End of Life
This chapter aims to inform a strategic approach to end of life care in Surrey by providing analysis on a wide range of health indicators. Death is inevitable, it is a matter which affects everybody; patients, their relatives, carers, friends those whose work is to provide care and those whose work is to plan and commission care.
Dying well is as important as living well and this chapter will examine how the needs of patients reaching the end of their lives can be met, their care personalised, and their personal wishes respected to ensure they live well until death.
Approximately half a million people die in England each year. In Surrey just under 10,000 people died last year, mostly in the 65+ age group. The majority of deaths occur in hospital, although patients’ personal preferences would be to die at home if possible. Cancers, circulatory diseases, respiratory diseases and mental & behavioural disorders are directly responsible for nearly 85% of deaths which are not sudden.
People nearing the end of their lives often have complex needs, which are predicted to increase as the population is growing and getting older. For instance the over 65 age group is projected to be the fastest growing age group in Surrey between now and 2039. While improved longevity maybe seen as a positive sign it also means that some people will be living longer but not necessarily healthier therefore the variety of needs to be met will be a serious challenge to health and social care organisations. For instance we know that people suffering from dementia remain in acute care longer. They also have more frequent unplanned admissions, are more likely to suffer from falls and have a higher in-hospital mortality rate.
Place of death is an important element to end of life care services. While many would prefer to die at home, it is the quality of care someone receives towards the end of their lives which is essential. It is therefore a priority that commissioners can provide the right care for the individual. This means the right input, from the right people, at the right time, in the right place.
However ensuring this happens is a tremendous challenge in the context of ever increasing financial pressures and growing needs. Overall the population of Surrey is expected to grow by approximately 19% between now and 2039, from 1,161,256 to 1,382,533. The 65+ group is expected to grow the fastest (60%) during this time period, from 213,633 to 342,151.
The pressure on services to cope with complex diagnosis arising from a growing and ageing population will have to be carefully addressed. For instance the number of people with dementia is predicted to rise. The effect of an ageing population will impact on those numbers, their health and social care needs as well as the needs of their carers. Equally the number of individuals with multi-morbidity is increasing, particularly amongst the frail elderly population. An increasing proportion of people with a terminal illness will therefore have other co-existing diseases, thus increasing the complexity of their care needs at the end of their life.
Finally the range of end of life care provisions should be equitable all across Surrey. We know that there is a level of variation with regards to places of death in Surrey which may indicate differences in access to services.
This chapter has been written to inform discussions within Surrey and to identify the next steps in building a more complete picture of end of life care needs across the county.
Visualisation of data used in this chapter
“It matters not how a man dies, but how he lives. The act of dying is not of importance, it lasts so short a time” (1). This quote by Samuel Johnson illustrates perfectly the challenges which Britain faces in relation to end of life care. We know that people are living longer but at the same time we also know that people go through longer period of ill-health before they reach the end of their life and some of them will do so with multiple long-term conditions. Equally more babies and children with life-limiting conditions can now live into adulthood (2).
Forecasting the end of life needs of a growing and ageing population – and the impact of comorbidities – should become a systematic process for those involved in health and social care, especially as financial austerity puts pressure on existing services.
Delivering better care at the end of life is as crucial as shaping health and social care provisions to improve people’s health and wellbeing. In other words dying well should be a normal part of living well (3). Many factors contribute to a “good death”, including the place of death. When asked, most people say they would rather die at home or in a hospice (a care facility that gives supportive care to people during a terminal illness and that focuses on comfort and quality of life rather than on cure) than in a hospital. Interestingly the most recent National Survey of Bereaved People (VOICES) 2015 (4) found that almost 3 out of 4 (74%) respondents felt hospital was the right place for the patient to die, despite only 3% of all respondents stating patients wanted to die in hospital.
Importantly, patients who die at home or in a hospice often have a better quality of life than those who die in hospital, and caring for terminally ill patients in the community is less expensive than caring for them in hospital.
Ultimately, however, it is important to recognise that for some, a “good death” is not necessarily symptomatic of the place it occurs, what really matters are issues such as pain management, financial management, or relationships with family members/carers (5). In one recent survey the top four out of seven fears people admitted to were around death (6):
- Dying in pain (83%)
- Dying alone (67%)
- Being told they are dying (62%)
- Dying in hospital (59%)
- Going bankrupt (41%)
- Divorce/end of a long-term relationship (39%)
- Losing their job (38%)
Choice has a crucial role in health and social care service provision, and for people nearing the end of life. Achievement of choice provides an indication of the quality of services available to support the individual’s preference. Enabling choice in regard to preferred priorities for care and preferred place of death can have a positive impact on bereavement, promoting health and the wellbeing of all involved. In many situations however the nature of someone’s deterioration will dictate the direction of travel, rather than any previous ‘theoretical’ choice, i.e. the clinical scenario reduces the scope of choice.
Also as the current level of resources aimed at addressing the health and social care needs of people at the end of their lives are subject to intense pressure we need to identify sustainable solutions to ensure that services can be more effectively and efficiently delivered. While central government is in charge of drawing the main policy lines the devolution agenda may offer opportunities locally to ensure that needs are met.
This chapter will provide some data and analysis around effective end of life care interventions. Tables and figures will be available in the data visualisation. In particular this chapter will looking into the following areas:
- Who is at risk and why?
- The level of need in the population
- Services in relation to need
- What works – Evidence of best practice
- Recommendations for commissioning
- The 65+ age group is projected to be the fastest growing age group in Surrey between now and 2039;
- In Surrey there are approximately 10,000 deaths each year;
- Cancers (29%), circulatory diseases (28%), respiratory diseases (16%) and mental & behavioural disorders (10%) account for nearly 85% of deaths which are not sudden. (See data visualisation);
- In Surrey 41% of the total number of deaths occur in hospital, followed by :
- 27% in care homes;
- 20% at home;
- 10% in a hospice.
