Prognosis in dysphagic patients who are eating and drinking with acknowledged risk: results from the evaluation of the FORWARD project.

BACKGROUND: patients with a permanently unsafe swallow may choose to eat and drink with acknowledged risk (EDAR). Informed decision-making and advance care planning depend on prognosis, but no data have yet been published on outcomes after EDAR decisions. METHODS: the study was undertaken in 555 hospital inpatients' (mean [SD] age: 83 {12}) EDAR supported by the Feeding via the Oral Route with Acknowledged Risk of Deterioration care bundle between January 2015 and November 2019. Data were collected prospectively on clinical characteristics, dates of discharge, readmissions and death (where relevant). Kaplan-Meier survival functions and readmission risks per surviving patient per month were calculated. RESULTS: mortality is 56% in the first 3 months after discharge but then mortality risk sharply decreases. The 3-month survival in EDAR patients was more likely in those <75 years of age, those with Parkinson's disease or a structural oral lesion as the dominating cause of dysphagia and those with mental capacity regarding EDAR decisions. Readmission risk in the 3 months post-discharge is 21% but reduces to 12% thereafter (P < 0.001). Thirty-eight percent of readmissions are secondary to EDAR-linked conditions such as chest infections and reduced oral intake. CONCLUSION: there is a high mortality and readmission risk after an EDAR decision but much of this is frontloaded into the first 3 months, with a relatively favourable prognosis thereafter. This may be an appropriate time-point to reassess the plan for eating and drinking such that it continues to reflect the most appropriate balance of risk, comfort and nutrition.

Approaches to Eating and Drinking with Acknowledged Risk: A Systematic Review.

BACKGROUND: Patients with dysphagia may consider eating and drinking with acknowledged risk (EDAR) instead of artificial hydration/nutrition. Timely consideration of complex issues is required including dysphagia reversibility, risk/benefit discussions, patient wishes, their capacity and best interests. OBJECTIVE: This study aimed to establish if EDAR protocols improve care through a systematic literature review with a secondary aim to explore important factors for the development and success of a protocol. METHODS: PUBMED, MEDLINE, CINAHL and EMBASE were searched for English language articles to May 2019 with terms related to EDAR, dysphagia and end of life. Articles were agreed for inclusion by three independent reviewers. Levels of evidence were assessed using the modified Sackett scale. Study themes were identified and discussed. RESULTS: 8 articles met the inclusion criteria with varied methodology. The highest level of evidence was III (cohort study). Most were limited to patients with dementia, stroke, in older person's wards or residential homes. Three articles described a systematic approach to EDAR for in-patients, reporting reductions in days nil-by-mouth until feeding plans are made and improvements in documentation of decision making, nutrition plans and capacity assessment. Five papers explored the views and knowledge of staff, patients and families/carers relating to EDAR and complex feeding decisions. Formal meta-analysis was not possible due to the level and mix of methodology. CONCLUSION: There is a paucity of evidence to determine if EDAR protocols improve care. However, support is emerging for a coordinated approach to managing EDAR. Findings suggest having a protocol is not enough; training and communication within teams is essential, together with incorporating feedback from patients and carers, and this justifies further work.