The UK has one of the best systems for end of life care, a global study says.
The analysis by the Economist Intelligence Unit looked at access to services, quality of care and public awareness in 40 countries.
It found the UK performed particularly well on issues such as obtaining pain killers and quality of support
Along with Australia, it received 7.9 out of 10, well ahead of nations such as Denmark, on 5.1 and Italy, on 4.4. India came bottom on 1.9.
The Government has published the End of Life Care Strategy - promoting high quality care for all adults at the end of life which is the first for the UK and covers adults in England. Its aim is to provide people approaching the end of life with more choice about where they would like to live and die. It encompasses all adults with advanced, progressive illness and care given in all settings. The strategy has been developed by an expert advisory board chaired by Professor Mike Richards, National Cancer Director, and including key stakeholders from statutory health, social care, third sector organisations, professional and academic organisations. The strategy has been informed and shaped by the work on end of life care undertaken by strategic health authorities for the NHS Next Stage Review.
A framework for social care at the end of life.
http://www.adass.org.uk/images/stories/Policy%20Networks/Older%20People/...
The proportion of people who die in hospital varies hugely across England, figures published today reveal.
While 45% of deaths in Torbay, Devon, were in hospital, in Waltham Forest, east London, the figure was 78%, research by the National End of Life Care Intelligence Network revealed. Nationally, 58% of deaths were in hospital. The figures relate to the period between 2005 and 2007.
Rates of hospital deaths have remained stable over a number of years, the report found, despite longstanding evidence that many people wish to die in their own homes.
Although these variations reflect factors such as age, disease and deprivation, they also underline differences in service provision.
The previous government's end-of-life care strategy, published in July 2008, was intended to enable more people to die in the place of their choice through improved care planning and co-ordination, rapid access to urgent care and better training.
As part of this, the network was commissioned by the government's National End of Life Care Programme to collate and analyse existing data on end-of-life care.
Programme director Claire Henry said there were several reasons for the local variations: "It's about service provision, how we use the voluntary sector, people's wishes and what family support is around."
She said the data should be used as a benchmark by local authorities and primary care trusts to identify local needs and ways in which services could be reshaped to give people choice over where they die.
The study found that people in the most deprived 20% of the population had a 62% chance of dying in hospital compared with 55% for the least deprived. NHS Waltham Forest said the high rates of hospital deaths in its area reflected its high level of deprivation.
It also pointed to a specialist palliative care service in one of the borough's hospitals, Whipps Cross, which offered hospice-style care and accounted for 15% of recorded deaths. "Things are improving in Waltham Forest," a spokesperson said. "Our latest published figures show that 17.2% of deaths occurred at home in 2008, up from 15.7% in 2007 and we are doing all we can to enable even more people to be at home for their final days rather than in hospital."
Torbay Care Trust, which has a large elderly population, attributed its low rate of hospital deaths to staff training and the development of services to keep people out of hospital (see below).
Henry said improving communication between professionals across patients' care pathways towards end of life was key to reducing the number of people dying in hospital, while cultural change across services and society was also needed.
"It has become the norm to die in hospital," Henry said. "Sometimes people don't even know dying at home is an option. People need to have that discussion about choice and advanced care planning. That honest openness is a skilled job and I think social workers have those skills."
Further figures for 2008 and 2009 are expected in the autumn.
Where are people dying in your area?
North of England
View Place of death rates in north England in a larger map
The Midlands
View Place of death rates in the midlands in England in a larger map
The South
View Place of death rates in south England in a larger map
The Torbay model
Training for staff in identifying patients at the end of life and broaching with patients the subject of dying have played a key part in Torbay's low rate of hospital deaths.
Dr Sonja Manton, the care trust's general manager for health and social care in Torquay, said the process starts when the patient is admitted.
"We have discharge co-ordinators on all hospital wards who start planning for discharge on the day of admission," Manton says. "They are there to make sure that person goes home in a timely, safe and effective way."
Manton also pointed to the establishment of a rapid response team within the care trust, which aims to discharge people to the place where they wish to die and have the appropriate support in their final days.
In the past two years, Torbay has taken further initiatives to improve end-of-life care. The care trust has instituted a four-week training programme for informal carers to prevent breakdowns of care, which cause hospital admissions.