- The current trend is that the percentage of deaths in hospital and in a hospice is decreasing while the percentage of deaths in care homes and at home are increasing. This may be due to a drive to reduce deaths in hospitals. (See data visualisation).
Who’s at risk and why?
About 1% of the general population in the UK die each year (495,309 deaths in England in 2015). The corresponding number for Surrey is around 10,000 (9,952 deaths in 2015 or 0.84% of population).
People who are approaching the end of their lives, their families, their friends are all at risk of experiencing what could be very difficult times. Evidence of best practice recognises that earlier identification of people nearing the end of their life and inclusion on the register should lead to earlier planning and better coordinated care (7). Equally bereavement services have an important role to play to ensure that family members, friends, carers affected by the death of someone close to them, receive the right support to deal with this trauma.
People are considered to be approaching the end of their life when they are likely to die within the next 12 months but of course this can be very difficult to predict. This usually includes people whose death is imminent (expected within a few hours or days) and those with (8):
- Advanced, progressive, incurable conditions;
- General frailty and co-existing conditions which mean they are expected to die within months;
- Existing conditions if they are at risk of dying from a sudden acute crisis in their condition;
- Life-threatening acute conditions caused by sudden catastrophic events.
A study led by Dr Wei Gao and Professor Irene Higginson (9) found that being single, widowed, or divorced was associated with a higher likelihood of dying in hospital than if people are married. Being over the age of 75 was associated with a higher likelihood of dying in hospital than being aged 25–54 although elderly people were more likely to die at home or in a hospice after 2006 than in earlier periods.
The authors also found that one of the most important factor associated with place of death was cancer site. For example, patients who died from a blood (haematological) cancer were more likely to die in hospital than patients with colorectal cancer throughout the study period although the proportion dying at home or in a hospice increased over time.
People in need of palliative care are also particularly vulnerable to disparities in service provisions. Access to specialist palliative care for people with non-cancer diagnoses has improved recently. In 2013, across England, Wales and Northern Ireland, 20 per cent of new referrals to specialist services were for people with a non-cancer diagnosis, up from 12 per cent in 2008. But this still does not adequately reflect the proportions of people who die with non-cancer conditions. Research by the London School of Economics (LSE) commissioned by Marie Curie (10) found that people with non-cancer diagnoses not only receive less specialist care, they also receive less generalist care than people with cancer (although they receive more social care). Based on data for 21,522 people who died between April 2006 and September 2011 in three London primary care trust areas, cancer patients had an average of 11.4 GP visits in their last three months of life compared 3.9 visits for people with other diagnoses, as well as, based on data from nearly 11,000 patients in a single London borough, 452 minutes contact time with a district nurse compared to 191 minutes for people with other diagnoses.
The level of need in the population
This section will look at the following areas:
- Projected demographic trends;
- Overall mortality;
- Places of death;
- Hospital activity within 6 months before death;
- Seasonal variation;
- Demand for palliative care;
- Children and Young People;
Projected demographic trends
Information in this section is available at Surrey, CCG and local authority levels. (See data visualisation).
The population of England is expected to grow by 4.1 million (7.5%) by mid-2024. The projected growth varies considerably by age groups. However the fastest growing age group (people aged 65 and over) is projected to grow by approximately 20% over the next 10 years and by nearly 60% over the next 25 years in England (11).
Interestingly the changing composition of the oldest population age group shows an increase in the share of the very old. Looking at the 65 to 69 and the 85+ age groups the former is projected to shrink by 8.6 percentage points and the latter is projected to expand its share by 6.5 percentage points over the next 25 years.
Overall the population of Surrey is expected to grow by approximately 19% between now and 2039, from 1,161,256 to 1,382,533. Similarly to the pattern showed by ONS data the 65+ age group is expected to grow the fastest (60%) during this time period, from 213,633 to 342,151.
It is projected that the 65+ age group in Guildford and Waverley CCG will have the highest increase (65%) between now and 2039, while in East Surrey CCG the projected increase for the same age group will be the lowest at 59%.
It is important to acknowledge that these achievements in longevity come with some significant challenges in relation to the provision of health and social care interventions and support. Although people are living longer, they are not necessarily healthier than before, the World Health Organisation (WHO) has estimated that nearly a quarter (23%) of the overall global burden of death and illness is in people aged over 60, and much of this burden is attributable to long-term illness caused by diseases such as cancer, chronic respiratory diseases, heart disease, musculoskeletal diseases (such as arthritis and osteoporosis), and mental and neurological disorders (12).
With this in mind it is paramount that the level of care provided to individuals towards the end of their lives is specifically aligned to their present and likely ongoing needs. While prognosis is relevant – a treatment which is futile should not be offered to someone even if their prognosis is over 12 months, conversely if hospital could help, it should be offered to someone even if in their final month.
Forecasting the impact of these challenges on end of life care needs is complex. Similarly the assumption that the larger the older population group the higher the costs associated with providing health and social care intervention would be too simplistic and inaccurate. One element of certainty though is that two recent reports by the King’s Fund (2013) and the Office for Budget Responsibility (2015) found that public finances are likely to be pressured over the next 50 years (13).
Overall mortality / rates and causes
See the data visualisation for data in this section.
The number of deaths in Surrey in 2015-16 (excluding sudden and unexpected deaths) totalled at 8,685 or 0.84% of the population. Trend data shows that the number of deaths decreased over the period from 1995 to 2009 in both England and Surrey. Since 2009, the number of deaths have increased.
During the same period the age-standardised mortality rate has been in decline – this is due to the improved lifestyles and medical advances in the treatment and diagnosis of many illnesses and diseases. In Surrey this rate per 100,000 has decreased from 1,234 (or 1.2%) in 1995 to 831 (0.8%) in 2014. The comparative data for England (which also shows this rate dropping over this period) are 1,384 (1.3%) and 947 (0.9%).
The increase in life expectancies has led to both an increase in the size of the overall population and in the number of the elderly people (the mortality rate is higher in the elderly). Hence, the number of deaths would be anticipated to increase.
