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For many people, dying and the lead-up to death is something they may not want to spend too much time thinking about, and is not necessarily something they need to.
It is, however, the duty of healthcare practitioners to think about this, and ensure that they have either done everything that they can to save a person’s life, or, that they have done everything they can to make sure that in their final years, months, days or hours, patients are comfortable and looked after.
Palliative care and end-of-life care are extremely important aspects of the provision of healthcare and those which, according to the Royal College of Physicians (RCP), are not being prioritised enough in the United Kingdom.
A significant cultural shift
In a statement from the RCP – a membership body for physicians and doctors – in August this year, the organisation said that “there are important cultural shifts required in healthcare and UK society with respect to palliative and end-of-life care”.
A main issue highlighted in the statement is that “there remains a focus on curative treatments, whereas many of our patients have progressive life-limiting conditions (particularly frail and older people who make up the majority of patients in hospital) and are the most likely to die in hospital… approximately 70 per cent of people die from long-term health conditions that can follow a predictable course, with death anticipated well in advance of the event. Despite this, patients and their families often feel unprepared for the end of life”.
Patients can benefit from open, supportive conversations, guidance and treatment plans that are more aligned to what they wish their final moments to look like if more emphasis is placed on palliative care – but many of them, including their families, are not even aware that this area of care exists.
“End-of-life care isn’t a ‘luxury’ or a ‘nice to have’ extra. One in four people do not get all the care and support they need at the end-of-life,” says Dr Paul Perkins, chief medical director at Sue Ryder, UK palliative and bereavement support charity.
“This needs fixing now, as with the ageing population, more people will need care before they die in the years and decades to come.”
Palliative vs end-of-life care
Many people confuse palliative care and end-of-life care, sometimes using them interchangeably, but there is a difference. Sue Ryder defines palliative care as being “about supporting people to have the best quality of life when faced with an illness that could shorten their life. Palliative care aims to relieve pain and other distressing symptoms, helping people to feel more comfortable. We also look after the whole person, including their emotional and spiritual needs too”.
“You do not have to be dying to need palliative care, it’s not the same as end-of-life care and can start early in the illness, alongside treatments that help someone live longer,” the description continues.
It can be anything from the teaching of breathing techniques to manage pain, cognitive exercises, prescribing of medication, educating a person and their family to better understand their condition, and helping them plan ahead.
Physical, emotional, spiritual and practical needs of the person and their family are considered in palliative care.
End-of-life care is care given to someone who is expected to die soon – within the next few hours and days to a year.
“For them this will be about control of pain and symptoms, but also about where they are, who they are with, and what they want to do,” says the charity.
It is plain to see that palliative and end-of-life care is not only a right to preserving one’s dignity, but a safeguarding of emotional wellbeing, too, at one of the most vulnerable stages in our lives, in which agency is crucial.
“Access to palliative care services is currently patchy and inequitable”
The reality
But what does the current state of this care look like in the UK? “Access to palliative care services is currently patchy and inequitable, and there is widespread geographical variation in provision and funding models,” says Dr Suzanne Kite, president of the Association for Palliative Medicine (APM).
“Lack of public awareness of palliative care, misinformation, and mistrust in healthcare services can serve as barriers to access to palliative care for people at the right time for them. Too great a reliance on charitable funding makes specialist palliative care services highly vulnerable.”
There is also the issue of patients getting to the point of urgently needing care, but the care not being immediately available to them for various reasons.
“Currently in the NHS, most patients requiring medical admission to hospital spend considerable time in temporary care environments, including emergency department corridors,” says the RCP statement. “Many of these patients are older, vulnerable patients approaching the end of life.”
This is a reality the RCP suggest can be avoided, if the right education and steps are in place.
“There are multiple opportunities when people who are approaching the end of life can be identified during healthcare events, either during admissions to hospital, or when monitoring their condition and responses to treatment,” says the statement.
