The Terminally Ill Adults (End of Life) Bill, currently under consideration in the House of Lords, has brought end of life care into the spotlight.
This is a Bill ‘to allow adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own life; and for connected purposes’.
While the bill passed in the House of Commons in June by a narrow margin, health secretary Wes Streeting voted against it, with the quality of end of life care being one of the reasons he cited for this decision.
This position has been echoed by others during the debate around assisted dying. The Health and Social Care Committee (HSCC)’s report into the issue in February 2024 said ICBs must do more to ensure they are meeting the palliative care needs of their population.
In the House of Lords debate on 12 September, Baroness Ritchie of Downpatrick said: ‘I do believe that more needs to be done to address the state of palliative care in the UK to improve the treatment of those at the end of life.’
Hospice UK has ‘no collective view on the principle of assisted dying, yet we firmly believe that nobody should choose an assisted death because of a real or imagined fear that they will not get the palliative or end of life care they need’, says Katie Reade, head of policy and public affairs at Hospice UK.
Ms Reade says the legislation needs to be seen ‘within the context of an already overstretched and underfunded end of life care system’.
‘It is vital that the NHS prioritises reducing inequity in access to care and growing services to meet increasing need,’ says Ms Reade.
The Bill also does not detail where assisted dying will take place, or to what extent hospices will be involved. But if passed, it will have a huge impact on hospices who are at the forefront of end of life care in communities.
‘This leaves many unanswered questions for hospices and the sector must be considered if and when any change to the law is implemented,’ says Ms Reade.
There are also unanswered questions on how assisted dying would be implemented.
These include ‘what organisations and staff will deliver it, what systems will be needed to ensure equal access, and how it can sit alongside existing care at the end of life which, as MPs have recognised, has big access problems and inequalities,’ says Dr Sarah Scobie, deputy director of research at Nuffield Trust.
If assisted dying becomes legal, and is implemented, ‘we also need to see a focus on ensuring better provision of palliative and end of life care so that people opting for assisted dying are doing so in the context of a fairer and more equitable service than we have today,’ she adds.
By 2040, around 130,000 more people are expected to die each year in the UK – largely due to population ageing. This rise will mean more people will need access to palliative and end of life care.
But just as demand is set to increase, hospices across the UK are being ‘forced’ to make cuts due to insufficient funding, says Ms Reade.
‘The current system is unsustainable and without long-term funding reform, the sector won’t be able to meet the needs of our ageing population, and many people will miss out on the support they need at the end of their lives.’
Integrated care and end of life care
Integrated care should in theory mean more effective end of life care across a range of settings, with services able to work together to provide the care patients need. However, Dr Scobie says in practice this is ‘limited’.
‘Even though the proportion of people dying in hospital is going down, we estimate that 56% of health care expenditure on people in the last year of life is spent on emergency hospital care, with over 80% spent on hospital care of all types.’
Dr Scobie says outside the hospital, ‘services for people at the end of life are fragmented, with care delivered by a wide range of NHS, voluntary and independent sector organisations that have evolved in an ad hoc way’.
‘Surveys of bereaved relatives indicate that the coordination between services at the end of life is poor, with informal carers often taking responsibility for coordinating different services,’ she says.
But, despite these challenges, there is good work going on. Ms Reade says this can often be found in personalised care, which is at ‘the core’ of palliative and end of life care.
‘This is an area where we often see integration at its best – with services, both in and outside of the NHS, working together around the patient in multidisciplinary teams,’ says Ms Reade.
People approaching the end of life often have complex needs that span across NHS, social care and voluntary services.
For example, in Nottingham and Nottinghamshire ICB, they have implemented an end of life care database, where they proactively identify those likely to be reaching the end of their life. For those on this database, around 90% achieve their preferred place of death and have family positive experiences.
A digital system in Mid and South Essex ICB meanwhile has helped identify 18,000 more patients for proactive personalised care, and has helped reduce the percentage of the population having repeated (more than 3) unplanned hospital admissions in the last 90 says of their life by over 40% since the tool’s launch in 2022.
However, there are still improvements that can be made, such as around access to data and digital systems. The Nottinghamshire database is not fully usable by all relevant care partners yet, but this is a ‘work in progress’, according to Dr Julie Barker, GP and clinical lead for end of life care across Nottingham and Nottinghamshire ICS.
Ms Reade adds that this is a common issue.
‘Too often national and system-level policies do not consider the many services involved in supporting them. For example, charitable hospices often struggle to secure funding for essential training or access data and digital systems used by their NHS colleagues,’ she says.
‘For integration to truly work, decision makers must make decisions that support better care from the full range of providers – including the voluntary sector – to make sure no one misses out on the support they need at the end of their life,’
ICBs also have a statutory duty to plan and commission end of life care based on local needs.