Another strand of work, presently being evaluated, is a training programme for care home staff. This includes an NVQ-style course in end-of-life care and an organisational element to help managers evaluate whether the care home is meeting the aims of the end-of-life care strategy.
"The care homes have really embraced that and we'd like to roll that out to all the care homes in the area," said Manton
In addition, the care trust's intermediate care team has had its remit widened to include end-of-life care patients. In these cases, rather than focusing on reablement for the long term, they focus on improving patient's quality of life in the community for as long as possible.
HOSPITAL DEATHS: HIGHEST AND LOWEST
Five local authorities with the lowest percentage of deaths in hospital (2005-7)
Torbay 45
Penwith 46
Plymouth 46
South Norfolk 46
Chichester 46
Five local authorities with the highest percentage of deaths in hospital (2005-7)
Waltham Forest 78
Redbridge 72
Ealing 72
Newham 71
Barking and Dagenham 71
Note: All percentages have been rounded up or down to the nearest whole number
http://www.communitycare.co.uk/Articles/2010/08/11/115075/postcode-lotte...
Good progress has been made in improving end of life care, but more needs to be done to make sure everyone gets the highest quality of care, in the setting of their choice.
That is the conclusion of Care Services Minister Paul Burstow as he received the Second Annual Report on the End of Life Care Strategy published today.
Key areas of progress highlighted in the report include:
Care Services Minister Paul Burstow said:
“We need to ensure that the care people receive at the end of life is compassionate, appropriate and gives people choices in where they die and how they are cared for. Identifying people approaching the end of life and planning properly with them for their care is an essential part of this.
“While there has been good progress made so far this year the variation in progress across the country means the NHS must redouble its efforts. That is why more work will be done to improve training, promote best practice and make sure good end of life care is embedded across the NHS.
“On the key issue of funding the Coalition was quick to commission work and I am looking forward to receiving Thomas Hughes Hallett’s recommendations.
“We have set out our commitment in the recent White Paper to support people’s preferences about their care. By introducing a choice offer I am determined to increase the pace of change and improvement to begin to make this a choice reality.”
Further action in the coming year will include:
Chairman of the End of Life Care Implementation Advisory Board, Thomas Hughes-Hallett said:
“I am pleased to endorse the second Annual Report. We are making progress but we still have a long way to go. The report highlights the variation in equity and provision of end of life care services across the country. With changes afoot, it must be possible, even in this challenging economic climate, to ensure that people at the end of life to get the high quality care and support they need in the place of their choice.”
Professor Mike Richards, National Clinical Director for End of Life Care, said:
“This report shows that there is a growing momentum for the End of Life Care Strategy. We have established key elements such as the National End of Life Care Intelligence Network, which will be hugely helpful to commissioners and providers to show them how they compare, and where they need to improve. End of life is the final health outcome for all of us, so it’s crucial that we get it right.”
The report also estimates that the NHS, Department of Health and the National End of Life Care Programme spent about £87.5 million of new money on end of life care in 2009/10.
Sixty per cent of new NHS expenditure went on voluntary hospices, care homes, specialist palliative care teams and specialist palliative care resources, with the rest being spent on such as training, palliative care transport and rapid response teams.
1. The second Annual Report on the Department of Health’s End of Life Care Strategy can be found at
2. About 500,000 people die each year in England.
3. At present, around 55 per cent of deaths occur in hospital, around 20 per cent at home, around 16 per cent in care homes (which for many is their home) and around 5 per cent in hospices.
4. Surveys of the public have shown that the first preference for most people (56-74 per cent) would be able to die at home.
5. The End of Life Care Strategy aims to improve care for people approaching the end of life whatever their diagnosis and wherever they are, including enabling more people to be cared for and die at home if they wish. It covers all adults in England with advanced, progressive illness and care given in all settings.
6. In particular it aims to change people’s attitudes towards discussion of death and dying so that they are more comfortable with expressing their wishes and preferences for care at the end of life. The strategy also aims to support the development of services in the community so that people can choose to die at home if that is their preference.
http://nds.coi.gov.uk/content/detail.aspx?NewsAreaId=2&ReleaseID=415122&...
Investment in end-of-life care depends on the area where the service user lives, the latest Department of Health figures show.
Although the previous government allocated £88m to support the End of Life Care Strategy in 2009-10, some primary care trusts invested nothing while others spent up to £5,426,000, the strategy's second annual report revealed.
