When the time comes, everyone will need care at the end of life. Good end of life care not only benefits the individual who receives it, but the people who care for them, and those bereaved. In this explainer, we take a closer look at end of life care – what people want and what is available – and what needs to be done to improve the quality of care, and to make sure it is accessible to all.
What is end of life and palliative care?
End of life care is usually defined as care for people likely to die within a year, and is intended to enable people to live as well as possible until they die, and to die with dignity. For some people, and some health conditions, it is clear that the end of life is approaching well in advance, but others may sadly only have months or weeks before that time comes. Recognising when someone is likely to die can be challenging for clinicians to predict, and can add to the challenges for individuals and families in making decisions about care at the end of life.
Palliative care refers to care provided when conditions cannot be cured, and aims to make the individual as comfortable as possible and relieve pain and other distressing symptoms, and provide psychological, social and spiritual care, as well as support for families, carers and those close to the person.
Where do people die?
What care people need and get depends in part on what causes their death and where they die.
In 2021, there were 585,412 deaths registered in England and Wales, of which two-thirds were among people aged over 75. Since the pandemic started, Covid-19 has accounted for a significant proportion of deaths – 13% between March 2020 and February 2022 – but it remains the case that the large majority of deaths follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia.
Since the start of the pandemic, a third more deaths have occurred at home. Between March 2020 and February 2022, 29% of deaths in England and Wales occurred at home, 43% in hospital, 21% in care homes and 7% elsewhere.
What care do people want at the end of life?
Studies of the quality of end of life care have highlighted a number of priorities for patients about how care could be improved, including access to pain relief, coordination of services, 24/7 support for people at home, and good communication with and help for family and informal carers.
Clear communication that someone may soon die is very important. Although people are not always comfortable talking about death, when people find out about a terminal diagnosis by accident or at a late stage, this increases distress for all concerned. Advance care planning can provide people with the opportunity to express their preferences around treatment and care at the end of life, so these discussions can take place over a longer period of time when care decisions are not imminent.
Surveys have found that most people who express a preference would prefer to die at home, although often people do not express a view, or change their mind as their illness progresses. For people with a terminal illness, and when the circumstance of being close to death arises, the situation is often complex, and depends on individual, family and service factors. There is, however, consensus that emergency hospital admission at the end of life is often not the best outcome for patients, and there has long been a focus within national policy to encourage individual end of life care planning, and to enable more people to be cared for in their place of choice.
What care do people receive at the end of life?
Use of health services increases with age and studies have found that in the last two years of life, nine in 10 people use urgent care services, such as attending A&E or an emergency admission, and almost as many use planned hospital care, such as an outpatient appointment. Two-thirds of patients have a contact with their GP in the last three months of life, while a third have a contact with a community nurse.
Some people may also receive specialist level palliative care. This is required by people with progressive life-limiting illness, where the focus of care is on quality of life and who have unresolved complex needs that cannot be met by their current care team. These needs might be physical, psychological, social and/or spiritual, and may also fluctuate in intensity – requiring different levels of health and social care at different points in their illness, sometimes episodically, sometimes for prolonged periods. They may also require expert assessment, advice, care and support from professionals who specialise in palliative care. Exactly what the person needs will depend on their condition. Specialist palliative care can be provided in multiple settings such as in hospitals, private homes or care homes, and specialist inpatient settings including hospices.
Access to specialist palliative care is variable. People with dementia, disabilities and the homeless are less likely to have access, and people dying from cancer are most likely to have access. And eventual place of death is influenced by geographic access to services, and socio-economic factors, with people in more deprived areas being more likely to die in hospital. People from ethnic minority groups may also face more barriers to receiving good, personalised care at the end of life.
Who provides end of life care?
Multiple organisations and individuals can be involved in providing end of life care from across the NHS, private, voluntary, community and social enterprises. Who exactly and what they do varies by local area, but also by what support the person needs.
As described above, people may receive multiple health care services at the end of life, many of which are provided by the NHS, such as by GPs or care in hospital. They may also receive social care – such as visits from domiciliary carers, or support from services like Marie Curie or Macmillan nursing services.
Hospices play an important role in providing palliative care, including support for physical needs, such as pain management and stabilising the person’s condition, as well as emotional and spiritual needs. Importantly, hospices provide care at different stages of a person’s illness, not just at the end of life, and provide care at home and in the community. In addition to adults, hospices also play a vital role supporting children and young people who have been diagnosed with a life-limiting condition, as well as their families.
Other voluntary organisations, such as condition-specific charities, may also provide support to people and their families at the end of life, through providing information, advice and bereavement support.
