Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle

Bristowe, Katherine; Carey, Ivana; Hopper, Adrian; Shouls, Susanna; Prentice, Wendy; Caulkin, Ruth; Higginson, Irene J; Koffman, Jonathan

doi:10.1177/0269216315578990

Cited by 39 publications

(62 citation statements)

References 32 publications

(35 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…We conducted the first comparative observational mixed-methods study of the AMBER care bundle and identified a mixed picture. 48 First, the AMBER care bundle was associated with increased frequency of discussions about prognosis between clinicians and patients, and higher awareness of their prognosis by patients. Second, we observed that those patients who died in locations other than hospitals had shorter lengths of stay than those who received usual care.…”

Section: The Management Of Clinical Uncertainty In Hospital Settingsmentioning

confidence: 99%

The AMBER care bundle for hospital inpatients with uncertain recovery nearing the end of life: the ImproveCare feasibility cluster RCT

Koffman

Yorganci

Murtagh

et al. 2019

Health Technol Assess

Self Cite

View full text Add to dashboard Cite

Background Patients admitted to hospital with a terminal illness and uncertain recovery often receive inconsistent care and do not have the opportunity to die in their preferred place of death. Previous end-of-life care packages, such as the Liverpool Care Pathway for the Dying Patient, have sometimes been badly implemented. The AMBER (Assessment; Management; Best practice; Engagement; Recovery uncertain) care bundle was developed to remedy this. It has not been evaluated in a randomised trial, but a definitive trial would face many hurdles. Objective To optimise the design of and determine the feasibility of a pragmatic, multicentre, cluster randomised controlled trial of the AMBER care bundle compared with best standard care. Design A feasibility cluster randomised controlled trial including semistructured interviews with patients and relatives, focus groups with health-care professionals, non-participant observations of multidisciplinary team meetings, a standard care survey, heat maps and case note reviews. Retrospective data were collected from the family or close friends of deceased patients via a bereavement survey. Setting Four general medical wards at district general hospitals in England. Participants There were 65 participants (control, n = 36; intervention, n = 29). There were 24 interviews, four focus groups, 15 non-participant meeting observations, six case note reviews and three heat maps, and 15 of out 23 bereavement, standard care surveys were completed. Intervention The AMBER care bundle is implemented by a nurse facilitator. It includes the development and documentation of a medical plan, consideration of outcomes, resuscitation and escalation status and daily plan revisiting. The AMBER care bundle encourages staff, patients and families to talk openly about their preferences and priorities should the worst happen. Main outcome measures Two ‘candidate’ primary outcomes were selected to be evaluated for a future definitive trial: Integrated Palliative care Outcome Scale patient/family anxiety and communication subscale and ‘howRwe’. The secondary outcome measures were Integrated Palliative care Outcome Scale symptoms, Australian-modified Karnofsky Performance Status scale, EuroQol-5 Dimensions, five-level version, Client Service Receipt Inventory, recruitment rate, intervention fidelity and intervention acceptability. Results Data were collected for 65 patients. This trial was not powered to measure clinical effectiveness, but variance and changes observed in the Integrated Palliative care Outcome Scale subscale indicated that this measure would probably detect differences within a definitive trial. It was feasible to collect data on health, social and informal care service use and on quality of life at two time points. The AMBER care bundle was broadly acceptable to all stakeholders and was delivered as planned. The emphasis on ‘clinical uncertainty’ prompted health-care professional awareness of often-overlooked patients. Reviewing patients’ AMBER care bundle status was integrated into routine practice. Refinements included simplifying the inclusion criteria and improving health-care professional communication training. Improvements to trial procedures included extending the time devoted to recruitment and simplifying consent procedures. There was also a recommendation to reduce data collected from patients and relatives to minimise burden. Limitations The recruitment rate was lower than anticipated. The inclusion criteria for the trial were difficult to interpret. Information sheets and consent procedures were too detailed and lengthy for the target population. Health-care professionals’ enthusiasm and specialty were not considered while picking trial wards. Participant recruitment took place later during hospital admission and the majority of participants were lost to follow-up because they had been discharged. Those who participated may have different characteristics from those who did not. Conclusions This feasibility trial has demonstrated that an evaluation of the AMBER care bundle among an acutely unwell patient population, although technically possible, is not practical or feasible. The intervention requires optimisation. Trial registration Current Controlled Trials ISRCTN36040085. National Institute for Health Research (NIHR) Portfolio registration number 32682. Funding This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 55. See the NIHR Journals Library website for further project information.

