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 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 2023/24, there were 1,136 patients registered with Hull GPs who were recorded as needing palliative care which represented 0.4% of Hull’s patients (03F) and it is lower than England (0.5%) and other areas within Humber and North Yorkshire (range 0.6% to 1.5%).

The percentage of patients recorded as needing palliative care among patients registered with Hull GPs has remained relatively constant in Hull at 0.3% between 2012/13 to 2022/23 although the total numbers have increased slightly over time with the percentage increasing to 0.4% for the latest year.

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 28 practices in Hull for 2022/23. 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.

From the local analysis of the Quality and Outcomes Framework data, the association between the percentage of patients requiring palliative care across the 28 practices in Hull for 2023/24 and the average age of the practice patients and the average deprivation score of practice patients (using the Index of Multiple Deprivation 2019). It was found that there was no statistically significant associations for either age or deprivation. So practices with an older patient population or who had more patients living in more deprived areas of Hull had no significant difference in their percentage requiring palliative care. Further analysis including the percentage of patients 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 and early 2021 during as response to the COVID-19 pandemic changed. It is also possible that bed capacity also changed over time, and could have influenced where the death occurrred.

Deaths Occurring in Hospitals

For 2022, 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, although further decreased in 2022.

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, but increased to 41% for 2022.

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 between 2020 and 2021 although fell slightly for 2022.

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 slight increase in the percentage dying in hospital in 2020 and a more substantial increase between 2020 and 2021, followed by a reduction between 2021 and 2022.

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, although the percentage fell to 45% for 2022.

Deaths Occurring at Care Homes

Compared to England for 2022, the percentage of deaths which occur in a care home was lower for in Hull among individuals aged under 75 years but higher among those aged 75+ years.

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 2022, 37% of all deaths in care homes were among people whose usual place of residence was not a care home, although this was higher for England at 41%.

It is possible that patients living hospital who need extra support temporarily could be placed in a care home, and they might have a higher mortality rate (compared to those already living in a care home) having been relatively recently discharged from hospital.

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 has increased in 2021 and 2022.

Overall, 179 deaths occurred to people who were temporary care home residents out of the 479 deaths among people who were temporary or permanent care home residents.

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.

The percentage reduced to 18.5% in 2021 and further reduced to 17.8% in 2022 which is the lowest percentage since 2014.

Of the 2,691 deaths in 2022, 479 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. Between 2021 and 2022, the percentage decreased for those aged 85+ years but increased among those aged 75-84 years.

Overall, 286 of the 822 deaths among those aged 85+ years occurred in a care home in 2022 compared to 137 out of the 732 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 2022, 41 of the 526 deaths among those aged 65-74 years occurred in a care home and 15 of the 577 deaths among those aged under 65 years occurred in a care home.

Deaths Occurring at Homes

During 2022, there was a lower percentage of deaths which occurred at home in Hull compared to England for most 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 2022.

In general, there has been an increasing trend in the percentage of people dying at home over time, although there is more variability for the younger age groups and the increase is more evident for the older age groups.

Deaths Occurring at Hospices

During 2022, the percentage of deaths which occurred at a hospice was higher overall and for people aged under 65 years, but lower for those aged 65-74 years. The rates were comparable or higher in Hull for those aged 75+ 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, and reduced further for 2021, although the percentage increased to 5.4% for 2022.

In general, the percentages have remained relatively unchanged over time across the different age group particularly between 2014 and 2019 although there has been considerable year-on-year variability particularly among those aged 85+ years, and the percentages do differ across the age groups (85+ years 2-4%, 75-84 years 4-6%, 65-74 years 8-9% and under 65 years 6-8%).

There has been a fall in the percentage between 2019 and 2020 in Hull likely associated with the COVID-19 pandemic. Between 2020 and 2021, the percentage increased among those aged 75+ years, but decreased further among those aged under 75 years. The percentage remained relatively unchanged between 2021 and 2022 for those aged 85+ years but increased among people aged under 85 years with the younger age groups showing the largest increases in the last year.

Deaths Occurring at ‘Other Places’

The percentage of deaths which occur at ‘other places’ (not in hospital, a care home, the person’s own home or in a hospice) was small. The percentages differed by age and were under 2% among those aged 65+ years. The percentages were higher among people aged under 65 years where external causes of death account for a higher percentage of the overall deaths among this age group.

Between 1.8% and 3.1% of deaths to Hull residents occur in ‘other places’, and there is year-on-year variability.

Location of Death by Cause of Death

Heart Failure

Information is also given on the percentage of deaths from heart failure which occur at home or at the deceased usual residence. The percentage in Hull is considerably lower than England for the two-year period 2021-22 (41.0% versus 59.7%) although the rate in early 2021 could have been influenced by the COVID-19 pandemic.

