Coherence of end of life statistics in the UK

Introduction

The devolved nature of UK health policy means that health services, including end of life care, are run differently across the four UK countries. These differences can be reflected in how data may be defined and collected.

This review of end of life care statistics in England, Scotland, Wales and Northern Ireland was prepared by the UK Health Statistics Steering Group’s end of life care theme group.

Place of death

Death certificates record the place of death (POD) for all people who died. For most people, the place of death is also the final place of care.

Publications of POD statistics for England, Northern Ireland, Wales, and Scotland are summarised in the section ‘Place of death statistics in the 4 nations of the UK’ below.

The most detailed categories of POD are published by the Office for National Statistics (ONS) in England and Wales. These are combined into broader categories of hospital, home, care home, hospice and other places for England by the Department for Health & Social Care (DHSC). There are also breakdowns by these broader categories for Wales as well as England in the weekly deaths from the ONS. Similar categories are used in Scotland and Northern Ireland, but there are differences and limitations to comparing numbers of deaths by place of death between nations.

The definition of what institutions are “care homes” differs across the nations so absolute numbers of deaths in care homes cannot be compared (Deaths in care homes, UK: 2015 to 2021 (final), 2022 (provisional)). The terminology used also differs between nations. In Northern Ireland, the term “nursing home” is broadly synonymous with “care home” in the other nations.

The number of deaths that occur in a hospice is published for England, Wales and Northern Ireland but not in Scotland where some hospices are categorised as hospitals, and others as care homes.

The hospital category in Scotland will include some deaths in a hospice.

Scotland reports deaths across the following locations, including hospital, care home, home (and other non-institution) and other institutions. There is no separate reporting for deaths that occur in a hospice. In England, Wales and Northern Ireland deaths at home and deaths outside the home but not in a care institution are reported separately.

Place of death statistics in the 4 nations of the UK

Identifying people near end of life

In England, the National Health Service (NHS) use the percentage of patients in need of palliative care/support, as recorded on general practice disease registers as a performance measure and it is republished in the Public health profiles.

Wales also publish the percentage of patients in need of palliative care/support, as recorded on general practice disease registers.

Similar statistics are not published in Scotland or Northern Ireland.

Care in the community

Time spent in the community

The percentage of the last 6 months of life spent at home or in a community setting is published by Public Health Scotland and is used as a quality outcome measure for end of life care.  This involves calculation of the time spent in hospital.

In England a related experimental statistic, time spent in hospital during the last 6 months of life, is included in DHSC’s Palliative and end of life care factsheet: Patterns of care.

Similar statistics are not published in Wales or Northern Ireland.

Community end of life care services

In England, Community Services statistics are collected and published by the NHS. These  include the experimental statistics:

• number of referrals for end of life support
• number of contacts with end of life care service
• number of contacts with specialist palliative care service

Similar statistics are not published in Scotland, Wales or Northern Ireland.

Emergency hospital admissions

The percentage of deaths with three or more emergency admissions in the last 90 days of life is used in England as a measure of end of life care and published in the Public health profiles.

Similar statistics are not published in Scotland, Wales or Northern Ireland.

UK wide statistics

The Organisation for Economic Co-operation and Development (OECD) compile and publish end of life care Healthcare quality and outcome indicators  which for the UK as a whole includes

• deaths in hospital
• unplanned/urgent in-patient admissions during the last 30 days of life, by cause of death (all causes, cancer, cardiovascular disease, respiratory disease, Alzheimer’s and other dementias)
• unplanned/urgent in-patient admissions during the last 180 days of life, by cause of death (cardiovascular disease, respiratory disease, Alzheimer’s and other dementias)

Deaths in hospital are published for each of the 4 nations. The other OECD statistics are not published for any of the 4 nations.