Medical errors are considered to be preventable medical events. Either a patient is harmed because of what was done or what was not done but should have been done to prevent an adverse outcome. Errors have been shown to occur within the general paediatric population and a recent study found that >9% of children admitted to hospitals in Canada experience harm caused by health care management, which can lead to prolonged hospital stay, readmission, disability and, sometimes, death.
Disclosure of medical errors is a well-established legal obligation grounded in the common law doctrine of informed consent. Studies involving adult patients show that patients want to be informed of medical errors and that an apology reassures the patient that he/she is safe, is not at fault and that the physician is committed to preventing future harm.
Disclosure of medical errors in paediatric populations is more complex than in adult care because it involves not only parents but sometimes also the child. Here, the disclosure process can be affected by a composite of variables: the child’s desire to know; cognitive and emotional capacities; parental perspectives on disclosure; the roles of health care providers; disparate policies across institutions, organizations and regions; and the degree of risk or harm associated with the event. Presently, regulatory bodies and patient safety organizations provide limited guidelines for paediatric health care providers, and there is no consistent protocol or approach for the disclosure of medical errors for children and youth.
Purpose:
To present findings from three studies within a program of research on pediatric disclosure of medical errors.
Phase 1 - to share themes from a systematic review of the literature on research of how children perceive medical errors and disclosure processes.
Phase 2 – to highlight views of children, parents and healthcare providers on pediatric disclosure of medical errors.
Phase 3 - to further examine hospitalized children and adolescents perspectives on medical errors and preferences for disclosure
Methods:
Phase 1 -The systematic review provided a synthesis of child, parent and physician perspectives, and of health care provider practices in the disclosing of medical errors. To provide additional context, we also appraised relevant policies that often guide the process of disclosure in paediatrics.
Phase 2 - Building on a systematic review of the literature, we conducted a series of focus groups with key pediatric stakeholders where perspectives were sought on the disclosure of medical errors. Focus groups were conducted with three stakeholder groups. Participants included 14 child members of the Children’s Council from a large pediatric hospital, 5 parents of children with chronic medical conditions, and 27 health-care providers including physicians, nurses, and patient safety professionals.
Phase 3 - With little to no research that examines perspectives of pediatric patients we conducted 20 individual interviews with hospitalized children and teens using qualitative methods suitable for exploratory studies with children.
Results:
Phase 1 - Despite the prevalence of medical errors in paediatric settings, little research exists regarding the process of disclosing errors to patients and their families, such as how to determine whether to disclose, who should be present, when disclosure should happen and how physicians should best proceed in these situations. There exists a lack of research examining children’s own perspectives regarding the disclosure of medical errors, despite evidence that paediatric patients have unique communication preferences for receiving other types of medical information and, in many cases, are able to participate in complex health-related discussions.
Phase 2 - Children acknowledged various disclosure approaches while citing the importance of children’s right to know about errors. Parents generally identified the need for full disclosure and the uncovering of hidden errors. Health-care providers were concerned about the process of disclosure and whether it always served the best interest of the child or family.
Phase 3 – Children and youth introduced the notion of errors by using terms like mistakes and ‘when things go wrong’. They described the need to take care of the family, to be sensitive to child differences and needs during the disclosure process and finally the person responsible for error should disclose.
Implications:
There is a pressing need for the development of policies and practices that inform and address the complexities of disclosing medical errors in pediatrics. We must begin by examining children’s understanding of medical errors and what they expect from their health care providers when errors occur. Future research, therefore, should examine children’s perspectives as an essential starting point for the development of policy and the identification of ethical and best practices. This critical vantage point, in combination with parent and physician perspectives and experiences, is critical to advancing our understanding of error disclosure in pediatric settings
While some health-care providers addressed the need for more clarity in pediatric policies, most stakeholders agreed that a case-by-case approach was necessary for supporting variations in how medical errors are disclosed.
Children saw a role for themselves in patient safety and the ability to engage in discussions if something doesn’t feel right.