"There is a risk that the lack of implementation in some areas could create a postcode lottery in end-of-life care," said Eve Richardson, chief executive of the National Council for Palliative Care. "Preventing this gap increasing in the new commissioning era will be vital."
David Praill, chief executive of Help the Hospices, echoed the concerns: "Hospices are a major provider of end-of-life care, yet government funding for hospice care is patchy and inconsistent, with some hospices receiving significant levels of funding while others get next to nothing."
Care services minister Paul Burstow acknowledged that the variation in investment between PCTs was a problem. "That is why more work will be done to improve training, promote best practice and make sure good end-of-life care is embedded across the NHS," he said.
Figures released earlier this month revealed a postcode lottery in end-of-life care with big variations in the number of people dying in their own homes.
PCTs reported investing £75m of the £88m the government allocated to support the End of Life Care Strategy. The rest was spent at regional and national levels.
Voluntary hospices were the biggest beneficiaries, receiving 20% of the £75m, while care homes and specialist palliative care teams received 17% and 12% respectively.
The figures go some way to answering questions about where the £88m had been spent.
In March, research by the National Council for Palliative Care (NCPC) showed that 35% of PCTs could not account for how their share of the funding had been spent. At the time the NCPC called for the funding to be ring-fenced.
Related articles
Postcode lottery in end-of-life care
Palliative care body calls for debate on ring-fencing funds
DH puts end-of-life care spending question to SHAs
Help the Hospices issues warning over end of life care funding
http://www.communitycare.co.uk/Articles/2010/08/26/115165/wide-variation...
In July 2008 the Department of Health published the End of Life Care Strategy - promoting high quality care for all adults at the end of life. This second annual report sets out the continuing progress in implementing the strategy, highlights the need for further work and identifies the action intended for this coming year.
Results of the Department of Health's monitoring of new investment in end of life care, 2009/10
A report on progress against the action points set out in the End of Life Care Strategy's Equality Impact Assessment
National End of Life Care Programme’s summary of Advance Care Planning, care planning, DNACPR
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publicati...
Momentum on improving end-of-life care may be lost because of the government's decision to delay a review of the issue until 2013, the King's Fund warned today in a report outlining good practice in the field.
The think-tank said an opportunity could be missed to build on the progress already made in implementing the end-of-life care strategy, published in 2008 by the Labour government.
Its report drew on three schemes run by Marie Curie Cancer Care as part of its Delivering Choice programme, which aim to provide round-the-clock care for people nearing the end of life and ensure they are able to choose where they are cared for and die, through a multi-agency approach.
The fund said key priorities included identifying patients' end-of-life care needs, improved training for non-specialist staff, boosting the availability of out-of-hours care and better co-ordination of health and social care.
"The Delivering Choice programme has provided a novel approach to improving end-of-life care by focusing on gaps in care and facilitating collaboration between health and social care providers," said the report's lead author, Dr Rachael Addicott.
"While we welcome the government’s continued focus on end-of-life care, we are concerned that the decision not to hold a review until 2013 risks losing momentum and missing the opportunity to build on the progress already made."
http://www.communitycare.co.uk/Articles/2010/10/28/115689/King39s-Fund-w...
People are living longer, but with increasingly complex health problems; this, together with the need to take account of patients’ preferences, highlights the importance of end-of life care and the increasing investment that will be required in this area of care.The current financial crisis and the reform of the health service should not be allowed to distract from the need for innovation and improvement in the quality of end-of-life care. Indeed, such changes could also promote efficiency savings as well as improve quality.
The publication in 2008 of the (then) government’s End of Life Care Strategy radically raised the profile of the issue. The strategy set out a clear pathway to guide commissioners towards service improvement, suggesting areas on which to focus their efforts. However, many commissioners and service providers are still struggling to implement the strategy and to deliver innovative models of care within the current financial constraints.
Implementing the End of Life Care Strategy: lessons for good practice is aimed at those responsible for commissioning and organising end-of-life care services at a local level. The paper uses evidence from The King’s Fund’s evaluation of the Marie Curie Delivering Choice Programme to highlight examples of good practice and learning for the organisation and delivery of end-of-life care across England. It provides guidance on the delivery options and ongoing challenges in the organisation of end-of-life care that can be implemented or adapted to suit local contexts of care. Many of the lessons that are presented in this paper will also provide a valuable resource for those involved in the quality, innovation, productivity and prevention (QIPP) agenda.
http://www.kingsfund.org.uk/publications/implementing_the_end.html
The consultation on choice, Liberating the NHS: Greater choice and control, focuses on giving patients greater choice over how and where they are cared for. The government’s pledge to open up the health care marketplace to ’any willing provider’ backs up this commitment. A co-ordinated approach at a local level, involving a range of health and social care providers working collaboratively, is fundamental to reaching this goal.
