Palliative and end of life care factsheet:
Patterns of care, England 2021

Patterns of care related to 4 major conditions; cancer, dementia, cardiovascular disease and respiratory disease

Background

The Secretary of State for Health and Social Care announced in January 2023 that the Department for Health and Social Care will develop and publish a Major Conditions Strategy. The strategy will “set out a strong and coherent policy agenda that sets out a shift to integrated, whole-person care, building on measures that we have already taken forward through the NHS Long Term Plan”.

The strategy identifies 6 major conditions: cancer, cardiovascular disease, dementia, mental ill health, musculoskeletal disorders and chronic respiratory disease. Information is presented here for 4 of the major conditions; cancer, cardiovascular disease, dementia and respiratory disease. Causes of death, recorded on death certificates, often will not identify people who die with a mental health issue or musculoskeletal problems as they may not directly contribute to the person’s death. Consequently, deaths from these two major conditions are not addressed directly here.

The purpose of this factsheet is to describe patterns of care near the end of life related to the 4 major conditions. It includes experimental statistics describing the number of deaths, the number of hospital admissions in the months before death and the place of death.

The major condition groups are here defined broadly to capture the impact of these conditions on people at the end of their life and include both chronic and acute conditions. A brief description of how underlying cause of death is determined from the death certificate is included in the Supporting information section together with the definition of how the underlying and contributory causes of death were used to identify people living with major conditions. In this factsheet

• respiratory disease includes chronic conditions such as chronic obstructive pulmonary disease (COPD) and acute conditions for example pneumonia. It does not include COVID-19

• cardiovascular disease includes chronic conditions such as heart failure and acute conditions for example myocardial infarction (“heart attack”). It does not include diabetes or renal failure

• dementia includes both dementia and Alzheimer’s disease

A person is described as dying “of” a condition if it is the underlying cause of death recorded on the death certificate, and dying “with” a condition if it is a contributory cause of death only.

The time period presented includes the 2nd wave of the COVID-19 pandemic and the findings should be considered in this context.

More detailed data is available in the accompanying spreadsheet which includes more detailed information by specific underlying causes of death within the major conditions, age, sex, socio-economic deprivation and ethnicity.

Main findings

• the overwhelming majority (88.9%, 486,998 ) of people who died in 2021, died of or with one of the 4 major conditions

• nearly three quarters (72%, 395,438) of all people who died in 2021, spent time in hospital during the 6 months before they died, staying for a total of 7.7 million days in hospital

• nearly three quarters (73%, 269,493) of people who died in 2021 of one of the 4 major conditions, spent time in hospital during the 6 months before they died, staying for a total of 5.1 million days in hospital

• almost half (48%) of the inpatient care provided by hospitals (measured in terms of days in hospital) for people aged 85 year or older is for people in their last year of life

• almost two thirds (63.5%) of all people who died had a least one emergency admission in their last 3 months of life, 7.1% having three or more emergency admissions in their last 3 months of life

• among the major conditions, the likelihood of having an emergency admission in the 3 months prior to their death is greater for people who died of cancer (71%) or respiratory disease (72%) than for people who died of cardiovascular disease (55%) or dementia (44%)

• the condition(s) people are living with in their final weeks can affect where they are cared for and where they ultimately die; comparing the 4 major conditions with each other

  • people who died of cancer were the most likely to die at home (41.6% compared to 28.7% of all deaths) or in a hospice (14.0% compared to 4.4%)
  • people who died of dementia were the most likely to die in a care home (63.2% compared to 20.2%)
  • people who died of respiratory disease were most likely to die in hospital (59.7% compared to 44.0%)

Characteristics of those who died

In 2021

• 547,648 people died (excluding neonatal deaths)

• two thirds of people (67.8%, 371,393 people) died of one the 4 major conditions

• the overwhelming majority (88.9%, 486,998) of people died of or with at least one of the 4 major conditions

Table 1 and Figure 1 show that in their final months before death, many more people are living with cardiovascular disease, dementia and respiratory disease than would be suggested by underlying cause of death alone. For example, there are over 2.5 times more people who died with than died of respiratory disease.

