Unintended consequences of rapid changes in community palliative care practice. 2020. (accessed 28 February 2021)

British Medical Association. Verification of death (VoD), completion of medical certificates of cause of death (MCCD) and cremation forms in the community in England and Wales. 2020. (accessed 28 February 2021)

End of Life Care Think Tank. What matters conversations. 2020. (accessed 28 February 2020)

Health Quality Improvement Partnership, NHS Benchmarking Network. National Audit of Care at the End of Life: first round of audit report, 2019. 2019. (accessed 28 February 2020)

Hoare S, Kelly MP, Prothero L, Barclay S Ambulance staff and end-of-life hospital admissions: a qualitative interview study. Palliat Med. 2018; 32:(9)1465-1473

Marie Curie. A place for everyone-what stops people from choosing where they die? A review of the barriers to good end of life care facing diverse groups in the UK. 2020. (accessed 1 March 2021)

National Institute for Health and Care Excellence. End of life care for adults. NICE quality standard 13. 2011. (accessed 3 March 2021)

National Institute for Health and Care Excellence. End of life care for adults: service delivery. NICE guideline 142. 2019. (accessed 3 March 2021)

National Institute for Health and Care Excellence. 2020. COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community). NICE guideline 163. 2020. (accessed 3 March 2021)

National Palliative and End of Life Care Partnership. Ambitions for palliative and end of life care: a national framework for local action 2015–2020. 2015. (accessed 28 February 2021)

Which?. Which? reveals huge NHS care home funding variations across England. 2020. (accessed 28 February 2021)

End-of-life care: perspective of a relative rather than a professional

02 April 2021
Volume 26 · Issue 4

I thought I knew a lot about end-of-life care at home. For nearly 30 years, I have worked in palliative and end-of-life care and had the privilege of working in many different settings, each providing a different experience and level of understanding. I have worked in hospice, community and acute settings as a clinical nurse specialist and at a regional and national level advising on end-of-life care. Recent experiences as a family carer have led me to better understand the challenges of being a carer and to question the equality of end-of-life care service in practice.

The call came at midnight on Good Friday 2020: my relative, anonymised to Jim, experienced a sudden acute event and called 999 and then me, as the family nurse. I arrived to find an ambulance crew continuing their assessment and a very frightened older couple. The ambulance crew's default position is carriage to the acute hospital for investigations. However, this is not always the most appropriate course of action. Difficulties in ambulance staff facilitating end-of-life care at home include an emphasis on providing emergency care and perceptions that hospitals are the default place of safety (Hoare et al, 2018). Proactive planning, such as advance care planning (ACP) (National Institute for Health and Care Excellence (NICE), 2011; 2019) and treatment escalation plans (NICE, 2020), are encouraged to prevent such reactive decision making in crises and to ensure that individual choice is respected. In an ideal world, such conversations are had early, with the ‘what matters most’ element (End of Life Care Think Tank, 2020) of every person's care established and people who may be approaching the last year of life identified (NICE, 2011) so that personalised proactive planning can be enabled. However, these conversations often do not happen, and recent evidence showed that just 7% of patients admitted to acute trusts in England had an ACP (Health Quality Improvement Partnership and NHS Benchmarking Network, 2019). Although ACP is ideal, more often, planning is in response to a sudden crisis or an acute event, such as the situation described here.

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