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.

Alzheimer's Disease and Family Care Givers

AOL's news of the day just posted the story of an 84 yr. old gentleman living with Alzheimer's Disease and his 53 yr. old caregiver son. Only by the grace of God are the events revealed in this story, not enacted time and time again in similar situations.

Son and father had apparently never had a close relationship. Once the father was diagnosed with Alzheimer's Disease and began to have serious enough symptoms that he could not be left alone, his son became his caregiver. The story reveals a difficult to care for man and a son who is frustrated and angered by his father's outbursts and failure to listen to him.

One late afternoon, a friend called the son and invited him to join her at the beach. Of course, he would have to take his father along. Not long after arriving at the beach, the father wandered down toward the water and took both his outer shorts and diaper off. The son immediately went to his father and roughly threw the diaper into the water and tried to retrieve the outer shorts which his father insisted "I don't want on."

From this point, the events are muddled. Some witnesses reported that the son dragged his father to the water and that, although he was not totally under water, he was ingesting water and becoming non responsive. Others said that it took the son a considerable amount of time to attempt to respond to his father's distress. When several persons phoned for an ambulance, the son was reported to be angry and yelling that there was no need for the ambulance. When it arrived, the son told the paramedics to leave; that they were not needed.

Despite the son's protests, the gentleman was taken to the emergency room. He was eventually moved to the intensive care unit where he died the next morning. Autopsy revealed conditions compatible with near drowning and the death was declared to be a homicide.

The situation and actions described in the article are deplorable. Those of us who have never been primary caregivers to parents with dementia/Alzheimer's Disease or other memory/abusive conditions, have no idea what that must be like. Neither we, nor our parents expect that we will be changing their incontinent pads or orientating them to time and place repeatedly, or finding ourselves the target of abusive language and lack of cooperation.

This is truly an opportunity to reach out to the caregiver as Jesus has told us that we must do in order to truly be his disciples. It is easier for most of us to respond to something tangible such as lack of food, the loss of a home or job or insurance. How do we respond when someone has a disease such as Alzheimer's that gradually muddles their memory, recognition, self sufficiency.
They have been stripped of much of what makes us human.

There simply is no excuse for the actions of the son in the AOL story yet, in many instances, "there but by the grace of God are we." I've seen it in nursing homes where staff hear the same things, observe the same behaviors, and feel the same frustration eight hours a day, 40 hours a week, and they finally find themselves grabbing a resident's arm and nearly dragging them to the dining room because telling them it is time for lunch and taking their hand yields no response other than opposition. Adult children stop visiting their parents because they have had the same conversation each visit for over a year.

Here, you and I must ask in all sincerity, "what would Jesus do?" We know the answer. He would reach out to those caregivers and offer them respite. He would listen to their concerns and the venting of their anger and frustration, and he would encourage them to return to their loved one remembering that despite forgetfulness, anger, rejection, confusion, they are still one's parent's and that we, as Christians, are called to love them as we did when we could laugh and tell stories, make shared decisions, and not worry about them disrobing, swearing at absolutely nothing, and pushing us away. Jesus does not promise that all of life will be easy, but he does give us guidelines to help us through both the good and the rough times.