Changing NHS end of life care for the better

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.”

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