The mortality figures for district & boroughs in Surrey over a 3-year period (2012-14) show that Reigate & Banstead have directly standardised rates significantly higher than those for Surrey overall for persons and for males. Spelthorne has similar results. Tandridge has the highest DSR? in Surrey and Surrey Heath also has a significantly higher rate than that for Surrey. This statistical significance for the latter two areas relates to females and persons overall.
In terms of % of deaths by cause, the underlying cause of death is taken from the medical condition or conditions mentioned on the Medical Certificate of Cause of Death. The World Health Organisation (WHO) defines this as:
(a) the disease or injury which initiated the train of morbid events leading directly to death, or
(b) the circumstances of the accident or violence which produced the fatal injury.”
The leading causes of death in terms of the broad categorisation of death (i.e. ICD10 Chapter) in Surrey are Cancer (26% for females and 32% for males), diseases of the circulatory system (26% for females and 28% for males) and respiratory diseases (15% females and males) – these account for 67% of female deaths and 75% of male deaths in Surrey.
Mental health is given as the underlying cause of death for 12% of females and 6% of males – this is predominantly dementia conditions (including Alzheimer’s disease, dementia and senility). There appear to be very little variation to those patterns across all Surrey CCGs.
Breaking down the data for Surrey shows that cancer deaths account for almost 45% of deaths in the under 75s whereas overall it is the underlying cause of death in 29%. Circulatory disease accounts for 28% of total deaths and drops to 20% in the under 75 age group. The three main causes account for around 70% of deaths overall and in the under 75s. Mental and Behavioural disorders account for nearly 10% overall – this is predominantly dementia and Alzheimer’s disease.
During the period 2006/07 -2015/16, the proportion of deaths from diseases of the circulatory system in Surrey has decreased from 35% to 28% of total deaths. In the same period the proportion of deaths from cancer (neoplasms) has slightly increased from 25% to 29% (Figure 3.3.2), indicating indicated perhaps greater need of services for people with cancer.
Changes in the recording of dementias as the underlying cause of death is likely to be responsible for the increasing number of deaths attributed to mental and behavioural causes, i.e. this reflects the increasing prevalence of the dementias in an ageing population.
Cancer is the leading cause of death in the under 75’s, accounting for around 45% of total deaths. This has remained fairly static since 2006/07. The second leading cause of death in this age group relates to circulatory disease albeit this has dropped from 25% to 20%.
Diseases of the circulatory system are the leading cause of death in 75 years and over age group albeit this has declined from 28% to 22% in the last 10 years probably indicative of improved treatments. Cancers has proportionately increased accounting for about 15% of deaths. More dramatically has been the increase in dementias from 2% to 10% in this period. Also diseases of the nervous system have shown a proportionately steady increase from 2% to 5% of deaths.
Place of death in Surrey
See the data visualisation for data in this section.
Most people die in hospital although many say they would prefer to die at home as long as they receive high quality care and do not place too great a burden on their families and carers. In Surrey, the proportion of deaths (excluding unexpected deaths) in hospital has fallen from 43% in 2011/12 to 40% in 2015/16. In the same period, the proportion of deaths occurring at people’s home increased slightly from 19% to 21%, while deaths in care home increased from 26% to 28%.
There is a lot of variation in place of death across geographies of Surrey. The percentage of hospital deaths range from 36% in Guildford and Waverley CCG to 43% in Surrey Downs CCG. There is a larger variability in the percentage of deaths at Care Homes ranging from 26% in Surrey Downs CCG to 35% in East Surrey CCG. Hospice deaths ranged from 6% (East Surrey CCG and Guildford and Waverley CCG) to 13% (in North West Surrey CCG).
These figures may indicate differences in access to services across Surrey including proximity of hospitals and hospices. For people to be able to achieve their preferred place of death with dignity, high quality end of life care services need to be available in all settings throughout the county.
- Trends in the main causes of death by location over the period 2006/07 – 2015/16:
Deaths from circulatory diseases accounted for the main cause of death in care homes in 2006/07 (35%). This has been superseded by dementia which in 2015/16 accounted for 36% of deaths whereas those from circulatory disease decreased to 20%.
For all age groups, the highest percentage of deaths in Surrey take place in hospital.
Deaths in care homes account for the second highest percentage of deaths in people aged over 85. Care homes were the predominant locations of deaths where dementia, Alzheimer’s disease or senility were recorded as contributory factors. Care homes need the links to services and trained staff to provide high quality end of life care for older people who may be very frail and suffering from multiple morbidities.
The percentage of deaths at home decreases with age from 25% of people dying aged under 65 to only 10% of deaths of people aged over 85 as older people are less likely to be living with family members who can care for them. Deaths in hospices also decrease from 25% of deaths under 65 to only 2% over 85. Possibly because a higher percentage of over 85s are already living in supported care environments i.e care homes.
The highest percentages of deaths in care homes and hospitals are of people aged over 85. The highest percentages of deaths at home is in those aged under 65 years. The highest percentage of deaths in hospices are of people aged under 75.
Gomes et al (2013) reviewed whether home based palliative care services were a) effective at improving the likelihood of recipients dying at home, b) effective at improving clinical and other outcomes and c) cost effective. The majority of participants in the studies had a diagnosis of cancer, but other conditions included congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis. The authors reported a doubling of the odds of dying at home when receiving palliative care compared to usual care and a reduction in symptom burden. There was limited evidence reported on the cost-effectiveness of home-based palliative care services (14).
- % hospital deaths (excluding unexpected deaths) by CCG:
East Surrey, Guildford & Waverley and Surrey Heath CCGs all clearly show trends towards lower percentages of deaths in acute hospitals than the Surrey average (or on par with). Whereas, Surrey Downs CCG consistently has a higher percentage of hospital deaths.