It is particularly important to increase the range of available care for people approaching the end of their lives. We know that many more people would choose to be cared for, and to die, at home than are currently able, and the consultation proposes establishing a ‘national choice offer’ for people to receive the support necessary to die at home (including a care home) if that is their preference.
A review to consider when this choice will be introduced nationally will be undertaken in 2013, five years after the publication of the End of Life Care Strategy, which currently guides the commissioning and provision of end-of-life care across England.
We welcome the government’s continued commitment to improving end-of-life care and enabling greater choice across England. But why wait until 2013 to make improvements?
In our own work on this subject over the past few years, we have seen many examples of regions working to improve access to supportive care for patients as they near the end of life. It is vital that this energy is not lost.
The King’s Fund report, Implementing the End of Life Care Strategy: lessons for good practice, which is published today, highlights some of these examples seen through our work with the Marie Curie Delivering Choice Programme.
We have used the end-of-life care pathway outlined in the strategy – from diagnosis and early discussions of care options, through to bereavement support – as a guide to highlight examples of good practice for commissioners and service providers, so they can consider these when working locally to more effectively meet the care preferences of people nearing the end of life.
At present, end-of-life care is often inadequate in meeting patients’ care preferences, and our new report provides the necessary impetus for driving reform at a local level.
The coalition government’s pledge to review this choice agenda in 2013 risks stalling the current energy and focus in this area. We would strongly encourage commissioners and service providers to continue the developments they are undertaking now to improve choice for patients at the end of life.
Read Implementing the End of Life Care Strategy: lessons for good practice
Hospices have been the main provider of specialist palliative care in the UK since their inception but now the Government is taking a more active interest in how end of life care services are delivered. The End of Life Care strategy is England’s first national strategy for end of life care. During the Governments NHS Next Stage Review, Strategic Health Authorities in England reviewed a range of priority services, including end of life care. All Primary Care Trusts in England will have to produce a five year strategic plan by May 2009 and end of life care should be incorporated into this. In response, opposition parties are developing more sophisticated policies on end of life care meaning the trend is likely to continue under future Governments.
As the Strategy and Next Stage Review are implemented locally independent hospices will be directly affected and presented with a number of opportunities and challenges.
Link: NHS National End of Life Care Programme
Published by: The NHS
Format: Website
What is it? The National End of Life Care Programme has been set up to support health and social care professionals to implement the End of Life Care Strategy.
How useful is this? If you want to find out more about the Strategy, this website is invaluable for keeping you updated (obviously bearing in mind, it will be the official line on everything). The tools and case studies are good for bringing the strategy to life. Particularly pertinent for those who work on delivering this strategy
Link: Securing Good Care for More People
Published by: The Kings Fund
Date: 2010
Format: downloadable pdf (394kb) or purchasable hard copy
What is it? This presents the finding of the Kings Fund's followup to their review in 2006 of funding of social care for older people. It has their conclusions, a host of relevant statistics as well as a section on trends and developments. The report not only presents the financial implications of key funding models but also assesses their outcomes, including unmet need.
How useful is this? The breadth of the review and this consequent report is its value. It looks at issues such as the scale of unmet need, growing pressure on resources as well as demographic influences. Good for a comprehensive understanding of how many inter-related issues contribute to an overall trend.
http://www.3s4.org.uk/drivers/government-policy-on-end-of-life-care-in-e...
The NHS in England has failed to take responsibility for ensuring good end-of-life care, according to an independent review.
The analysis, by the head of Marie Curie Cancer Care, says this has led to a "postcode lottery" in funding and service quality.
Tom Hughes Hallett's report calls for the NHS to provide key services such as round-the-clock community care.
Health Secretary Andrew Lansley said people needed "compassionate" care.
A "good death"
The theme of the report is how to ensure a good death on the NHS. The paper highlight some organisations that are doing "excellent" work.
But it says funding and services have developed ad hoc.
