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

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.