Counting people by underlying cause of death will underestimate the number of people living with these conditions near the end of their life. A better estimate uses both the underlying cause of death and the contributory causes of death. However, this is still an underestimate of people living with these conditions prior to death as it only counts people for whom the doctor recorded these conditions as contributing to the death.

The underlying and contributory causes of death for any individual may encompass several of the major conditions. Consequently, while any one person will only be counted in a single underlying cause of death group, a person may be counted in up to 4 contributory cause of death groups. Due to this double counting, it would be wrong to add together counts that include people by their contributory causes of death.

Table 1: Number and percentage of people who died of or with 4 major conditions, England 2021

Number of deaths

Deaths with the condition as	Cancer	Cardiovascular	Dementia	Respiratory	Any of the four conditions
Underlying cause of death	135,645	125,445	59,300	51,003	371,393
Only a contributory cause of death	22,114	138,579	36,085	133,890	115,605
Underlying or contributory cause of death (total)	157,759	264,024	95,385	184,893	486,998

Percentage of all deaths

Deaths with the condition as	Cancer	Cardiovascular	Dementia	Respiratory	Any of the four conditions
Underlying cause of death	25%	23%	11%	9%	68%
Only a contributory cause of death	4%	25%	7%	24%	21%
Underlying or contributory cause of death (total)	29%	48%	17%	34%	89%

Figure 1: Number of people who died of or with 4 major conditions, England 2021

The deaths in each major condition group vary by demographic characteristics. For example Table 2 and Figure 2 show

• people who died of cancer are on average the youngest, 44% of people who died of cancer were under 75 years compared to 33% of all deaths

• among people who died of dementia, 65% were female and 35% male compared to 49% female and 51% male for all deaths. They are also the most elderly with 68% aged 85 years or older compared 39% of all deaths

• the 4 major conditions are the underlying or contributory cause of death for the overwhelming majority of deaths (at least 83%) in each of the categories within sex, age, ethnicity and socio-economic deprivation

  
  

Figure 2: Percentage of people who died of or with 4 major conditions by demographic group, England 2021

Age

Sex

Ethnicity

Socio-economic deprivation

Table 2: Number and percentage of people who died of or with 4 major conditions by demographic group, England 2021

Age

	Under 75	75 to 85	85 or older
Distribution of all deaths by age group
Number of deaths (any cause)	178,855	156,846	211,947
Percentage of all deaths	33%	29%	39%
People who died of one of the 4 major conditions (underlying cause of death)
Number of deaths	114,229	113,030	144,134
Percentage of all deaths in this age group	64%	72%	68%
People who died of or with one of the 4 major conditions (underlying or contributory cause of death)
Number of deaths	153,438	147,579	185,981
Percentage of all deaths in this age group	86%	94%	88%

Sex

	Female	Male
Distribution of all deaths by sex
Number of deaths (any cause)	269,424	278,224
Percentage of all deaths	49%	51%
People who died of one of the 4 major conditions (underlying cause of death)
Number of deaths	184,581	186,812
Percentage of all deaths in this sex	69%	67%
People who died of or with one of the 4 major conditions (underlying or contributory cause of death)
Number of deaths	237,455	249,543
Percentage of all deaths in this sex	88%	90%

Ethnicity

	Asian or Asian British	Black or Black British	Mixed	White	Other ethnic group	Not known
Distribution of all deaths by ethnic group
Number of deaths (any cause)	19,219	10,143	2,261	487,804	1,833	26,388
Percentage of all deaths	4%	2%	0%	89%	0%	5%
People who died of one of the 4 major conditions (underlying cause of death)
Number of deaths	10,509	5,921	1,320	334,770	1,071	17,802
Percentage of all deaths in this ethnic group	55%	58%	58%	69%	58%	67%
People who died of or with one of the 4 major conditions (underlying or contributory cause of death)
Number of deaths	17,246	9,000	1,873	434,793	1,553	22,533
Percentage of all deaths in this ethnic group	90%	89%	83%	89%	85%	85%