Just over half of all heart failure deaths in Hull occurred at home or their usual place of residence for 2012-13, but this has steadily decreased to 43% for 2018-19. The percentage increased for 2019-20 and 2020-21, but this could be associated with the pandemic with fewer people being admitted to hospital and thus dying in hospital. The latest percentage for 2021-22 is slightly lower than the percentage prior to the pandemic.

A significantly lower percentage of people with heart failure die at home or their usual place of residence in Hull compared to England. Many factors could influence this which might include patient choice, family support mechanisms and facilities at home (for example, making room for medical equipment or having a downstairs toilet in the home etc).

Chronic Obstructive Pulmonary Disease

The percentages of deaths from chronic obstructive pulmonary disease (COPD) that occur in care homes, hospital and at home is also available on Fingertips. For 2021, slightly more COPD deaths occurred in hospital and at home in Hull (03F) compared to England.

The percentage of COPD deaths that occur in hospital has been gradually decreasing and the percentage occurring in care homes and at home have been gradually increasing, although there has been year-on-year variability over time.

Number of Care and Nursing Beds

For 2021, Hull has the highest rate of care home beds per 100 people aged 75+ years across the region, but among the lowest number of nursing beds per 100 people aged 75+ years. This could influence where deaths occur.

The number of care home beds per 100 people aged 75+ years increased in Hull between 2011 and 2014, but has since decreased. The number of care home beds has been consistently higher than both England and the region. Furthermore, the reduction in Hull has been less than the reduction across England (faster rate of reduction across England).

In contrast, the number of nursing home beds has been consistently much lower than England since 2011. There were around three nursing home beds per 100 people aged 75+ years in 2011 and 2012 but rose to just over four beds per 100 population between 2013 and 2016, but has since fallen to back to around three beds per 100 population but has fallen further to 2.5 beds per 100 population for 2021. It is possible that the recent fall between 2020 and 2021 could have been affected by COVID-19 and could be influenced by changes in the types of beds available in Hull because of workloads, staff shortages, etc.

Emergency Hospital Admission In Three Months Prior to Death

There is also information on the number of patients who have three or more emergency admissions to hospital within the last three months of their life.

In 2022, the percentage of deaths with three or more emergency admissions within the last three months of their life was higher among those aged under 75 years in Hull compared to England, but the same for those aged 75+ years.

Among those aged under 75 years, just over one in ten had three or more emergency hospital admissions within the last three months or their life, but it was around 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 as well as the different causes of death (and management of those conditions if applicable) among those aged under 75 years and 75+ years.

The percentage with three or more emergency admissions within the last three months of life has been increasing for all ages from 7.4% in 2015 to 10.5% in 2019 before falling to 7.2% for 2020 with the fall likely associated with the COVID-19 pandemic. However, the rate has further decreased in 2021, although remained relatively unchanged between 2021 and 2022.

Over the same period, the percentage has also been increasing for those aged 75+ years from 6.9% in 2015 to 9.8% in 2019, before falling in 2020 to 6.3%, and falling further to 5.0% in 2021 with no real change between 2020 and 2021.

For those aged under 75 years, the trend is less clear with the percentage ranging between 8% and 12% between 2015 and 2019 with year-0n-year variability.

The percentage also decreased between 2019 and 2020 which is likely associated with the COVID-19 pandemic, but in contrast to those aged 75+ years the decrease was relatively small and the rate increased between 2020 and 2021, although as with those aged 75+ years, the rate remained relatively unchanged between 2021 and 2022.

Strategic Need and Service Provision

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. There is a need to work with partners to promote self-care and mutual support in community settings including hospices and the patient’s home so this is viewed as the norm and reduce reliance on residential or care homes. There is a need to reduce inappropriate hospital admissions and to ensure robust and effective “wrap around care” covering 24 hours and to focus on earlier advance care planning which respects individual needs and allows for people’s cultural and religious preferences. Advice and support needs to be timely, and advice and support around other areas which can cause stress, such as housing and benefits, would be of benefit to individual and their families. This in turn will improve quality of end of life and ensures that people receive care in their preferred place and die in their preferred place. In order to achieve this it is imperative that we have a suitably skilled and competent workforce delivering high quality care supported through a comprehensive end of life care education programme.

There have been some positive developments over recent years in Hull with statutory and voluntary agencies committed to working together to provide these services.

Resources

The Office for Health Improvement & Disparities’ Fingertips: https://fingertips.phe.org.uk/

NHS Digital. Quality and Outcomes Framework. https://qof.digital.nhs.uk/

Updates

This page was last updated / checked on 8 October 2024.

This page is due to be updated / checked in January 2025.