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Non-professional carers' views on the care of the dying; the impact of a simple end-of-life care tool
  1. K Forbes,
  2. J Gibbins,
  3. M E Burcombe,
  4. S J Bloor,
  5. C M Reid and
  6. R C McCoubrie
  1. Department of Palliative Medicine, Bristol Haematology and Oncology Centre, University Hospitals Bristol NHS Foundation Trust and University of Bristol, Bristol, UK


Introduction and aims The Department of Health's End of Life (EOL) strategy promotes integrated care pathways for the dying as a means of improving end-of-life care. We designed a pilot study to determine whether a simple EOL care tool could improve the dying experience in an acute hospital setting as perceived by carers.

Methods 40 patients received ‘usual’ end-of-life care and 30 patients had their end-of-life care directed by a simplified EOL care tool. Bereaved carers were contacted a month after the patient's death and asked to complete the validated VOICES questionnaire.

Results 20/40 questionnaires were returned by carers whose relatives received ‘usual’ care and 18/30 by carers whose relative received care directed by the tool. Although numbers are small and therefore changes are not statistically significant, improvements were seen in the responses regarding medical and nursing care (43.8% of relatives rated nursing care as excellent in the usual care group compared to 83% in the EOL tool group). Benefits were also seen for pain management (56.3% of carers perceived their relative had pain receiving usual care vs 28% in those receiving the care tool). More carers were present when their relative died following introduction of the tool (43.8% for usual care vs 67% for those receiving the care tool).

Conclusion Non-professional carers reported improvements in some aspects of end-of-life care following the introduction of a simple EOL care tool. This needs further testing in an adequately powered trial.

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