Socio-economic deprivation

	1 Most deprived	2	3	4	5 Least deprived
Distribution of all deaths by deprivation quintile
Number of deaths (any cause)	114,231	109,878	112,128	109,657	101,754
Percentage of all deaths	21%	20%	20%	20%	19%
People who died of one of the 4 major conditions (underlying cause of death)
Number of deaths	74,582	73,161	76,625	75,876	71,149
Percentage of all deaths in this deprivation quintile	65%	67%	68%	69%	70%
People who died of or with one of the 4 major conditions (underlying or contributory cause of death)
Number of deaths	100,827	97,676	99,919	97,645	90,931
Percentage of all deaths in this deprivation quintile	88%	89%	89%	89%	89%

Time spent in hospital

Among the people who died in 2021

• a total of 395,438 people were seen in hospital as an inpatient during the 6 months before they died (72% of all deaths), staying a total of 7.7 million days in hospital

• within the last 6 months of life, the majority of the time in hospital is during the final 3 months (6.0 million days in the last 3 months out of 7.7 million days in the last 6 months). Table 3 shows this is similar for each of the major conditions

• nearly 25,300 of the people seen in hospital as an inpatient during their final 6 months were admitted as a day case only. A day case is admitted and discharged on the same day, and is reported here with a length of stay of zero days

Figure 3 shows the variation in the total time spent in hospital for inpatients during their final 6 months of life. This will, for some people, be a total time over multiple admissions. The distribution is highly skewed and for most people their length of stay is not close to the average length of stay.The figure also shows

• although the median days in hospital is 13 days, the most common time in hospital is zero days followed by 1 day

• half of the 395,438 (197,719) people who were seen in hospital as an inpatient during their final 6 months stayed in hospital between 5 and 27 days in total. Table 3 shows that this range is similar for each of the major conditions

• caring for people near the end of their life is a significant proportion of the care provided by hospitals. On average people spend 8% of their last six months of life in hospital, and 85,932 people (16% of all people who died) spent 30 days or more in hospital during their last 6 months

• Table 3 shows that being seen in hospital as an inpatient during their last 6 months of life was more likely for people who died of cancer or respiratory disease, compared to people who died of cardiovascular disease or dementia

Figure 3: Variation in the time spent in hospital during the last 6 months of life, England 2021

This graphic includes data for 395,438 people who were seen in hospital as an inpatient at any time during their final 6 months. It excludes 152,210 people who were never an inpatient during their last 6 months of life. Among those seen in hospital, nearly 25,300 were only seen in admissions with no overnight stay (zero days) many of which will be day case admissions.

Table 3: Time spent in hospital in the months before death for people who died of 4 major conditions, England 2021

During 6 months before death

Measure	Cancer	Cardiovascular	Dementia	Respiratory	All deaths
People with at least 1 hospital admission	116,559	80,887	31,711	40,336	395,438
People admitted as a percentage of all deaths	86%	64%	53%	79%	72%
Total days in hospital (millions)	2.1	1.5	0.6	0.8	7.7
Range of time in hospital for people with at least 1 admission
Median	13	11	14	13	13
Range for middle 50% (interquartile range)	5 to 25	3 to 26	6 to 28	5 to 27	5 to 27

During 3 months before death

Measure	Cancer	Cardiovascular	Dementia	Respiratory	All deaths
People with at least 1 hospital admission	106,189	73,868	27,159	38,028	364,759
People admitted as a percentage of all deaths	78%	59%	46%	75%	67%
Total days in hospital (millions)	1.6	1.1	0.5	0.6	6.0
Range of time in hospital for people with at least 1 admission
Median	11	10	13	11	12
Range for middle 50% (interquartile range)	5 to 21	3 to 22	5 to 24	4 to 22	4 to 23

The 25th percentile is the value at which 25% of the data lie below that value. The median is the value at which 50% of the data lie below that value. The 75th percentile is the value at which 75% of the data lie below that value. The interquartile range is between the 25th percentile and the 75th percentile.

