Initiating technology dependence to sustain a child’s life: a systematic review of reasons

Abstract

BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions.MethodsMedline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.Results53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.ConclusionsThere is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence.

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

“…Local site gatekeepers were very familiar with the research aims and the inclusion criteria for interview and guided us in recruiting participants. We developed the interview protocol based on current literature ( Alexander, Quirke, et al, 2021a ; Alexander, Eustace-Cook, et al, 2021b ). Participants were guided to recall their experience of initiating technology dependence to sustain a child’s life and the interviewer listened for engagement with bioethics services.…”

“…Over the last 20 years, an increasing number of children with serious conditions have survived in and beyond pediatric intensive care due to the introduction of life-sustaining technology ( Amin et al, 2014 ; Cohen et al, 2011 ; Weiss et al, 2016 ). Many of these children rely on technology, such as long-term ventilation (LTV), to sustain their lives ( Alexander, Quirke, et al, 2021 ; Fontana et al, 2013 ). Alongside survival rates, morbidity rates among these children has also increased.…”

“…Alongside survival rates, morbidity rates among these children has also increased. This may have important personal, family, and wider social consequences ( Alexander, Quirke, et al, 2021 ). The process of initiating LTV in a child, whether this is invasively in the form of a tracheostomy, for example, or non-invasively through bilevel positive airway pressure (BiPAP) or continuous positive airway pressure (CPAP) ventilation, may involve the discussion of complex ethical issues around survival and quality of life.…”

“…However, making decisions around the initiation of life-sustaining technology can be particularly difficult involving factors beyond the clinical, such as values and beliefs, which may differ between clinician teams and the patient and family, as well as across and within countries ( Carnevale, 2005 ; Shapiro et al, 2017 ; Thorne et al, 2018 ; Van Manen, 2014a ). Decision-making for children requiring life-sustaining technology is becoming increasingly challenging in the context of the increase in availability and potential of life-sustaining technology for children ( Alexander, Quirke, et al, 2021 ; Gold et al, 2011 ; Hajibabaee et al, 2016 ; Johnson et al, 2015 ).…”

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)

“…While the evidence-base quantifying the extent of increases in medical technology dependence has expanded, few studies have examined the liminal space between beginning to consider the initiation of technology dependence (such as ILTV) and the final decision being agreed upon [12,13]. Findings from studies examining family and child participation in such decisions have highlighted that communication barriers, issues of trust, and a perceived lack of transparency create additional challenges for families during this difficult time [11].…”