Electronic palliative care coordination systems can play a role in ensuring people’s right to die in the place of their choice, says Peter Nightingale
This article was part of the End of Life Care channel, in association with Marie Curie Cancer Care. The channel is no longer being updated.
When you ask people with a terminal illness and their families what they would change about the health and social care system, one of the most frequent responses is that they would like to have to tell their story only once.
‘With EPaCCS, hospital staff are more likely to know that a patient has a preference to be cared for in their home’
For too many people, the experience of end of life care is very disjointed, and they have to explain their circumstances afresh to every new professional they meet.
Electronic palliative care coordination systems (EPaCCS) play a critical role in ensuring people are able to die in their place of choice, with available data suggesting their use reduces hospital deaths and increases the percentage of deaths at home and at hospices.
The high number of people dying in hospital – around 50 per cent in the UK – is due in part to the large number of emergency admissions that people who have a terminal illness suffer in the last weeks of life.
With EPaCCS, hospital staff are more likely to know that a patient has a preference to be cared for in their home, in a care home or at a local hospice, and work to make this a reality.
There are some technical challenges in implementing local EPaCCS solutions – such as interoperability of different systems – but evidence shows they can be overcome.
In England, national information standards exist for those wishing to support the development and use of EPaCCS. Many areas have implemented or are implementing EPaCCS.
‘It is in everyone’s interest to support people’s wishes to be cared for and die in the place of their choice’
The National End of Life Care Intelligence Network EPaCCS survey 2013 produced feedback from 46 clinical commissioning groups on the impact of EPaCCS implementation. The most frequently cited benefit was improved communication and ease of information sharing between professionals involved in a person’s care.
Many also reported that the systems supported carers, clinicians, ambulance and out of hours services to make appropriate decisions about a person’s care.
It is still early days for EPaCCS implementation, with around one third of CCGs with operational systems. However, it is in everyone’s interest to use them effectively to support people’s wishes to be cared for and die in the place of their choice, and to reduce unnecessary hospital admissions and costs.
The experiences of North East Essex CCG and Cambridgeshire and Peterborough CCG, both of which have implemented EPaCCS into everyday practice, demonstrate the potential value.
Dr Peter Nightingale is national clinical lead for end of life care at Marie Curie and the Royal College of GPs