What will it take to improve palliative care to give patients a 'meaningful choice'?
19 March 2025
Marie Curie By Emma Wilkinson
The debate over assisted dying in England and Wales has brought renewed attention to palliative care. As medics working in the service warn that it is in dire crisis, Emma Wilkinson looks at what needs to happen.
Palliative care doctors giving evidence to MPs on the assisted dying committee at Westminster painted a stark picture of an “inadequate” service that currently mainly serves those who are “white, rich and have cancer”.
More than 100,000 people a year cannot access the palliative care they need.1 To reduce suffering and for people to have a “meaningful choice” about assisted dying, that has to be addressed urgently, the hearing heard.
Dr Rachel Clarke, a palliative care specialist in Oxford, told MPs that the experience for those at the end of life can be bleak.
“The reality that I see every day in my hospital is patients coming into the emergency department from the community in sometimes utter abject misery, agony, and lack of dignity. They have been forgotten completely. They're not getting healthcare. They're not getting social care. No one cares about them.”
Those with a terminal illness can be “cast out into the corners of the hospital” with no access to specialist palliative care.
Her hospital is one of 40% that have no evening and weekend service despite this being a long-time NHS standard.2
“That's an absolute disgrace, and it shows how little people who are dying are truly cared for in a civilised society,” she said.
Outside hospital can be just as fraught for carers trying to access support and passed from pillar to post.
'Better training needed'
Dr Sarah Cox, president of the Association of Palliative Medicine of Great Britain and Ireland says this is what prompts so many crisis admissions. There desperately needs to be better joining up of services – a central hub for people to access.
At Chelsea and Westminster Hospital NHS Foundation Trust where she works, staff set up a 7-day service years ago and they have found it makes a “massive difference”. There was a big step up in hospitals offering extended palliative care services during the COVID-19 pandemic when they could make the case for the extra resource, she explains but that lever has now passed.
There is not just a clear moral and quality of care argument to improving end of life care, there is a financial argument too, Dr Cox stresses. The way hospitals are funded – for procedures and operations and outpatient appointments – often leaves palliative care in a trickier position because they’re not “generating income”.
Yet a report from the Nuffield Trust 3 published in February showed 81% of total healthcare spend in the final year of life is spent in hospital, with more than half of that spent on emergency care.
The palliative care specialists working in hospital are just one part of a very fragmented picture that involves GPs, district nurses, hospice care, community teams, care homes and charities.
Palliative care need is far greater than clinicians like Dr Cox would ever be able to manage. In fact, surveys have showed 83% of palliative care doctors have staffing gaps within their service with half of them unable to take leave because of it.
“We need to resource others [specialties], both in the hospitals in the communities, to make sure they feel confident and competent, to deal with the many people that actually don't need us,” she adds.
Call to begin palliative care earlier
The most “sustained significant” impact would be for palliative care to be introduced more than 3 months before someone dies rather than within 2 months, which is what currently happens. Yet many doctors have not been equipped with the skills to have those conversations, MPs heard.
Dr Catriona Mayland, senior clinical lecturer in palliative medicine at the University of Sheffield says palliative and generalist teams will always need to work together to meet the vast need for end-of-life care and that doesn’t just mean the onus being on the GP.
“It has to be on the agenda of the renal team, the cardiology team, the respiratory team and that is something that is starting to happen,” she notes.
For some people, being in hospital will be appropriate. Everyone needs to feel comfortable starting those conversations about what the patient wants and what they would like to avoid, she explains.
“It’s about teams being personally invested in palliative care but then collecting the data to show what difference it makes. We have been doing some work on this with lung disease.”
Dr Anne Noble, a GP in Sheffield with an interest in palliative care. works in a deprived urban area where she sees barriers associated with deprivation, speaking English as a second language as well poor mental health and learning disabilities.
“These groups have poorer health and die at a much younger age. It is a health emergency that needs addressing.”
Most people in the UK now die from dementia, frailty and organ failure but the trajectory of these conditions is much less predictable than cancer. Dr Noble believes better training is needed to help clinicians identify when patients are at the end of life and have quality conversations about what matters to them.
“If well-resourced primary care and community nursing can manage much ‘normal dying’, the specialist palliative care services can then be appropriately utilised for complex patients or need,” she adds.
“Many patients want to die at home and further resourcing of community teams would support a shift of deaths form hospital to home.” It is about de-medicalising death, she says.
'Postcode lottery'
Dr Sarah Holmes, chief medical officer at Marie Curie, does not mince her words when she says care for dying people in the UK is in crisis with “huge discrepancies” across the country.
“We know that currently too many people are spending their last months and weeks of life in hospital, visiting A&E, or forced to call out ambulances rather than receiving well-anticipated, coordinated and holistic care in the community,” she says.
That is a result of palliative and end of life care being constantly overlooked by successive governments. None of the devolved nations has a palliative care strategy. There is no plan, she says.
Dr Sarah Holmes. Credit: Marie Curie
There are examples of good practice in collaboration between charities and the NHS.
Marie Curie has a partnership with University Hospitals Plymouth NHS Trust to provide healthcare assistants in the emergency department to support and care for end-of-life patients. A team of Marie Curie nurses also work across the hospital to help identify people approaching the end of life and support their transfer to their preferred place of care.
Other proven models include the REACT service at Bradford Royal Infirmary where Marie Curie works with the palliative care consultants, including Dr Holmes. The scheme has halved the time patients at the end of life spend in hospital. The REACT team essentially provide a 72-hour virtual ward that acts as a bridge between hospital and the community if that is what the patient wants.
The model will look different in different places but services like these “need investment and support to be scaled up and replicated across the country,” says Dr Holmes.
As a basic start, we need quality standards and some data collection to highlight that variation currently seen between ICBs, adds Dr Cox. We need that blueprint that sets out they need a single point of access, a way of coordinating care and 24/7 advice in the community as well as specialist palliative care 7 days a week.
“There does need to be a bit more detail in order for ICBS to be held accountable, and until we have that, it's very difficult for them to know what ‘palliative care appropriate for my community’ looks like.”
A Department of Health and Social Care spokesperson said: “Everyone should receive high-quality, compassionate care from diagnosis through to the end of life.
“As part of the 10 Year Health Plan, we will shift more healthcare out of hospitals and into the community. The palliative and end of life care sector, including hospices, will have a big role to play in that shift.
“Earlier this month, the Minister for Care met the major palliative and end of life care and hospice stakeholders, and long-term sector sustainability, within the context of our 10 Year Health Plan, was discussed at length.”
References
- UK Parliament Post. Palliative and end of life care. [pdf]
- National Confidential Enquiry into Patient Outcome and Death infographic [pdf]
- Nuffield Trust research. Accessed in February 2025.
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