Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial

Abstract

Background:Despite increased attention for palliative care in dementia, recent studies found burdensome symptoms and unmet family caregiver needs in the last phase of life. Feedback is being used to improve the quality of palliative care, but we do not know how effective it is.Aim:To assess the effect of two feedback strategies on perceived quality of end-of-life care and comfort in dying nursing home residents with dementia.Methods:In a cluster-randomized controlled trial, the End-of-Life in Dementia–Satisfaction With Care and the End-of-Life in Dementia–Comfort Assessment in Dying scales were completed by bereaved family caregivers of residents with dementia of 18 Dutch nursing homes. Two feedback strategies, generic feedback with mean End-of-Life in Dementia-scores and feedback with individual (patient-specific) End-of-Life in Dementia-scores, were compared to no feedback provided. The intervention groups discussed End-of-Life in Dementia-ratings in team meetings and formulated actions to improve care. Multi-level analyses assessed effects.Results:A total of 668 families rated the End-of-Life in Dementia–instruments. Compared to no feedback, the generic strategy resulted in lower quality of end-of-life care in unadjusted (B = −1.65, confidence interval = −3.27; −0.21) and adjusted analyses (B = −2.41, confidence interval = −4.07; −0.76), while there was no effect on comfort. The patient-specific strategy did not affect the quality of end-of-life care, but it increased comfort in unadjusted analyses (only, B = 2.20, confidence interval = 0.15; 4.39; adjusted: B = 1.88, confidence interval = −0.34; 4.10).Conclusion:Neither feedback strategy improved end-of-life outcome. Perhaps, skills to translate the feedback into care improvement actions were insufficient. Feedback with favorable family ratings might even have triggered opposite effects. Trial number: NTR3942.

What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders

“…Other studies have suggested the introduction of new roles such as a mobile specialist palliative care team in dementia to provide expert advice and to support the usual care-giving team [ 28 ], or a ‘key worker’ to co-ordinate care [ 50 ]. A number of innovative options to improve EoLC in dementia have been tested, including dementia specific hospice care [ 67 ]; specialist dementia palliative care [ 68 ]; a specialist community-based multi-disciplinary team focused on facilitating home death [ 69 ]; an ‘integrated care leader’ [ 70 ]; audit/feedback systems [ 71 ], decision support tools [ 72 , 73 ] and a multifaceted intervention in long term care [ 74 ]. Such studies are, however, often small scale and lack rigorous cost effective evaluation to support wider implementation.…”

Quality improvement in long-term care settings: a scoping review of effective strategies used in care homes

“…Qualitative studies were the second largest group ( n = 19) [ 12 , 23 , 27 , 30 , 58 – 72 ], including the following methods: participatory action research ( n = 2) [ 12 , 63 ], observational ( n = 4) [ 62 , 73 – 75 ], interviews ( n = 1) [ 64 ], questionnaire ( n = 1) [ 69 ]. Eleven studies were interventional studies with a comparator arm, with quantitative outcome measures, including; 8 randomised controlled trials, all of which were cluster randomised at care home level [ 76 – 83 ]. Four were non-randomised controlled trials [ 84 – 87 ].…”

“…The review team did, however, identify weaknesses in study design and reporting. We found 35 studies either had deficiencies in methods [ 24 , 30 , 33 , 37 , 39 , 50 – 55 , 57 , 69 , 70 , 73 – 75 , 82 – 84 ] or were descriptive without process or outcome data [ 12 , 15 , 43 – 50 , 61 , 62 , 66 , 67 , 71 , 72 , 76 , 88 , 89 ]. Weaknesses included small sample size (for example, one care home sampled), no comparator or baseline, and number of participants not reported.…”

“…Other studies described components quality improvement, but without specifying a particular strategy. Components included education about clinical conditions or care ( n = 19) [ 28 , 31 , 33 , 36 , 38 , 43 , 46 , 49 , 52 , 55 , 58 , 60 , 65 , 67 – 69 , 83 , 86 , 94 ], care pathway development ( n = 12) [ 31 , 39 , 46 , 55 , 56 , 67 , 73 , 76 , 77 , 85 , 86 , 91 ], audit and feedback ( n = 14) [ 28 , 33 , 37 , 49 , 58 , 61 , 76 , 77 , 81 , 87 , 91 , 93 – 95 ], changes to multidisciplinary team working ( n = 11) [ 28 , 38 , 40 , 41 , 48 , 71 , 79 , 85 – 87 , 95 ], and enabling peers or champions to lead QI initiatives ( n = 10) [ 28 , 36 , 38 , 63 , 65 , 69 , 77 – 79 , 91 ].…”

“…9 of the 14 studies involved nursing staff, and 6 involved care assistants with several other occupational groups involved in many studies. Studies described resident-facing interventions which addressed clinical topics such as falls [ 37 , 44 , 77 ], end-of-life care [ 76 , 94 ], incontinence [ 81 ], depression [ 28 ], and medication [ 33 ]. Staff-level changes reported for audit and feedback included the following: increased self-rated staff competency [ 28 ], improved staff interactions and relationships with residents [ 27 ], improvement in quality indicators [ 49 ].…”