Introduction Although focus is placed on achieving patient preference to die at home, ensuring the provision of good quality care and family support is equally important.
Aim(s) and method(s) To assess quality of care and family support, as perceived by bereaved relatives, using ‘Care Of the Dying Evaluation’ (CODE), a 40-item validated post-bereavement questionnaire based on key components of best practice for care of the dying. 291 next-of-kin (NOK) to adult patients, who died an ‘expected’ death at home in Northwest England from advanced incurable illness between July 2011 and December 2012, were identified using the Preferred Place of Care database. All NOK were invited to complete CODE at least two months following the bereavement, with a reminder sent 4 weeks later.
Results 72 NOK (24.7%) returned the completed CODE questionnaire. Participants were mainly female (n=47, 65.3%), a spouse or partner (n=40, 55.6%) and aged 50 years or above (n=57, 79.1%). Most deceased patients had advanced cancer (n=57, 79.2%). Overall, patient care was perceived as good, with 65 NOK (90.3%) reporting the patient was treated with dignity and respect ‘always’ or ‘most of the time’. Only 55 (76.4%) NOK, however, reported they were adequately supported. Unmet emotional support (n=20, 27.7% reporting this was ‘fair’ or ‘poor’) and information needs (n=24, 33.3% reporting discussions about fluids would have been helpful) were identified.
Conclusion(s) Despite limitations in sample size and participant representativeness, more proactive means to support families and meet communication needs are required to improve the experience for patients and families who wish to die at home.
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