Time to Care aims to describe the outcomes, experiences, and use of care services by people affected by dying, death, and bereavement in England and Wales. It is the final report from the Marie Curie Better End of life programme.
Fliss Murtagh, Professor of Palliative Care at Hull York Medical School and Director of the Wolfson Palliative Care Research Centre, said: “This is important work; giving voice to those who are least often heard – those with advanced illness and their families. We must improve care, especially for those at home who are sometimes without ready help when needed.”
The report found one in five dying people had no contact with their GP in the last three months of life.
Half of people surveyed (49%) said their dying loved one visited A&E at least once in their final three months of life, and one in eight people who died in hospital had been there less than 24 hours.
Half of respondents (49%) in the study were also unhappy with at least one aspect of the care the person who died received and of those one in eight people made a formal complaint. Fewer than half of respondents said they had a key contact person to co-ordinate their care. This meant responsibility for care fell on informal carers (family and friends), who often felt unprepared and unsupported.
The research report is based on a survey sent by the Office for National Statistics in 2023 to a nationally representative sample of people who had registered the death of a family member in the prior six to 10 months. Only non-sudden causes of death were included. Responses were received from 1179 people, making this the largest nationally representative post-bereavement survey in England and Wales for a decade.
Prof Murtagh said: “We have not had a recent national picture of what end of life care has been like for the families who have sadly experienced this. For many families, this is the first time they have cared for a family member with advanced illness. Often, they have found themselves unprepared and unsupported; not knowing where to turn. We worked directly with people with experience of this, to ensure the voice of those who are rarely heard came through strongly in this report.”
Professor Katherine Sleeman, from King’s College London and lead researcher on the project, said: “This study reveals patchy and inconsistent provision of care for people approaching the end of life. While there were examples of excellent care – including in the community, in care homes, and in hospitals – the overall picture is of services that are overstretched, and of health and care staff lacking the time they need to consistently provide high-quality care. This means that dying people miss out on treatment and care for their symptoms, and families are left feeling unprepared and unsupported which has lasting emotional repercussions into bereavement.
“These findings are highly concerning considering the ageing population and the expected increase in palliative care needs across the UK. By 2048, there will be an additional 147,000 people in the UK who need palliative care before they die, a 25% increase. Without a corresponding increase in capacity of primary and community care teams to support these people as they approach the end of life, the quality of care is likely to further suffer. It has never been more important to ensure high-quality palliative care for all who need it.”