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

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. Modern bioethics, and the subfield of neuroethics, which is related to our topic, can be loosely described as an interdisciplinary field committed to generating in-depth understandings of the context in which ethics questions and dilemmas emerge, and providing responses that respect general ethics principles (eg, autonomy, beneficence, justice). An ethical ‘lens’ on transition focuses on understanding the values and preferences of stakeholders, and brings attention to how general ethics principles are challenged or promoted in transition. Reviewing the small set of literature focusing on ethics issues during transition (2,7) or discussing transition programs in the context of NDDs (2,4–6,8) revealed four ethics considerations, for which questions were developed to guide discussion and formulate reflection (Table 1). Several important barriers for implementing change to transitional care in the Canadian context are identified in Box 1. Ethics considerations for transition of youth with neurodevelopmental disorders (NDDs) based on the literature ASD Autism spectrum disorders; CP Cerebral palsy; FASD Fetal alcohol spectrum disorders Ethics considerations for transition of youth with neurodevelopmental disorders (NDDs) based on the literature ASD Autism spectrum disorders; CP Cerebral palsy; FASD Fetal alcohol spectrum disorders Most transition literature implicitly suggests that the development of autonomy is a fundamental goal of transitional care (7,9–11). In the context of NDDs, this goal is valuable; however, it should be approached with caution (see Table 2 for practical considerations). It is widely recognized by professional societies that children and, especially, adolescents should be engaged in decisions regarding their health in age- and developmentally appropriate manners (12,13). A first issue, however, is that some individuals may endorse other models of autonomy (eg, shared authority such as making decisions with their parents) (11). A second issue is that some individuals with NDDs may value achievements not aligned strictly with the goal of independence. In this case, independence, as a life goal, may be more valued by others (eg, health care providers, family, society) than by youth themselves and their families. More generally, an overly normative (top-down) approach to transition could be deleterious and create arbitrary standards (eg, ‘good’ parenting skills, ‘good’ demonstration of development and attainment of autonomy, ‘responsible adolescent’, ‘good’ and ‘inadequate’ transition) and lead to feelings of inadequacy. Accordingly, personalized transition shaped around the expectations, wishes and narratives of individuals – within their family unit – may be a more comprehensive and holistic goal, and may better reflect the transformative aspects of adolescence. Moreover, to transcend an idealized goal of independence, there must be a call for a change in the evolution of a desired ‘end point’ in ethics in transition programs to a more personalized set of goals (Figure 1). Practical considerations for different stakeholders regarding autonomy in transition* We acknowledge that some of the recommendations formulated pertain to more than one group of stakeholders (eg, suggestions for allied health care providers could be relevant to some physicians); however, we tried to identify the stakeholders who would be primarily concerned by these suggestions. Recommendations may be more appropriate for youth where the attainment of a certain level of independence is possible. The focus on stakeholders should not obfuscate the need for structural and/or systemic change. NDD Neurodevelopmental disability Practical considerations for different stakeholders regarding autonomy in transition* We acknowledge that some of the recommendations formulated pertain to more than one group of stakeholders (eg, suggestions for allied health care providers could be relevant to some physicians); however, we tried to identify the stakeholders who would be primarily concerned by these suggestions. Recommendations may be more appropriate for youth where the attainment of a certain level of independence is possible. The focus on stakeholders should not obfuscate the need for structural and/or systemic change. NDD Neurodevelopmental disability Evolving paradigms of ethics in transitional care Lack of access to primary care physicians after 16 to18 years of age Lack of coordination and partnership between adult primary health care and paediatric care Age as the definitive marker for transfer Less knowledge or interest regarding NDDs in the adult health care system Lack of resources for a specific group of individuals (young adults with NDDs) in adult care Lack of simple, cost-effective, user-friendly tools or approaches for transitional care General complexity of medical needs of many individuals with NDDs Termination of some government developmental services and assistance programs at time of transfer General complexity of the health care and social service systems Several studies report problematic attitudes and behaviours in the ways health care providers communicate and interact with youth with NDDs (10), and suggest that health care providers, health services and transition programs may respond inadequately to the needs of these individuals (2,4–6,8). Discussions highlighted the constructive role health care providers should play in the transition process and the potential for harm and frustration if this role is not fulfilled. However, the negative consequences of suboptimal transition, although present, are insufficiently researched and discussed in the public domain. The paradigm of harm reduction appears to be inadequate in meeting the goals of transitional care completely; however, elements of this concept address important detriments of ineffective