Most people say they would prefer to die at home but many do not as end of life care has traditionally been neglected. But it looks as if things are finally starting to change

Key points

  • End of life care is beginning to change for the better, but there is still a long way to go.
  • Since people will still die in hospital, high quality end of life care must become a generic rather than specialist skill.
  • A public dialogue is needed to challenge the taboo around death and dying for the benefit of those near the end of their lives.

If this were a hard hitting news story, it would appear under a banner headline about people dying in hospital in pain when they would rather be at home surrounded by loved ones.

It might quote Commons public accounts committee chair Edward Leigh, talking about last month’s committee report into end of life care and saying: “That health and social care providers have traditionally given a low priority to end of life care is shown by the lack of training in basic end of life care among frontline staff. It is appalling that people dying in hospital are not always being given the end of life care they deserve, including effective pain management and dignity and respect.”

But this is not a news story and, once you scratch beneath the surface, a slightly more complex picture emerges. While no one is saying that end of life care is perfect or denying that people need more choice about where to die and better care when they do, senior clinicians working in end of life care contacted by HSJ immediately after the committee report’s publication were clear that things are changing for the better and this has been driven by the Department of Health’s 2008 end of life care strategy.

Take this from Deborah Murphy, who is national lead nurse for the Liverpool care pathway and associate director of the Marie Curie Palliative Care Institute in Liverpool. “In my lifetime, I have never known a better time for absolutely transforming care of people at the end of life.”

Or this from Edwin Pugh, who leads the clinical pathway group in NHS North East and is also a consultant in palliative care medicine at North Tees and Hartlepool foundation trust: “For the first time in my practice I can see the oil tanker changing direction and speeding up. The challenge is to keep it going irrespective of the politics of the next few years.”

The general consensus is that end of life care is becoming a priority; that strategic health authorities are breathing down the necks of their primary care trusts to get moving on this and start commissioning new services; that PCTs are engaged and for the most part willing to spend new money allocated to them; and that acute trusts have started to address the quality of care they offer to patients, for example with pain management strategies.

Home truths

No one is downplaying how far there is still to go. As Professor Pugh says: “We are one year into what is a five to 10 year strategy.”

He is keen to get behind some of the figures, which suggest most people would prefer to die at home (see box, right).

“The reality is that most people do die in hospital, a proportion of which, if there was appropriate support in the community, would die elsewhere,” he says.

For a start, says Professor Pugh, the definition of “home” needs to be clear.

“The literature would say that you get 20 per cent of people dying at home, but if you add in care homes, which many people regard as their home, what happens to the figures?”

In some areas they go up to over 30 per cent of deaths.

While some diseases are fairly predictable, such as cancer, and allow forward planning, others are not, he adds.

“In my patch, 75 per cent of people with respiratory problems die in hospital. We have to be aware that some of them may have been admitted appropriately for acute management but there are undoubtedly a good number who could be supported better.”

The challenge, he says, is to provide 24 hour support outside hospital.

“Not telephone support, but practical nursing and pharmacy support, so that if it is 2am on a Sunday, someone can come out. When we analysed this in the North East, we found that providing out of hours support was the biggest thing that would enable us to support patient preferences.”

It is beginning to happen in some areas. West Cumbria has achieved home death rates of 40 per cent by developing a hospice at home scheme, for example.

Generic not specialist

Providing these services is one thing; getting people out of hospital to use them is another. Ms Murphy outlines some of the complexities.

“Suppose you have a patient diagnosed as being hours or days away from death. You need a discussion with carers and relatives about how quickly you can put services in place to get them home and what level of risk is involved in that. They could die in the ambulance. They may be readmitted to hospital. Is there an ambulance to take them? Can the GP do a visit?”

The public accounts committee highlights a tool called the rapid discharge process, which Ms Murphy’s team has used 25 times in the past 11 months. Of these, 80 per cent died at home within 48 hours; the others improved and remained at home. No one was readmitted.

“When it works well, it has the potential to get a patient from hospital to home within four hours of the decision being made,” says Ms Murphy.

Given that people will still die in hospital, the other challenge is to take high quality end of life care out of the specialist arena.

“We need specialists but this [end of life care] has to be a generic skill,” says Professor Pugh. “In my hospital last year, 9.6 per cent of bed days were taken up by people admitted to die. It is in every medical specialty. You cannot expect one specialist to get round all those patients. It has to be a generic skill supported by specialists and this is a big issue where we need training.”

Here he is in agreement with the public accounts committee report, which highlighted a need to improve health and social care staff’s skills. It wants PCTs and local authorities to commission hospices and voluntary groups to provide education for community and care home staff.

The Care Quality Commission should provide assurance about the skills level of staff in health and social care organisations, as part of the new registration, inspection and monitoring regime, it says.

The other big challenge is commissioning. The report is blunt: “Primary care trusts have limited understanding of the local demand for and the cost effectiveness of their commissioning of end of life care services,” it says.

Mark Roland, clinical director for end of life care at NHS South Central and end of life lead for Hampshire PCT (the biggest PCT in the country), could not agree more.

“Commissioners in PCTs tend to be junior people with a high turnover,” he says. “In only one of the nine PCTs here in this

SHA are the commissioners the same as they were two years ago when we started developing our strategy.”

Vested interests

Now, these fairly junior managers are up against a tough job, he says.