- Place of death by cause over the 5 year period (2011/12-2015/16) in Surrey :
The pattern in place of death varies by cause of death. Overall, most deaths are in hospitals which is the main place of death for many of the other major causes of death except where the underlying cause is dementia or Alzheimer’s disease – these occur predominantly in Care Homes (65%). Around 22% of Cancer deaths occur in hospices.
- Changing trends over the period 2011/12 – 2015/16 in location of death in Surrey for the principal underlying causes: (a) cancer, (b) circulatory disease, (c) respiratory disease and (d) dementia :
In this period, the percentage of deaths from cancer in hospital has remained fairly constant at 35%; hospice deaths have dropped from 25% to just over 20% and deaths at home has risen slightly. The percentage of deaths from diseases of the circulatory system occurring in hospital has fallen from 52% in 2011/12 to 47% in 2015/16 albeit this location accounts for the highest percentage of deaths from circulatory disease. Deaths at home has increased from 25% to almost 30%. Most deaths from respiratory disease occurred in hospital (60%). Care Homes accounted for 25% of deaths from respiratory disease. Over 65% of dementia deaths occur in Care Homes and 25% in hospitals.
It is worth noting that ‘bronchopneumonia’ is a very common cause of death on death certificate and unless it is has been made clear on the certificate that this is secondary to frailty/ age/ dementia for instance then it may reflect an ‘over-counting’ of respiratory disease.
These figures could indicate that services are not meeting the needs of people dying from circulatory and respiratory diseases who would prefer to die at home.
There were fewer cancer deaths in hospices and more at home and in care homes in East Surrey, Guildford & Waverley and Surrey Downs CCGs. In North West Surrey, there were more deaths in hospices and fewer at home.
Main cause of death
See the data visualisation for data in this section.
Cancer (28.6%) and Circulatory diseases (26.9%) are the two leading causes of death in Surrey for the period 2011/12 to 2015-16, followed by Respiratory diseases (15.1%) and Mental and behavioural disorders (15.1%).
Deaths from cancer tend to affect men more than women (31.8% v 25.7%) while deaths attributed to Mental and behavioural disorders affect women substantially more than men (12% v 6.2%). Evidence shows that worldwide, dementia disproportionately affects women and more women live with dementia than men.
See the data visualisation for data in this section.
Data shows that more deaths occur during winter months – typically between December and March – this pattern is particularly exacerbated when looking at respiratory conditions.
The overall trend shows that although hospital deaths has been slightly decreasing whilst deaths in care homes and homes has been increasing, it is still the place where the highest number of deaths happen, especially in the winter months. This has clear implications in relation to service planning and staffing.
Demand for palliative care
See the data visualisation for data in this section.
The World Health Organisation (WHO) defines Palliative care as an approach which improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (15).
‘Palliative Care’ describes the holistic care of a person with an incurable or advancing disease with limited prognosis. It encapsulates both symptom control and supportive elements of care. It is distinct from but works alongside other specialist medical treatments targeting only the underlying disease process.
The WHO also defines Palliative care for children as a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders:
- Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.
- It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
- Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.
- Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
- It can be provided in tertiary care facilities, in community health centres and even in children’s homes.
One aim of Palliative care is to treat or manage pain and other physical symptoms.. It is not just for people diagnosed with terminal cancer, but any terminal condition. It is also for people who have a complex illness and need their symptoms controlled. Although these people usually have an advanced, progressive condition, this is not always the case (16).
The projected numbers of deaths and people requiring palliative care in Surrey have been estimated for the years 2015 to 2030. The numbers of deaths were calculated from the Office of National Statistics (ONS) population projections (2008) and the age and sex specific death rates from 2002 to 2010 which show a downward trend of 1.5% per year (17).
The national prevalence of people in palliative care in England is 0.34%. Data for Surrey shows some level of variation between Surrey CCGs. The prevalence of people in palliative care is 0.16% in Surrey Heath. However in Guildford and Waverley CCG the prevalence rises to 0.71% which is over twice the national average. This is likely to be due to the Frailty Initiative and use of PACe (Proactive Anticipatory Care) planning which includes people who are not at their end of life.
In this context PACe usage is not just for people at end of life. It is aimed at:
- People who have been diagnosed with a terminal illness (amber/red on the GSF register) i.e. with weeks or days to live;
- People with a terminal diagnosis who want to be clear on their future care;
- People living in nursing homes/residential care;
- People living in the community with long term conditions where hospital admission may not offer clear benefit.
Therefore, G&W’s QOF figure is highly unlikely to be a true reflection of numbers of people at end of life.
A robust yet flexible palliative care system is essential because end-of-life care scenarios are frequently complex and clinically challenging (e.g. with multiple concurrent disease processes, a rapidly changing picture, polypharmacy, multiple coexisting symptoms and concerns across different dimensions, multiple inputting teams undermining continuity, a short window to address issues, and ethical dilemmas around ceilings of care, futility, rationing, autonomy).
Children and Young People
The ONS bulletin on mortality 2015 shows that in 2015, there were 2,721 infant deaths (under 1 year of age) registered in England and Wales; resulting in an infant mortality rate of 3.9 deaths per 1,000 live births, unchanged from 2014. The neonatal rate (deaths under 28 days) and the postneonatal rate (deaths over 28 days and under 1 year) also remained unchanged in 2015.
In Surrey there were 334 deaths in people aged 20 years and under for the period 2011/12 – 2015/16. 68% of these deaths (228) occurred in children aged 0-4. Perinatal disorders was the leading cause of deaths in this period (140) as well as the leading cause of deaths in children aged 0-4.
The second leading cause of death was congenital malformations (44). It was also the leading cause of deaths in children aged 0-4.
Infant, Neonatal and Postneonatal rates have been declining over the years. There are many established risk factors for infant mortality such as prematurity, low birthweight and multiple births. Risk factors are known to vary according to age at death. For example, the effect of low birthweight and prematurity is stronger in the first 28 days, while socio-economic status is strongly associated with deaths under 1 year.