transitional care in terms of cost and wasted opportunities for young individuals with NDDs. Nonetheless, this paradigm overlooks the positive contributions that individuals with disabilities make to society that cannot (and should not) be defined in economic terms (ie, the paradigm reduces the intrinsic value of the individual and, thus, of transition programs, to goals of productivity and economic gain). Moreover, if these youth and their families are not given the support to transition into adulthood, the positive contribution brought by the diversity of individuals with disabilities to society may be lost. Because ethics is often an implicit aspect of transition programs, it is often underdiscussed as such. The development of ethics in transition programs will likely assume different shapes and forms, including a better understanding of the needs, perspectives and expectations of different groups as well as individuals and families (eg, through innovative qualitative research). This may help transition programs become more responsive to the values and preferences of different stakeholders and integrate a personalized approach based on the definitions of ‘good transitions’ by those concerned. At the same time, we can avoid perpetuating a model of transition that narrowly supports a medical model of disability (eg, one that emphasizes the deficits of the individual that need to be remediated before transition can occur). Consideration of the social and contextual aspects that can diminish or compound disability should also be one of the critical targets of transition programs. In this respect, upholding a firm age for transition, a common practice (in contrast to a developmentally appropriate time for transition), introduces significant challenges when independence is potentially forced on youth, when the adult system is unable to cope with unprepared patients and when parents are inappropriately left out of shared decision making. Developing policies regarding the appropriate time for transition is one example in which ethics challenges (taken as a subset of social and contextual aspects of disability) could be diminished and responses to these challenges modulated. There is unavoidable tension between what is good for the individual and what is good for the larger population. Transition is a common challenge for all adolescents. However, heterogeneity among NDDs (and their complex progressions compared with other chronic conditions) makes it difficult to establish best practices that are applicable to all. Despite this, it is unrealistic or infeasible to develop specific programs for each condition in health care institutions. Therefore, middle-ground approaches (eg, core transitional care supplemented by tailored modules for different types of disabilities, creating an overall personalized approach) were identified as the most likely to stand the test of reality. A range of approaches and combinations of strategies need to be explored to examine how best to respond to the needs of youth with NDDs. There are evident tensions in achieving balance between approaches that focus on systems as opposed to individuals, or that are generalized as opposed to specialized. There is also related tension in defining transition outcomes based on a business model (ie, cost savings of good transition) as opposed to the individual’s quality of life and welfare (ie, a meaningful transition for the individual). Further research should evaluate these aspects of transition programs with an ethical lens. Health care transition is a crucial process in the lives of youth with NDDs and their parents. There are significant gaps in the provision of structured transition processes for youth with NDDs, and the ethics challenges that may arise during transition are poorly understood. We hope that the present article highlights key reflections that will be useful to both practitioners and scholars (Box 2), and that further practical policy and scientific developments will bridge these gaps. Respect stakeholders and their values and preferences Recognize knowledge and experiences of youth Revisit age as a trigger for transfer Refine communication techniques and develop tools for capturing clinical needs, communication styles and preferences of youth Recognize a broad range of paradigms of disability reflected in transition models Identify how general ethics principles are challenged or promoted in transition and by specific approaches to transition Increase awareness of the richness of the principle of respecting autonomy, beyond an ideal of independence Connect health care transition with the broader goals and needs of young adults growing up with a disability Consider the balance between individual-centred goals and family- or society-centred goals in transition Reflect on broadly defined end goals of transition programs, including the supporting role of primary care providers in bridging gaps Explore the advocacy role of health care providers in the face of suboptimal transition programs and practices FUNDING AND ACKNOWLEDGEMENTS: Funding for the workshop was provided by the Institut de recherches cliniques de Montréal, NeuroDevNet Central and its Demonstration Projects (Autism Spectrum Disorder, Fetal Alcohol Spectrum Disorder and Cerebral Palsy), and The Sinneave Family Foundation. Writing of this manuscript was made possible by funding from a New Investigator Award (ER) from the Canadian Institutes of Health Research and a Career Award of the Fonds de recherche du Québec – Santé (ER). The authors thank the following workshop participants: James Reynolds (Queen’s University, Kingston); Lucy Lach (McGill University, Montreal); Radha MacCulloch (McGill University, Montreal); and Lynn Dagenais (McGill University, Montreal). The authors also thank John Aspler for editorial assistance in the preparation of the manuscript.

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