“It is a steep learning curve even beginning to understand what end of life care is. Where does it start, how does it relate to long term conditions, how does it relate to palliative care and hospices? There are plenty of clinicians in the field who are prepared to give conflicting answers. There are lots of vested interests and commissioners are in the middle of this.”

Stockport PCT director of commissioning Nicola Baker, who is also NHS Alliance lead on end of life care, says Dr Roland paints a familiar picture - although one that is changing rapidly. “It is becoming a much bigger priority,” she says. “We are clearly getting a view that people do not want to die in hospital. They want choice.”

Improving commissioning skills is no easy task. NHS South Central ran a summit in January 2008 with 120 clinicians and commissioners from nine PCTs. The result was a commissioning resource booklet.

“It was fantastic,” says Dr Roland. “But only one of the commissioners is still in post and each new commissioner has to try to get up to speed.”

The SHA’s next move is to employ an end of life care programme director.

Dr Roland is now working with PCTs to deliver results for the extra £286m funding that came with the government’s 2008 end of life care strategy. Some have made significant investment already, he says, but a few are faltering as the financial screws turn in the NHS. He wants a reduction in the number of hospital deaths of 3-6 per cent in the first year and reckons the central allocation to PCTs is about one third of what is needed to make alternative provision.

“It is going to take a small investment to make a small change,” he says. “We hope we will be able to show that in a population of 250,000, by supporting two people a week to die at home according to their expressed preferences, will save £135,000 a year.”

Underpinning this is a massive cultural shift, outlined by Professor Pugh.

“I went to see a patient at home recently. She had a lovely bunch of flowers on the table and I complimented her on them. She said they were from a friend who had stopped visiting. She would rather have seen the friend.

“If any of this is to work we have to start to challenge the taboo around death and dying. The real issue is how the public feel about them and how we incorporate things like dignity and spirituality into the care we provide.”

End of life care facts

  • Half a million people die in England each year, of which 27 per cent are cancer patients
  • 60 per cent of people die in hospital
  • Most people, when asked, would prefer to die at home
  • Primary care trusts estimate they spent £245m on specialist palliative care in 2006-07
  • The cost of providing health and social care to cancer patients in the 12 months before their death is estimated at £1.8bn
  • In July 2008, the DH published its end of life care strategy, which commits additional funding of £286m over two years and aims to increase the availability of services in the community and develop the skills of health and social care staff

View from a primary care trust

Norfolk PCT has worked closely with Norfolk county council to improve end of life care since 2005. Most recently, they jointly commissioned and delivered the Marie Curie Delivering Choice toolkit, looking at what was available now and what should be developed.

Some of the results have been very surprising, says assistant director of out of hospital care Wendy Hardicker. For example, it has highlighted a group of people who do not want to die at home: people aged 40-50 who are single or are single parents.

“There is nobody at home to care for them,” she says. “The question is where do they want to die and how can we provide it? A nursing or care home alongside elderly people is not going to be right, nor is the acute hospital. It is going to take some thinking about.”

It is not a huge group - 48 out of the 8,000 hospital deaths in Norfolk fell into this category in 2007 - but it is illustrative of how the end of life care strategy is helping commissioners to think differently.

“We are starting to think about the provision of end of life care across the whole continuum now,” says Ms Hardicker. “Yes, we want to reduce the number of people dying in hospital, but we need to get away from the idea that this is at home. We also want to look at bereavement services.”

The PCT is now looking at how to support high quality end of life care in care homes. This means looking not just at clinical care but at the bureaucracy that surrounds funding for care in the last six weeks of life.

“We cannot have people saying they cannot afford to die at home,” says Ms Hardicker.

The PCT also wants to explore how new technologies can help, such as providing a webcam so a patient at home can talk to a Macmillan nurse or palliative care consultant.

The Liverpool care pathway

The Liverpool care pathway was developed in the 1990s to provide clinicians with a tool that would help them plan a care package for people who were diagnosed as close to death in hospital.

It has now been taken up nationally and the Marie Curie Palliative Care Institute in Liverpool will produce the second national audit of end of life care later this year.

Eighty per cent of eligible hospitals are involved and the results will capture evidence about quality of care, for example whether patients had access to the right medicines available at the right time, and allow trusts to benchmark their performance.

The national audit will be followed by a new version of the care pathway that will include a balanced score card that could be used to develop key performance indicators for end of life care. Ms Murphy, who leads on the work, hopes the Care Quality Commission will consider building these into its new registration processes.

The Marie Curie end of care life programme

Marie Curie Cancer Care developed its end of life programme, Delivering Choice, in 2004. It has been evaluated by the King’s Fund and endorsed by the Department of Health as the kind of approach that can be effective in reducing the number of deaths in hospital.

The programme helps providers and commissioners develop services that enable people at the end of their life to die in their place of choice, most commonly at home. There are seven official sites across the UK and more are now using the model independently.

Lincolnshire was one of the first on board. It started by creating a partnership of health, social care and voluntary organisations that analysed the barriers to choice and developed solutions.

New services included discharge community link nurses, who liaise between hospital and community services, a rapid response team to provide out of hours cover, and a countywide palliative care co-ordination centre that books packages of care.

By 2008, the programme had increased the proportion of home deaths from 19 per cent to 42 per cent for those who accessed the services.

The evaluation was not able to show significant savings in acute care costs, but there was no extra cost in providing the community services.

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Marie Curie Delivering Choice programme