Place of Care and Death
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.
1 September 2013
10 June 2013
Evidence on home palliative care: charting past, present, and future at the Cicely Saunders Institute - WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation
The need for home palliative care is increasing globally as the overall number of deaths rise and home remains where most people prefer to die and where most spend their last months of life. Research must accompany this growing demand and inform service developments. Barbara Gomes and Irene Higginson highlight key findings by our team at the Cicely Saunders Institute that have informed policy in the UK, Europe, and beyond, influencing clinical practice and training.
They also share the lessons learnt in the process of conducting research on aspects related to home palliative care over the last 15 years. The authors conclude by presenting priorities for future research, expressing the Cicely Saunders Institute's commitment as the WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation to continue helping the development of quality, accessible, and cost-effective home palliative care for the generations to come.
13 May 2013
New Cochrane review shows that expert home palliative care teams double odds of dying at home and reduce symptom burden for patients with advanced illness
This systematic review was led by Barbara Gomes, Natalia Calanzani and Irene Higginson from the Cicely Saunders Institute at King’s College London, in collaboration with colleagues at the King’s Centre for the Economics of Mental and Physical Health and at the geriatrics unit of the Princess Grace Hospital Centre in Monaco.
The authors analysed information of over 37,000 patients suffering from advanced conditions (the majority with advanced cancer) and over 4,000 family caregivers. Through meta-analysis, it was found that home palliative care services double patients’ odds of dying at home, which is where most people would prefer to die. The authors calculated a measure of numbers needed to treat to benefit (NNTB) showing that for one additional person to die at home, five more would need to receive home palliative care services rather than just usual care. The review also shows strong evidence that home palliative care services reduce symptom burden for patients, without impact on family caregiver grief.
Cochrane reviews represent the highest level of evidence on which to base clinical treatment decisions. This publication provides clear and reliable evidence that home palliative care services help patients to die at home with reduced symptom burden. The findings justify investment in specialist home palliative care services and integration of the development of these services in national health policies and strategies.
The full publication is available at the Cochrane Library.
Source: Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews 2013, Issue 6, Art. No.: CD007760. DOI: 10.1002/14651858.CD007760. pub2.
26 March 2013
CSI impact report: Understanding and achieving preferences for place of care and place of death (PDF, 820KB)
There is no doubt that early work on the identification of public preferences in relation to preferred place of death, compared to data on actual place of death, played a significant part in the development of UK public policy in end of life care.
CSI work was instrumental in a process that set the achievement of preferences as the dominant framework for service development and improvement in end of life care. This triggered several cycles of service improvement across the system aimed at developing an understanding of how to better design and develop more effective and cost-effective models of care.
19 February 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.
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 available online.
16 February 2012
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 available online.
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.
Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain
19 January 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.
2 August 2011
Reversal of the British trends in place of death: Time series analysis 2004-2010
“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
Gomes B, Calanzani N, Higginson IJ. Reversal of the British trends in place of death. Time series analysis 2004-2010. Palliative Medicine, 18 January 2012.
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 0203 299 5227).
Tel: 0207 848 5628/5683/5516