End-of-life shared systems face ‘immense challenges’ – paper

Attempts to set-up end-of-life electronic care systems are falling short, with many failing to reach the dying patients that need them, a new paper says.

The paper, published in quarterly BMJ Supportive and Palliative Care, reviewed the development and use of electronic palliative care coordination systems in England.

The government has committed to rolling out EPaCCS or equivalent shared end of life digital records across England by 2020.

The researchers found there was little guidance about what an EPaCCS should look like and weak evidence that the systems that were operating were delivering benefits for patients.

“EPaCCS also face immense challenges, including ones of implementation, sustainability, cost-effectiveness, equality and service capacity,” the paper reports.

In a basic sense, an EPaCCS is a shared electronic record outlining healthcare information and end of life preferences for a dying patient, which is then accessible to any health staff likely to be involved in that patient’s care.

They are aimed at reducing the number of people who die in hospital, contrary to their wish to die at home with their families, and cutting unnecessary hospital admissions.

A survey in 2013 found there were 82 EPaCCS under development, involving most clinical commissioning groups. But by November 2014, 49 CCGs reported having an ‘operational’ EPaCCS.

Of those, 18 EPaCCS providing the service to dying patients, about 26,000 of them, and no more up-to-date figures have been published since.

EPaCCS that were up and running, such as Coordinate My Care in London and My Care Choices in Essex, had reported “striking outcomes” in increasing the rate of patients dying in their preferred place.

However, the report comments that their evaluations relied on small sample size with the potential for selection bias and conflation of correlation and causation.

“The latest national evaluation was not able to identify a statistically significant difference between EPaCCS and non-EPaCCS sites in terms of improvements in death in usual place of residence, hospital admissions and resource use.”

A lack of funding was also holding back EPaCCs, particularly when it came to sharing them more widely among the broad scope of different health organisations that might care for a dying patient.

“Most EPaCCS developers have chosen one of two suboptimal solutions while working on or awaiting a new level of record integration.”

One of the researchers, Cambridge University’s Dr Mila Petrova, said to reach the 2020 goal greater transparency was needed around existing EPaCCS to make sure public money was being spent appropriately.

“To me, we are just getting into trouble by not recognising these challenges, wasting money and not getting anywhere,” she said. “The evidence is so weak that it is very problematic.”

Informatl feedback from people involved seemed to suggest uptake for many schemes, even the most advanced, was low and dropped after an initial surge.

“You can have a system that works incredibly well but the problem remains how many people will use it.”

Nevertheless, the research found there was huge potential in some EPaCCS systems, which could even become the model for a broader shared care record.

The paper was written by a collaboration of researchers and clinicians, some of whom are involved with or leading EPaCCS deployment within the NHS.

It was funded by National Institute for Health Researcht.