Discussing Future Goals and Legal Aspects of Health Care: Essential Steps in Transitioning Youth to Adult-Oriented Care

Abstract

Discussing realistic future goals with the adolescent alone and with family, and reviewing legal aspects of health care transition (HCT), are essential steps in the transition from pediatric to adult-oriented care. Secondary analysis of datasets from 2 studies related to HCT assessed differences in provider practice for youth with and without special health care needs (SHCNs). Across both datasets, between 57% and 68.6% of providers reported some discussion of future goals with adolescent or with family. However, only 28.6% to 31% of providers reported discussing future goals with youth with SHCNs alone. It was rare for providers to report discussing legal aspects of HCT with any youth. Findings identify a gap in discussing future goals and legal aspects of HCT, as part of routine care for adolescents. Additional research to understand barriers and improve likelihood of these steps within HCT is needed.

Graduation Day: Healthcare Transition From Pediatric to Adult

“…As a result, at some point they must transfer medical and nutrition care from pediatric providers to adult providers. Before this transfer of care occurs, the pediatric providers need to begin the HCT process …”

“…Parents need to be prepared and the patients need to be ready to take this responsibility. It is important that the pediatric providers begin modeling the relationship of the adult providers and interact with the emerging adult independent of his parents . If a patient is not developmentally appropriate to take self‐responsibility for his or her healthcare, the parent must go through the legal system to maintain decision‐making rights.…”

“…Before this transfer of care occurs, the pediatric providers need to begin the HCT process. 35 Various transition models are described in the literature. Each one has the same goal of successful HCT providing adequate support and guidance to the emerging adult with SHCN.…”

“…Parents and caregivers need to be aware that to maintain the surrogate decision‐making authority granted as a parent/guardian, they must set the legal framework to become surrogate decision makers in the adult healthcare system. This position is most commonly referred to as either a durable power of attorney or a healthcare proxy . In a collaborative team between the provider and caregiver this transition would be investigated well before the patient “ages out” of pediatrics and families find themselves unable to make important medical decisions for their loved ones.…”

“…This position is most commonly referred to as either a durable power of attorney or a healthcare proxy. 31,35 In a collaborative team between the provider and caregiver this transition would be investigated well before the patient "ages out" of pediatrics and families find themselves unable to make important medical decisions for their loved ones.…”