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.