show abstract

Section: The Management Of Clinical Uncertainty In Hospital Settingsmentioning

confidence: 99%

The AMBER care bundle for hospital inpatients with uncertain recovery nearing the end of life: the ImproveCare feasibility cluster RCT

Koffman

Yorganci

Murtagh

et al. 2019

Health Technol Assess

Self Cite

View full text Add to dashboard Cite

show abstract

“…The care bundle, which includes roles for the entire medical team emphasises clear communication and planning. This approach is promising and recent research suggests that there may be some benefits; awareness of prognosis appeared to be higher among patients supported by the AMBER care bundle 35. However, a full evaluation of the efficacy of this approach is needed.…”

Section: Addressing Uncertainty: Current Strategiesmentioning

confidence: 99%

Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care

Etkind

Koffman

2016

Postgraduate Medical Journal

View full text Add to dashboard Cite

Patients with any major illness can expect to experience uncertainty about the nature of their illness, its treatment and their prognosis. Prognostic uncertainty is a particular source of patient distress among those living with life-limiting disease. Uncertainty also affects professionals and it has been argued that the level of professional tolerance of uncertainty can affect levels of investigation as well as healthcare resource use. We know that the way in which uncertainty is recognised, managed and communicated can have important impacts on patients' treatment and quality of life. Current approaches to uncertainty in life-limiting illness include the use of care bundles and approaches that focus on communication and education. The experience in communicating in difficult situations that specialist palliative care professionals can provide may also be of benefit for patients with life-limiting illness in the context of uncertainty. While there are a number of promising approaches to uncertainty, as yet few interventions targeted at recognising and addressing uncertainty have been fully evaluated and further research is needed in this area.

show abstract

“…Critical illness, related or unrelated to underlying disease pathology, creates further uncertainty for clinicians because there are unknown elements in disease processes and prognostication (Bristowe et al., ; Pattison et al., ). Previous ethnographic work in the critical care unit suggests that there are debilitating emotional consequences for those involved in decisions (Seymour, ), especially where conflict arises (Higginson et al., ).…”

Section: Introductionmentioning

confidence: 99%

“…This is evidenced by a large review of 1.2 million admissions where the mean number of admissions in the last 12 months of life averaged 2.28, leading to 30.05 bed days occupied (Bardsley, Georghiou, Spence, & Billings, 2016). Critical illness, related or unrelated to underlying disease pathology, creates further uncertainty for clinicians because there are unknown elements in disease processes and prognostication (Bristowe et al, 2015;Pattison et al, 2015). Previous ethnographic work in the critical care unit suggests that there are debilitating emotional consequences for those involved in decisions (Seymour, 1999), especially where conflict arises (Higginson et al, 2016).…”

mentioning

confidence: 99%

Managing clinical uncertainty: An ethnographic study of the impact of critical care outreach on end‐of‐life transitions in ward‐based critically ill patients with a life‐limiting illness

Pattison

Mclellan

Roskelly

et al. 2018

Journal of Clinical Nursing

View full text Add to dashboard Cite

show abstract

Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle

Cited by 39 publications

References 32 publications

The AMBER care bundle for hospital inpatients with uncertain recovery nearing the end of life: the ImproveCare feasibility cluster RCT

The AMBER care bundle for hospital inpatients with uncertain recovery nearing the end of life: the ImproveCare feasibility cluster RCT

Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care

Managing clinical uncertainty: An ethnographic study of the impact of critical care outreach on end‐of‐life transitions in ward‐based critically ill patients with a life‐limiting illness

Contact Info

Product

Resources

About