Just over a fifth of people in England and Wales die in a care home (20.5% in 2023). People who die in care homes are more likely to be older, female and die from dementia – reflecting the characteristics of care home residents. The provision of good-quality end of life care in care homes enables care to be provided in surroundings that the patient is familiar with (as for patients in private homes), and has the potential to reduce urgent hospital admissions.
The number of people dying in care homes increased significantly at the start of the pandemic, reflecting the vulnerability of residents to infection from Covid-19. Since then, the number of people dying in care homes has often been below expected, when compared to the previous five years. During the pandemic, this may have reflected higher deaths during periods of higher infection being followed by fewer deaths. In addition, the number of people residing in care homes has fluctuated over time.
In the second blog in this series, we build on our earlier study of the care of people who died at home, using data covering a population of 24 million people linking GP clinical records, hospital data and death registrations.
An important context for our analysis is the Enhanced Health in Care Homes (EHCH) programme. This was set up in 2016, with pilots of different approaches to delivering more integrated care. The scope of the programme has been extended over time. It has been part of the GP contract for Primary Care Networks since 2020, providing funding for groups of GP practices to give additional multi-disciplinary primary care services to care home residents, including end of life care.
Which services are used by people who die in care homes, and how has this changed over time?
We examined services used in the last month of life by people who died in care homes, using GP clinical records to identify contacts with the GP or other members of the primary care team, and the use of medications for symptom management at the end of life. We used linked hospital data to track attendances at A&E, outpatient appointment and hospital admissions, including for elective (planned) and emergency care.
The proportion of people in contact with a GP or member of the primary care team jumped significantly at the start of the pandemic, as for people who died at home. Notably, this proportion has continued to increase, and the latest data we have for August 2023 suggests that over 90% of people who died in a care home had seen a GP in the last month – a 44% increase since August 2019.
In contrast, there has been a more modest but important reduction in A&E attendances and emergency admissions among people who died in care homes, with a 16% reduction in the proportion of people visiting A&E and a 22% reduction in people being admitted as an emergency in the last month of life between August 2019 and August 2023. Reducing unplanned A&E visits or hospital admissions is a key aim of the EHCH policy, but may also be impacted by other service developments within care homes.
The proportion of people having had at least one outpatient appointment (an appointment with a specialist at a hospital) in the last month of life has increased since before the pandemic, potentially as a result of more proactive care for care home residents. Only 1% or fewer of residents who died had an elective admission in the last month of life. The proportion of patients receiving medication for symptom management at the end of life remained stable.
The number of contacts per person with GPs or practice teams in the last month of life have also increased substantially since before the pandemic. Part of the initial increase at the start of the pandemic is likely to reflect proactive contacts made by practices with patients at high risk – to provide repeat medication or advice for shielding, for example. The increase at the start of the pandemic can also be seen for patients who died in hospital. However, for patients who died in care homes, there was a sustained increase to over five contacts per person in August 2023, whereas the contacts per person for people who died in hospital has remained stable since the start of the pandemic.
As part of EHCH, participating GP practices are required to review care home residents weekly, and to improve access to a wider multi-disciplinary team. The increase in GP and practice team contacts suggest that the programme has been effective. The requirement for weekly reviews of patients will have increased contacts and, in addition, changes in the way care is delivered could also contribute to an increase in recording. There has been a shift towards a wider range of staff being involved in supporting care home residents, including care coordinators, as well as nurses and pharmacists. Clinical tasks that would have previously been undertaken by the GP as part of a single contact with the patient may now be recorded across multiple contacts.
Advance care planning
Advance care plans aim to capture a person’s wishes for their future care, in a situation where they are not able to decide for themselves. Advance care planning can support people to die in their preferred location, and inform care and treatment decisions at the end of life. We identified codes relating to care plans within the GP record, and examined how these changed over time.
People who died in care homes were much more likely to have a record of an advance care plan than patients who died at home or in hospital. In the case of hospital deaths, an advance care plan may be in place but not shared with the GP record, or if it is shared via an electronic letter then it may not be coded in the GP system. The much higher recording for people who died in care homes is likely to be a reflection of the EHCH programme, which until the end of March 2023 incentivised recording details of personalised care plans in the patient’s GP record. This was not included in the GP contract for 2023/24, and this change is reflected in a drop in recording of care plans for people who died from May 2023 onwards.
Implications
Our analysis of data from GP records has found substantial changes in care received at the end of life by people who die in care homes. Part of the increase we found in recorded contacts with primary care may be a result of changes in how data is recorded, as well as how care is provided. A more structured approach to providing primary care in care homes means care is more likely to be delivered by a multi-disciplinary team, leading to multiple care contacts being recorded, as well as the requirement for weekly reviews of care home residents.
Even with these caveats, the data suggests that the EHCH is having an impact on end of life care, and is achieving one of its goals of ensuring primary care teams are active in supporting care home residents, achieving a step change in how services are provided. We found notable reductions in A&E visits and emergency admissions at the end of life, in line with the goal of EHCH to reduce unnecessary transfers of residents to hospital. The trends we see are in line with findings from evaluations of earlier initiatives to improve primary care in care homes, and forerunners to the current programme.
However, the extent to which changes in care provision will be maintained as funding available within the GP contract changes is unclear. Recordings of advance care plans dropped off as soon as this requirement was no longer incentivised. There is therefore a risk that the benefits achieved from the programme will not be sustained over time, as has been observed previously for quality improvements linked to payment.
Given the potential improvements to individuals’ health, from improved wellbeing and reduced admission to hospital at the end of life, it is important that the EHCH is evaluated. Other service changes may also be impacting on lower hospital activity, including increased remote monitoring available in care homes.
A future evaluation could explore the experience of care home residents and staff, and primary care providers. Our analysis gives us a measure of quantity of care provided, but this does not necessarily equate to quality of care. Evidence from evaluations of earlier and similar programmes indicate that how the programme is implemented – for example, relationships between primary care teams and care homes – is likely to impact on success. Factors such as access to shared care records are likely to be important in effective care for patients, alongside the capacity and training for care home staff.
In the next blog in this series, we examine hospital care at the end of life.
Methodology
The quality of care that people receive at the end of life, as well as inequalities in experiences of care, are critical policy concerns. Please find here more information about our approach to examining changing trends in service use towards the end of life: Describing our methodology
Suggested citation
Scobie S, Bagri S, Julian S, Davies M (2024) “What end of life care do people who die in a care home receive, and how has this changed over time?”, Nuffield Trust blog
Using health and care services at the end of life
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