Electronic coordination of palliative care and its effect on primary and community care

Surveys show that most people want to die at home,1 and dying in the place of one’s choice is used as a marker of the quality for end of life care. But, consistently across most of the United Kingdom, less than 30% of people actually do die at home.1

As the population ages, the demand on hospitals for acutely ill patients will continue to rise, and the number of deaths in hospital is predicted to increase.2 To ensure that the workload of hospital staff does not grow, aspects of care that can be delivered in the community are being shifted to primary care, and the delivery of end of life care is one such shift.

In 2008, the Department of Health published its end of life care strategy.3 This supported the development of end of life registers, called electronic palliative care coordination systems (EPaCCSs), to improve coordination of care for these patients.

Before 2008, only 39% of patients treated by the Royal Marsden NHS Foundation Trust died at home. A service called Hospital2Home was set up to facilitate safe discharge and a package of care. To increase efficiency, this service was underpinned by an electronic solution that developed into an EPaCCS. Several other EPaCCSs in London subsequently joined Hospital2Home, and it was renamed Coordinate My Care (CMC). Over 6400 CMC records have since been created. Of 1936 patients who have died since CMC was developed, 82% died somewhere other than in hospital and 78% died in their preferred place.

Over the past year, we have evaluated CMC working alongside general practitioners; Royal Marsden Hospital; the London ambulance service; and the Sutton and Merton clinical commissioning group, community care team, and out of hours team. We looked specifically at the effect on community staff time.

We investigated the number of encounters patients had with hospitals and community health professionals in Sutton and Merton during the six months before they died. Compared with matched cohorts of patients not on CMC, patients on CMC attended the emergency unit less often and stayed for less time when admitted to hospital, used emergency out of hours services less often, and used in-hours community services (such as general practitioners and district nurses) more often.

Overall, we found that CMC influences a change in patient pathway away from hospital and unscheduled care, increases the use of community staff, and helps more people achieve their preferred place of death. Attaching a cost to each of these services shows that, despite increased use of community staff, the net cost of care for patients is considerably lower.

CMC helps drive a service transformation that has been recommended in various high profile reports, most recently in the Francis report.4 It discourages working in silos, promotes integrated care, and shows the benefits of improved coordination of care through the outcomes achieved.

As more patients die out of hospital, the implications in terms of cost and quality of care are critical for commissioners, doctors, and patients. Community nurses need to know how many extra visits to expect, and general practitioners need to know how many extra consultations they may have, since these factors affect the quality of care provided. Our data suggest that this shift in patient care to the community leads to an increase in workload for general practitioners. Trying to absorb this within current staffing levels, without changing how primary care and community services are delivered, will quickly lead to a decline in care quality.

One way of avoiding a decline in care quality might be to employ other members of community staff, such as community palliative care teams, to manage the increase in workload. Another would be to harness efficiencies in community services that reduce duplication of work and promote integration. At the same time, money needs to follow the patients so that appropriate staffing levels and skills sets are available in the community.

The success of this electronic care coordination system now needs to be pushed further. It needs to become more user friendly, and integrating it with existing electronic patient record software will be key. Electronic care coordination should also be considered in the management of chronic diseases.