How is end of life care organised and funded?
Funding and commissioning end of life care is complex. There is variation across the country in the balance of general versus specialist services, and between NHS and voluntary sector provision. With the enactment of the Health and Care Bill, the commissioning of end of life care in England will transfer from clinical commissioning groups to integrated care systems.
Some people approaching the end of life may be eligible to receive NHS continuing healthcare. This means that the NHS will fund a person’s care, including social care, such as care home fees or care at home. Someone may be eligible for fast-tracked continuing healthcare if they have a "rapidly deteriorating condition" or are "entering the terminal phase". The criteria for this mean people with some conditions, such as cancer, are prioritised.
In some areas, individuals can access personal health budgets to people at the end of life, which gives the individual greater choice and control over the care they receive and who provides it. Part of the purpose of personal health budgets in end of life care is to reduce variation and to ensure people receive high-quality, person-centred care, in line with national policy ambitions. People who are eligible for fast-tracked continuing healthcare have a right to a personal health budget.
Most hospices are independent charities and receive their funding through a combination of NHS and charitable donations. NHS funding only accounts for approximately one-third of hospice expenditure, but this varies over time and across areas. Additional funding has been announced in recent years to increase funding for hospice and palliative care services, but there is no established mechanism for ensuring that funding is allocated so that specialist end of life care services are sustainable and accessible in all areas.
How has end of life care changed during the Covid-19 pandemic?
End of life care services have been disrupted during the pandemic, and services have adapted significantly in response.
As noted above, there has been a significant shift in the proportion of people dying at home, with a third more people dying at home than pre-pandemic. This has resulted in increased need for care in the community, with services such as community nursing reporting increases in demand. Fewer people have died within hospices, but hospices have been providing more care in people’s homes, and have adapted how they deliver services, with more care being provided remotely, for example. Relatively little is known currently about the quality of care received at home during the pandemic.
Visiting restrictions in hospitals and care homes, due to Covid infection risks, have had a profound impact on care for people at the end of life, and the ability for families and carers to be involved in end of life care decisions. Specialist palliative care teams in hospitals adapted how they worked to support the significant increase in need for palliative care during Covid surges, and the generally shorter time between recognition of imminent death and dying among people with Covid.
The shift towards more people dying at home during the pandemic accelerates a pre-existing trend, and is in line with existing policies that have identified scope to enable more people to die in their place of choice by improving access to care outside of hospital. However, little is known about the quality of care people have received at home during the pandemic, or whether the shifts in how services have been provided in the community are sustainable with current workforce constraints.
What are the challenges for improving end of life care?
After a number of years where fewer people have been dying each year in the UK, the number of people expected to die each year is projected to increase, as the population ages. Alongside a growth in number of deaths, the shift towards more people dying at home, recently accelerated by the pandemic, is expected to continue.
Both of these trends highlight the importance of developing sustainable and high-quality end of life care services, based on the needs of local populations – including in community settings, as well as in hospitals and care homes.
While there is a consensus about what good quality end of life care looks like, as set out in the Ambitions for Palliative and End of Life Care, there are number of challenges to achieving these, which need to be addressed. The shift towards more deaths occurring at home has not been matched by a shift in capacity in the community, although specialist services delivered by hospices have shifted their focus. There are long-standing variations in access to end of life, not just specialist palliative care, related to age, illness, social and other factors. There is a lack of data about provision and need for care at a local population level, and so gaps in care are not visible, which is likely to have hindered improvements and the development of capacity and the skilled workforce needed to deliver end of life care.
Like other aspects of health and social care, funding for end of life and palliative care is a challenge. Charitable donations, which contribute significantly to the voluntary sector, including hospices, have been badly hit during the pandemic. In recognition of the potential impact of the pandemic on charitable donations as well as the need to adapt services, additional funding was provided to hospices during the pandemic across the UK. But research has suggested that, given that the number of people with palliative care needs is going to increase, ensuring long-term, sustainable funding is essential. Given the significant impact of Covid (including place of death) and the demand for end of life and palliative care, this has become even more important.
During the pandemic, new models of care have developed, often enabled by improved coordination of services between organisations who deliver general and specialist end of life care at a local level. There is scope for these models to be further developed, to provide the basis for improving care at the end of life, and deliver services within communities rather than acute care settings. But at the same time, it is important to recognise that these changes have taken place within a context of immense resource pressure, and are likely to have had a significant impact on staff wellbeing. Further research to understand the sustainability of these changes is key, as well as a better understanding of whether public attitudes towards and expectations of end of life care have changed.