In 2008 the UK End of Life Care Strategy recommended that everyone approaching the end of life should have an opportunity to discuss their preferences for care. Personalised care planning and record sharing are foundations for the six ambitions for palliative and end of life care.
In North East Essex there has been an EPaCCS in place since 2013, locally called the My Care Choices Register (MCCR). In 2016 this was expanded to allow the care preferences for people not thought to be in the last year of life such as those with early dementia, frailty or
chronic disease at risk of exacerbation, to allow more people to record their preferences for future care.
As the pandemic approached, we used the MCCR as a key tool for coordinating patient care. Text space was added to the register to allow capture of discussions about preferences for care in case of future Covid-19 infection. Access to the register was facilitated for senior care home staff to allow a wider visibility of advance care plans.
Integrated teams based around the Primary Care Networks (PCNs) were built over a fortnight at the beginning of April. Weekly virtual meetings between PCN team, community and hospice nursing were set up to coordinate the care of patients coded as being in the last weeks of life and the MCCR was used to inform the care co-ordination for people with Covid-19. Lists of patients on the MCCR were sent securely to GP practices each week to facilitate these meetings.
MCCR is accessible to ambulance staff and the 24 hour palliative and end-of-life care single point of access to support decision making in the community. Hospital ward staff are sent a daily update of patients on their wards on the MCCR to ensure these preferences inform hospital care.
Over April and May 2020 595 people added their preferences for future care to MCCR. Over 1% of the local population have now created a register entry. In April and May 2020 326 people had their death recorded on the register. Of those, 277 died with a recorded preferred place of care, 75% of whom died in their preferred place. Only 37 (11%) of the people who died with a MCCR entry in April and May 2020 died in hospital.
Electronic palliative care registers can be a useful tool in a Covid crisis to co-ordinate integrated community care and may facilitate care in a person’s place of preference.