Dr Barbara Gomes, Research Fellow at the Cicely Saunders Institute, King’s College London, talks about a review on place of death preferences published by the journal BMC Palliative Care and chosen as the ‘Editor’s pick’.
Recently we have seen countries such as the United States and the United Kingdom implementing several strategies to help more people to die at home, which is considered the preferred place to die for the majority of the population. A systematic review on preferences published in 2000 (Higginson & Sen-Gupta 2000), is often cited to justify this statement.
At the Cicely Saunders Institute (the world’s first purpose-built Institute of Palliative Care – at King’s College London, UK) we have a research programme aimed at understanding where and how people die, what their preferences are, and how they can be met. For more than 15 years we have been carrying out research in place of death, aiming to provide the best evidence so people can die well while having their preferences met. We felt that it was necessary to update the earlier review by Irene Higginson and George Sen-Gupta, to explore differences in preferences and which questions have been used to assess them. We also investigated for the first time how often people’s preferences changed over time, since this was an area in great need of accurate and up-to-date evidence to inform clinical practice.
Our review (Gomes et al 2013) included 210 studies, and it confirms that most people prefer to die at home. However, it also shows that there is a substantial minority who would prefer to die in other places. Moreover, the review shows that preferences vary across different population groups. For example, estimates of a home preference are more consistent amongst studies with members of the public (ranging from 52% to 92%). We also found indications that caregivers might choose home less often than patients, but only a few studies carried out tests to check if this difference was statistically significant.
Importantly, the review shows that only about a third of included studies were clear on the questions used to assess preferences. When we checked the questions that were available, we found that there was no consistency on the questions used. For example, in one study the question was: “Would you like to die at home?”, while another study asked “If you were terminally ill, where do you think you would want to die?” These variations on how questions are asked (or not knowing which question was used) make it more difficult to compare and make sense of the evidence; it may indeed be one of the reasons for the heterogeneity in the findings.
We found only a few studies that examined individual changes of preferences over time (ten studies); even fewer carried out statistical tests to assess how significant the changes were. The findings suggest that around a fifth of people change their minds, although this is an issue that needs to be further investigated, with robust prospective studies.
The results of this new review are important as they show that policies aiming to support more people to die at home are in line with what most people want, but we should not forget about all those who have different preferences. We also need to know more about how often, and why people change their minds through the course of their illnesses. Although we have achieved a lot in research on preferences for place of death, we still have some work to do before we can fully understand them, in order to help more people to die in their preferred place.
1. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. Journal of Palliative Medicine 2000; 3(3):287-300.
2. Gomes B, Calanzani N, Gysels M, et al. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013, 12:7 doi:10.1186/1472-684X-12-7. (You can access this systematic review for free at: http://www.biomedcentral.com/1472-684X/12/7)
Find out more…
- Read more information about the Cicely Saunders Institute’s place of death programme.
- Read more posts on dying at home on the EAPC blog: The lure of dying at home: Impossible dream for the oldest old and Proving the effectiveness of home care teams
Join us in Prague…
If you’ve enjoyed this post, you can hear more about Barbara’s work at the 13th World Congress of the EAPC. She’ll be speaking on ‘Place of death correlates with bereaved relatives’ grief intensity: A population-based case control study of home and hospital death’ and ’Social diversity in palliative care: Ways forward for a rising challenge’.