Decision Making When a Child is Critically Ill

A recent news story reminded me of the difficult decisions faced by many parents when one of their children is seriously ill. This was the story of an infant who was born with a rare condition which would necessitate his constant use of a respirator and increased difficulty moving or doing anything for himself if he lived through the early days in the hospital.

The problem was compounded by parental disagreement regarding the continuation of the endotracheal tube. Further complicating this delicate decision was that the parents were divorced. As the situation stood last week, the father would not give permission to remove the endotracheal tube and the infant remained on a respirator.

In recent and previous postings, we have mourned the deaths of two elderly people whose loving children made difficult decisions in standing with the wishes that were documented in both Advance Care Directives. Certainly, one cannot quantify difficulty when examining these situations. It is however, understandable that might believe in a more conservative approach in the case of an infant; or would we?

Is it responsible to keep an infant sedated and on a respirator and call that life? How long does the medical/legal system allow conflicting parental beliefs to halt decision making? Although the parents are the legal guardians and decision makers for the infant, does this authority have no time limit when there are moral and ethical questions?

Several days ago, this infant's father agreed to the removal of the endotracheal tube and respirator. The physicians suggested highly sedating the infant in order to reduce any discomfort or pain as his respirations became more labored and he finally died. As planned, this little one was removed from life support, and died peacefully.

Each time I read an update on this case, it appeared to me that the father was being demonized by his reluctance and refusal to let his infant child die peacefully. What was unsaid and either forgotten by readers and others is that we all come to decisions differently. I can't imagine being faced with such a decision. Despite deep faith, education, and normally rational thinking, our emotions often lead in decision making. Often, we can't come to terms with our own emotions.

Who were the poor here? All three individuals were. The infant had survived pregnancy only to be without the ability to sustain life. His poverty was in not being able to experience the richness of life and the sustained love of his parents and others. Certainly the parents experience poverty through the stress of conflicting beliefs regarding discontinuing life support. I must admit that I initially thought the father to be ill informed and selfish until I asked myself what I would do in a similar situation. Emotionally, this would be awful for me (for most of us).

Despite that poverty, the parents were able to sort through the reality of an infant who would never be without a respirator and who would be prone to infections, and would loose the use of his arms and legs due to nerve damage. When the question was "not about me" but about the well being of their infant, they came together, and despite the pain and sorrow, they allowed their infant to return to the arms of a loving God.

We narrow our understanding of poverty to lack of material THINGS and refuse to realize the poverty that those around us experience with few, if any, visible signs, then we are missing much needed ministry of care and support. I pray that this is an eye opener and that we will "tune in" to those around us and become intuitive and insightful when meeting our neighbors.