Empowering Patients - Place of Care (EPPOC)
A core value for palliative care has been to empower patients facing the end of their life by ensuring appropriate care is delivered where they wish to spend their last days. Most people across developed countries do not die at home, although this is the wish of the majority. For example, around half a million people die in England each year, 28% from cancer. Most deaths occur in NHS hospitals, with less than 20% occurring at home (26% in cancer).
The aim of the EPPOC project, in place since the creation of Cicely Saunders International, is to generate comprehensive and rigorous knowledge of place of death, taking in consideration individual, societal and health care implications. In EPPOC, we investigate reasons for variations in place of care and death, differences between patient and family perspectives and how place of death relates to preferences, care arrangements and outcomes for patients and their families. Our goal is to help improve end of life care to levels that meet the expectations, needs and preferences of patients and their families.
"The place where he died was old and bare. The paintwork was poor and there were no pictures. I would have had him home if I'd known about the care he could have had. I thought it was only available privately. Why don't they tell you you can take them home?"
In earlier steps of the project, a systematic review analysed a large number of studies with 1.5 million cancer patients from many countries and reported strong evidence on the influence of several factors on the place where patients die. These include the availability of home care and extended family support, and the preferences of patients and their families. The findings had important implications for UK policies aiming to enable more people to die in the place of their choice. Indeed, the work was referred to in the 2006 White Paper on Health and presented at the 2007 National Cancer Research Institute Conference, the UK‘s largest cancer conference and showcase of British and international cancer research.
In 2008 and looking into the future, the EPPOC team published a pioneering set of projections of numbers of deaths by place of death for England & Wales until 2030, discussing the implications for care of rising numbers of deaths. The findings again had impact on UK policies; the team was invited to present to the Department of Health and the work was cited in their End of Life Care Strategy (2008-11) and in the National Audit Office's report on end of life care (November 2008).
The EPPOC team is now investigating ways of improving the quality and the cost-effectiveness of end of life care for patients with cancer and their families. Barbara Gomes, Cicely Saunders PhD fellow, is coordinating a postal survey with 500 bereaved relatives in London looking at the care provided in the last three months before their relative's died. The study is called the QUALYCARE study and examines variations in the care, costs, preferences and outcomes associated with place of death in cancer. The Department of Health and local NHS services endorsed the study and the pilot stage has now been completed with bereaved relatives of 20 cancer patients; the main stage starts in early 2010. Barbara has also been awarded a grant from the National Institute for Health Research to review the literature on people's preferences for place of care and death in terminal illness and economic evaluations of home palliative care. This is a ‘Cochrane review', known to be the highest level of evidence on which to base clinical treatment decisions. The protocol was published in April 2009 in the Cochrane Library.
New report on Preferences and Place of Death
"Local preferences and place of death in regions within England"
by Barbara Gomes, Natalia Calanzani, Irene J Higginson (August 2011)
This report, commissioned by the National End of Life Care Intelligence Network and published by Cicely Saunders International, is now available on the National End of Life Care Intelligence Network website.
The report provides up to date regional information on people's preferences for place of death and draws attention to the gap between preferences and reality in England. We hope the information helps plan and improve end of life care, allowing more people to die at their preferred place.
For more information, contact:
barbara.gomes@kcl.ac.uk