“These are often missed opportunities that could result in more appropriate palliative care, parallel planning, and reduced hospitalisation.”
The 2024 National Confidential Enquiry into Patient Outcome and Death report, Planning for the End, examined the care of a sample of people who had died from various conditions.
It found that only 31 per cent of people were given support for their symptoms and quality of life alongside wider palliative care planning.
“Conversations around end-of-life care wishes were not recorded for 72 per cent of patients. Coordination of care by a named person was not recorded for 35 per cent of patients. Specialist palliative care over seven days was only available in 60 per cent of hospitals, while training in end-of-life care was priority training in just over half of hospitals (51 per cent).”
In agreement with Dr Kite, Dr Perkins notes how this experience of care is largely due to geographic location.
“Unfortunately for many, accessing palliative care, particularly in the community, can come down to where they live. Communities with higher levels of deprivation and ethnic diversity more commonly find it hard to access 24/7 care and care in their home,” he says.
“This has significant repercussions, with one in three people being severely or overwhelmingly affected by pain and isolation in their final weeks of life.”
Improving palliative and end-of-life care in the UK will not be straightforward, though, and requires nationwide action and involvement.
A better educated public on this type of care – what it is, why they need it and how it is important to acknowledge when this type of care must come into play – as well as better educated healthcare professionals is a crucial and key point made by the RPC and one which will play a huge role in limiting this disparity between those who receive care and those who do not.
As the RCP statement points out, their ambitions to improve care “will be difficult to achieve without a significant shift in public understanding and attitude to acute versus palliative and end-of-life care. We all have a role to play in this”.
“Dying people deserve the right care, in the right place, at the right time”
The RCP’s standpoint
The RCP is calling on the Government to make several changes to better palliative and end-of-life care. They are:
- To develop a public campaign on end-of-life and palliative care
- Support a professional campaign to improve education, recognition and care delivery for end-of-life care
- Commission a national strategy for end-of-life and palliative care that includes:
- A national service framework for end-of-life and palliative care
- An agreed data set to understand track our delivery of end-of-life and palliative care
- Clear goals and trajectory for delivery
- Training requirements and resource development for health and social care staff.
The RCP statement also noted the link between their requests and the Government’s 10-year-plan goals, most notably the desire to shift care from hospital to community.
“Palliative and end-of-life care is delivered in all care settings and must be a significant component of the Government’s drive to move more care from hospital to community.”
And, whilst all healthcare professionals should be trained in this area to ensure the best possible care for patients across the board, the RCP notes that “it is particularly important for those involved in end-of-life and palliative care, including geriatricians, palliative medicine physicians, oncologists, acute and respiratory physicians and cardiologists”.
Lastly, the RCP made a case for care teams working together to provide more holistic care for patients. “Integrated care can only be delivered when patient information is also shared across these boundaries, and this is perhaps most important when the patient is approaching the end of their life.”
Understanding a new ecosystem
The patient is undoubtedly at the forefront of the drive for improved palliative and end-of-life care, but they are not the only ones who may benefit from a new strategy.
Friends, family members and carers stand to benefit from support and guidance during an extremely overwhelming and unpredictable time, as well as the comfort of seeing their loved one looked after with dignity and compassion.
There is also evidence that large sums of money could be better spent on improved palliative care.
A report commissioned by Marie Curie published in February this year estimated that £22 billion of public funding is spent on people in their last year of life, with £12 billion spent on healthcare and £5 billion on social care.
“Improvements in palliative care would not only relieve pressure on frontline healthcare workers but, crucially, it would give patients more choice and ensure they have the right support in place,” says Dr Perkins.
“Now is the time to create a new ecosystem for palliative care. Families up and down the country are crying out for compassionate, dignified support at the hardest times in their lives.
We can build a future where no one’s final chapter is shaped by their postcode or circumstance, but by care that meets them with empathy and respect, wherever they are. Dying people deserve the right care, in the right place, at the right time.”
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