Organs,
Ethics, and HHS
By
James V. DeLong
Everyone
agrees that something needs to be done to increase the
supply of human organs available for transplant. But
the U.S. Department of Health and Human Services has
just finalized a regulation that will have the opposite
effect. It also misses the chance to move the ethical
debate into more sensible terms.
In
1997, 20,000 major organs were transplanted, including
more than 11,000 kidneys, 4,100 livers, and 2,200 hearts.
Demand outstrips supply, and 60,000 people are on the
waiting list. About 4,000 of them will die during the
next year before their turn comes. This understates
the gap, because a patient does not even make the list
unless s/he can pass "the green screen." This
means showing an ability to pay for the procedure. A
kidney transplant plus five years of follow-up costs
$172,000, and prices for other organs are higher, so
only the well-insured or the Medicare-eligible need
apply.
The
organ gap has set up a battle within the medical profession.
Hospitals that collect organs tend to use them at home,
offering them to other centers only if no good local
match exists. Since the number of transplant programs
has grown from a standing start to 275, the competition
is getting fierce.
This
local preference has aroused ire in two places. One
is the big national centers. These pioneered transplant
techniques, trained the surgeons who have started the
new programs, attract patients from all over, and now
have a hard time meeting their needs from local donations.
The second is HHS, which believes that fairness requires
a national system of allocation to guarantee that a
patient's chance of getting an organ does not vary with
geography.
HHS,
the 800-pound gorilla of medicine, gets what it wants.
A rule effective October 1 mandates a nationwide system.
It also requires preference for "sickest first"
-- patients closest to death -- to replace the multiple
and largely unarticulated criteria that govern the local
centers.
Opponents
are fighting back in various ways. They extracted some
concessions during the rulemaking; four states have
passed laws to keep local organs at home; a judge in
Louisiana recently issued a restraining order against
the rule. They cannot prevail against the federal government
in the end, and the rule will be in place soon.
The
locals argue that successful programs to encourage donations
are very much a result of local initiative. Neither
potential donors nor medical staff will be motivated
if their efforts benefit unknown, far-off patients rather
than their own communities. HHS, they say, will shrink
the total supply.
This
argument is powerful, but it does not go far enough.
If donations are to increase, then basic assumptions
need rethinking. For example, the doctors and bureaucrats
running the system assume that a donor should have no
say about who receives his organ (except for transplants
of kidneys among relatives). They regard this as so
obvious that they never bother to justify it. In fact,
it is far from obvious. Why should not a donor establish
his own preferences -- children, for example, or someone
with the longest potential life span, or no cirrhotic
politicians?
HHS's
"sickest first" is not an ethical imperative.
It is a copout, based on a fear that someone, somewhere
might be willing to take on moral responsibility. An
individual donor might have different priorities, and
a willingness to accept responsibility. The chance to
express these would surely raise the donation rate.
A
second unthinkable idea should be thought: Start paying
for organs. For a donor to sell a human organ is illegal
under federal law, but every other part of the system
is awash in economic calculation. Much of the current
contest is about money -- which medical centers will
prosper and which will not? It is hypocritical to insist
that donors, alone among all the players, act selflessly.
Yes, there are lots of problems with payments, but if
we really care about the 4,000 plus people who are doomed
by the present system, some thinking outside the box
is morally obligatory.
HHS,
by enacting a national system that is based on the one
dubious criterion of "sickest," that excludes
preferences of individual donors, and that continues
the ostrich policy that economic motivations are not
involved in this area is moving in the wrong direction.
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