There is a growing understanding within the health sector of what is important to people at the end of life, according to a report from Public Health England’s (PHE’s) national end of life care intelligence network (NEoLCIN).
The ‘What We Know Now 2014’ report finds that home continues to be the preferred place of death for people in England, followed by hospices and care homes. The proportion of people dying at home or in care homes has increased from 35% (166,749) in 2004 to 44% (207,764) in 2013. The number of people dying in hospitals has dropped by 50,000 since 2004. In 2013, this was less than half of all deaths (227,748).
The factors most important to people at the end of their life are having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity.
Professor Julia Verne, Clinical Lead at PHE’s NEoLCIN, said:
It is of course appropriate for some patients to die in hospital but this year’s findings are encouraging as our understanding of what patients want continues to improve. There is still work to be done to ensure we keep focus, not just on the numbers but on people’s experience of dying. However we are now a step closer to balancing out the number of people using hospital and community care.
Professor Bee Wee, NHS England’s National Clinical Director for End of Life Care, said:
This important publication brings together recent evidence about end of life care. Gaining a more nuanced and detailed understanding of what the evidence tells us about end of life care, and people’s preferences and experiences, is important to help guide our work in the right direction. There remains a challenge to ensure that the quality of care for people approaching the end of their lives, and those important to them, is as good as it can be, regardless of where this takes place.
Other findings include:
- More people want to be in a hospice the closer they get to death – rising from 4% to 17% to 28% in the final year, months and days before death respectively. This shift is most dramatic for those with experience of hospice care; in last days of life, hospice becomes the preferred place to be for those with experience of hospices, 44% say they want their last days at home, and 55% in a hospice.
- There is more evidence showing what works in end of life care. Patients with an electronic palliative care co-ordination system (EPaCCS) record and those receiving palliative care services are more likely to die in the place of their preference.
- 2 in 5 people with dementia die in hospital. Since 2006, the trend has been decreasing for hospital deaths for people living with dementia.
- The proportion of GPs reporting they had never initiated a conversation with a patient about their end of life wishes fell from more than a third (35%) in 2012 to a quarter (25%) in 2014.
- ‘What We Know Now’ is a compilation of new data and intelligence produced by NEoLCIN, together with research published over 2014 from a wide range of academic, clinical and charitable organisations, universities and charities. It supports the ‘national end of life care strategy’ which sets out the direction of travel to provide all adults nearing the end of life, regardless of diagnosis, access to high quality care and supporting more people to realise their choices and preferences for care.
- The national end of life care intelligence network (NEoLCIN) aims to improve the collection and analysis of information related to the quality, volume and costs of care provided by the NHS, social services and the third sector to adults approaching the end of life. This intelligence will help drive improvements in the quality and productivity of services.
- Figures on distribution of place of death in England, 2013 and 2004, can be found on page 17 of the report.
- The full What We Know Now report is available online from the national end of life network.
- Public Health England (PHE) exists to protect and improve the nation’s health and wellbeing, and reduce health inequalities. It does this through world-class science, knowledge and intelligence, advocacy, partnerships and the delivery of specialist public health services. PHE is an operationally autonomous executive agency of the Department of Health. Visit our website www.gov.uk/phe or follow us on Twitter @PHE_uk or Facebook www.facebook.com/PublicHealthEngland.