Ethical challenges of integration across primary and secondary care: a qualitative and normative analysis.

BACKGROUND: This paper explores ethical concerns arising in healthcare integration. We argue that integration is necessary imperative for meeting contemporary and future healthcare challenges, a far stronger evidence base for the conditions of its effectiveness is required. In particular, given the increasing emphasis at the policy level for the entire healthcare infrastructure to become better integrated, our analysis of the ethical challenges that follow from the logic of integration itself is timely and important and has hitherto received insufficient attention. METHODS: We evaluated an educational intervention which aims to improve child health outcomes by making transitions between primary to secondary care more efficient, ensuring children and parents are better supported throughout. The programme provided skills for trainee paediatricians and general practitioners (GPs) in co-designing integrated clinical services. RESULTS: The key ethical challenges of integrated care that arose from a clinical perspective are: professional identity and autonomy in an integrated working environment; the concomitant extent of professional responsibility in such an environment; and the urgent need for more evidence to be produced on which strategies for integrating at scale can be based. CONCLUSIONS: From our analysis we suggest a tentative way forward, viewed from a normative position broadly situated at the intersection of deontology and care ethics. We adopt this position because the primary clinical ethical issues in the context of integrated care concern: how to ensure that all duties of care to individual patients are met in a newly orientated working environment where clinical responsibility may be ambiguous; and the need to orientate care around the patient by foregrounding their autonomous preferences and ensuring good patient clinician relationships in clinical decision-making.

Who Deserves Access to Care in Children's Hospitals?

An eighteen-year-old with sickle cell disease was admitted to the pediatric hematology service at his local children's hospital for management of an acute pain crisis, one of many such admissions. He had a good relationship with his primary hematologist and primary nurse, but with other health care providers, there was evident friction. Sometimes, he was simply rude, rolling over and pretending to sleep in response to questions about his symptoms. When frustrated or convinced that his pain was not being addressed appropriately, he was prone to yelling and cursing at his nurses. After members of the health care team complained, their supervisor decided to transfer the patient to an adult general medicine service. Reasons cited for the transition included the stressful work environment created by the patient's actions, his refusal to follow directives from staff (although he was generally adherent to treatment), and the hypothetical harm to other young patients who might witness his behavior. Was this a just outcome? Is it ever permissible to deny access to pediatric care to a patient whose best interests would be served by it? Can access be withheld for "bad" behavior, and can transfer of care be wielded as a punishment?

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

INTRODUCTION: As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare transitions, little is known about practices that result in positive outcomes or how ethical issues are addressed. The objective of this review is to identify and document the ethical principles that may be embedded in the vision of transitional care programmes and to map ethical issues encountered in transitional care as well as the strategies employed to recognise and address these ethical issues. METHOD AND ANALYSIS: We will document hidden and explicit ethical principles and issues from empirical studies on transition programmes for youth with neurodisabilities. An initial framework developed through a content extraction strategy will serve as a point of departure for data analysis and will be iteratively refined through our analytic process and with feedback from our stakeholders, including youth with neurodisabilities and their families. Findings will then be shared in different formats with health and social services professionals, healthcare decision and policymakers. DISSEMINATION: Scoping review results will be shared at key conferences and disseminated in peer-reviewed publications as well as plain language summaries with stakeholders and the general public. Opportunities will be sought to discuss this project and its preliminary findings with partners in the paediatric, adult healthcare and rehabilitation communities comprising young people with neurodisabilities, their families, clinicians, programme managers and researchers.

A systematic review of the literature on ethical aspects of transitional care between child- and adult-orientated health services.

BACKGROUND: Healthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services (CAMHS). Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care. The objective of this systematic review was therefore to systematically search for existing ethical literature on child- to adult-orientated health service transitions and to critically appraise and collate the literature, whether empirical or normative. METHODS: A wide range of bioethics, biomedical and legal databases, grey literature and bioethics journals were searched. Ancestral and forward searches of identified papers were undertaken. Key words related to transition, adolescence and young adulthood, ethics, law and health. The timeframe was January 2000 to at least March 2016. Titles, abstracts and, where necessary, full articles were screened and duplicates removed. All included articles were critically appraised and a narrative synthesis produced. RESULTS: Eighty two thousand four hundred eighty one titles were screened, from which 96 abstracts were checked. Forty seven full documents were scrutinised, leading to inclusion of two papers. Ancestral and forward searches yielded four further articles. In total, one commentary, three qualitative empirical studies and two clinical ethics papers were found. All focused on young people with complex care needs and disabilities. The three empirical papers had methodological flaws. The two ethical papers were written from a clinical ethics context rather than using a bioethical format. No literature identified specifically addressed the ethical challenges of balancing the delivery of transitional care to those who need it and the risk of pathologizing transient and self-limited distress and dysfunction, which may be normal during adolescence. CONCLUSIONS: There is very little research on ethical aspects of transitional care. Most existing studies come from services for young people with complex care needs and disabilities. There is much scope for improvement in the amount and quality of empirical research and ethical analysis in this area.

Assent as an ethical imperative in the treatment of ADHD.

The American Academy of Paediatrics endorses obtaining assent when prescribing medications for attention-deficit/hyperactivity disorder (ADHD) in older children whenever possible. Studies indicate the concept of assent may not be well understood by clinicians, possibly effecting effective and widespread implementation. We argue that though the concept of assent continues to evolve, it is critical in the context of patient-centred care, shared decision-making and in supporting minors' transition to adulthood. Based on the principle of respect for young persons, we argue that obtaining assent is an ethical imperative when prescribing medication for ADHD. We highlight the instrumental benefits of obtaining assent in the paediatric clinical encounter when prescribing medications for treatment of ADHD.

Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems.

Transition from pediatric to adult healthcare is a well-established challenge for individuals with neurodevelopmental disorders like cerebral palsy. With regard to ethics, some of the key aspects to explore include the following: if and how individuals feel respected during the transition process; if and how their values and preferences are developed and integrated within transition; and if and how young patients are prepared to participate in decision making (to be autonomous) within the transition. We carried out a qualitative study on 14 young adults with cerebral palsy. Some participants reported positive experiences. However, several tension points were identified, including before the transition (eg, transition envisaged with fear and apprehension); during the transition (eg, lack of cooperation or communication between providers in the pediatric and adult healthcare systems); and after the transition (eg, feelings of abandonment). We discuss the clinical influence and ethical significance of better capturing ethical values within the transition process and preparing young individuals to engage in discussions about their health and disease management.