Forgoing life sustaining treatment decision-making in critically ill children: Parental views and factor’s influence

Abstract

Objective Explore parents’ point of view about forgoing life sustaining treatment (LST) in terminal critically ill children and factors affecting their decisions. Method This was a qualitative study using in-depth interviews with parents whose child died between 6–12 months old in pediatric intensive care unit (PICU) of a university-affiliated teaching hospital. Interviews were audiotaped and transcribed. Data were analyzed using interpretive description method. Result A total of 7 parents of 5 children decided to withhold or withdraw LST. Five parents from 4 children decided to sign the do not attempt resuscitation (DNAR), and none choose to withdrew the LST, including mechanical support. Factors influenced their decision were communication, value of children, child best interest, intuition, religious belief, and emotions. Economic factors did not influence the decision-making. Conclusion Most parents decided to sign the DNAR, none choose to withdrew mechanical support. Communication was the most important factor that influenced parents to make a forgoing LST decision.

Shared decision-making experiences in child long-term ventilation: a systematic review

“…Religion, spirituality and faith also played significant roles in decisions [ 8 , 17 , 30 , 31 ]. For some caregivers, not pursuing LTV for their child was akin to an act of “sin”, with a fear of “going to hell” [ 30 , 31 ].…”

“…Religion, spirituality and faith also played significant roles in decisions [ 8 , 17 , 30 , 31 ]. For some caregivers, not pursuing LTV for their child was akin to an act of “sin”, with a fear of “going to hell” [ 30 , 31 ]. Likewise, caregivers described it as being “God's choice how long (child) is going to live” [ 17 ]; therefore, they pursued any medical intervention that would prolong their child's life.…”

“…At the same time, some caregivers described the importance of being “rational” advocates [ 7 , 17 ]. However, in reality, most caregivers had to grapple with their own needs and anxieties while attempting to promote their child's best interests when making the decision [ 7 – 9 , 17 , 20 , 31 , 32 ].…”

When is enough, enough? Exploring ethical and team considerations in paediatric cardiac care dilemmas

“…Identifying and making explicit our obligations and biases enhances our ability to make an appropriate decision. Parental views and values have greater influence in settings of uncertain outcome [24]. Herein the importance of informed consent is further augmented as the family will be required to engage on a journey with many unknowns [7 ▪ ,9 ▪ ,11,25].…”