The Meaning Given to Bioethics as a Source of Support by Physicians Who Care for Children Who Require Long-Term Ventilation

Abstract

The role and potential of bioethics input when a child requires the initiation of technology dependence to sustain life is relatively unknown. In particular, little is understood about the meaning physicians give to bioethics as a source of support during the care of children in pediatric intensive care who require long-term ventilation (LTV). We used a hermeneutic phenomenological approach to underpin the collection and analysis of data. Unstructured interviews of 40 physicians in four countries took place during 2020. We found that elements of trust, communication and acceptance informed the physicians’ perceptions of the relationship with bioethics. These ranged from satisfaction to disappointment with their input into critical decisions. Bioethics services have potential to help physicians gain clarity over distressing and complex care decisions, yet physicians perceive the service inconsistently as a means of support. This research provides a sound basis to guide more beneficial interactions between clinicians and bioethics services.

The role of bioethics services in paediatric intensive care units: a qualitative descriptive study

“…Bioethics as a service is increasingly called upon to address novel medical ethical issues, and clinicians are required to consider and make decisions on ethical challenges that previously did not exist [ 1 , 11 , 21 , 22 ]. The iterative nature of qualitative research undertaken as part of the TechChild programme identified the functionality of bioethics as an important factor.…”

“…We found that bioethics services were often described as being availed of if there was a dispute, or if there was the potential for dispute. The risk of dispute or the consequences of dispute has been recognised as one of the major stressors when technology dependence is initiated [ 1 , 2 , 5 , 21 , 22 , 24 ], and can even become the focus of widespread attention, involving the legal system and wider media coverage [ 21 , 27 , 28 ]. Some participants saw the potential of a bioethics service to help reduce this risk, particularly if bioethics were involved in discussions from an early stage, before a dispute can arise; potential that is reflected in the scientific literature [ 24 , 29 ].…”

Development of a factorial survey for use in an international study examining clinicians’ likelihood to support the decision to initiate invasive long-term ventilation for a child (the TechChild study)

“…Concurrently, children with increasingly complex medical conditions are surviving and accordingly, post-PICU morbidity rates have increased [4,5]. This has prompted a growing focus on bioethical discussions around issues such as survivability thresholds, quality of life, autonomy and other ways that the decision to initiate life sustaining technologies (such as invasive long-term ventilation (ILTV)) impact the child, their families and healthcare professionals [6,7].…”

“…Situations wherein ILTV is considered for a child living with complex medical needs are frequently the most medically challenging cases for clinicians to navigate with the child and family. The decision to initiate (or not initiate) ILTV can be an extremely challenging one for all involved [6,11].…”

“…The initial phase of TechChild involved interviews with clinicians (e.g., doctors, nurses, other MDTs, bioethicists) (n = 78) across several international hospital sites. This in-depth phenomenological investigation explored the experiences of clinicians with these children and their families during this decision-making period [6]. In the second phase of TechChild (the focus of the current paper), the investigation has shifted to examine the main influences on the decision to support (or not) the initiation of ILTV.…”