In their recent Viewpoint article, David Cornfield and Jeffrey Kahn illuminate four potential pitfalls in the ethical decision-making for children receiving life-sustaining measures. (Acta Paediatrica 2012. 101:333-336) Using cases from their work with critically ill children, the authors consider four broad areas that confound decision making with regard to sustaining or withdrawing life support.
Accepting the new reality
Grappling with the realities of a critically ill child is always a crisis. Parents are overwhelmed and mature clinicians become adept at reading and responding to parents’ adaptive defences. At times, write Cornfield and Kahn, “decision-makers regard the decision to continue or discontinue support as an endorsement or refection of the limitations imposed by the medical condition.” The authors suggest that the decision to continue or withdraw life support can transform itself into a decision of whether a life is worth living with a now unavoidable limitation, such as dialysis or an amputation. In other words, the reality of the disability or limitation is compared to the previously healthy life, not to a new reality of a life with disability, and may represent an incomplete acceptance of the new reality, simply because it is not the old reality. Asking whether “the child would WISH to live with the limitation” is moot, since that is the child’s only option. In the end, a decision to withdraw support may in fact be in the best interest of the child, but only once the new reality is completely explored.
Programmatic interests of the team
Mortality data is an essential metric in every hospital. Quality is measured in part by outcomes following surgery. Cornfield recounts a common example of how the statistic of surgical deaths may effect decisions of life support. When a child dies more than 28 days following surgery the death is not categorised as a surgical death. The care of such critically ill children is always complicated, and it is not difficult to imagine that the decision to withdraw life support might be stretched a few days with the surgical statistic in mind. No doubt there are other “programmatic interests” that any of us might be able to conger up which might influence decisions about when and how to address the issue of withdrawing support.
Bias from past experiences
Every provider is informed by past experience. Poor outcomes often cloud clear decision-making and may effect the assessment of prognosis. The authors relate examples of when bias to the social and financial challenges facing parents of a potentially disabled child may effect the way a prognosis is presented.
Complexities of family dynamics
Lastly, families are fraught with politics and complexity. What clinician has not found themselves in the middle of an impossible turmoil between parents, or grandparents? To assume that decisions regarding life support would remain ethically pure with regard to family conflict is simple folly.
Being aware of the pitfalls is always the first step toward avoiding them. Drs. Cornfield and Kahn do us a great service by clearly elucidating four common realities in critical care practice that may lead to decisions not truly in the best interest of the child. Let us all now take note and be vigilant.
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