Choice at the end of life: new research on people’s preferences

22nd July 2024

The BuildCare research team at the Cicely Saunders Institute has published research on where people choose to be cared for. The latest study looks at where people prefer to die and where they actually die. It’s important because it shows how well end-of-life care is working. Sometimes, what people want and what happens can be different, and this study tries to understand why.

The study used data from two surveys about people who received special care in the last three months of their lives in Ireland. It looked at why people might prefer to die at home or in a hospital and whether their wishes matched what actually happened.

The study was done in four different regions in Ireland, each with different levels of special care available. The study analysed combined data from two previous mortality follow-back surveys: the Economic Evaluation of Palliative Care in Ireland (EEPCI) and the Irish component of International Access, Rights, and Empowerment (IARE I) – part of the BuildCare programme funded by The Atlantic Philanthropies and Cicely Saunders International.

The average age of the people in the study was 77 years old. Half were men and half were women. About 19% lived alone, and 64% had cancer. The data was collected from 2011 to 2015, with about 342-351 people in the study.

Around 51% of people died where they wanted to. People who lived alone were less likely to want to die at home and less likely to actually die at home. But living alone in itself didn’t affect whether their wishes matched what actually happened.

The study shows that it’s important to look at both what people want and what actually happens. Sometimes, people choose based on what is possible, not just what they want. It also highlights the need for good community-based support –  home care, making hospital discharge more straightforward, and management of complex conditions at home –  so that people can be cared for in the place they prefer. Extending and offering meaningful choices to people enhances their quality of life and alleviates suffering.

Smith S, Brick A, Johnston B, Ryan K, McQuillan R, O’Hara S, May P, Droog E, Daveson B, Morrison RS, Higginson IJ, Normand C. Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence. J Palliat Care. 2024 Jul;39(3):184-193. doi: 10.1177/08258597241231042. Epub 2024 Feb 25. PMID: 38404130; PMCID: PMC11097611.