Anyone who works in a children’s hospital, and particularly in a PICU, soon comes to know many children we call technology-dependent. This term includes a wide variety of children with a wide variety of problems, but a good working definition is a child who requires some item of technology to stay alive. This requirement need not be minute-to-minute. For example, some children require feedings delivered by a mechanical pump, either into their veins or into their intestinal tract. If the technology fails for some reason, the parents usually have several hours at least to bring their child to the doctor to fix the problem.
For some technology-dependant children, however, their reliance on machinery really is minute-to-minute — if the equipment fails, it’s a life-threatening emergency. These usually are children on mechanical ventilators — respirator machines. The day-to-day life for these children and their families is complicated. For example, everyone who cares for the child must be trained in how to trouble-shoot the machinery as well as in more than basic CPR if everything quits working. The machinery takes power to run, and every family needs to have a plan for what to do in the event of a power failure. These are only a few of life’s complexities for these children.
How many of these children are there in the community? Those of us who work in pediatric intensive care believe the number is increasing steadily as our technological capabilities increase. Are there any data about this? The answer is some, but not as much as we’d like.
For large university children’s hospitals, the prevalence is quite high. One recent such study estimated 20% — 1 in 5 — of all the children discharged from the hospital were dependent upon technology in some way, and 1% of these needed a ventilator. Of course large, tertiary children’s hospitals see only the sickest of children: what about the general population? The only comprehensive data I could find for the USA are twenty years old, when a study from the federal Office of Technology Assessment estimated the total as 50,000 children (or about 5/100,000 persons) were technology-dependent, 2,000 of these needing ventilators. A 2006 study of just home-ventilated children for the state of Utah found a 25-fold increase over the intervening decades in the prevalence of this most fragile subgroup of children. There is no reason to doubt that what is going on in Utah is not going on in the rest of the country.
Besides complicated lives, these children and their families also have very expensive lives. How expensive? Ten years ago I looked at the bills of several of my ventilator-dependant children, and they ranged from $75,000 to $300,000 per year. At that annual cost many families quickly reach the cap on their health insurance policies. There is help for them, although it varies from state to state (and the process is long and complicated), with such things as Medicaid waiver programs and Supplemental Security Income from the Social Security Administration.
With the number of these children increasing dramatically, accompanied by a corresponding increase in cost to our cash-strapped healthcare system, what are we to do? Anything? In the abstract, I think it is unethical to deny anyone care based upon cost. But the example of technology-dependant children is a real-life example of where the abstractions of the healthcare debates meet the reality of children’s lives. As a society, we can’t buy everything for everybody. Yet amid all the hub-bub of the debate, we can’t lose sight of the plight of these children and their families.