P116 My Life, My Death: The Voices of Palliative Patients, Informal Caregivers and Health Care Providers

Abstract

Within Canada, there is an aging population with numerous co-morbidities and palliative care needs who are increasingly accessing the palliative care services within the community. However anecdotal evidence and empirical research have shown that the experiences of these interactions between healthcare professionals and patients/caregivers are often distressing for all parties involved. Experience-Based Co-Design (EBCD) is a form of participatory action research that seeks to capture and understand how people actually experience a process or service. EBCD improves users’ experience by deliberately drawing out the subjective, personal feelings of service users, informal caregivers and health care providers to identify touchpoints, which are viewed as key moments that shape a person’s overall experience. In an exploratory quality improvement project, the aims were to identify the main barriers in the delivery of effective palliative care and areas of unmet needs in community palliative patients, as experienced by palliative patients, family members and health care providers. A standardized validated questionnaire was administered to 24 individuals, designed to help each individual reflect on how they felt at different states in their palliative journey or the journey of a patient they were caring for. Results have been compiled using a thematic analysis and focus on receiving a diagnosis, patient involvement, continuity of care, understanding what is happening, patient responsibility and empowerment. This presentation will present the results of this quality improvement project along with strategies for system improvements in palliative care.