Ethics challenges of transition from paediatric to adult health care services for young adults with neurodevelopmental disabilities

Abstract

Transition from paediatric to adult health care services is fraught with challenges in multiple domains (1) including future health care use, educational and vocational trajectories, family and social life, self-fulfillment and quality of life. Significant gaps in the transition process exist (2–4) and involve both paediatric and adult health care systems. Important challenges include the lack of preparation for transition and transfer (5); adult health care providers’ lack of experience, training and expertise in traditionally paediatric diseases and conditions; loss of a longstanding, trusting relationship with the paediatrician; and suboptimal development of the adult health care physician-youth relationship and communication (5). Transition in health care is a process in which adolescents gradually prepare for and shift toward care in the adult system. In contrast, the current (albeit sparse) literature regarding perceptions of care during this period indicates that some individuals believe that they were suddenly removed from paediatric care and thrust into a foreign system for which they had not been adequately prepared (2,4). Transition challenges are likely to be greater among youth with neurodevelopmental disabilities (NDDs) because of the complexity of their health care needs and the stigma associated with physical and intellectual disability that may accompany these disorders (2,4–6). From an ethics perspective, a fundamental component of transition is whether individuals with NDDs feel respected, and how their values and autonomy are integrated, developed and supported within the transition (7). There is a paucity of literature regarding how transition programs respond to the complex needs of youth with NDDs and how they specifically respond to ethics concerns that arise during the provision of health care. Therefore, we convened a national workshop to deliberate some of the key ethics challenges for young adults with NDDs during the transition from paediatric to adult care. Our goals were: to identify and validate important ethics issues that arise during transition for youth with NDDs; to discuss how such ethics issues could be handled or addressed; to consider the barriers in implementing change; and to identify the knowledge needed to support informed practices. Building on the activities of NeuroDevNet, a Canadian Network of Centres of Excellence, we subsequently engaged in a collaborative writing process to consolidate the ideas and opinions expressed during the workshop.