Research backs value of end of life care learning pack for extra care housing

A learning resource aimed at improving end of life care for people living in extra care housing schemes has boosted training and helped develop links with vital health and social care services, an independent evaluation has concluded.

Researchers from the Centre for Housing Policy at the University of York found that the managers of schemes using the pack, which includes a DVD, also reported improved interaction with residents and families around end of life care.

Amongst managers who had used the resource with their staff, the findings were positive enough to suggest it could be a boon for wider forms of specialist housing, notably sheltered housing, and domiciliary care agencies.

But the evaluation suggests that not enough such schemes know the resource is available and that even those that do might not be making the best use of it.

The End of Life Care Learning Resource Pack: Information and Resources for housing, care and support staff in extra care housing was developed by extra care housing provider Housing 21 and the National End of Life Care Programme (NEoLCP) with part-funding from Skills for Care.

Around 6000 copies have been distributed or downloaded since the launch of the package in 2009.

What is in the learning resource pack?

Designed specifically with extra care or similar housing in mind, the resource is a practical tool. It provides guidance and information on a range of topics for anyone caring for someone with a life-limiting condition.

The areas covered include:

• Local services and contacts that can help in the delivery of end of life care
• Medication issues
• Common symptoms that might occur at the end of life
• Mobility issues
• Religious, cultural and spiritual needs
• Assistance and care in the last days of life
• Care after death - supporting families and other residents.

The evaluation results

Of those scheme managers who had seen the resources and responded to the evaluation survey, nearly half (47%) said they had initiated specific staff training as a result. (A further 14% were already providing some form of training around end of life care).

An even higher percentage of managers, 65%, said it had helped in developing links with professionals and agencies that could improve co-ordination and planning of end of life care. This included relationships with GPs, district nurses, community palliative care teams, Macmillan or Marie Curie nurses and faith groups.

In more than half the schemes (53%), staff had used the information in the resource to initiate discussions with residents about their wishes and preferences for end of life care. In most cases they implemented a system of record-keeping to record those choices.

Around eight out of ten scheme managers said the resource had helped staff talk to residents about such issues while 91% agreed it had helped staff talk to families about end of life care.

While only a small number of managers had seen the DVD, 96% of those that had said it had been very or quite useful.

Research suggests many extra care housing residents are admitted to hospital or a nursing home as they approach death.

The evaluation concludes that more people could have genuine choice over their care and where they die if the 'valuable' resource was used more widely.

It says: "These results indicate that the resources, both the written guidance and the DVD, have been very effective in taking forward thinking and practice on end of life care. Their potential to influence practice could be greatly enhanced (if they are taken up) more widely."

Making the most of the resource

Seeking to improve care in extra care housing is a complex business: often the care and housing are provided by different organisations and residents can buy into different levels of care packages. Care is increasingly delivered and funded in diverse ways - not least with the rise of personal budgets.

That split between housing and care provision also suggests that the pack could help domiciliary care agencies and their staff - both when delivering care those in extra care schemes and for many of their other clients.

Like most areas of care, there is often a high staff turnover

Training and resource tools clearly only work if they reach the right people - in this case, usually those at the frontline and those with extensive contact with residents.

Faced with these realities, extra care housing providers will need to work closely with their partners providing the care to ensure both residents and staff benefit.

Developed as a practical tool that recognises the demands on both providers and frontline staff, both the DVD and written resources can be presented to new employees to ensure the benefits of improved end of life care planning are retained when staff leave.