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Researching where and how people die
A core value for palliative care is to empower patients facing the end of their life by ensuring appropriate care is delivered where they wish to spend their last days. The Cicely Saunders Institute aims to provide the best and latest evidence to make this possible. Our research team conducted a series of studies over the last 15 years looking at where and how people die, and their preferences.
26 March 2013
New study shows that home and hospice deaths have steadily increased in England since 2005
This major analysis of trends in place of death published by the Scientific Journal PLoS Medicine shows that there has been an increase in home and hospice deaths since 2005, accompanied by a decrease in hospital deaths. Dr Gao Wei, Professor Irene J Higginson and colleagues at the Cicely Saunders Institute analysed death registrations of over two million adults who died of cancer between 1993 and 2010. Authors report a sustained reversal in the trends of hospital deaths; this reversal coincides with the launch of the National End of Life Care Programme in November 2004 in England. Authors emphasise that the majority of the population still die in hospitals, which is the least preferred place of death for many. They also report that people who are single, widowed or divorced, aged over 75, die from blood cancer or lung cancer and live in more deprived areas are less likely to die at home. The full publication is available online for free here.
19 February 2013
New systematic review of preferences for dying at home
Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. In this systematic review, Barbara Gomes and colleagues at the Cicely Saunders Institute examined the heterogeneity in preferences for dying at home and explored, for the first time, changes of preference with illness progression. The paper is a major update of a systematic review back in 2000, including over 200 studies internationally. It is also the latest output of a long-term research programme on place of death, led by Barbara Gomes and Irene Higginson and funded by Cicely Saunders International.The full publication is freely available here.
Understanding place of death for patients with non malignant conditions
The factors influencing place of death in cancer have been described, but much less is known about place of death in non malignant conditions such as chronic heart failure, lung disease, and neurological conditions. This systematic review synthesised evidence for place of death preferences, factors influencing place of death, and end of life transitions, in non malignant conditions. The authors, led by Dr Fliss Murtagh, found that a preference for a home death is less prevalent for patients with non-malignant conditions than for cancer patients, and that the presence of absence of a family or informal carer is a key component in achieving home death. Minority ethnic groups and those with lower socio-economic status achieve lower rates of home death. Older people are more likely to die in care homes, and advance care planning is especially important as preferences in this group are complex, and evolve over time. Advance care planning is also important for those with end-stage heart or lung disease where circumstances can change rapidly, and in conditions with longer trajectories such as long term neurological conditions. It was also found that increased resource for the delivery of palliative care early in the illness trajectory, across non-malignant conditions, has the potential to reduce hospital deaths. Clear implications for clinical practice and policy have emerged from this evidence. In addition, areas where evidence is lacking, and further research is necessary, were identified. The full report is freely available here
This project was funded by the National Institute for Health Services and Delivery Research Programme (project number 08/1813/257). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.
16 February 2012
Our paper published in Annals of Oncology reports a cross-national survey conducted in 2010 by King’s College London in partnership with several other universities and associations. We interviewed 9,344 members of the general public in seven EU countries about their views on end-of-life care.
We found that the majority across all seven countries preferred to die at home; this urges policies on end of life care across Europe to concentrate on home care.
The findings also suggest that a preference to die at home may be more stable than previously thought as we found no difference between people with and without experiences of illness, death and dying. Our analysis also suggests that the ‘baby-boom generation’ born after the Second World War (who are now in their 60s) will still have a strong preference for home death in 10–30 years time.
The survey was supported by the European Commission as part of the project PRISMA.
“The team at the King’s College London, Cicely Saunders Institute are to be congratulated on another excellent analysis in trends in place of death in England and Wales. The findings are very encouraging as the downward trend in the proportion of patients dying at home appears to have been reversed in the past few years. However, there is still a very long way to go to ensure that people approaching the end of life are cared for in the setting of their choice.”
Professor Sir Mike Richards (National Cancer Director, National Clinical Director for End of Life Care)
“It is so important to respect your loved one’s choice about where to die. It gave my mum such peace of mind to be able to choose where she ended her days, which in turn gave me the strength to enable her wishes be granted. Horrendous as losing my mum was I feel so honoured and glad that I spent those last months with her at home.
To have evidence that shows that more people’s wishes are being granted is reassuring and hopeful that services are changing to enable this to happen. However, much more clearly needs to be done so that everyone’s preference is respected and there is an equality of choice for all.”
Kirstie Newson (carer and user representative)
Proportion of home deaths in England and Wales
The report was widely covered in the UK and several outlets in China. BBC Radio has also interviewed authors Irene Higginson and Barbara Gomes.
If you want to know what palliative care is about and what help and support are available for patients and families at home, in hospitals, in hospices, in care homes and other places you may find the three links below helpful. You are also most welcome to visit our Macmillan Information Support Centre (or call 020 3299 5229) , where Chiara De Biase (centre manager) and her team of volunteers will give you more information and support.