It cites a Department of Health survey in 2008 which revealed that palliative care expenditure across primary care trusts ranged from £154 to £1,684 per death.
The report says this variation has had damaging consequences.
"The 'postcode lottery' within palliative care means that patients with the same diagnosis in different geographical locations can expect very different levels of service", it states.
The review says although most people say they would like to be cared for and die in their own home or care home, the proportion who achieve this is "very small".
New NHS duty
It warns that more people will need care and support at the end of their lives in future, with the annual number of deaths expected to rise by 17% from 2012 to 2030.
The report calls for the NHS to take on a new statutory duty that would enable people to be cared for and to die in the place of their choosing.
Under this plan the state would assume a responsibility to fund "core services". These will be defined in the final report next summer. They may include round-the-clock community care, bereavement support for families and carers, and palliative care in hospices and care homes.
This would be a radical change. Adult hospices currently receive about a third of their income from government funds. The figure for children's hospices is lower still.
The report added: "It is essential that there is access to palliative care services to support people in the community at all times.
"This will prevent unnecessary emergency admissions to hospitals and deliver improved outcomes for people."
In a statement the health secretary for England, Andrew Lansley, said: "We need to ensure that the care people receive at the end of life is compassionate, appropriate and gives people choices in where they die and how they are cared for.
"I am pleased to see that the review is making good progress and I look forward to receiving the final report next summer."
http://www.bbc
.co.uk/news/health-11902757
The institutionalised ways we cope with dying do not align with how most people aspire to die. Most people want to die with family and friends nearby, cared for, free from pain, with medical support available when needed. Yet most people will die in hospitals and care homes, often cut off from friends and family, dependent on systems and procedures that feel impersonal, over which they have little control and which too often offer them little dignity. We spend large sums of taxpayer's money – at least £20 billion a year – on services that leave too many people feeling confused, frustrated and distressed too much of the time.
The UK should be able to provide people with better ways to die. The pamphlet argues for improvements to existing services: making end of life advance care plans the norm; training more in the medical profession in palliative care; and more greatly integrating the care services provided by the public, private and voluntary sectors. It also suggests radical innovations: a new infrastructure of home hospices, the creation of a compassionate care benefit and a properly trained volunteer support network providing palliative care – a perfect opportunity for the Big Society.
The challenge is to help people to achieve what is most important to them at the end of life. Dying for Change describes how that challenge can be overcome.
To download free http://www.demos.co.uk/publications/dyingforchange
Today, the Department of Health published Bereavement care services: a synthesis of the literature and Spiritual care at the end of life: a systematic review of the literature
These reports were commissioned to inform future work on bereavement care and spiritual care at the end of life, as part of the implementation of the End of Life Care Strategy.
http://www.endoflifecareforadults.nhs.uk/news/all/dh-publishes-reviews-o...
Daniel Poulter (Central Suffolk and North Ipswich, Conservative)
It is a pleasure to have secured this debate on palliative care and the hospice movement, particularly at a time when the coalition Government are taking the Health and Social Care Bill through the House. It is a great opportunity to talk about this important area of medicine and care, particularly because I do not think that it is always given as much attention as it deserves.
Palliative and hospice care is something that all Members are aware of, because we all have constituents who are suffering with terminal or progressive illness and we all want them to die with the most dignity that can be provided, in the most comfortable and supportive surroundings, and we all want to ensure that their families are looked after holistically. That is why hospices are so valuable to all of us and to all our constituents.
Notably, the previous Government and the new coalition Government have paid a lot of attention to cancer care, but the hospice movement is about not just cancer but a raft of progressive and terminal illnesses, such as heart disease, lung disease, chronic obstructive pulmonary disease and motor neurone disease. The movement is not just for older people, either; it looks after younger people and, indeed, children with terminal illnesses.
To read the full transcipt. http://www.theyworkforyou.com/debates/?id=2011-02-02a.1004.0
PDF version
The National End of Life Care Programme works with health and social care services across all sectors in England to improve end of life care for adults by implementing the Department of Health’s End of Life Care Strategy.
Our website is designed to support health and social care staff working, in any capacity, with people nearing the end of life.
http://www.endoflifecareforadults.nhs.uk/
http://www.endoflifecareforadults.nhs.uk/publications/route-to-success-a...
http://www.endoflifecareforadults.nhs.uk/publications/supporting-people-...