91av

JAN and her husband have attended two funerals in the past 12 years, each
time to bury their child. The same child. At the first, they cremated Michael,
their four-and-a-half-month-old son who died from suspected septicaemia weeks
earlier at Alder Hey hospital in Liverpool. At the second, last year, they
cremated Michael’s organs, including his kidneys, lungs and brain, which the
hospital had discovered in jars on a shelf.

In short, the story of Jan’s family is that of the “organ retention” scandal
that engulfed Britain when it broke in 1999. Without their parents’ permission,
and in the name of medical research, more than 2000 body parts and organs were
taken from hundreds of dead children and left unattended for years in a basement
at Alder Hey.

Jan’s experience is far from unique. Hundreds more parents lived through
similar circumstances, some attending up to four funerals for a single child.
Their grief and outrage is still palpable.

Yet only now, a year after the official report on the scandal was published,
are the true implications emerging. The scandal has provoked a damaging public
backlash against the whole notion of post-mortems and the pathologists who
conduct them. The result is a crisis in the National Health Service.

At stake is Britain’s ability to monitor its collective health. Without
post-mortems, doctors are losing their capacity to spot new diseases emerging
and better understand the old killers. Bereaved relatives can no longer be sure
why their loved ones died, and family members are less likely to learn of the
dangers of inherited disease. Even murders could go unnoticed.

The scandal broke after it emerged that Dutch pathologist Dick van Velzen and
his team at Alder Hey had, without proper consent, routinely collected and
stored deceased children’s organs for examination. Later, during an official
inquiry into the practice, it transpired that they had not even bothered to
examine many tissues and that van Velzen had lied to parents about whether
organs had been returned to bodies for funerals.

Parents buried or cremated their children without realising organs were
missing, and many have since held multiple ceremonies, as organs have been
returned to them. A year earlier, parents in south-west England faced the same
experience, when they learned that doctors at the Bristol Royal Infirmary had
also kept their children’s hearts and organs without permission.

Alder Hey and Bristol prompted the government to carry out a count of organs
and tissues kept at hospitals and museums. Between 1970 and 1999, hospitals
accumulated 105,000 organs. Alder Hey alone kept almost 7000. Enquiries from
anxious relatives are now flooding hospital switchboards. “Last year, we had
1500 enquiries from relatives. Each averages two hours to check out, and it’s
cost at least £500,000,” says Waney Squier of the Radcliffe Infirmary,
Oxford, who examines the brains of babies who died before, or soon after, birth
to find out why.

Coroners can order an autopsy to investigate an unexplained or suspicious
death. And hospital staff may ask to perform “voluntary” post-mortems to
ascertain why a patient died. The public has now become suspicious of these
requests for voluntary autopsies or to keep body parts for medical research. The
result is a crisis in the pathology profession.

Pathologists fed up with the bad publicity are leaving in droves. “Morale is
awful,” says Squier. A quarter of consultant posts in paediatric pathology in
Britain go unfilled and three out of five trainee posts are empty. Across the
country, 1 in 10 pathology jobs are vacant.

“The adverse publicity given to post-mortems may have turned young doctors
away from entering the profession,” says James Underwood, vice-president of the
Royal College of Pathologists. “They don’t want to be branded as monsters,
ghouls or organ snatchers. They’d like to be regarded as doctors and medical
people intent on alleviating suffering and learning from post-mortems for the
welfare of future patients.”

Staff shortages mean sick patients’ biopsy samples are not being examined and
waiting lists are getting longer. “People forget that pathologists spend 95 per
cent of their time looking at tissue of the living, to find out what they’ve
got,” says Jim Lowe, professor of pathology at the University of Nottingham.
Cancer patients can only be given the correct drugs after a tissue biopsy is
checked out, for instance. And because it takes 12 years to train a pathologist,
the lack of new blood will only exacerbate the crisis in years to come.

The NHS faces an equally calamitous collapse in the number of post-mortems
being carried out. Post-Alder Hey, families are refusing to allow voluntary
post-mortems on their dead relatives, fearing that their organs will be spirited
away. Doctors are in turn shying away from asking relatives for permission to do
a post-mortem.

The vast majority now only take place if ordered by a coroner. “Post-mortems
done with relatives’ consent are now 5 per cent at the Royal Hallamshire
Hospital where I work in Sheffield, whereas it was about 40 per cent in the
1960s,” says Underwood. Others tell the same story. Between them, three senior
brain pathologists contacted by 91av used to examine 700
brains each year. Since Alder Hey, they have received just over 30.

Jennian Geddes of the Royal London Hospital, who studies brains from infants
who might have been shaken to death, had just 15 brains last year compared with
the usual 150. She says that her recent pioneering study showing that even mild
shaking can kill babies wouldn’t be possible in the current climate
(91av, 16 June 2001, p 4).
In the past year, Squier has been given just
13 brains for diagnosis instead of the usual 150. “We should know why so many
[babies] have brain damage, but if we don’t examine them we will never find
out,” she says.

Lowe sees only a fraction of the 400 brains he used to study for clues to
dementia in the elderly. “The knock-on effect is that we are not checking what
people are dying of any more,” he says. “We know one old person has died of
vCJD, but we’re now unable to maintain any sort of surveillance in the elderly
population because no one is looking any more.”

The value of autopsies can be illustrated by stark statistics. Some types of
serious heart surgery used to have a death rate of 1 in 3, but post-mortem
results are thought to have slashed the rate to 1 in 33.

The taboo surrounding post-mortems is also compromising our ability to check
on the competence of doctors. Studies incorporating post-mortem results show
that the wrong cause of death appears on 10 to 50 per cent of death
certificates. And there may be a more sinister consequence. Voluntary
post-mortems by hospitals can stumble on evidence of a murder, from poisoning
for instance, that would otherwise have gone unnoticed.

The crisis sparked by Alder Hey and Bristol appears to be far from resolved
(see “Can we trust the doctors?”).
For pathologists, the reverberations caused by the malpractice of
van Velzen and his ilk will take years to fade. “There’s a great deal of
disillusionment among us all,” says Squier. “We’re being hounded for doing an
unpleasant job, but we don’t do it for our own gratification—it’s because
we want to stop babies from dying unnecessarily.”

For the relatives, the wounds still run deep and the demand for justice
remains unsatisfied. PITYII, a parents’ support group in Liverpool, has brought
a legal case against Alder Hey. The National Committee relating to Organ
Retention (NACOR) has also begun a class action on behalf of parents with
grievances against 134 hospitals.

But despite their experience, these groups support pathologists who seek
informed consent before conducting a post-mortem or storing organs for research.
NACOR even promotes good practice by running seminars for pathologists across
Britain.

Jan Robinson, Michael’s mother, agrees. “If a family gives informed consent,
there’s no problem. Pathologists can learn from the families and vice versa.”