A STRANGE legal battle that could have repercussions around the world ended
in London last month. It centred on the conjoined twins named Jodie and Mary who
were born in August, joined at the pelvis. Only one has a working heart and
lungs. Doctors caring for the babies say they will both die unless they are
separated. Separation would kill the weaker sibling. The parents have said they
want both to die naturally.
The Court of Appeal’s ruling that separation should go ahead seems a case of
cruel necessity. One baby should die so that at least one can live. But the long
legal battle reflects the complexity of the issues, which include some of the
most vexing questions in medicine.
Should doctors decide who is fit to live, and who is not? Or should parents
decide, or even judges? Is it ever right to kill someone who is conscious, even
to save another life? Are heroic medical efforts to correct an abnormality,
however risky, always better than simply remaining abnormal? The decision could
exert an influence beyond Britain on how far doctors can go. But the case and
others like it reveal troubling prejudices.
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Alice Dreger, a medical ethicist at Michigan State University in East
Lansing, says conjoined twins are treated in ways we would reject outright if
they were separate individuals. “Two minds in one joined body offends Western
society’s veneration of individuality and freedom, to the point where surgeons
risk killing conjoined twins by attempting separations, even when they might
have lived healthy lives still joined,” she says. When this means killing one
conscious twin deliberately, she says, “it is no better than the days when
abnormal children were killed out of disgust or fear”.
Samuel Stal, a plastic surgeon who helps separate conjoined twins at Texas
Children’s Hospital in Houston, rejects the notion that twins with any chance of
separate lives might sometimes be better off joined. “They might adapt, but
they’re not normal people,” he says. Graham Fleggen, a neurosurgeon at Red Cross
Children’s Hospital in Cape Town, where 34 separations have taken place, more
than any other hospital, says, “It is appropriate to separate even in situations
where one won’t survive. Going through life conjoined is just not an appealing
DZپDz.”
About 200 surgical separations of conjoined twins have been attempted since
1950. In three-quarters of the cases, one or both survived. But ethical
questions vary from case to case, because of the many different ways babies can
be joined. Twins might share internal organs, or just skin.
Separations where one twin is brain dead pose few ethical problems. The same
is true of emergency separations. “The vast majority of separations we perform
are emergency operations, where one twin is already dead or dying and we try and
save the other,” says Lewis Spitz, head of paediatric surgery at Great Ormond
Street Children’s Hospital in London, which advised the Court of Appeal on Mary
and Jodie.
Things become complicated when both twins are born conscious, but one cannot
survive without the other and separation means the “sacrifice” of the dependant
twin. In the high-profile British case, it is Mary who would die. Selective
termination cannot be done on conjoined twins in the womb, as it may be on
normal, separated twins in the womb, as the lethal injection would kill
both.
The surgical equivalent would be separation in the womb. “That is out of the
question,” says Spitz. “You would put the mother at risk as well as the babies.
And the surgery would be extremely difficult. Foetal tissues are like wet
blotting paper.”
Separating conjoined twins after they are born, where one is sure to die, is
the ethical equivalent of selective termination, maintains Stal.
But Dreger disagrees. “For separate twins, society draws the line at birth.
If they were born conscious but deformed, you would never kill one to serve as
an organ donor to save the other.” She says society is prepared to suspend that
rule for the “sacrifice” separation of conjoined twins. “But if she isn’t brain
dead, she should have the rights of any human.”
Unfortunately, human rights were designed for physically separate
individuals. They start breaking down when one twin lives off the other. This
swayed the court to rule that Mary and Jodie must be separated to save Jodie.
Mary “sucks the life blood of Jodie, and her passive living will soon be the
cause of Jodie’s ceasing to live,” declared Lord Justice Alan Ward of the Court
of Appeal. Saving one life was judged preferable to losing two.
But significantly, the inevitability of the twins’ rapid death if they remain
conjoined is open to question. Such prognoses for disabled babies are often
wrong, claim disabled rights activists. Doctors from Great Ormond Street who
advised the court that both would die if they weren’t separated, also admitted
that the twins might live a few years if left together—though this may
have been considered as much a reason to separate them as the possibility of
their dying. Even Simon Taylor, lawyer for the parents, called the prospect of
the twins’ survival a “horrible spectre”.
Is it? Abigail and Brittany Hensel were born in the midwestern US in 1992
with two heads, two sets of upper body organs, two arms, two legs, and one set
of lower-body organs. They were given a year to live. They now swim, bicycle,
and go to school, says Dreger. Yet when similar twins were born in Arkansas in
1977, doctors tried separation, knowing it would kill one. Neither survived. The
surgeons wrote in the Journal of Paediatric Surgery (vol 17, p 259)
that the attempt was worth it, not because the twins would otherwise die, but
because they might otherwise have lived.
This highlights another problem with killing one twin to save the other: it
rarely achieves its aim. Only two such separations, in New Jersey and Cape Town,
have worked. As anaesthetic and imaging technology improve surgeons’ control,
says Stal, the success rate will go up.
But we shouldn’t forget that conjoined twins can blossom. Ruthie and Verena
Cady, born in Rhode Island in 1984, lived only seven years, but, says Dreger,
“their mother certainly feels they lived a worthwhile life.” Reba and Lori
Schappell, American twins joined at the skull, were expected to die soon after
birth. Separation would have killed at least one. Now 39, the twins are reported
to be upset at court rulings that Mary and Jodie must be separated.
Because each case is different, we can probably never say if the risk of
separation is always better than living conjoined. The real question then
becomes, who decides? In the US, cases like Mary and Jodie do not arise, because
parents have the final say. “We have two pairs now who would be good candidates
for separation,” sighs Stal. “But their parents didn’t want it. They’re six or
seven now, and they’ll probably live a few years. We didn’t think they’d make it
that far,” he admits. But their disabilities mean their quality of life is very
poor, he says. He compares separation to offering a kidney patient a risky
transplant, rather than staying on dialysis.
A further complication is that ultrasound in early pregnancy reveals
conjoined twins to most parents in rich countries, allowing them to opt for
abortion. Most live births of conjoined twins now come from countries with less
advanced medical facilities. Where the survivors are severely disabled, says
Dreger, separation may not have been in their best interests. “I can’t see
putting a child through all that if there is not good medical support
afterwards,” agrees Stal.
Mary and Jodie’s parents said their desire to let the twins die naturally
stemmed from religious beliefs, but they also admitted they do not have the
resources to care for a disabled Jodie at home on the Maltese island of Gozo.
Maybe parents should have the right to decide, says Dreger. But the British case
means more parents facing this dilemma could have their choices taken away by
doctors who seem unwilling to admit that sometimes a joined life might be better
than none at all.