NICE estimates that almost 50,000 children and young people aged 19 years or under in the UK are living with a life-limiting condition at any time, and may as a result need end of life care. Some of these children and young people also have severe disabilities and multiple complex health and care needs, in addition to end of life care needs. The importance of support for children and young people with life-limiting conditions is therefore crucial. Complications of pre-term birth, particularly respiratory and cardiovascular conditions, account for about half of infant deaths. Congenital anomalies account for about a further third.
Dying with dementia
Dementia is a term that describes a group of symptoms, such as memory loss, which are caused by many diseases which affect the brain. There are over 16,000 people living with dementia in Surrey – predictably an under estimate. It is not a natural part of ageing and some rarer types can affect people under the age of 65.
In 2014, there were 73,189 deaths (in England) with a recorded mention of dementia. Nearly all of these deaths occurred in people aged 65 and over (72,504), representing 18% of all deaths in this age group. The mortality rate of deaths with a mention of dementia have increased significantly; from 106 deaths per 100,000 population in 2001 to 188 deaths per 100,000 population in 2014, this is in contrast to overall mortality rate for all causes which is falling. Overall, there is a higher age-standardised mortality rate of deaths with a mention of unspecified dementia subtype compared with other subtypes. The rate of deaths with a recorded mention of vascular dementia increased significantly in 2011 whereas deaths with Alzheimer’s disease have increased steadily over the period.
The number of people with dementia is predicted to rise. The effect of an ageing population will impact on the numbers of people living with dementia, the health and social care needs of people with dementia, and the needs of their carers. Dementia has no gender barriers and affects both men and women, but two thirds of people with dementia are women. Research tends to highlight the reason for this is that women live longer than men and as such are more likely to have health conditions such as dementia that is typically associated with old age. One factor that has been suggested in the development of Alzheimer’s disease is a lack of the hormone oestrogen in women after the menopause.
The elderly population of Surrey is expected to increase in future decades. As the prevalence of dementia and cognitive impairment increases with age, the number of people suffering from these conditions and approaching the end of their lives in care homes in Surrey is likely to increase.
Mental and behavioural or nervous system (predominantly the dementias) is the leading underlying cause of death accounting for 35% of deaths of care home residents. 82% of these residents died in a care home (18% elsewhere).
Again, this indicates the need for more care home places and staff trained to care for people with these challenging conditions and also for increasing the skills and capacity for carers and care workers to manage them at home as they approach the end of life. In this context ‘dual training’ is particularly relevant to ensure continuity in the provision of ‘care’ as well as healthcare.
More than a third of all deaths in 2012-14 with a recorded mention of dementia in those aged 65+ also have a mention of respiratory disease (38%). A similar proportion of deaths have a recorded mention of dementia and circulatory disease (36%). The age and gender profile for those dying with dementia and respiratory disease or circulatory disease is similar to that observed for dementia overall. A comparatively smaller proportion of deaths had a recorded mention of dementia and cancer (9%), perhaps due to the younger age profile of those who have died with cancer.
Key messages from Public Health England include the following:
- The mortality rate for deaths with a mention of dementia has increased significantly from 2001 to 2014;
- Data suggests that people who reside in more deprived areas die younger with dementia; the relationship is small but significant;
- More than half of dementia deaths for people aged 65+ occurred in care homes, compared with a quarter of the general population;
- More than a third of dementia deaths also had a record of respiratory disease and more than a third had a record of circulatory diseases;
- Recommendations include focusing on dementia specific palliative services, improving the adoption and quality of advance care planning and advocating GP led holistic reviews for more co-ordinated care.
Services in relation to need.
The provision of end of life care involves palliative and supportive care where the goal is achievement of the best quality of life (inclusive of symptom control) for patients and their families. A range of people from informal carers to others with more specialised skills such as medical, nursing and allied health and social care professionals provides this.
The focus of palliative care is holistic, patient centred and family centred, with a view to providing support whatever the setting whether in people’s own homes, hospital, and hospice or care homes. In relation to place of death, national research demonstrates a disparity between patients preferred place of death, and the actual place of death. Whilst over 50% would prefer to die at home this is only achieved for approximately 20% of people whatever the cause of death. Although it is important to recognise that while personal ‘choices’ matter, the quality of the care received is the key.
There are five main elements to a community palliative care service:
- The NHS District Nursing service, which coordinates the provision of end of life home nursing and delivers some hands-on care; this includes collaboration across CCGs in Surrey joint with hospices (COSI and CHNNS) – covering non-specialist patients too;
- Community nursing providing hands-on care as needed on a 24/7 basis;
- Social care for people at home;
- Community specialist palliative care – specialist advice alongside the patient’s own doctor and district nurse to enable them to stay in their own home;
- Hospital or hospice palliative care outpatient services.
In a large analysis led by Dr Wei Gao and Professor Irene Higginson from King’s College London, the authors used death registration data collected by the Office of National Statistics to identify all 2.28 million adult cancer deaths in England between 1993 and 2010. Throughout the study period, the authors found that hospital was the commonest place of death—48% of cancer deaths—whereas 24.5% deaths of cancer patients occurred at home and 16.4% occurred in hospices (18).
However, the authors found that the proportion of home deaths increased after 2005 whereas the proportion of hospital deaths declined. The proportion of deaths in hospices also increased over the study period.
Research has found that end-of-life care in hospital may be associated with three times higher daily costs than in community care settings (19). Therefore, reducing inappropriate deaths in hospital, and increasing home and hospice support, should become a central focus for commissioners and providers.
Surrey County Council Health and Scrutiny Committee views improving end of life care as a priority for health and social care services and in particular CCGs. In that respect ensuring people and their families are able to access the care they need, as well as die with dignity in their preferred setting of care is essential (20).
Surrey CCGs have all identified a number of service needs in relation to improving quality of life at the end of life. Improving and respecting patient’s choice, strengthening care planning and coordination, improving workforce development are some areas which require a strengthened focus.
