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.
Sachin on 
I agree, this is a small, marginalized and powerless group. I would hope we always err on the side of caution when it comes to quality of life. I think we have a lot of capacity to exaggerate the suffering of those who make our own selves uncomfortable.
There is a vast amount of waste and innefficiency that needs tackling before we ever start denying technology to live.
Thanks very much for your comment. I do worry these kids will fall between the cracks and that their families will be pressured by money into decisions they would not otherwise make.
That’s the dilemma with healthcare. In many situations (like this one) it’s not simply a commodity like other commodities, where you can weigh costs and compare what your money is buying, choosing to buy this item but not that one based on cost or whatever other criteria you like. For these kids, we’re talking life and death.
Dr. Johnson writes: “It does not mean doing whatever the parents ask, such as providing futile care that only prolongs a hopeless situation.”
For twenty-five years, the medical profession has struggled and failed to develop any substantive guidelines on futile care. How can we demarcate those technology-dependent children whose care we do not want rationed away, from those whose care can be rationed away?
Mr. Pope–thanks for your comment. Yes, the definition of futile care is something we struggle with. It can seem so simple: care that does not heal, does not comfort, that merely prolongs dying. Yet those can be pretty subjective, vague terms in practice. When you get down to applying the distinctions to individual cases you often run up against these difficulties, especially when doctors and families disagree about what futility means. The link to Dr. Truog’s essay I put in my post describes such a situation. I’ve been involved with one or two like that over the years.
We need a practical solution. In my own experience, when parties reached an impasse, mediation by a disinterested third party, such as a hospital ethics committee, has helped (although in one memorable case it actually made things worse). In the long run I suspect we’ll end up with such a system, in which a third party, made up to be as fair-minded as possible, rules on what is or isn’t futile care. Regarding these children, I think high-tech machinery should be thought of as just another kind of chronic therapy and not put in an ethical class by itself. To do so is a trap, a think.
I see from your link you’re an expert in health law and end-of-life issues. I’m not, but I’ve been in some difficult situations, all of which really got that way because families didn’t trust the doctors or the doctors didn’t listen to the families (usually both). Those who mediated the disputes mostly solved those communication problems, after which a mutually agreeable solution was found.
I’d be interested in your ideas about if, or how, we might move toward a workable definition of futility. I don’t think the medical profession can (or should) do it on its own.
A compelling post.
What leaps out at me is the fact that these
children and their parents have very little
political power. They are not a wealtlhy
interest group.
Ironically, the elderly have much more power
in Washington: they are organized. And I
admire that—“grey panthers” can stand
up for Medicare.
But children are not organized and the parents of
very sick children don’t have the time or
resources to become a powerful lobby.
This is why we spend much less on medical
research that might help children than on
research that addresses the diseases that
afflict middle-aged, upper-middle-class
and upper-class men.
Yet this is a country that loves children.
This is why all of us must watch out for
these children. We need legislation that stipulates
that when distributing health care dollars,
children should come first. And that when cutting
funding, anything that affects sick children should
not be on the table.
In individual cases, palliative care specailists,
a medical ethics commitee, and pediatricians
who care for desperately ill chldren must
try to persuade parents that futile care
is not in the child’s interest–it can be
cruel. I’m told that too many children hang on
trying to “please” their parents and/or doctor.
But I think those cases need to be
addressed one by one–not with a general
rule about when care for a child is futile.
Maggie–
Thanks so much for your thoughtful comments. Your insights are correct, I think.