‘Ordinary’ dying at the end of the life course is not well understood by the public. Coverage of the Assisted Dying Bill has skewed the debate, leaving people with a distorted understanding of when and how most people die. Death is a natural process at the end of life and the large majority of people die in older age at the end their natural lifespan. Better provision of end of life care could enable more people to die well with supportive care in a place of their choosing.
1. The vast majority of those who die each year do so in older age
There are approximately 670,000 deaths every year in the UK,1 of whom around 70% are people aged over 75.2-4 Most people die when they are old or very old. In England, 87% of people dying over the age of 75 are dying of or with one of the four major conditions (cancer, dementia, cardiovascular disease and respiratory disease).5
Dementia is now the leading cause of death, accounting for 76,894 deaths in the UK in 2024 (11%).2,4,6,7 The number of people dying of dementia will increase in the next ten years numerically and proportionally, whilst other causes of death decrease. After a dementia diagnosis, a third of remaining life expectancy is lived in a care home on average.8
2. Those who die in older age often have multiple long-term conditions, including frailty, resulting in health and social care needs
The majority of those who die each year have multiple long-term conditions and/or frailty, rather than a single condition such as cancer or motor neurone disease. More than two thirds of people aged over 74 have two or more long-term conditions9 and this multimorbidity is associated with a higher risk of hospital admission and death.10 It is also associated with a greater risk of unmet end of life care needs. Around 34% of people with three or more conditions experience unmet need which is almost 40% higher than people with only one condition.11 Up to half of people over the age of 85 years live with frailty12 and people with severe frailty are five times more likely to die within a year than older people without frailty.13
Those with frailty and multimorbidity have an uncertain non-linear dying trajectory, making it hard to predict when someone will die, but expert understanding of these conditions can help to identify people who may be in the last year of their lives or where recovery is uncertain. This group of people are likely to require significant health and social support over a considerably longer period than those dying of a single condition, especially as 30% of people aged over 65 years live alone and 40% live with a partner of equivalent age, also likely to have health or social care needs.14
3. What matters to people at the end of their lives should drive planning of EOLC services and support
Awareness that the end of life may be close should inform all clinical care for older people with multiple long-term conditions, taking a needs-based approach. This enables proactive and compassionate communication with people and their families about how to spend their remaining time and where they wish to die. This ensures older people understand their situation and can be involved in decisions about their care. This can be documented and respected through Advance Care Planning. Most (78%) of the public are unaware of the term ‘advance care planning’15 and one study revealed that less than a third of respondents discussed end of life wishes in the last year of their life or formally documented their wishes.16 Uptake is particularly low among older people living with frailty,17 as well as ethnic minority groups, with cultural differences and language barriers often cited as a barrier to engagement with advance care planning services, resulting in inequitable access to quality end of life care.18 Honest conversations about uncertain recovery or the possibility that end of life is approaching can facilitate consideration of realistic treatment options and shared decision-making to avoid over-medicalisation. This way, people can be supported to live their remaining days in the right place for them with appropriate health and social care support focussed on their individual needs.
4. People should be supported to die in their preferred place of death
Over half (56%) of people dying over the age of 65 indicate that they would prefer to die at home with their loved ones around them.19 However, at present 75% of people do not die where they would prefer.11 For those over the age of 65, around 40% die in hospital, 30% die at home, 20% die in a care home, and 5% die in a hospice.20 People express different reasons for their preferred place of death, but many end up in hospital due to an emergency, dying there, when better recognition and provision of end of life care might have enabled them to remain at home, avoiding interventions that do not deliver better patient reported outcomes. One in eight people spend more than 30 days of their last three months in hospital and 60% had at least one emergency admission in their final three months of life.21-22
5. Those with expertise in older people’s healthcare are specialists in end of life care for this population
Delivering quality end of life care for the majority of people who die in the UK requires skills in supporting people with multiple long-term conditions, including frailty and dementia, underpinned by a patient-centred evidence-based approach. A core component of specialist training in geriatric medicine is focused on managing end of life care and applying palliative care skills.23 Therefore, geriatricians have the skills to identify when older people with complex needs, including those with multiple conditions, may be reaching the end of life, or when recovery is uncertain. This includes using holistic person-centred approaches and skilled decision-making to manage uncertainty; planning for different scenarios; delivering realistic care options; ensuring access to timely, responsive care; considering alternatives to hospital admission when appropriate; and communicating and documenting Advance Care Planning.24 Similarly, GPs, nurses and allied health care professionals with expertise in older people’s healthcare have the skills to care for older people at the end of life. Despite this, there is a lack of awareness and recognition of their important role in providing specialist end of life care for older people. The BGS advocates for the recognition of expertise in palliative and end of life care beyond the specialty of palliative care, through the establishment of national accreditation for those with an understanding of the complex needs of older people dying with multiple conditions. This, alongside upskilling the generalist workforce, will ensure that the health and social care workforce is equipped to provide good end of life care to older people reaching the end of life.
6. The workforce supporting end of life care needs upskilling
The specialist and generalist workforce supporting end of life care needs to be skilled in providing adequate end of life care for the majority of people dying each year. There are not enough specialists in palliative and end of life care to provide care for everyone as they reach the end of life. Most care is provided by the generalist workforce, especially nurses, who do not specialise in a specific condition or patient group. In fact, half of all people who die have no contact with specialist palliative care.25 It is essential that generalist health and social care professionals have the basic skills to provide good end of life care as this is relevant for the whole workforce. At a minimum, this should include communicating about and documenting Advance Care Planning. A multidisciplinary approach is needed which focuses on holistic care rather than on skills linked to managing one condition. Decision makers in healthcare teams who support people nearing the end of life should be skilled in recognising when someone may be reaching the end of life, or their recovery is uncertain, and addressing their physical, cognitive, psychological, and social needs. This involves working across health and social care teams to ensure coordinated and integrated care. For older people with multiple health conditions, whose dying trajectories are often uncertain and non-linear, this will require skills in managing risk and uncertainty in the community alongside balancing palliative care with function-orientated care. End of life care should be rooted in honesty, delivered by a workforce skilled to have open and compassionate conversations that help people prepare for death. This will support more people to have a good death centred on what matters to them.
