Population preferences for treatment in life-limiting illness: Valuing the way time is spent at the end of life
An article written by Jane Hall, Patricia Kenny and Deborah Street, Centre for Health Economics Research and Evaluation at the University of Technology Sydney
It is well established that the costs of care generally increase at the end of life, with much of that due to hospital care. [1] Some query how much of this care really benefits patients. [2] And most people, if asked, say they would prefer to die at home rather than in hospital. However, ‘Would you prefer to die at home or in hospital?’ is a simple question that does not allow for differences in circumstances, or the complexities that go with late stage care. [3] This led us to ask whether we could do better in understanding what people would want in terms of care at the end of life.
Our latest study explores how people are willing to trade quality of life for extra survival, taking into account time in hospital vs home, and also the extent to which time at home is affected by the time with toxicities associated with treatment. [4] Since we are interested in community preferences, our sample was drawn from the adult population rather than patients and/or their carers specifically. We felt it was very difficult for most people to imagine what it is like to have only a few months left to live, and to choose a treatment option. Instead, in our approach, respondents were shown the end of life experience for 3 different cancer patients. These patients were the same in age and other characteristics, with one having palliative care and the others two different chemotherapy regimens. All patients lived for a time varying between 6 and 24 months, with different amounts of time spent in hospital, attending hospital for treatment, staying at home with different levels of disability due to disease or treatment effects. Respondents were asked which patient they thought had the best end-of-life experience.
By choosing the sets of cancer patients that respondents saw judiciously we were able to analyse how people make trade-offs between characteristics and outcomes of treatments. What we found is that people have quite different preferences for end of life care. Ignoring those respondents who we could demonstrate were not engaged with the survey, there is one group, about one third of survey respondents, who wanted longer survival times irrespective of poorer quality of life. A second group, about one quarter of our study respondents, favoured less time in hospital and/or time at home being incapacitated over longer survival times. Another group strongly favoured palliative care while the final group really wanted to avoid palliative care.
What does this mean for policy and service planning? Patient-centred care is well accepted at the clinical level, ensuring that patient needs and wishes are respected. [5] However, patient- or person-centredness is more difficult to incorporate in service planning and policy. [6] At this level, it means that services should offer flexibility to enhance patient and family choice. Targets like improving palliative care take-up or increasing home deaths may be appropriate where services are under-provided but should not be seen as an end in themselves. We suggest a move away from fee-for-service payment to more innovative funding payments could be useful in achieving better end-of-life care.
References
- Kenny P, Liu D, Fiebig D, et al. Specialist palliative care and health care costs at the end of life. Pharmacoecon Open. 2024;8(1):31–47.
- Carter HE, Winch S, Barnett AG, et al. Incidence, duration and cost of futile treatment in end-of-life hospital admissions to three Australian public-sector tertiary hospitals: A retrospective multicentre cohort study. BMJ Open. 2017;7(10):e017661.
- Gerber K, Hayes B, Bryant C. ‘It all depends!’: A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers. Palliat Med. 2019;33(7):802–11.
- Kenny P, Street DJ, Hall J. Population preferences for treatment in life-limiting illness: Valuing the way time is spent at the end of life. Med Decis Making. 2025;0(0). doi:10.1177/0272989X251346203
- Nolte E, Merkur S, Anell A. Achieving person-centred health systems: Evidence, strategies and challenges. Cambridge (UK): Cambridge University Press; 2020.
- Duckett S. Aligning policy objectives and payment design in palliative care. BMC Palliat Care. 2018;17:42.
Authors

Jane Hall
Distinguished Professor of Health Economics
Centre for Health Economics Research and Evaluation, University of Technology Sydney

Patricia Kenny
Adjunct Fellow
Centre for Health Economics Research and Evaluation, University of Technology Sydney

Deborah Street
Professor
Centre for Health Economics Research and Evaluation, University of Technology Sydney