The vexing issue of 'quality of life'
A few days ago I wrote about what life is like for technology-dependent children — those children who rely on some item of sophisticated medical equipment to survive. In 2008, the express train that is our rising medical costs is hurtling toward the brick wall that is the finite limit of our resources. The annual medical bills of technology-dependent children can top several hundred thousand dollars, and a very large proportion of them receive government support of one kind or another to pay this cost in part or entirely. This is because virtually no one can afford these kinds of bills, and most of these children will (or have) reached the cap on their private insurance coverage, if their family had it.
What are we to do? The ethics of the matter are that a physician’s duty is not to an abstract thing called “society”; it is to an individual patient. That means caring for the child as his parents wish and not considering the cost of the care. It does not mean doing whatever the parents ask, such as providing futile care that only prolongs a hopeless situation. Providing life-support technology to the sort of child I’m writing about is not futile care — these children just need it to support them, and with it can live full and meaningful lives. But without it they will die.
Here enters the vexing issue of “quality of life.” The fundamental point to me is that no one can dictate to anyone else what that means — it’s an individual choice. In the case of a child, it’s the family’s choice. For example, Steven Hawking, the famous astrophysicist, has chosen to continue on total live support in spite of being totally paralyzed, and has even continued to work and write books in that condition. Clearly, although I’m sure he’d rather not be paralyzed, he’s willing to continue with his current quality of life.
My fear is, assuming nothing changes, when the train of costs finally crashes into the brick wall of limits, someone will put a stark dollar value on a human life. But really, they already have. The calculation is called quality-adjusted life years (QALY), and it’s used in Britain to determine what treatments the healthcare system will pay for and what it won’t. (It turns out their cut-off is about $60,000/QALY.) Our own government puts the value of a human life at just over 7 million dollars.
What we are talking about, of course, is rationing. We do desperately need some kind of medical cost control or we’ll go bankrupt. But technology-dependent children and their families are a small, relatively powerless group. I never want to see the day when they are denied care because of the cost. Surely we have many, many other places to look for savings in the non-system that is American healthcare before it would come to that.