Title: Geographical understanding of variation in place of death: the role of care services and end of life care improvement (GUIDE_Care Services)
Funder: Department of Health and Social Care

Abstract: Background The UK end of life care strategy has set a target to enable more people to die in their place of choice. Most people (85-90%) prefer to die at home or in a hospice. However, hospital remains the most common place of death (PoD), with great local variation in home and hospice deaths. In our NIHR project GUIDE_Care we have identified trends and patient factors associated with this variation. This explained a quarter of the variation and even less for cancer, dementia and some other Long Term Conditions (LTC’s) (~10%), prompting a further search for stronger determinants of where people die. This follow on study builds on the GUIDE_Care findings to investigate the potential role of service factors, provide national and local data to improve end of life care and better meet patient and family preferences. Aims and objectives To evaluate the role of service factors in place of death, to inform national and local end of life care improvement. 1) To evaluate the relative contribution of service factors in PoD; 2) To produce GIS maps to visualise patient and service factors adjusted for geographical variation in PoD; 3) To explore the inter-relationship of service and patient factors with PoD. Data and methods Design and setting: a population-based multi-level study in England. Data: we will use routine data sources at two levels: patient- and area-level. The former is the death registry data provided by ONS. The latter is primarily available in the public domain with no non-disclosure restrictions. The patient-level data includes records for all non-external causes of death, over a recent 5 year period (2008-2012), containing information on patient factors (eg. age, gender). We will investigate cancer (ICD-10: C00-C97) and other selected causes of death (eg. Dementia, LTC’s). Patient-level data is linked to area-level data through geographical identifiers. Analysis The outcome is PoD. We have identified three main groups of service factors: service provision, service utilisation and proximity to care facilities. In addition, we will calculate and adjust for population-based needs for palliative and end of life care. The relative contribution of service factors is evaluated at the area-level, in the context of patient factors and population based need. The PoD will be modelled as a proportion using beta regression, or as a count using Poisson regression. The R-square type measures are used to quantify the relative contribution of service factors. The residual variations are plotted using GIS maps to visualise the patient and service factor adjusted variation. The inter-relationship of service and patient factors with PoD is explored using Structural Equations Modelling (SEMs), or its alternatives. At patient-level, PoD is modelled as a multinomial variable and the clustering effect is accounted for under multilevel modelling or generalised estimating equation (GEE) framework. The results from area- and patient-level analysis are integrated and synthesised under the reported conceptual framework. Expected outputs These include scientific publications and conference presentations; reports for service users, commissioners, policy-makers and service providers; and, dissemination through traditional media briefings and social media (e.g. Twitter, YouTube, Podcasts).

Lay abstract: Around half a million people die in England each year, and this number is expected to increase 17% by 2030. If currents patterns of care continue, unchanged forecasts estimate we would need a 20% increase in hospital beds to maintain current levels of care. As treatments are developed to extend life, our population is ageing and increasingly people die following a chronic or progressive illness, requiring palliative care in the last months or weeks of life. The focus of care needs to shift from the ‘disease’, to the person with the illness and their family. Often people go into hospital, but for most, this is not their preference. Indeed many would prefer to be cared for at home for as long as possible and two-thirds of those who die would prefer to die at home. Consequently, the UK end of life care strategy set a target to enable people who die in their place of choice, usually home. However, although recent research has shown that for the first time in over 30 years, home deaths have slightly increased in the UK, hospital remains the most common place of death, with almost two-thirds of the people who die, dying in hospital. There is little information on how best to meet this national target. In our previous NIHR project GUIDE_Care we identified great local variation in where people died, ranging from <10% to 70% death at home across the UK. We examined this on a national basis and identified factors concerned with patient characteristics (e.g. marital status and age) which influenced the variation. However, this explained only a quarter of the variation and even less for cancer and some LTC’s (~10%). We suspect that services have a greater influence on where people die. This idea is supported by a small amount of research and an earlier literature review we conducted, but has never been examined thoroughly in the UK. Therefore, in this follow-on project (GUIDE_Care Services), we wish to examine the role of services influencing where people die. If we can identify service configurations that make it possible for more people to die in their place of choice, then we will be able to identify ways to improve care. GUIDE_Care Services is a population-based study. Thus we have a fully representative sample of the population, rather than a selected group. This gives us reliable and generalisable results. We will use information from national registers. This has the advantage of placing no burden on patients and families at such a difficult time in their lives, and is also cost-effective. The information is anonymised, so we cannot identify any individual person. The data is constantly checked to ensure that no personal details are reported. We will link the data collected from different databases regarding where people have died in an area, alongside information about services available in that area. We will examine service factors in three ways: services provided, services used and proximity to care facilities. We will then assess the roles of service factors in where people die, by major disease groups, and also by local areas (e.g.local authority or general practice). The findings will be disseminated widely and tailored according to different audiences including service users, commissioners, NHS management and, policy-makers and service providers. We have integrated patient and public involvement into all stages of the project, from planning to dissemination.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE