the Choosing Better Care Together (CBCT) Program which aligns with the 2019 Ministerial priority area of Value – Delivering what matters, with high benefit care at end of life identified as one of the priority areas.
The COVID-19 pandemic changed the health environment in Queensland considerably, and in March 2020, the program was paused for several months. The re-scoped program is strongly aligned with the recommendations of the Reform Planning Group which is tasked with identifying how best to harness the opportunities arising from the pandemic to achieve the best possible health and healthcare for Queenslanders. Low value care and value-based health care have been identified as key priorities for delivering an effective and sustainable Queensland health system into the future.
The end of life is a universal health outcome, and there comes a time where further attempts at life prolongation will become burdensome, potentially unwanted and expensive, leading to poor patient and system outcomes. This delivery of unwanted, potentially invasive interventions and undesired hospitalisations towards the end of life are examples of low-value healthcare. Low-value healthcare can be defined as care that confers little or no benefit, may lead to patient harm, is not aligned with patient preferences, or yields marginal benefits at a disproportionately high cost (Scott et al., 2017).
The project is utilising a clinician led, co-design methodology with participatory consumer engagement to identify and develop solutions and resources.
A multidisciplinary Working Group has been established that consists of clinicians (medical, nursing and allied health), health consumers and health administrators. The working group will collaborate to define the current problem and potential causes of the issue(s) before designing and constructing appropriate solutions that are fit for purpose and relevant to end users.
Implementation of the identified and developed solutions is not within the scope of this project. Solutions identified that are unable to be addressed within the scope of this project will be captured for consideration post 30 June 2021.
A process evaluation framework is under development.
Due to the co-design methodology of the project, evaluation and results are dependent on solutions that will be identified or developed.
In these early stages of the project there are no significant lessons to be learnt.
Australian Commission on Safety and Quality in Health Care. National Consensus Statement: Essential elements for safe and high-quality end-of-life care, ACSQHC: Sydney, 2015
KPMG. (2020). Investing to Save – The economics of increased investment in palliative care in Australia.
Queensland Health Care at End of Life Implementation Plan 2015-2025
Queensland Health Clinical Service Capability Framework for Palliative Care v3.2
Queensland Health Ministerial priority rapid results area: Value – Delivering what matters, 2019.
Queensland Health Statewide strategy for end-of-life care, 2015
Scott, I. A., Soon, J., Elshaug, A. G., & Lindner, R. (2017). Countering cognitive biases in minimising low value care. Medical Journal of Australia, 206(9), 407-411. doi:10.5694/mja16.00999
Palliative Care Australia National Palliative Care Standards, 2018
Palliative Care Australia Palliative Care Service Development Guidelines, 2018