Service needs by CCG area:
NHS East Surrey CCG:
- 100% of patients known to the community as reaching the end of their life being able to die in their chosen setting by developing end of life care plans and the development of an end of life care team;
- Improved care for patients in care homes by commissioning GPs to offer targeted support to community care homes focusing on medications reviews, end of life care planning and treating patients outside of acute care settings;
- Implementation of End of Life Care registers which has resulted in all patients on the End of Life Care register dying outside of hospital in line with their wishes;
- Health Hubs to assist local nursing and care homes in supporting End of Life Care to improve patient experience as well as reduce unnecessary transports to hospital and resultant admissions. This will enable greater access to urgent care in order that patients do not need to attend A&E.
NHS Guildford and Waverley CCG:
- Support patients who are reaching the end of their life to be cared for and to die in their chosen setting, by developing an integrated specialist palliative care service provided by the local hospice;
- Improve care for patients in care homes by commissioning targeted support to community care homes, focusing on medication reviews, end of life care planning and treating, where appropriate, patients outside of acute care settings;
- Support patient choice.
NHS North West Surrey CCG:
- As part of the integrated frailty pathway, to ensure that older and more vulnerable people receive (i) proactive support to keep them independent and well in their own place of residence (ii) responsive care that delivers timely interventions when required to avoid the need for urgent or emergency care and (iii) support for people at end of life;
- Development of locality hubs to improve dementia care and end of life care;
- Dedicated pharmacist to optimise prescribing in several care homes, particularly in end of life situations;
- Coordinated end of life service (CoSI) – A community-based end-of-life care service which aims to improve the patient’s experience of receiving care at home in the last six to eight weeks of life.
NHS Surrey Downs CCG:
- Ensure a higher number of patients achieve their preferred place of death;
- Increase the levels of community engagement and education to ensure everyone knows of the services available to support the dying patients;
- Ensure workforce training and education that is offered across the whole system;
- Identify the frailty and elderly in order to avoid crisis and ensure pro-active management, and improve recognition of the ceiling of care for an individual both in hospital and the community (recognising when someone is dying);
- Encourage active use of advance care planning.
NHS Surrey Heath CCG:
- Improve the range of support available to people in their own homes for as long their needs allow;
- Improve the quality of general practice initial assessment and documentation for patients on admission to nursing homes. To include :
- assessment of risk factors which would contribute to the likelihood of a hospital admission
- completion of EOLC (end of life care) documentation
- dementia assessment, if appropriate
- medication review
Patients’ views on care needs
Research suggests that people want the following things at the end of life (21):
- Pain and symptoms controlled;
- Spiritual/existentialist peace/acceptance;
- Preservation of identity;
- Dignity (wishes, cultural and religious traditions) respected;
- Compassionate medical staff;
- Die in place of choice – may be influenced by culture;
- Not alone (with family present);
- Not to be a burden on family;
- Some want to make their own decisions, others to delegate;
- Some want to die – acceptance of life’s natural course, loss of identity and independence.
The National Survey of Bereaved People (VOICES, Views of Informal Carers – Evaluation of Services) collects information on bereaved people’s views on the quality of care provided to a friend or relative in the last 3 months of life, for England. The survey has now been run for 5 years and was commissioned by the Department of Health in 2011 and 2012, and NHS England from 2013. It is administered by the Office for National Statistics (ONS).
- 3 out of 4 bereaved people nationally (75%) rate the overall quality of end of life care for their relative as outstanding, excellent or good; 1 out of 10 (10%) rated care as poor;
- Overall quality of care for females was rated significantly higher than males with 44% of respondents rating the care as outstanding or excellent compared with 39% for males;
- 7 out of 10 people (69%) rated hospital care as outstanding, excellent or good which is significantly lower compared with care homes (82%), hospice care (79%) or care at home (79%);
- Ratings of fair or poor quality of care are significantly higher for those living in the most deprived areas (29%) compared with the least deprived areas (22%);
- 1 out of 3 (33%) reported that the hospital services did not work well together with GP and other services outside the hospital;
- 3 out of 4 bereaved people (75%) agreed that the patient’s nutritional needs were met in the last 2 days of life, 1 out of 8 (13%) disagreed that the patient had support to eat or receive nutrition;
- More than 3 out of 4 bereaved people (78%) agreed that the patient had support to drink or receive fluid in the last 2 days of life, almost 1 out of 8 (12%) disagreed that the patient had support to drink or receive fluid;
- More than 5 out of 6 bereaved people (86%) understood the information provided by health care professionals, but 1 out of 6 (16%) said they did not have time to ask questions to health care professionals;
- Almost 3 out of 4 (74%) respondents felt hospital was the right place for the patient to die, despite only 3% of all respondents stating patients wanted to die in hospital.
Cost of end of life care
Research by Georghiou and Bardsley (22) shows the impact of several care settings on costs during the final 90 days of life. The study provides a useful approximation of the end of life costs associated with: primary care (GP consultations only); community care (nursing care only); social care (local authority only); hospice care (inpatient); and acute hospital care. In the last three months of life, acute care costs are the largest single sector cost, averaging £4,600 per person. Local authority social care costs were found to average £1,000 per individual who died, while GP consultations cost approximately £150, and district nursing care averaged £280 per death. While person-level hospice or palliative data was unavailable, this was estimated at £550 per death.
A key element of this study is that the authors show that replacing acute care costs with community and palliative care nursing services would be likely to reduce end of life costs. Interestingly nationally there remains a large unmet need for palliative care. King’s College London, commissioned by the Palliative Care Funding Review has estimated that between 92,000 and 142,500 people each year have an unmet need for palliative care (23).
Marie Curie Cancer Care estimates that between 355,000 and 457,000 patients nationally need palliative care every year. If additional community services were developed to enable even 30,000 patients to reduce their hospital stay by just four days, there would be a potential saving of £34 million annually.
