A 10 year-old child requires an esophagogastroduodenoscopy (EGD). One of the child’s parents is requesting an unsedated esophagogastroduodenoscopy, citing their experiences in a different country and concerns about anesthetic medications. The child is assenting to the procedure. The patient previously had multiple sedated EGDs without complications. Concerns are raised by the anesthesia, GI, and operating room teams about the ethics and child safety of performing an unsedated EGD, given this is not the typical standard of care at the performing hospital. (...) In this paper we analyze prior literature and ethical principles, and explore whether unsedated EGD with appropriate monitoring is an ethically acceptable alternative to sedated EGD in this instance. (shrink)

This commentary discusses twelve pieces detailing patient and parent experiences using the electronic health record and portal system. Authored by a combination of adolescents and parents, the stories include views of individuals navigating both straightforward and very complex health journeys. Several common themes are identified and discussed in the context of portal development and the 21st Century Cures Act Final Rule. Authors routinely commented on the challenges of limited portal access once an adolescent turns twelve years of age. Adolescents and (...) parents discussed the importance of continued portal access for care management and coordination, as well as medical decision-making. The commentary highlights the challenges and opportunities in providing equitable portal access for adolescents and their families. (shrink)

Providing adolescents with access to their electronic health information presents both opportunities and challenges for children and families. In an effort to protect the medical privacy of adolescents, some state policies provide adolescents with access to their electronic health information based solely on age, and exclude parents from seeing this information unless adolescents permit it, with both positive and negative consequences. This commentary reviews the genesis of these policies and discusses perceived benefits, struggles, and frustrations through the lens of twelve (...) narratives written by a diverse array of patients and parents. These stories demonstrate the widely variable impact of such policies depending on family dynamics, child development, and medical complexity, among many factors. By intimately illuminating the experience of adolescents and parents, these powerful narratives suggest that a more nuanced, ethically-sensitive, and principled approach to policies regulating pediatric access to electronic health information can help provide that information in a less distressing, and more meaningfully empowering manner for patients and families. (shrink)

In this essay, we explore parent and adolescent commentaries on the complexities surrounding electronic health information (EHI) portals. Recent mandates for patient access to health records complicate the management of adolescent confidentiality and parental oversight. This issue particularly affects adolescents who, for public health reasons, have long been able to access some healthcare services without parental consent, yet still generally depend on parental authority for medical decision-making. The contributions to this issue of Narrative Inquiry in Bioethics highlight the challenges families (...) face with policies that grant adolescents exclusive control of all their health information, often without adequate preparation or support. These accounts reflect frustrations over abrupt access changes, systemic inconsistencies, and a lack of flexibility that fails to consider developmental variations among adolescents. We advocate for a more nuanced approach, balancing confidentiality with the need for parental guidance, and question whether EHI policies prioritize data protection over adolescent well-being. (shrink)

The concept of women-centered care during pregnancy and childbirth has received increasing attention. It addresses the question of the right degree of medical care during pregnancy. Consequently, it further opens a debate about the medicalization of pregnancy, which puts pregnancy into the realm of medicine and treats it as a medical problem. The experience of pregnancy and childbirth plays an essential role in the well-being of both the mother and the future child and is influenced by women’s autonomy and freedom (...) of choice. The aim of this study is to explore the perceptions and perspectives of women on the medicalization of pregnancy and childbirth. The study illuminates the women’s belief about whether pregnancy and childbirth should be a medicalized process to a greater or lesser degree, focusing on their preferred models of care and the implications for healthcare providers. In-depth interviews with 37 women of various backgrounds and experiences were conducted as part of a national qualitative study in Switzerland. A thematic analysis identified key themes and patterns. Two important aspects related to women’s autonomy emerged: the possibility of defining and positioning pregnancy and childbirth according to their own beliefs and life practices, and the freedom to choose the preferred model of care for their pregnancy. The findings suggest that healthcare providers should offer personalized models of care and support women’s specific needs, ensuring genuine choice and integrating authentic informed consent into the decision-making process. (shrink)

This commentary reflects on 12 narratives from parents and adolescent children on the topic of access to adolescent electronic health information (EHI). The storytellers highlight the value of EHI in improving care coordination, decision-making, and communication. However, access to adolescent EHI raises ethical dilemmas regarding autonomy, privacy, and parental involvement. While most parents and adolescents support some level of parental access, the narratives reveal nuanced views on how and when this access should be restricted. Barriers faced by parents of children (...) with complex healthcare needs are also discussed, alongside recommendations for improving EHI policies. These include reducing logistical burdens and fostering open communication between families and healthcare providers. (shrink)

This symposium includes twelve personal narratives from parents and adolescents reflecting on their experiences access electronic health information (EHI) through online patient portals. Four commentaries on these narratives are also included, authored by experts and scholars in communication, adolescent medicine, critical care, informatics, ethics, and law. The goal of this symposium is to call attention to the varying experiences, needs, hopes, and frustrations of parents and adolescents as they navigate adolescent EHI and healthcare.