Emergency hospital admissions

In 2021

• there were 6.1 million emergency hospital admissions, 15% of which involved people in their last year of life

• a total of 30.5 million days in hospital followed an emergency admission, of these 31% involved people in their last year of life

Table 4 shows that;

• of all admissions, the percentage that involve people in the last year of life is highest among the oldest age group (85 years and older 33%) and lowest in the youngest age group (under 75 years 8%)

• of all days in hospital, the percentage that involve people in the last year of life is highest among the oldest age group (85 years an older 48% respectively), and lowest in the youngest age group (under 75 years 19%)

  
  

Table 4: Emergency admissions and time spent in hospital following emergency admission by age, England 2021

Number of admissions

	Under 75 years	75 to 84 years	85 years or older	All ages
Number of admissions (millions)	4.1	1.0	1.0	6.1
Admissions involving people in the last year of life (millions)	0.3	0.3	0.3	0.9
Percentage of all admissions that involve people in the last year of life	8%	28%	33%	15%

Days in hospital

	Under 75 years	75 to 84 years	85 years or older	All ages
Total days in hospital (millions)	15.6	7.5	7.2	30.5
Days in hospital involving people in the last year of life (millions)	2.9	3.0	3.4	9.3
Percentage of all days in hospital that involve people in the last year of life	19%	40%	48%	31%

Emergency hospital admissions in the final 3 months of life

During the final three months of life for people who died in 2021

• a large majority of hospital admissions were emergency admissions, 79% of a total of approximately 667,000 hospital admissions

• nearly two thirds of people (63.5%) had a least one emergency admission

• 7.1% of people had three or more emergency admissions

Figure 4 and Table 5 show that of the 4 major conditions, people who died of cancer or respiratory disease were more likely to have had an emergency admission in the 3 months prior to their death than people who died of cardiovascular disease or dementia.

Figure 4: Percentage of people who have emergency hospital admissions during the final 3 months of life for people who died of 4 major conditions, England 2021

Table 5: Emergency hospital admissions during the final 3 months of life for people who died of 4 major conditions, England 2021

	Cancer	Cardiovascular	Dementia	Respiratory	All deaths
Number of emergency hospital admissions	159,129	98,664	35,961	56,705	526,052
Proportion of people with at least 1 emergency hospital admission	71%	55%	44%	72%	64%
Proportion of people with 3 or more emergency hospital admissions	11%	5%	3%	9%	7%

Place of death

The condition(s) people live with as they approach the end of their life can affect where they are cared for and where they ultimately die. Table 6 presents data on where people died by the major condition they died of. It includes both the number of deaths and percentage of deaths that occur in each setting, it shows

• hospital is the most common place of death (44.0% of all deaths)

• nearly half of people die in the community, either at home (28.7%) or in a care home (20.2%)

• relatively few people die in a hospice (4.4%) or other places (2.7%) (for example public places or someone else’s home)

• people who died of cancer were the most likely to die at home (41.6% compared to 28.7% of all deaths) or in a hospice (14.0% compared to 4.4%)

• people who died of dementia were the most likely to die in a care home (63.2% compared to 20.2%)

• people who died of respiratory disease were most likely to die in hospital (59.7% compared to 44.0%)

• a large majority (79%) of the 23,882 people who died in hospice, died of cancer

Place of death varies by specific underlying cause of death within the major condition groups, Figure 5 shows for example,

