A technical solution to improving palliative and hospice care

This project sought to help palliative and hospice care practices improve patient care quality and operational efficiency by improving patient symptom status reporting and symptom management, reducing associated provider documentation workload, and enhancing patient–provider and provider–provider communication. We developed a user-friendly, electronic medical record-compatible, software prototype that allows typical clinical data and patient-reported outcomes (PRO) to be entered and stored. This data is immediately available during the clinical encounter with graphically depicted summaries for patient history and PRO assessments, a trending feature that links symptom behavior to interventions and the Edmonton Labeled Visual Information System.

A user-centered design approach allowed for iterative cycles of needs/usability feedback from providers and patients/caregivers to be incorporated into the development of our prototype’s technical structure and features. To determine the needs and initial usability of the project’s prototype, we interviewed eight providers and 18 patients/caregivers. Another usability test, consisting of patient/caregiver (n = 18) and provider (n = 9) interviews, assessed the functioning prototype’s design, usability, and usefulness.

Patients/caregivers (n = 18) reported that the prototype was usable (100%), it would facilitate patient–provider communication, shared decision making, and self-management (100%), and they would be willing to try the system and recommend it to their providers (100%). The providers (n = 9) felt that the prototype encouraged better use of patient assessments in decision making and patient care (100%) and improved identification of cause/temporal relationship between care events and outcomes (100%), monitoring of patient status (100%), communication in a multi-disciplinary team (100%), and operational efficiency and patient care quality (88.9%).

Quality of patient care and operational efficiency can be improved with an effective assessment, evaluation, and communication tool. This project developed an electronic version of such a tool. Future efforts will hone its usability and integration across multiple hospice/palliative care settings.