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).

In July 2022, Clinical Commissioning Groups (CCGs) ceased to exist and were replaced by the Integrated Care System. The sub Integrated Care Board areas which include Hull are within the Humber and North Yorkshire Integrated Care Board. In Fingertips, the sub-ICB area referenced by 03F relates to Hull (see Integrated Care Board for the codes relating to the other local sub-ICB areas). For some indicators on Fingertips, the data is still being presented at CCG level (and for Humber, Coast and Vale) and has not yet been updated for sub-ICBs. However, for Hull the geographical area for the CCG and the sub-ICB area (03F) are the same so the information can still be examined and compared to understand the health needs within Hull.

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 2021/22, 1,001 (0.3%) patients registered with Hull GPs were recorded as requiring palliative care which was considerably lower than England (0.5%) and across Humber and North Yorkshire Integrated Care Board (0.6%).
• In 2021, just under half (48%) of deaths among Hull residents occurred in hospital which was slightly higher than England (44%) although those aged 85+ years were less likely to die in hospital compared to young age groups (39% for both Hull and England). The percentage dying in hospital has been gradually reducing over time, although there has been an increase in 2021 which in part might be associated with COVID-19 pandemic as there had been a slightly larger decrease between 2019 and 2020.
• During 2020, just over one-quarter (27%) of all deaths in care homes occurred among temporary residents (whose usual residence was not the care home) in Hull, although this was considerably lower than England (35%).
• There has been a slight increase in the percentage dying in a care home over time in Hull among those aged 75+ years, and whilst the percentage increased between 2019 and 2020 due to the COVID-19 pandemic, particularly for those aged 75-84 years, the percentages have reduced to pre-pandemic levels in 2021.
• During 2021, a lower percentage of deaths occurred at home (just over one-quarter among all ages), although the percentages have been increased in Hull over time particularly among older age groups. The percentages increased between 2019 and 2020 for all age groups due to the COVID-19 pandemic, but the increase continued between 2020 and 2021 among those aged 75+ years although decreased among those aged under 65 years.
• There were few deaths occurring in hospices in Hull (4% in 2021) and few deaths occurring in other locations (3% in 2021), although younger age groups were more likely to die in a hospice or at other locations compared to older age groups.
• In 2021, Hull had the highest rate of care home beds per 100 population aged 75+ years (13.6) across the region (9.9) and also higher than England (9.4), however, the number of nursing home beds per 100 population aged 75+ years was considerably lower in Hull (2.5) compared to the regional average (4.2) and England (4.6). This could influence where deaths occur.
• Almost one in ten had three or more emergency hospital admissions within the last three months or their life among those aged under 75 years, but this was only one in twenty among those aged 75+ years. There could be many reasons why this is the case, but it is possible that this is – in part – associated with a higher percentage of the population aged 75+ years living in a care home, and their medical conditions are managed within the care home in conjunction with primary care.
• 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 2021/22, there were 1,001 patients registered with Hull GPs who were recorded as needing palliative care which represented 0.3% of Hull’s patients (03F) considerably lower than England (0.5%) and other areas within the Humber and North Yorkshire area.

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. In contrast, the percentages in England and across the Humber and North Yorkshire have increased slightly over time.

From the local analysis of the national Quality and Outcomes Framework datasets, there was no statistically significant association between average age of the practice patients and the percentage of patients requiring palliative care across the 32 practices in Hull for 2021/22. There was also no statistically significant association between the percentage of patients requiring palliative care and the average deprivation score of registered patients (using the Index of Multiple Deprivation 2019). Further analysis including the percentage requiring palliative care for each practice is available within the file within Local Analysis of Quality and Outcomes Framework Data.

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 response to the COVID-19 pandemic changed over time.

Deaths Occurring in Hospitals

For 2021, there was a higher percentage of deaths which occurred in hospital in Hull both overall and for each age group compared to England.

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 50% between 2013 and 2018. The rate then fell to 47.5% in 2019, and fell further in 2020 as deaths were less likely to occur in hospital during the COVID-19 pandemic. The percentage for 2021 returned to a similar percentage as that observed in 2019.

Slightly fewer deaths occur in hospital among those aged 85+ years compared to other age groups, and the percentage has decreased over time from 48% in 2012 to 42% in 2019. The rate fell to 39% in 2020 which might be influenced by the COVID-19 pandemic, although the rate remained at 39% for 2021.

A relatively similar pattern occurred in the percentage of deaths occurring in hospital occurred for deaths among those aged 75-84 years with the percentage decreasing from 55% in 2012 to 52% in 2019. There was a considerable decrease to 46% in 2020, but the rate has increased back to a similar level (51%) observed in 2019 for the latest year 2021.

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 at 57% in 2012 and has fallen up to a low of 50% in 2019. In contrast, to those aged 75+ years, there was a similar percentage dying in hospital in 2020 as there had been in 2019. The percentage in 2021 has increased further to 54%.

Among those aged under 65 years, the percentage of people dying in hospital has reduced from 53% in 2011 to 47% in 2019 with only a small reduction in 2020 to 45%. The percentage increased in 2021 to 51% which is the highest percentage since 2016.

Deaths Occurring at Care Homes

Compared to England for 2021, the percentage of deaths which occur in a care home was higher in Hull for all individual age groups, although for all ages it was lower which appears counter-intuitive but it simply a reflection of the total number of death and the pattern across the age groups.

The indicator relating to temporary residents relates to cases where the place of death is a care home, but that care home is not their usual place of residence, and this is given as a percentage of all care home deaths.

For 2020, just over one-quarter of all deaths in care homes were among people whose usual place of residence was not a care home, although this was considerably higher for England at just over one-third.

In 2019, 29% of all deaths in care homes were among temporary residents whose usual place of residence was not a care home. The percentage fell slightly to 27% in 2020, but it is possible that the COVID-19 pandemic had an impact on this percentage.

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

In 2021, the percentage reduced to 18.5% which is the lowest percentage since 2015.

Of the 2,714 deaths in 2021, 502 occurred in a care home.

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.

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.

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. The percentages returned to a similar levels in 2021 albeit slightly lower than 2019 for those aged 75-84 and 85+ years.

Around 300 of the 798 deaths among those aged 85+ years occurred in a care home in 2021 compared to 142 out of the 793 deaths among 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.

During 2021, 42 of the 538 deaths among those aged 65-74 years occurred in a care home and 18 of the 581 deaths among those aged under 65 years occurred in a care home.

Deaths Occurring at Homes

During 2021, there was a lower percentage of deaths which occurred at home in Hull compared to England for all age groups.

The percentage of deaths which occur at home has been steadily increasing in Hull for all ages. Whilst the relatively large increase between 2019 and 2020 occurred – at least in part – of the COVID-19 pandemic, the increase has been maintained between 2020 and 2021.

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.

For those aged 75-84 years and 85+ years, the increase between 2019 and 2020 has continued with an increase in 2021, but there was a slight decrease in the percentage between 2020 and 2021 among those aged 65-74 years and a larger decrease among those aged under 65 years. However, overall, deaths among younger people are more likely to occur at home, although this is likely associated with older people more likely to live and die in a care home.

Deaths Occurring at Hospices

During 2021, the percentage of deaths which occurred at a hospice was lower in Hull both overall and for individual age groups except those aged 85+ years.

The percentage of deaths which occur at a hospice increased between 2009 and 2014 but has remained around 5-6% since then to 2019. The percentages decreased between 2019 and 2020 which might be associated with the COVID-19 pandemic, although the percentage has further reduced in 2021 to its lowest level since 2012.