• within cardiovascular disease, 60.8% of people who died of stroke occur in hospital, compared to 38.4% of people who died of coronary heart disease. 46.5% of deaths from coronary heart disease occur at home compared to 14.8% of people who died of stroke

• within respiratory disease, 54.7% of deaths from COPD occur in hospital, compared to 72.6% of deaths from pneumonia

  
  

Table 6: Place of death for people who died of 4 major conditions, England 2021

Number of deaths

Place of death	Cancer	Cardiovascular	Dementia	Respiratory	All deaths
Care home	16,433	18,879	37,451	6,435	110,545
Home	56,455	44,674	10,069	12,806	157,312
Hospice	18,979	1,360	381	699	23,882
Hospital	40,566	56,384	10,787	30,431	241,219
Other places	3,212	4,148	612	632	14,690

Percentage of deaths

Place of death	Cancer	Cardiovascular	Dementia	Respiratory	All deaths
Care home	12.1%	15.0%	63.2%	12.6%	20.2%
Home	41.6%	35.6%	17.0%	25.1%	28.7%
Hospice	14.0%	1.1%	0.6%	1.4%	4.4%
Hospital	29.9%	44.9%	18.2%	59.7%	44.0%
Other places	2.4%	3.3%	1.0%	1.2%	2.7%

Figure 5: Place of death for people who died of 4 major conditions, England 2021

By major condition

Cancer

Cardiovascular

Dementia

Respiratory

Local considerations and additional resources

Commissioners and service providers should review the data presented in this factsheet alongside several other data and intelligence tools and reports. They should also consider using locally produced data on specialist palliative care and social care services. We have provided information on the main supporting resources in this section.

Major conditions strategy

This government report sets out the case for change and strategic framework for the final strategy.

Additional data on the major conditions include the Office for Health Improvement and Disparities profiles

• Cancer

• Cardiovascular disease

• Chronic respiratory disease

• Dementia

• Mental health

• Musculoskeletal conditions

and the recently published Premature mortality in adults with severe mental illness (SMI)

Additional data on palliative and end of life care can be found in our Palliative and End of Life Care Profiles. The data on these profiles are grouped into topics and includes: needs assessment, care homes and community, hospital care, place of death, mortality, dementia, and underlying cause of death. The data are shown for multiple geographies. You can also find our two other factsheets on these profiles – Place of Death and Care homes and end of life.

Information and resources for health and social care professionals can be found on the National End of Life Care Intelligence Network’s Palliative and End of Life Care Resources and Publications page. This includes a comprehensive catalogue of condition and setting specific data, intelligence tools, policy and guidance.

Resources supporting this factsheet

Data used to produce this factsheet is available as a spreadsheet

The graphics and tables included in the factsheet are available as a slidedeck

Enquiries

For any queries please email neolcin@dhsc.gov.uk

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Supporting information

Underlying and contributory causes of death

The selection of the underlying cause of death is based on International Classification of Diseases (ICD) rules and is made from the condition or conditions reported by the certifier, as recorded on the death certificate. The underlying cause of death is defined by the World Health Organistation as the disease or injury that initiated the sequence of events directly leading to death or the circumstances of the accident or violence that produced the fatal injury. More details can be found in the Office for National Statistics User guide to mortality statistics.

Data sources

Annual mortality extracts, Office for National Statistics (ONS) © Crown copyright 2023, Re-used with permission of ONS. All rights reserved. Further information available from ONS.
Linked HES - ONS Mortality extract, Office for National Statistics © Crown copyright 2023, NHS Digital © Copyright 2023, Re-used with permission of NHS Digital. All rights reserved. Further information available from NHS Digital.
Hospital Episode Statistics (HES), NHS Digital © Copyright 2023, Re-used with permission of NHS Digital. All rights reserved. Further information available from NHS Digital.

