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How well are we coordinating end-of-life care?

Electronic Palliative Care Coordination Systems (EPCCS) – which provide a means of recording and communicating key information about people’s wishes and preferences for end of life care – are being successfully rolled out across England. One example being London’s Coordinate My Care. Of those that have died on the register, figures show that 51% died in their usual place of residence (the national average is 41.7%) whilst 24% died in hospital. Crucially, this register relies on healthcare professionals knowing about their existence and knowing which of their patients should be on it (those who you might expect to die within the next 12 months).

The 1% campaign is designed to engage with clinicians and encourage them to identifying the small percentage of people who they care for who might be in their last year of life, to work with those individuals to plan their care, and to encourage colleagues to do the same. Over 2,900 clinicians have signed up, and a post-campaign survey found that two in five had increased the number of patients listed on their end of life care register. For whatever reasons (difficulties in identifying the patients? not understanding the purpose of the campaign? not having the time?) three in five had not increased the numbers registered, which suggests that further work needs to be done with GPs so that patients’ end-of-life wishes can be recorded and ultimately respected. This has obvious implications for registering dying patients on an EPCCS.

The implementation and audit of the Liverpool Care Pathway (LCP) is reported. The recent National Care of the Dying Audit assessed the LCP and found that, on the whole, people are being communicated with about medical end-of-life decisions. 94% of relatives/carers were given a full explanation of the care plan and healthcare professionals were able to discuss this with 56% of the dying people at the end of life. 97% of relatives/carers were aware that the person was dying and healthcare professionals were able to discuss this with 58% of people at the end of life. It is also reported that training is being done in how to manage difficult conversations. Whilst only a small percentage of relatives/carers are not being communicated with effectively about someone being placed on the LCP, such instances can be very distressing and it is important that loved ones are always kept up to date.

Overall, the coordination of end-of-life care appears to be improving. However, the use of Advance Decisions is not discussed in the report – perhaps it is assumed to be part of Advance Care Planning. Rather, there is an emphasis on DNACPR (do not attempt cardiopulmonary resuscitation). Deciding about artificial nutrition and hydration, the use of antibiotics and respiratory assistance are all crucial in end-of-life care and should not be overlooked – which is where an Advance Decision can come into play. Unless these wishes are recorded in advance, the medical team has to make best interest decisions (wherever possible with input from the family – see above) which may not necessarily reflect the wishes of the dying patient.

The fourth annual report on the End of Life Care Strategy: can be viewed at: