Palliative Care and End of Life

This topic area covers statistics and information relating to palliative care and end of life in Hull including local strategic need and service provision. Further information is available on Causes of Death under Population, and for specific diseases and medical conditions under Health Factors under Adults.

This page contains information from the Office for Health Improvement & Disparities’ Fingertips. Information is taken ‘live’ from the site so uses the latest available data from Fingertips and displays it on this page. As a result, some comments on this page may relate to an earlier period of time until this page is next updated (see review dates at the end of this page).

Headlines

• The aim of palliative care and end of life services is to enable patients with advancing progressive life limiting illness to be cared for and to die in their preferred place of care with optimal pain and symptom management, supported by skilled staff.
• In 2020/21, 959 (0.3%) patients registered with Hull GPs were recorded as requiring palliative care which was considerably lower than England (0.5%) and across Humber, Coast and Vale (0.6%).
• In 2019, just under half (48%) of deaths among Hull residents occurred in hospital which was slightly higher than England (45%) but this fell to 44% in Hull for 2020 (42% for England). In 2019, one in five (20%) deaths occurred in a care home (23% England) but this increased to 23% in 2020 (24% England). In 2019, 24% deaths occurred at home (24% for England), but this increased to 26% in 2020 (27% for England). Six percent of deaths had occurred in a hospice in 2019, but this fell to 4% in 2020 (6% and 5% respectively for England). In 2019, 6% of deaths occurred in a hospice among Hull residents, but this fell to 4% in 2020. Generally, fewer than 3% of deaths occurred at other locations.
• The percentage of deaths occurring in hospital has been gradually decreasing and the percentage of deaths occurring in care homes and at home have been increasing, although in 2020 the location of where people died differed from previous years due to COVID-19.
• There is a need to work with partners to ensure that palliative and end of life care services are integrated, high quality and accessible in ways that offer people appropriate choices.

The Population Affected – Why Is It Important?

The aim of palliative care and end of life services is to enable patients with advancing progressive life limiting illness to be cared for and to die in their preferred place of care with optimal pain and symptom management, supported by skilled staff. It is generally recognised that too many people die in hospital and that this might not be their preferred place of death, and a proportion of these people might prefer to die at home provided that the right care is in place.

Around 1% of the population of the UK dies each year (over half a million), with an average of 20 deaths per GP per year. A quarter of all deaths are due to cancer, a third from organ failure, a third from frailty or dementia, and only one twelfth of patients have a sudden death. The considerable benefits of identifying patients in need of palliative care include providing the best health and social care to both patients and families and avoiding crises, by prioritising them and anticipating need. Identifying patients in need of palliative care, assessing their needs and preferences and proactively planning their care, are the key steps in the provision of high quality care at the end of life in general practice.

The number of patients requiring palliative care can be examined from data collected as part of the Quality and Outcomes Framework within primary care. Quality of care indicators are also included which relate to having regular multidisciplinary meetings where the team can ensure that all aspects of the patient’s care has been assessed and future care coordinated and planned proactively to ensure that the patient has the best end of life care. Local analysis of the QOF data has been completed with prevalence calculated for each GP practice and Primary Care Network group.

The Hull Picture

Numbers Requiring Palliative and End of Care Support

In 2020/21, there were 959 patients registered with Hull GPs who were recorded as needing palliative care.

The percentage of patients recorded as needing palliative care among patients registered with Hull GPs has remained relatively constant in Hull at 0.3% although the total numbers have increased slightly over time. The percentages in England and across the Humber, Coast and Vale have increased slightly over time. Nevertheless, the percentage in Hull has been considerably lower than England and across the Humber, Coast and Vale in the last two years.

Number of Deaths by Location of Death

The Office for Health Improvement & Disparities’ Fingertips also presents information on the percentage of deaths which occur at different locations by age of death.

The figures relating to 2020 and 2021 will be severely affected by the COVID-19 pandemic. From initial local analyses of mortality data, people who died in 2020 from COVID-19 were more likely to die within a care home (30%) or hospital (63%) and much less likely to die at home (5%) compared to all deaths which occurred during the five year period 2015-19 (19%, 49% and 23% respectively), although people who died of non-COVID-19 conditions in 2020 were more likely to die at home (29%) or in a care home (22%) and less likely to die in hospital (41%). Location of death also differed throughout 2020 during as health care services were changed throughout the COVID-19 pandemic.