Methodology

Note	Title	Content
1	Cohort definition	The cohort was defined from mortality data. The only exception being the ethnicity which came from a combination of the HES linked mortality data and HES. Hospital activity was extracted for the identified deaths. Deaths are included if * the death was registered in 2021 * the recorded home address is in England. Neonatal deaths are excluded. Deaths were excluded from the HES linked mortality data where the data indicated the existence of hospital activity for the person after the date of death.
2	HES linked mortality data	The HES Linked mortality was deduplicated using the encrypted NHS Number. The HES Linked mortality data only includes people linked to hospital activity recorded in HES. Deaths with no recorded cause of death were excluded. The difference between the reference ONS deaths and the deduplicated HES Linked mortality data was assumed to be people with no hospital activity.
3	Hospital Episode Statistics	Regular day and night attendances were excluded. Hospital admissions (“spells”) were counted after grouping the recorded episodes. The episodes within a spell shared common values of person identifier (TOKEN_PERSON_ID), admission date, provider code (PROCODE3), and provider spell number (PROVSPNOPS). Spells with a discharge date more than 1 day after date of death were excluded. The length of a spell in days is the difference between the discharge date and the admission date. Any spells that started and finished on the same day contribute zero days to calculations of time in hospital.
4	Hospital admissions in 2021	This section included all admissions with an admission date in 2021 whether or not the individual died. Regular day and night attendances were excluded.
5	Time spent in hospital in the final 6 and 3 months of life	This analysis took as a model the end of life care measure Quality Outcome Measure 10: The percentage of last 6 months of life spent at home or in a community setting published in Scotland. For this part of the analysis only, in common with the Scottish measure, deaths from falls and external causes (V00-V99, W20-W99, X00-X99, Y00-Y84) were excluded. When a spell started earlier than 6 (or 3) months before death and finished during the 6 months before death, only the days within the final 6 (or 3) months contributed to this analysis.
6	Emergency hospital admissions in the final 3 months of life	Identified in the HES data as ADMIMETH starting “2”. The final 3 months was coded as within 90 days of the date of death.
7	Cause of death	Categories were determined from the recorded ICD10 codes for underyling cause of death and up to 15 contributory causes of death. Broad * Cancer C00 – C99 * Cardiovascular disease I00 – I99 * Dementia F00, F01, F03, G30, G318, G310 * Respiratory disease J00 – J99 Narrow * Bowel cancer: C18 to C20   * Breast cancer: C50  * Lung cancer: C33, C34  * Prostate cancer: C61  * Coronary heart disease: I20 to I25  * Heart failure: I50  * Stroke: I60 to I69  * Pneumonia: J12 to J18  * Chronic Obstructive Pulmonary Disease: J40 to J44
8	Place of death	Place of death is recorded in the mortality data. For further information on the methods used for all place of death indicators as classified by ONS death certificate data, described in National End of Life Care Intelligence Network publication: Classification of Place of Death: A technical bulletin
9	Ethnicity	Ethnicity is not recorded in mortality records. The ethnic group reported was derived from patient data recorded in HES, associated with a death record through the Linked HES_ONS mortality data. The methodology is described in the Method for assigning ethnic group in the COVID-19 Health Inequalities Monitoring for England (CHIME) tool. In this analysis a pseudonymised data view was used and no linkage was undertaken using patient identifiable data. Deaths imputed to be missing from the Linked HES_ONS mortality data were assigned “unknown” ethnicity.
10	Socio-economic deprivation	The category for each person was determined by the Index of Multiple Deprivation (IMD ) rank for the local area ( Local Super Output Area LSOA) that includes the person’s postcode. LSOA are grouped into 5 quintiles of equal numbers of LSOAs, where quintile 1 includes areas with the highest IMD score, and quintile 5 the lowest. Further details on IMD are available from the government website

Version history

Date	Version	Summary of changes
1 August 2023	1	First publication
18 August 2023	2	Correction of broken link to the factsheet data spreadsheet Addition of a link to the Major Conditions interim report in the Local considerations section