End of life standard ‘needs work’ – GPs

A new information standard related to recording keeping for end of life care is “not fit for purpose”, a GP IT representative has warned.

The End of Life Care Co-Ordination: Core Content Information Standard has been published today by the Information Standards Board for Health and Social Care.

It sets out and describes a core dataset to “make the best use of electronic systems to deliver high quality, well co-ordinated care”, along with associated guidance on record keeping related to end of life care services.

This dataset, developed by the National End of Life Care Programme and the Department of Health, includes information about a patient’s end of life care, their wishes and preferences about where they wish to die, and contact details for relatives and carers.

Joint chairman of the BMA and RCGP’s joint IT committee Dr Paul Cundy said the committee was asked to endorse the new standard, but refused.

“We didn’t feel it was at a level that could be endorsed as a national standard by the GP IT community,” said Dr Cundy.

He told eHealth Insider the committee had concerns about the lack of support for the standard, and about some of its details.

The standard comes with no implementation plan. There is no money to implement the standard and no way to enforce its use.

“The way the standards board has worked in the past is – you can’t have national standard status unless there’s an implementation plan,” Dr Cundy explained.

The standard does not contain any medication information, which Dr Cundy described as “a slightly large hole”, as “that is one of the key things a ‘jobbing GP’ wants to know about.”

And he said that while there is a Read Code for “do not resuscitate” and for “resuscitate”, there is nothing for “status is not known”.

Dr Cundy said it had been suggested that this could be written in free text, but argued that if the information was transferred from one system to another, all the free text could be lost.

“We made those comments and agreed to work with them [the ISB] to bring it up to fit for purpose status. I’m sure we can get there.”

Dr Cundy added that having a standard for an electronic database would not help a GP visiting a patient at 3am, because they would not be able to access it.

“We felt it was far more sensible to put effort into developing a national standard paper file folio that can be kept by a patient’s bedside,” he said.

He argued this would also make the information more useful to carers and nurses, as they were unlikely to have mobile internet access, and would therefore be updating the electronic record at the end of the day – if they did it at all.

A spokesperson for the National End of Life Care Programme said: "The ISB approves information standards and includes representatives of all major organisations involved in health and social care.

"The draft standard received overwhelming support during a professional and public consultation in the autumn.

"The ISB decided that the standard could now be approved while we and they continue to work on outstanding issues, in particular those raised by the joint committee."

The programme said implementation of the standard would primarily be through Electronic Palliative Care Co-ordination Systems, although it should also be useful for paper-based co-ordination systems.

The palliative care systems – formerly known as locality registers – are IT-based approaches that give staff across a range of organisations instant access to up-to-date information on anpatient’s care and preferences.

New contracts with IT providers to establish an EPaCCS must include the requirement to comply with the newly issued standard.

IT suppliers of existing systems which are used for end of life care patients will be required to ensure compliance by December 2013.

Dr Bee Wee, president of the Association for Palliative Medicine, said recording and sharing key information about a person’s treatment and their preferences was essential to support timely and high quality end of life care.

“This standard will improve accuracy, avoid misinterpretation and misunderstanding and reduce the duplication of questioning that individuals sometimes encounter,” she said.

The new standard sets out the technical criteria and processes that contracts need to cover. The implementation guidance supports those planning to implement EPaCCS and sets out procurement and technical advice, including potential technical approaches.

Both documents are available on the NHS End of Life Care Programme website.