Ethical considerations in transition

Abstract

The objective of this paper is to explore ethical issues in the provision of transitional care. Using five case studies a number of ethical issues in transition and transition care are discussed. These issues include: 1) preserving, promoting and ensuring dignity and respect for patients; 2) fostering and supporting the trusting relationships that young people and their parents have for pediatric providers to their new adult providers by using a graduated system of transfer; 3) recognizing graduated capacity; 4) promoting autonomy and self-management; 5) duties of beneficence and non-maleficence; 6) truthtelling; 7) duty to provide developmental^ appropriate care; and 8) duty of pediatric providers to advocate for transitioning patients in the adult system. Attention to the ethical issues surrounding these complex cases has the potential to positively influence a successful transition to adult-oriented health care.

Research needs and priorities for transition and employment in autism: Considerations reflected in a “Special Interest Group” at the International Meeting for Autism Research

“…As youth age toward adulthood, it was suggested that parents consider incrementally removing, as safe to do so, the “scaffolding” that may nurture earlier dependence on parents. The development of an optimal level of scaffolding was described to be a foundational goal of transitional support [Kaufman, Horriks, & Kaufman, ; Lariviere‐Bastien & Racine, ; Pinzon & Harvey, ; Racine, Lariviere‐Bastien, Bell, Majnemer, & Shevell, ). Yet there was a simultaneous deeply expressed respect for families and their profoundly important support role in the ongoing life of many adults with ASD.…”

Contextualized Autonomy in Transitional Care for Youth With Neurologic Conditions: The Role of the Pediatric Neurologist

“…The recognition of the autonomy of these youth as a staged process may involve discussions with parents about the graduated transfer of responsibility from parent to youth. 39,40,42 This imperative points to the need for sensitivity on the part of the pediatric neurologist and team to empower both Liz and her parents through the provision of information and coaching 28,38 in a way that respects youth's right to self-determination in a context where practice from the perspective of youth's best interest 40,43 prevails. This infers the duty of the pediatric neurologist to be a partner in assisting youth to develop skills to manage self-care, to self-advocate 38,40 about matters that may influence their health, well-being, and quality of life.…”

“…Being poised to ask Liz about how she imagines her transition to university and independent living will be and demonstrating sincere curiosity about what she would like to do to arrive at those goals and offering supports are ways that will show Liz that her goals are acknowledged and supported. Such practices serve to preserve, promote, and ensure dignity and respect for youth's deliberated choices 38,42 and should be at the forefront of transition care.…”

Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities

“…There is an increased interest in and necessity to evaluate whether transition programmes ensure a seamless transfer from paediatric to adult healthcare systems. 5 8 9 For example, little is known about how professionals working in transitional care programmes seek to understand the values of young adults and their caregivers, place importance on understanding their interdependence and ensure that their needs are integrated, developed and supported, in order to facilitate a smooth transition, 10 or whether and how the assessment of patient values and preferences are integrated in healthcare transition programmes. 7 The importance of recognising ethical issues that emerge in the clinical care of adolescents and young adults with neurodisabilities has been identified as an imperative to achieve purposeful practice goals such as the development of autonomy and the preparation of youth and their caregivers for decision-making.…”