Doctor-Parent Disagreement for Preterm Infants Born in the Grey Zone: Do Ethical Frameworks Help?

OBJECTIVE: To examine i) how ethical frameworks can be used in concrete cases of parent-doctors' disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in using these frameworks. DESIGN: We did a case analysis of a concrete case of parent-doctor disagreement in the grey zone using two ethical frameworks: the best interest standard and the zone of parental discretion. RESULTS: Both ethical frameworks entailed similar advantages and challenges. They have the potential 1) to facilitate decision-making because they follow a structured method; 2) to clarify the situation because all relevant ethical issues are explored; and 3) to facilitate reaching an agreement because all parties can explain their views. We identified three main challenges. First, how to objectively evaluate the risk of severe disability. Second, parents' interests should be considered but it is not clear to what extent. Third, this is a value-laden situation and different people have different values, meaning that the frameworks are at least partially subjective. CONCLUSIONS: These challenges do not mean that the ethical frameworks are faulty; rather, they reflect the complexity and the sensitivity of cases in the grey zone.

Hearing Parents' Voices: Parental Refusal of Cochlear Implants and the Zone of Parental Discretion.

It has been forty years since the first multi-channel cochlear implant was used in Australia. While heralded in the hearing world as one of the greatest inventions in modern medicine, not everyone reflects on this achievement with enthusiasm. For many people in the Deaf community, they see the cochlear implant as a tool that reinforces a social construct that pathologizes deafness and removes Deaf identity. In this paper, I set out the main arguments for and against cochlear implantation. While I conclude that, on balance, cochlear implants improve the well-being and broaden the open futures of deaf children, this does not justify mandating implants in circumstances where parents refuse them because this may compound unintended harms when society interferes in the parent-child relationship. For this reason, I argue that parental refusal of cochlear implantation falls within Gillam's concept of the zone of parental discretion.

Consent for rapid genomic sequencing for critically ill children: legal and ethical issues.

Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents' decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal frameworks on securing consent for genomic sequencing and how they apply to the specific context of RGS for critically ill children. We then use a tool from clinical ethics, the Zone of Parental Discretion, to explore two case studies and identify under which circumstances it might be appropriate for parental refusal of RGS to be overridden. We argue that RGS may be a context where, in addition to assessing the complexity of the test offered, it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required. We also suggest that there are some contexts where it may be ethically justified to perform RGS, even when it is actively against the wishes of the parents. More work is needed to examine exactly how 'time-sensitive' exceptions to current guidance on consent for genomic sequencing could be formulated and operationalised for RGS for critically ill-children.

Good enough? Parental decisions to use DIY looping technology to manage type 1 diabetes in children.

People are using innovative internet of things technologies to gain individualised management of their type 1 diabetes. The #WeAreNotWaiting movement supports them to build their own hybrid closed loop systems and access their real time blood sugar data via any web connected device. A small number of parents in Australia use such DIY looping systems to manage their child's type 1 diabetes, but these systems have not been approved by the Therapeutic Goods Administration in Australia, creating ethical dilemmas for clinicians about how to respond to the use of medical devices that are not registered on the Australian Register of Therapeutic Goods. This article considers whether the use of DIY looping is in the best interests of the child and, if not, whether intervention in parental decision making is justified to prevent harm to the child. It addresses the ongoing duty of healthcare professionals to provide care to children who are 'looping.' Reference is made to findings from a study, Personalised Closed Loop Systems for Childhood Diabetes, to illustrate stakeholders' perceptions of benefits and harms of DIY looping systems. I conclude that the decision of parents to use DIY looping technology could be considered to be in a child's best interests, broadly defined, and falls within the Zone of Parental Discretion, however healthcare practitioners who support parents may have professional concerns in doing so.