Why we are still dying at hospital, not home: the case studies

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Liverpool Partnership Programme - end of life care

A partnership between Royal Liverpool and Broadgreen University Hospitals Trust and Marie Curie Cancer Care was set up in 2011 after the realisation that delays in organising care packages were resulting in a higher number of patients dying in hospital, when this was not their preferred place of care.

A high level of unnecessary admissions and occasional shortfall in community care provision, particularly at short notice, led to a disjointed transition from hospital to home.

Rachel Ainscough, Marie Curie’s service design manager for the northern region and programme manager for the project, explains that the service that has been set up offers a dedicated integrated team of case managers working between Royal Liverpool and Broadgreen University Hospitals Trust and the Marie Curie Hospice, Liverpool.

It is this team’s job to ensure that patient discharge is well coordinated with appropriate levels of care based upon assessed need.

‘Patients are discharged a lot more quickly from the trust which means reduced length of stay, which has an economic impact’

“People at the end of their life in Liverpool had a high level of inappropriate admissions to hospital due to lack of short notice community support and this, as well as delays in discharge, meant there were an increasing number of people dying in hospital,” Ms Ainscough explains.

“We now have three case managers, two based in the hospital and one in the hospice, in charge of actively supporting and coordinating discharge on a day to day basis and identifying those who are coming to the end of life and who would like to die at home.”

A supported discharge service has also been set up to complement existing resources to care for people at home. Overseen by one of the case managers, Marie Curie health and personal care assistants provide appropriate health and social care to patients during the 72-hour period following discharge.

“Crucially this gives community services a few extra days to organise a package of health and personal care services for the patients,” Ms Ainscough says.

“There is both the quality element to this service in that the patient can die where they want to, but it also means that patients are discharged a lot more quickly from the trust which means reduced length of stay, which has an economic impact.”

Somerset Delivering Choice Programme

The Marie Curie Delivering Choice Programme in Somerset was launched in June 2008 in a bid to improve local care and support services so that more people can have the choice of being cared for at home at the end of their lives.

First established in Lincolnshire in 2004 (see below), the Delivering Choice Programme now operates in 19 areas.

Covering a population of around 700,000 people in Somerset and North Somerset, the DCP involved the local NHS, hospices, acute trusts, social care and a number of voluntary and independent sector organisations.

In order to better understand the needs of local patients and carers, the Somerset project first completed a comprehensive review of existing services. Seven workstreams were set up to look at key areas of improvement including information sharing, coordination, communication, professional development and the provision of high quality care whenever it is needed.

Quality care

New initiatives introduced include end of life care coordination teams, an out of hours advice and response line, discharge nurses, support workers providing health, social and personal care, and an information website.

Karen Burfitt, Marie Curie’s head of service design for the west and north of England, said much of the reason for the project’s success was the high level of collaboration from senior and frontline staff. “Crucially we had buy-in,” she says.

She also believes that the project would not have succeeded without the involvement of the Marie Curie independent project management team.

An independent evaluation by the University of Bristol, published in October 2012, has found that patients using services introduced by the Somerset Delivering Choice project are less likely to be admitted, or to die, in hospital at the end of their lives.

It also looked at the experiences of families, carers and health professionals using these services, and they consistently reported excellent quality, coordinated care.

The results show that, in the North Somerset PCT area, those receiving a Delivering Choice intervention were 67 per cent less likely to die in hospital. The evaluation also found that emergency admissions to hospital in the last month of life were 51 per cent lower and A&E attendances were 59 per cent lower for Delivering Choice service users in North Somerset, compared to people not in contact with the services.

In Somerset PCT’s area, those receiving a Delivering Choice intervention were 80 per cent less likely to die in hospital compared to those who did not receive care from Delivering Choice. The evaluation also found that emergency admissions to hospital in the last month of life were 39 per cent lower and A&E attendances were 34 per cent lower for Delivering Choice service users in Somerset, compared to people not in contact with the services.

Lincolnshire Delivering Choice project

Launched in 2004, the Lincolnshire project was the Marie Curie Delivering Choice Programme’s first pilot site. The project introduced pioneering end of life care initiatives, including a community nursing rapid response service, palliative care coordination centre and discharge liaison service.

After completion in March 2008, services were handed over to local partner organisations and are now part of the local delivery plan.

According to independent evaluations by the King’s Fund and Lancaster University, the Lincolnshire project provides better patient outcomes at no extra cost.

The King’s Fund evaluation found that deaths at home for patients accessing the project’s services were 42 per cent compared with non-users at 19 per cent. Importantly, the evaluation revealed no difference in overall cost of care, because the increased community care provided by the programme’s new services was offset by reductions in acute admissions, number of GP contacts, 999 ambulance journeys and out of hours visits.

The Lancaster University evaluation reported that 71 and 63 per cent of patients in Lincoln and Boston respectively who used the Discharge Community Liaison Service achieved their wish to be cared for at home. The evaluation also found that the Rapid Response Service played a key role in keeping patients at home until they died. As many as 73 per cent of cancer patients who accessed the service in Boston and South Holland were able to die at home.

Glasgow Palliative Care Fast track Discharge Service

Funded through Marie Curie and NHS Glasgow’s “Reshaping Care for Older People Change” fund until 2015, the service brings together Marie Curie, NHS Greater Glasgow and Clyde, the Scottish Ambulance Service, Glasgow City Council Social Work Department and Cordia, a local social care provider.

The service aims to enable the safe and timely discharge of patients with palliative or end of life care needs from hospital or hospice to home. It also takes referrals from community services for the purpose of avoiding unnecessary admissions where possible.

Fast-track palliative care discharge liaison nurses based both at the Glasgow Royal Infirmary and the Marie Curie Hospice in Glasgow assess the care needs of patients and arrange support for the period immediately after their discharge home.

A team of Marie Curie senior health and personal care assistants can then support patients at home for up to three days, providing health and social care in one visit.

Diana Hekerem, Marie Curie’s head of service development for Scotland, Wales and Northern Ireland explains that the broad aim of the project was to increase the proportion of care provided to people in their own homes at end of life.

“Marie Curie acted as project manager. We come from a culture of collaborative working so it was easy for us - we worked primary care and the acute trust, the hospice and social services,” she explains.

She says that it has been important to have a project manager to performance manage and evaluate the service.

Benefit to patients

Ms Hekerem says that one of the key parts of the jigsaw provided by the service is the period of intensive support that is now provided to patients and carers just after discharge, something that was not available beforehand.

“This, and the fact that we have discharge liaison nurses with an understanding of what services are available in the community, has given the clinicians in the acute trust the confidence that these palliative care patients can be managed in the community and that they can be discharged from hospital,” she explains.

So far the figures show that from April to December 2012, 113 patients have benefited from the service. The revenue cost of the service for the current year is £151,330, which includes all staffing costs. The project manager is a volunteer and the service operates from the Marie Curie Hospice Glasgow, so there are no service accommodation overheads.