Feature End of Life Care

Delivering a digital death

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2528 (Published 24 April 2013) Cite this as: BMJ 2013;346:f2528
  1. Michael Cross, freelance journalist
  1. 1London, UK
  1. michaelcross{at}fastmail.fm

London patients with life limiting illnesses can now record their end of life preferences on a single electronic record. Michael Cross looks at the project’s background and asks if it can ever go national

From this summer, NHS patients in London will be able to add a new function to their mobile phones. A mobile app will give them access to their Coordinate My Care record, a service designed to ensure that people receiving end of life care get appropriate treatment from any health and social care professional they encounter—including respect for any wishes they make about resuscitation or preferences for dying at home rather than in hospital.

The app, which will also support mobile working by professionals, is the next planned enhancement for the Coordinate My Care service, which this month went live across London’s entire NHS, including an ambulance trust, 34 acute and specialist trusts, and 14 inpatient hospice units. It is a good example of the locally led information technology initiatives that are likely to become the norm in the reformed English NHS.

The drawback is that local initiatives can result in duplicated effort and create islands of information that are difficult to exploit more widely, if required.

Better coordination of end of life care has been recognised as a national priority since the publication of the Department of Health’s end of life care strategy, in 2008. Surveys consistently show that although most people with terminal illnesses wish to die at home, less than 20% of those with chronic illnesses do.1

Emma Hall, consultant in palliative medicine at St Christopher’s Hospice, London, says that the reason is often a lack of awareness that a patient with, for example, a chronic lung disease is receiving end of life care. “Breathlessness is a very frightening symptom, and when people are frightened it is the ambulance service they call.” The result is a high rate of inappropriate resuscitation.

The capital has a high rate of deaths in hospital—66%, compared with a national average of 58%. Only 20% of people in London die at home, and the figure for deaths in nursing homes in London is over 10 percentage points lower than in other parts of the country.2

Political obstacles

A computerised register of end of life wishes, accessible by all professionals likely to come into contact with a particular patient, has long been recognised as the solution.

In theory, sharing this kind of information should become routine under current government plans for the NHS in England to become “paperless” by 2018. However, perhaps because managing death remains a politically taboo subject, high level visions of a computerised health and care service tend not to emphasise this outcome. The Department of Health’s 2012 power of information strategy does not even mention the topic. Although it was presumed that recording wishes for end of life care would be one of the purposes of the summary care record created under the now defunct National Programme for IT, this too received low priority amid controversies over confidentiality and consent.

Tacitly recognising that a national solution was unlikely to emerge in a reasonable time frame, the government recommended in 2008 that commissioners create local end of life care registers to store information on all patients approaching the end of life. So called locality registers, since renamed electronic palliative care coordination systems (EPaCCS), would be used by primary and community care teams, as well as ambulance and emergency department staff.

In 2009 the National End of Life Care Programme commissioned eight sites nationally to pilot end of life care registers, supporting them with £50 000 (€59 000; $77 000) in funding. In London, there was early concern about the concept of creating multiple registers. The London Ambulance Service in particular faced having to search 20 to 30 different registers for clinical information if each primary care trust had developed its own approach. However, in December 2010 the leading project groups agreed to work together to ensure that the development, piloting and roll-out progress in a planned and coordinated way.

User friendly solution

A deliberate decision was made to find a more patient friendly name—hence Coordinate My Care. “We wanted to avoid mentioning death and palliative care,” says the project’s clinical lead, Julia Riley of the Royal Marsden cancer centre. Even the word “register” was problematic, because of popular associations with sex offenders.

In a pilot, a paper version of datasets for the Coordinate My Care register was tested over two years. Initially, the paper was faxed to out of hours general practitioners and the London Ambulance Service for transcription into electronic databases. However, an audit of these forms found that the quality of the data collected was poor and that they could not be amended as patients’ wishes and clinical needs changed.

The electronic version integrated with the NHS 111 service ensures that key data are entered and enables professionals working in acute and community settings to update the record as the patient’s needs and wishes change. The Coordinate My Care care plan is created by a patient with their nurse or doctor if and when both feel it is appropriate. The template has 11 mandatory fields, including personal details (name, address, etc) diagnosis, preferred place of care and death, resuscitation discussions, and resuscitation status. When a definitive answer is not appropriate—for example, preferred place of death—“not yet discussed” may be entered from a drop down menu. Some 5020 professionals have so far been trained in its use.

To date, 5300 patients have created a Coordinate My Care care plan. About half of these patients have cancer and the remainder have other conditions such as renal failure, motor neurone disease, and dementia. Overall, the programme says that 77% of people who had a care plan who then died did so in their preferred place.

The London team says that the benefits of creating a single electronic record for patients with life limiting illnesses across London will include support for clinical governance through common practice, common process, and the consistent recording of information. It should also improve communication and transfer of information across acute and community health sectors and social care. This will become even more important as the Coordinate my Care record is extended to patients with chronic, as well as end of life conditions. The record may also save money by reducing unnecessary hospital admissions.

Coordinate My Care has received £1.5m in funding for the current year. The plan is to continue the rollout, making information available electronically to all users who want it by the end of 2013, and in the longer term to evolve from a system dealing with end of life care to coordinating care in all long term conditions. The team would like to see it become the preferred system for this purpose across the NHS in England.

National potential

The recent NHS reorganisation in England, including the abolition of the central IT agency Connecting for Health on 1 April, has given rise to concerns about whether initiatives such as Coordinate My Care can be nurtured and extended nationally if successful. The IT industry body Intellect warned this month that although the NHS is responding to demand for patient focused IT enabled systems, this is happening in pockets, with progress “constrained by the old architecture.”3

Its report The NHS Information Evolution recommends that the NHS develops a new information architecture modelled on the internet.3 It should be designed with mobile in mind, and with all information searchable.

Coauthors Paul Cooper and Paul Mukherjee said, “NHS businesses can become more effective and user oriented by using digital channels that the social media, airline, insurance, and legal industry have embraced. By punching holes in the information silos we can be much more creative and innovative for the benefit of patients.”


Cite this as: BMJ 2013;346:f2528


  • Competing interests: I have read and understood the BMJ Group policy on declaration of interests and have no relevant interests to declare.

  • Provenance and peer review: Commissioned; not externally peer reviewed.