Quality assurance for care of the dying: engaging with clinical services to facilitate a regional cross-sectional survey of bereaved relatives’ views

Abstract

BackgroundGlobally, having the ‘patient and /or family voice’ engaged when measuring quality of care for the dying is fundamentally important. This is particularly pertinent within the United Kingdom, where changes to national guidance about care provided to dying patients has heightened the importance of quality assurance and user-feedback. Our main aim was to engage with clinical services (hospice, hospital and community settings) within a specific English region and conduct a bereaved relatives’ cross-sectional survey about quality of care. Our secondary aim was to explore levers and barriers to project participation as perceived by organisational representatives.MethodsEach organisation identified a consecutive sample of next-of-kin to adult patients who died between 1st September and 30th November 2014. Those who had an unexpected death or were involved in a formal complaint were excluded. The ‘Care Of the Dying Evaluation’ (CODE™) questionnaire was posted out three months following the bereavement. One-to-one interviews were undertaken with a purposive sample of organisational representatives to explore experiences about project participation.ResultsOf the 30 invited organisations, 18 were able to participate comprising: 7 hospitals, 7 hospices and 4 community settings. There were 1774 deaths which met the inclusion criteria but 460 (26%) were excluded due to inaccurate next-of-kin details. Subsequently, 1283 CODE™ questionnaires were sent out, with 354 completed (27% response rate). Overall, most participants perceived good quality of care. A notable minority reported poor care for symptom control and communication especially within the hospital. Nine interviews were conducted - levers to project participation included the ‘significance of user-feedback and the opportunity to use results in a meaningful way’; the main barrier was related to ‘concern about causing distress to bereaved relatives’.ConclusionsOverall, being able to engage with 18 (60%) organisations within the region and conduct the bereaved relatives’ survey showed success of this initiative and was supported by interview findings. The potential to be able to benchmark user-feedback against other organisations was thought to help focus on areas to develop services. This type of quality assurance project could form a template model and be replicated on a national and international level.

The quality of care of the dying in hospital—next-of-kin perspectives

“…Quality is estimated to be high by the vast majority0 of next-of-kin with few negative exceptions comparable with the results of the original CODE validation study in the UK [ 27 ] and others [ 28 ]. Subsample comparisons showed higher total scores for PCU patients, even considering other variables.…”

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives’ experiences during the COVID-19 pandemic

“…Indeed, poorer perceptions were expressed about dignity and respect, family support and communication, for example, what to expect when an individual is dying, compared with pre-COVID-19 studies which have used the CODE™ questionnaire. 15,16 Results highlight the importance of proactive, timely and informative communication between health and social care professionals and family members, in keeping with previous recommendations. 17 This requires prioritisation, adequate training, preparation and protected time for regular patient updates.…”

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries

“…In particular, the issue of hydration was recognized as an unmet need and is consistent with previous postbereavement studies [ 40 , 41 ]. Hydration in the last days of life is an emotive and challenging area, with very limited evidence about benefits and burdens [ 42 , 43 ].…”