Death and dying have become increasingly medicalised experiences in recent generations. More than half of Australian deaths now occur in hospitals, where there is evidence that some patients receive non-beneficial treatments that can cause distress to individuals, families, and clinicians. An excessive focus on medical interventions has led to patients in hospital receiving non-beneficial, or ‘futile’, treatment up until the last days or hours of life.

Within cost-effectiveness analysis, the gold-standard outcome used to estimate ‘value’ is the Quality Adjusted Life Year (QALY), a generic measure that combines duration of survival with health-related quality of life. However, the QALY is increasingly recognised as an inappropriate measure of value in end-of-life settings as it cannot capture the important, non-health-related considerations of this phase, including death in the preferred place and the ability to say goodbye. A 2022 Lancet Commission article called for an awareness of the value of death in itself, yet this is at odds with established health economic methods.

Key to providing high-quality care at the end of life is an understanding of what is most important to patients and their family caregivers. Discrete choice experiments provide a quantitative method for eliciting preferences in situations involving complex trade-offs. These methods may provide valuable insight into how we define value within the context of economic evaluations of interventions at the end of life.

This seminar will provide an overview of Dr Carter’s recent work in the end-of-life care setting. This includes a quantification of the incidence, duration and costs of non-beneficial treatment in hospital admissions at the end of life and the factors associated with this; presentation of preliminary results from a randomised controlled trial to promote appropriate care at the end of life; results from a systematic review of discrete choice experiments in end of life settings; and early findings from a series of qualitative interviews exploring what it means to experience a “good death”. It will conclude with a reflection on how health economics methodologies can better account for what truly matters to patients and their carers at this final stage of life.

About the presenter 

Dr Hannah Carter is a health economist and senior research fellow at the Australian Centre for Health Services Innovation (AusHSI) at the Queensland University of Technology. She graduated with a Bachelor of Economics at UQ before completing her PhD at the University of Sydney in 2018. Her doctoral thesis investigated the productivity-related costs of premature mortality in Australia. Dr Carter’s current research program is focused on embedding economic evaluation within clinical trials and health services research to inform decision-making around high-value care. She has expertise in cost-effectiveness analysis and decision analytic modelling, with a growing interest in the use of discrete choice experiments to inform preferences in health care. Dr Carter has a particular interest in the application of health economic methods in the unique and complex setting of end-of-life care. She is also interested in the implementation and evaluation of integrated and virtual care models.