Deaths Occurring in Hospitals

For 2020, there was a higher percentage of deaths which occurred in hospital in Hull both overall and by age, although the rate is the same for England for those aged 75-84 years.

Overall though the percentage of deaths which occur in hospital has been decreasing in Hull. In 2011, 57% of deaths among Hull residents occurred in hospital but this decreased to around half between 2013 and 2018. The rate then fell to 47.5% in 2019, and fell further in 2020. As noted above from the local analysis, people who died from causes other than COVID-19 in 2020 were less likely to die in hospital. As the majority of deaths in 2020 to Hull residents were not COVID-19 (2,372 versus 405) then one would anticipate that the percentage would decrease in 2020 if deaths not from COVID-19 were less likely to occur in hospital. The percentage dying in hospital has been reducing over time due to a conscious effort in relation to palliative care and patient choice, but it is difficult to examine the decrease in 2020 without considering the impact of the COVID-19 pandemic.

A relatively similar pattern occurred in the percentage of deaths occurring in hospital occurred for deaths among those aged 75-84 and 85+ years to all ages with the rate having decreased since 2011, and a recent fall to a low in 2020.

There has been slightly more year-on-year variability among those aged 65-74 years in relation to the percentage dying in hospital, although the rate was high in 2011 and has fallen up to 2019. In contrast, to those aged 75+ years, there was a similar percentage dying in hospital in 2020 as there had been in 2019.

Among those aged under 65 years, the percentage of people dying in hospital has reduced from 53% in 2011 to 45% in 2020 but the rate of change has been lower than older age groups. There is also a relatively small difference in the percentage between 2019 and 2020.

Deaths Occurring at Care Homes

The percentage of deaths which occur in a care home was lower in Hull for 2020 than England overall and for all age groups except for those aged 65-74 years where the percentage in Hull was the same as England.

The percentage of deaths which occur in care home increased in Hull between 2011 and 2012, but has remained relatively static at around 20% between 2012 and 2019.

The rate increased between 2019 and 2020 from 19.8% to 22.6% due to the COVID-19 pandemic. People who died during 2020 were more likely to die in a care home and this was the case for deaths from COVID-19 and other conditions.

As the majority of deaths occur at ages 75+ years, then it is not surprising that the percentages dying in a care home for those aged 75+ years follow a similar pattern to all ages. For both those aged 85+ years and 75-84 years, there was an increase between 2019 and 2020 and this was particularly the case among those aged 75-84 years. As people are more likely to live in a care home as they get older, the percentage who die in a care home is much higher among those aged 85+ years than it is for those aged 75-84 years.

The numbers of people living in a care home and the total numbers of deaths are much lower among those aged 65-74 years and less than 65 years, and therefore, it is not surprising that there is more year-on-year variability in the percentages dying in a care home among these two age groups. The percentages have increased over time among those aged 65-74 years, but the total numbers dying in a care home are relatively small. The numbers dying in a care home appeared to increase for 2020, but the percentages dying in a care home remained relatively unchanged between 2019 and 2020.

Deaths Occurring at Homes

During 2020, there was a lower percentage of deaths which occurred at home in Hull compared to England among those aged 65+ years, although the reverse was true among people aged under 65 years.

The percentage of deaths which occur at home has been steadily increasing in Hull for all ages, although it is likely that the relatively large increase between 2019 and 2020 occurred – at least in part – of the COVID-19 pandemic. Whilst substantially fewer deaths from COVID-19 occurred at home, deaths from other causes during 2020 were more likely to occur at home.

There is a reasonably similar pattern for the four age groups as all show an increasing trend between 2011 and 2019 and an increase between 2019 and 2020, although the degree of increase over the two periods does differ slightly between the age groups.

Deaths Occurring at Hospices

During 2020, the percentage of deaths which occurred at a hospice was lower in Hull both overall and for individual age groups.