DEATH isn’t what it used to be. What was once a religious and cultural
phenomenon has been reinvented as a medical one. And we are struggling to come
to terms with the change. Could this be why three-quarters of Americans claim
they would donate their organs after death, yet only a quarter carry donor
cards? Could it also explain why stories about doctors removing body parts from
dead children provoke both revulsion and fascination?
As recently as a century ago, it was priests, not doctors, who declared a
person dead. When in doubt, they looked for signs of putrefaction. As medicine
advanced, however, it became apparent that death was not an event, but a
process. Even so, for practical purposes an arbitrary line had to be drawn.
First it was taken as the heart stopping. Then came the notion of brain death.
On the face of it, this injection of objectivity should have made death a more
straightforward affair. But it hasn’t.
The trouble is, the medical view often clashes with our individual and
cultural expectations of what death should look like, and many people have the
uneasy feeling that death is inexorably encroaching on life. Their half-formed
fears are expressed by Stuart Youngner, director of the Center for Biomedical
Ethics at Case Western Reserve University in Cleveland, Ohio, when he says that
brain death represents a conceptual fudge, a “gerrymandering” of the line
between life and death to include more people as dead. He believes that doctors
are using science to justify the removal of organs from people who aren’t truly
dead.
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In the 1960s, the idea of brain death seemed the way forward. Artificial
respirators could keep people’s hearts and lungs pumping indefinitely, but
doctors needed to know whether they were giving a patient a last chance at life
or just oxygenating a corpse. The concept of brain death seemed foolproof. Once
activity ceases in the brain and brainstem you can never regain consciousness,
and without intervention the body will quickly shut down.
Over recent decades, the pressure to accept the principle of brain death has
been driven by another advance in medical technology—organ
transplantation. Brain-dead patients make good donors because the heart is still
beating. Once it stops, the process of death is so advanced that the only organs
still viable for transplant are the kidneys. These days most technologically
advanced countries recognise brain death in law. But in some countries there has
been strong cultural opposition.
Denmark was the last country in Western Europe to accept the brain death
criterion. Traditionally, Danes regard a living person as both mind and body.
But in the 1970s doctors began questioning the policy of waiting until a donor’s
heart stopped before declaring them dead, and then resuscitating the corpse to
keep the heart pumping while surgeons removed the kidneys. The Danish Council of
Ethics accepted that brain death marks the beginning of the end, and that all
treatment should be stopped at this point. But it wasn’t until 1990 that Danish
law recognised brain death and cardiac death as equally acceptable.
In Japan the debate is not yet resolved, even though brain death was legally
sanctioned four years ago. Surveys carried out before the new legislation came
into effect revealed a paradox. Many people approved of organs being taken from
brain-dead patients—while at the same time refusing to accept that life
ended with brain death. Japanese law permits individuals to donate their organs
but it also allows families the right to overrule such wishes after a donor’s
death. So far, Japan’s traditional holistic view of human life has prevailed.
Surgeons have removed organs from brain-dead patients in no more than 10 cases
since 1997.
Even where there is no strong bias against brain death, people seem
ambivalent about it. One reason is a poor understanding of the issue, even among
doctors. Charles McCluskey, executive director of LifeQuest Organ Recovery
Services in Gainesville, Florida, has found a worrying level of ignorance among
medics in both the US and Japan. “When the brain dies it breaks apart and there
is no more activity,” he says. “And yet they still feel that there is going to
be pain there, and that they can bring somebody who is brain-dead back to
ڱ.”
Nobody has ever recovered from brain death. Where patients have seemingly
come back to life, the brain death diagnosis was always wrong. Yet even in
countries such as the US, where the definition has been used since 1968, there
is still a reluctance to recognise its finality. Many people confuse it with
coma—where a person is unconscious, but can recover.
Even those who accept that a person who has lost higher brain function can
have no perception, thought or sense of identity, find it hard to reconcile this
with what they expect death to look like. The man who is called to his dying
wife’s bedside and arrives after brain death has been declared, but before the
ventilator has been turned off, thinks he has made it in time. Youngner argues
that this is not simply a misplaced perception. “Nobody refers to brain-dead
people as dead,” he says, “They refer to them as brain-dead. Why? Because
they’re not exactly dead. Their hearts are beating, they’re breathing with the
aid of a ventilator, their skin is a good colour.” He points out that hair and
nails continue to grow for 48 hours after brain death, and a pregnant woman who
is declared brain-dead but kept on a ventilator may still deliver a live
baby.
Brain death might not even mean a patient is unconscious. Last year, Basil
Matta and Peter Young, two anaesthetists at Addenbrooke’s Hospital in Cambridge,
wrote to the journal Anaesthesia (vol 55, p 105) calling for brain-dead patients
to be anaesthetised before their organs are removed. In Britain the legal
definition of brain death traditionally refers to loss of function in the
brainstem alone. From a medical perspective this is the point of no return. But
Matta and Young argue that at this stage you cannot guarantee a person has lost
consciousness, because consciousness resides in the higher brain, which, in
theory at least, may still be functioning.
But the notion is contentious, and Matta and Young admit that administering
anaesthetic before removing organs may be more for the benefit of medics than
donors. Even if brainstem-dead patients can’t feel pain, they are still capable
of reflex actions mediated by the spinal cord. They may move about on the
operating table and a cut can result in the heart racing and a rise in blood
pressure, all of which can be profoundly disturbing to the medical staff on
hand.
