‘If you build it, they will come…to the wrong door: evaluating patient and caregiver-initiated ethics consultations via a patient portal’

Abstract

Objectives Memorial Sloan Kettering Cancer Center (MSK) sought to empower patients and caregivers to be more proactive in requesting ethics consultations. Methods Functionality was developed on MSK’s electronic patient portal that allowed patients and/or caregivers to request ethics consultations. The Ethics Consultation Service (ECS) responded to all requests, which were documented and analysed. Results Of the 74 requests made through the portal, only one fell under the purview of the ECS. The others were primarily requests for assistance with coordinating clinical care, hospital resources or frustrations with the hospital or clinical team. Discussion To better empower patients and caregivers to engage Ethics, healthcare organisations and ECSs must first provide them with accessible, understandable and iterative educational resources. Conclusion After 19.5 months, the ‘Request Ethics Consultation’ functionality on the patient portal was suspended. Developing resources on the role of Ethics for our patients and caregivers remains a priority. All data relevant to the study are included in the article or uploaded as supplementary information.