A report by the Nuffield Trust (24) found that the average cost per user of providing social care (including equipment and adaptations) to individuals in the last year of life was £9,972. This equates to £27 per day, although the amount of social care that individuals use per month increases slightly in the last three months of life. This may be an overestimate of the average cost per day of social care for patients at the end of life, as it assumes that all patients will require social care – the Nuffield Trust study found that only around 30 per cent of people used local authority funded social care in the last year of life.
Marie Curie Cancer Care has compared the weekly costs of community palliative care with specialist in-patient palliative care has shown in the table below:
|Cost per contract||Contacts per week||Cost per week||Cost per day|
|Community nursing (8 hours pre contact)**||£246||1.9||£465||£66|
|Community nurse specialist (1 hour)||£77||1||£77||£11|
|Hospital in-patient specialist palliative care*||£2,975||£425|
Figures are shown to the nearest £, but calculations based on unrounded figures.
* = Unit Costs of Health and Social Care, University of Kent, 2010
** = Marie Curie Nursing Service Data
*** = Social Care and Hospital Use at the End of Life, Nuffield Trust, 2010
The table shows that the estimated cost of a day of community care at the end of life is £145 compared to the cost of £425 for a specialist palliative care bed day in hospital. This clearly indicates that changing the setting of care of a patient at the end of life has the potential to reduce the daily cost by £280 (25). However care settings should be aligned to personal needs and vice versa both community and specialist palliative care services are necessary to the end of life care economy.
Evidence of best practice (26) tend to demonstrate that improvements across 3 key end of life interventions may have the potential to mitigate some of the rising costs of an ageing population. Again the best possible care according to needs should drive improvements.
- Investments in palliative care teams;
- Advance care planning;
- Care integration for individuals with multi-morbidity.
In relation to end of life spending in acute care a recent study looked at how certain factors are likely to affect emergency and elective admissions (i.e patient’s age, year of birth, patient’s admission year). The authors found that population ageing alone does not explain rising emergency admissions in the NHS between 1997/98 and 2014/15. They suggested that the main influences on rising emergency and elective admissions are likely to be clinical- and demand-side factors unrelated to population ageing (27).
Those findings appear to be concurrent with a Swiss study comparing health care expenditure at end of life which found that most components of acute care are driven by proximity to death and not necessarily population ageing (28). However, acute care costs for long-term care patients are shown to be heavily age reliant, no matter whether the patient is a decedent or survivor. The authors suggest that the costs of health care are driven mainly by medical technology, and that this could be more prevalent in long-term care settings when patients have limited life expectancy.
As for complex needs patients such as patients suffering from dementia, they tend to remain in acute care longer, have a higher likelihood of being readmitted, are more likely to suffer from falls and have a higher in-hospital mortality rate (29). It is estimated that once admitted to hospital a patient with dementia is much less likely to return home following their stay. The estimated cost impact in England of dementia within acute care was found to be £265 million, which is composed of increased bed days (£120 million), readmissions (£120 million), and falls (£25 million) (CHKS 2013). Medical treatment for individuals with multi-morbidity and dementia is made more complex by heath care environments that focus on acute and episodic care for single diseases. Therefore, clinical and long-term care design should better reflect the needs of the elderly with multi-morbidity, and particularly for those with dementia.
This section provides links to existing national strategies, guidance, frameworks and evidence of best practice in relation to end of life care.
- End of life care strategy : promoting high quality care for adults at the end of their life, Department of Health, 2008, https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life;
- NHS Actions for end of life care 2014-16, NHS England, 2014, https://www.england.nhs.uk/wp-content/uploads/2014/11/actions-eolc.pdf
- Royal College of General Practitioners – http://www.rcgp.org.uk/clinical-and-research/toolkits/palliative-and-end-of-life-care-toolkit.aspx
- 2010 to 2015 government policy : End of life care, policy paper, 2013, https://www.gov.uk/government/publications/2010-to-2015-government-policy-end-of-life-care;
- Choice in end of life care, department of health, independent report, 2015, https://www.gov.uk/government/publications/choice-in-end-of-life-care;
- National Palliative and End of Life Care Partnership, Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020, http://endoflifecareambitions.org.uk/wp-content/uploads/2015/09/Ambitions-for-Palliative-and-End-of-Life-Care.pdf;
- The King’s Fund, innovative approaches to end-of-life care; https://www.kingsfund.org.uk/events/innovative-approaches-end-life-care
- NICE guideline 31, Care of dying adults in the last days of life, December 2015;
- NICE 16 End of Life quality standards – https://www.nice.org.uk/guidance/qs13
- NICE guideline 61, End of life care for infants, children and young people with life-limiting conditions : planning and management, https://www.nice.org.uk/guidance/ng61
- NICE, End of life care for people with life-limiting conditions, Flowchart, https://pathways.nice.org.uk/pathways/end-of-life-care-for-people-with-life-limiting-conditions;
- End of life care Audit : Dying in hospital, National report for England 2016, Royal College of Physicians – Marie Curie, https://www.rcplondon.ac.uk/projects/outputs/end-life-care-audit-dying-hospital-national-report-england-2016
- PHE, National Mental Health Dementia & Neurology Intelligence Network, Dying with Dementia, http://www.yhpho.org.uk/resource/view.aspx?RID=237877
- Ambitions for palliative care – http://endoflifecareambitions.org.uk/
- International Children’s Palliative Care Network – http://www.togetherforshortlives.org.uk/about/our_partners/231_international_children_s_palliative_care_network_icpcn
- National survey of bereaved people – http://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/previousReleases
North West Surrey Co-ordinated, Safe, Integrated Service (CoSI)
The COSI (End of Life Care) service – a partnership with Woking and Sam Beare Hospice, Princess Alice Hospice, Marie Curie, Ashford and St Peter’s Hospitals and Virgin Care the service provides specialist end of life care. In particular, patients and families benefit from having one single number to call (available 24/7) which then gives them access to a comprehensive range of services from a number of different organisations. The service enables over 95% of patients to die in their preferred care setting, significantly higher than the national average which ranges from between 54% and 76%, depending on whether the patient has a palliative care record.