‘However, in practice, the funding hospices receive rarely reflects local need or the cost of services and there is huge variation across the country,’ says Ms Reade. ‘Some ICBs have been working closely with their local hospices to plan a path to sustainability, which is hugely welcome.’
She says nationally, Hospice UK is calling for ‘a complete overhaul of how palliative and end of life care is commissioned and funded, to ensure that services are sustainable and that people get the support they need wherever they live’.
But there are also cuts happening in the NHS, with ICBs and NHS England, which brings a level of uncertainty.
However, health minister Stephen Kinnock earlier this month (12 September) said the Government and NHS would ‘closely monitor the shift towards the strategic commissioning of palliative care and end of life care services to ensure that the future state of services reduces variation in access and quality, although some variation may be appropriate to reflect both innovation and the needs of local populations’.
The shift from hospital to community
Mr Kinnock also mentioned the shift from hospital to community, which was outlined in the Government’s 10 year plan. This stated the ambition to make end of life care more accessible and highlighted that people nearing the end of their lives ‘often do not have the support they need for a good death, in the place of their choosing – which for most people is their home’.
It also suggested community-based advice and support ‘will help more people die in their home, while community teams will work closely with care homes and paramedics to share care plans to avoid people being taken to A&E by default’.
The minister said proposals would be brought to ministers over the ‘coming months’, outlining how to ‘operationalise’ these changes in palliative and end of life care to enable the shift from hospital to community.
The Government’s 10 year health plan ‘rightly prioritises personalised care closer to home and identifies hospices as key to integrated neighbourhood teams’, says Ms Reade.
But to successfully transition more care into the community the Government needs to ensure community services, including charitable hospices, are properly resourced and staffed, she says.
‘Right now, the funding crisis means that many hospices are having to reduce their vital services,’ says Ms Reade. ‘But, with the right support, hospices can protect and expand their services to be key partners in the shift to community and meet the rising demand for end of life care.’
Dr Scobie adds that care in the community often costs more, and not less, than hospital care.
‘It’s doubtful that the NHS can achieve this extraordinary transformation without much new money,’ she adds.
Neighbourhoods and end of life care
The development of neighbourhood healthcare is another of the big ambitions of the 10 year plan, and the vision for the future of the health service.
Neighbourhood providers will ‘convene a diverse mix of professionals into new neighbourhood teams’, the 10 year plan states.
‘They will draw on the full talents of the NHS, across primary, community and acute settings – but they will also have the flexibility to include staff from other sectors where they are involved in a patient’s care. For example, professionals working in hospice outreach services will be part of teams delivering high quality end of life care.’
Some areas have already started work on this, with Kent and Medway ICB ‘on the verge’ of commissioning an end to end pathway for palliative and end of life care using neighbourhood teams.
Dr Scobie says improved neighbourhood working ‘has the potential to support better end of life care in community settings’.
But again, she says investment is needed to ensure this works effectively.
‘It won’t be possible without more investment in community nursing and integrating information systems. Clinicians need to be able to access information about an individual’s previous health care activity, diagnosis, and importantly, their advance care wishes,’ she says.
‘Getting the link to emergency services right is also vital, so NHS 111 and the ambulance service can divert people to appropriate end of life care services in their community,’ says Dr Scobie.
‘Hospices already practice what good neighbourhood care can look like and the NHS 10 year plan for England rightly identifies them as essential to proposals for integrated neighbourhood teams,’ says Ms Reade.
‘They are already out in communities delivering care closer to home, keeping people out of hospital who do not need to be there, and supporting people to die with comfort and dignity.
‘With sustainable, long-term government funding, there is so much more hospices can do to help realise the vision set out in the 10 year plan and meet the growing demand for palliative and end of life care,’ she says.
For end of life care to improve, we need to see better coordination between services to deliver care for individuals and their family carers, but also a more proactive assessment of health care needs that takes account of stark differences between different parts of the country, says Dr Scobie.
‘Engaging local communities in developing end of life care services, supporting core services like community nursing and primary care, and developing expertise within the social care workforce will all be key to providing better end of life care,’ she says.
‘There are numerous pilot initiatives that could provide learning about how to reduce the reliance on hospitals at the end of life, with the integration of palliative care support into NHS 111 just one example,’ says Dr Scobie.
This integration in Cambridgeshire and Peterborough’s palliative care hub allows any end of life patients calling NHS 111 to be transferred to a specialist palliative care nurse.
‘Too many people do not get the support that they need at end of life,’ says Ms Reade.
‘There are significant inequalities in access to, and quality of, care. The healthcare system needs to invest in our community services and workforce in order to reduce unmet need and keep pace with increasing demand,’ she says.
‘Long-term sustainable funding for hospices is absolutely crucial. These services are vital to shifting more care into the community and yet many are making cuts to staff and services due to lack of funds. This must change.’
