Evidence in Brief
Who provides end-of-life care in care homes?
A study looked at the responsibility for end-of-life care in care homes without nursing staff. It highlighted that formal carers need support to care for frail older people
Most care homes in England do not have nurses on site and instead rely on visits from GPs and district nurses for primary care and referral to specialist services. It is often unclear whether responsibility for the provision of end-of-life care rests with the care home staff or external health professionals. In addition, identifying which care home residents are likely to die imminently and, as such, should be approached about end-of-life care can be difficult.
Handley et al (2014) explored how older patients in care homes without on-site nursing provision are identified as being near death and provided with end-of-life care. The study was conducted at six
care homes in the east of England that had no on-site nursing staff and had been assessed as providing good or satisfactory care. Care notes and medical records for 121 residents were reviewed four times during the 12-month study. In addition, 30 care home staff, 11 district nurses, five palliative care specialist staff and three GPs were interviewed.
In total, 23 (19%) residents died during the study period. None of the baseline characteristics that were reviewed - age, time spent in care or Barthel dependency score - were associated with whether the residents died. Seven out of 14 unexpected deaths were preceded by prolonged periods of diagnostic uncertainty and multiple GP visits for diverse non-specific (but cumulative) symptoms. Analysis of the interviews showed that care home and primary care staff found it difficult to determine which residents were near death unless a terminal health condition, such as cancer, was present.
Care home staff were uncertain about when to talk to residents about death and when and how they should involve relatives. Both care home and primary care staff were unsure who had responsibility to hold discussions on end-of-life care. Those homes that had structured assessments of patients and end-of-life resources had better communication and integrated working once a resident was recognised as dying. However, staff working in these homes were no better at providing end-of-life care for residents who died after progressive illness or those who died after periods of illness and recovery.
The authors recommended that care home staff and health professionals should work together over sustained periods to review and discuss end-of-life care for care home residents.