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.

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.

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?

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.