The project was first piloted in September 2014 and was later, following further evaluation, commissioned for roll-out. During the pilot, the programme made a significant difference to the care patients received. 100% of individuals referred to CoSI were contacted within 24 hours of their referral being received and 96% of individuals under the care of CoSI died in their preferred place of death, compared against a population average of just 54%.
This had a big impact on the number of admissions to hospital, with 81% of patients under the care of CoSI not having any admissions to hospital or attendances at A&E. This had a real benefit with regards to the cost effectiveness of the programme. There was a significant reduction observed in the frequency and complexity of admissions into acute hospitals resulting in a saving per patient of £1,974 to the health economy.
The service which operates across North West Surrey CCG delivers the following:
- Robust advance care planning;
- Specialist pain and symptom management;
- Psychological support;
- 24/7 specialist nursing and medical advice;
- Carers and family support including respite;
- Community nursing;
- Social care and Continuing Healthcare Packages.
Recommendations for Commissioning
- Unified and collaborative approach to modelling end of life care needs. It is recommended that the Surrey Health and Wellbeing Board leads on the development of a Surrey-wide end of life care strategy. This should provide not only coherence across a layered health and social care infrastructure but also strategic leadership which in this context is key;
- Cross-sector promotion of end of life care needs. The overall focus of end of life care must be a community model, with input from specialist services when needed. Local leaders, commissioners, professionals and our populations should generate a culture where talking about and planning for the last phase of life is ‘normal’;
- Map local specialist end of life care services, including activity and financial information where possible to determine whether services are provided equitably across the county and in relation to need; The end point should be an effective care planning and coordination end of life care system;
- Engage with clinicians to develop a local understanding of the roles and responsibilities of generalist and specialist end of life care services, including a gap analysis to estimate the need for specialist and generalist services;
- Audit provision of current end of life care services against the NICE Quality Standards for end of life care;
- Obtain local activity data to use in conjunction with national models to explore potential cost savings to the local health and social care economy by investing in community-based end of life care services;
- It is paramount that those involved at point of care, irrespective of which settings they work in, all sing from the same hymn sheet. Therefore it is recommended that formal and informal training and education programs for all frontline practitioners needs to be coordinated, systematic, visible and evaluated, in line with good practice guidelines.
Consultant : Dr Liz Saunders
Public Health Lead : Cyril Haessig
Analysts : Chris Willson, Anu Shaikh, Alessandra Denotti
- Samuel Johnson (1709-1784) British author
- NHS actions for end of life care 2014-16, NHS England, 2014
- The King’s Fund, Delivering better care at end of life – the next steps, Report from the Sir Roger Bannister health summit, Leeds Castle – 19/20 November 2009, https://www.kingsfund.org.uk/sites/files/kf/Delivering-better-care-end-of-life-Kings-Fund-January-2010-Leeds-Castle-EOLC.pdf
- Melanie Waghorn, Holly Young and Andrew Davies, Opinions of patients with cancer on the relative importance of place of death in the context of a ‘good death’, 2011, BMJ, http://spcare.bmj.com/content/early/2011/08/25/bmjspcare-2011-000041
- ComRes Opinion Poll for Dying Matters’ ‘No Dress Rehearsals’, Aug 2011; as cited in ‘What do we know now that we didn’t know a year ago? New intelligence on end of life care in England.’ National end of life care Intelligence Network. 2012 (reviewed 2013).
- Royal College of General Practitioners, GSF National Primary Care Snapshot Audit, 2010.
- General Medical Council, UK 2010
- Wei Gao , Yuen K. Ho, Julia Verne, Myer Glickman, Irene J. Higginson, on behalf of the GUIDE_Care project , Changing patterns in place of cancer death in England : A population-based study, March 2013
- Josie Dixon, Derek King, Tihana Matosevic, Michael Clark and Martin Knapp, Equity in the Provision of
Palliative Care in the UK: Review of Evidence, Personal Social Services Research Unit London School of Economics and Political Science, 2015
- WHO, “Ageing well” must be a global priority, 2014 http://www.who.int/mediacentre/news/releases/2014/lancet-ageing-series/en/
- Appleby J (2013) Spending on Health and Social Care Over the Next 50 Years Why Think Long Term? The Kings Fund, 1–68.
- Gomes, B. et al (2013) Effectiveness and cost-effectiveness of home palliative care services for adults with
advanced illness and their caregivers Cochrane Database of Systematic Reviews 2013, Issue 6.
- Source : ONS Subnational Population Projections (2008)
- Marie Curie Cancer Care (2012) Understanding the cost of end of life care in different settings. 8 p. London: Marie Curie Cancer Care
- Ethical challenges in end of life care in a pluralist society. Presentation by Professor Julia Verne, National End of Life Care Intelligence Network. 2013
- Georghiou T, Bardsley M (2014) Exploring the Cost of Care at the End of Life, Nuffield Trust, London.
- Palliative Care Funding Review , Thomas Hughes-Hallett and Professor Alan Craft, 2011
- Social Care and Hospital Use at the End of Life (2010) Martin Bardsley, Theo Georghiou and Jennifer Dixon
- Marie Curie Cancer Care, Understanding the cost of end of life care in different settings, 2012
- Matthew Townsend, The Impact of an Ageing Population on End of Life Care Costs, Personal Social Services Research Unit, London School of Economics and Political Science, 2016
- Wittenberg R, Redding S, Nicodemo C, Mccormick B (2015) Analysis of Trends In Emergency and Elective Hospital Admissions and Hospital Bed Days : Draft Report to NHS England, (October), 1–81.
- Werblow A, Felder S, Zweifel P (2007) Population ageing and health care expenditure: a school of “red herrings”? Health Economics, 16, 10, 1109–1126.
- CHKS (2013) Insight report. An economic analysis of the excess costs for acute care for patients with dementia (December).
Signed off by
Liz Saunders: Public Health Consultant