The paradox is that some see the brain death criterion—which is
designed to ensure that organs are removed only from dead donors—as
legitimising the premature intervention of surgeons. According to Youngner,
brain death is a “subtle and indirect form of decoupling” that allows organs to
be taken before a patient is truly dead. There was a time, he says, when you
continued to treat a person until they died. Now hospitals routinely decide to
stop treating dying patients, thereby precipitating their death. In a few
centres in the US, Europe and Japan doctors may take this decision with a view
to removing organs as soon as the heart stops beating.
Youngner predicts that as the shortage of organs increases, the boundaries of
death will be stretched even further. In the US, the number of patients waiting
for organs more than tripled from 22,000 in 1990 to 72,000 in 1999. But the
numbers of dead and living donor transplants that took place increased far more
slowly, from 15,000 to 22,000 over the same period. The greatest shortage is in
paediatric organs. Between a third and a half of children who need organs die on
the waiting list, and the situation has already forced the US authorities to
consider another controversial source of organs.
Anencephalic infants are born with a functioning brainstem but no cortex.
They are therefore alive according to the American brain death criterion, though
they rarely survive beyond a few hours or days. Yet in 1994, the American
Medical Association Council on Ethical and Judicial Affairs ruled that it was
ethically permissible for organs to be taken from an anencephalic infant—a
U-turn on its position six years earlier. One year later, it reversed its
decision again, on the grounds that it was not possible to rule out
consciousness in an anencephalic infant, and that there was a risk of
misdiagnosis.
Youngner sees the same toying with definitions at work with talk of taking
organs from patients in a persistent vegetative state. In PVS the cortex or
higher brain is dead but the brainstem still functions so the patient is able to
breathe unaided. The diagnosis is applied only after a patient has remained in a
vegetative state for at least a month. As time goes on, however, and there is no
change in his condition, the term “persistent” is replaced by “permanent”.
According to Youngner, this arbitrary change in classification implies the
irreversibility necessary to satisfy the so-called “dead donor rule”, which says
that you don’t take vital organs from anyone unless they are dead.
What makes the possibility particularly worrying is the real likelihood of
misdiagnosis. In 1996, Keith Andrews, then at the Royal Hospital for
Neurodisability in London, published a paper in the British Medical Journal (vol
313, p 13) in which his team re-examined the diagnoses of PVS given to 40
patients admitted to the hospital between 1992 and 1995. They found that 17 were
misdiagnosed, most commonly on the grounds that they were either blind or
severely visually impaired, and had therefore failed the eye blink and visual
tracking tasks on which their initial diagnoses were based. Although they were
also severely physically disabled, almost all could communicate using some sort
of movement.
Whether any country will ever permit PVS patients to become organ donors
remains to be seen. If there’s one lesson history has taught us it’s that
attitudes can change. Take Japan. Once, patients who went abroad for transplants
might receive hate mail, and doctors who removed organs from brain-dead patients
were sometimes branded as murderers. In the past few years, however, those in
need of transplants have had the courage to speak out, and more and more people
are prepared to accept brain death.
But if public opinions are changing, then medical technology is changing
faster. In May, Fred Gage from the Salk Institute in La Jolla, California, and
colleagues announced that they had grown brain cells from cadavers (Nature, vol
411, p 42). The researchers hope that one day neurons for transplantation may be
removed from dead donors rather than from fetal tissue as is now the practice.
Such transplants could help millions of people suffering from diseases such as
Parkinson’s and Huntington’s, but if the procedure does become a reality the
demand for organ donors will only rise.
Medical advances also give us choices, however. There are alternative sources
of transplant tissue that would remove the pressure to find dead donors.
Examples include xenotransplantation—using organs from other
species—and stem-cell research. But if we want to make the most of what
medical science has to offer, then we’re going to have to embrace change, see
things clearly and demand a say in the future.
It won’t be easy to persuade people to take the long view, though. Our
mistrust of doctors and our fear of being buried alive go way back. The Irish
wake, for example, was designed to give a corpse the chance to revive before
burial. And in 17th-century Britain, people would often ask a doctor to cut the
spinal cord of their dead relative—just to be sure.
Since humans began burying their dead around 100,000 years ago, death has
been imbued with symbolism and ritual. Each culture has its own traditions,
which is one reason why it’s unlikely that there will ever be a consensus on
what it means to be dead.
Nigel Barley, an anthropologist at the British Museum in London, points out
that definitions of death encompass a huge range. The Dowayo of Cameroon have
always regarded coma as death, and on Eddystone Island in the Solomons the word
for death, mate, is also applied to the very ill and the very old. At the other
end of the spectrum, death is only official in Hindu ritual once the skull of
the deceased has cracked open on the funeral pyre.
The variety of ways that cultures deal with dead bodies is equally diverse.
And although organ donation is a very recent phenomenon, it is quite common for
people living in traditional societies to separate flesh from bones and treat
the two differently. Often the aim is to dispose of the transient part of the
body—the mortal flesh—to leave the skeleton as a permanent testimony
to a dead individual.
In his book, Dancing on the Grave, Barley describes a New Guinean people
called the Hua, whose sons eat the corpses of their fathers and daughters eat
their mothers, so the dead parent’s nu, or vital essence, is transferred to the
next generation. Organ donation has an unnerving parallel with these death
rituals, as many transplant patients say they feel the donor has given them more
than tissue alone.
Variations on a death
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Further reading:
The Definition of Death edited by Stuart Youngner, Robert
Arnold and Renie Schapiro, Johns Hopkins University Press (1999) -
Twice Dead: organ transplants and the reinvention of death
by Margaret Lock, University of California Press (2001)