Language Matters: How to Present Palliative Care to Patients, Clinicians, and Other Stakeholders (TH319)

Children receiving palliative care services require significant attention from medical professionals and community-based care providers in order to remain at home. It is challenging for healthcare providers to meet patients’ needs in a comprehensive and timely fashion. Patients living far from their healthcare providers face challenges in keeping up with clinic visits and often find it impossible when the child requires mechanical support devices such as ventilators and power chairs. Telehealth represents an innovative approach to consultation, evaluation of patients, and adjustment of treatment through televideo interactions between families and healthcare providers. Extending televideo into patients’ homes is feasible through the widespread availability of broadband internet connection and via broadband portable technology (4G/LTE technology). Those technologies permit high-quality, real-time evaluation of patients in the home. Televideo can enhance the level of care by eliminating lengthy and difficult commutes and allowing for more frequent, shorter check-ins to assess status, response to therapeutic changes, or symptom management. Studies of adult home care shows acceptance and value for the service. Patients report improved communications with the team and appreciate being able to participate in interdisciplinary meetings via televideo conferencing. Patient satisfaction is good and healthcare providers find the approach acceptable following an initial period of adjustment. Families indicate that seeing the entire team together, including the physician, reassures them and reduces calls to the team with questions. Telehealth offers hospital-based pediatric specialists and their teams the opportunity to connect with families without an office visit. Extending this model into the community offers pediatricians new opportunities and services to support families without an office visit. We will present our experience with pediatric telehospice in three distinct geographic regions around the country. HIPAA considerations will be discussed. Telehealth’s role in extending provider capacity and sustainability will be presented.