Dead to the world

At 19 Judith Riggs fell into a comatose state after a car accident. At 53 she died, never having woken up. Lucy Atkins on life in limbo
  
  


The verdict at Judith Riggs's inquest last week was accidental death. Aged only 19, Judith had been out celebrating her A-level results when her car careered off the road. Doctors didn't expect her to survive the night - but she did, in a comatose state. This story is not, however, a straightforward tragedy. Judith's accident took place in 1965.

She was 53 when she died after being in a coma for 34 years. No one in the UK has ever been in a coma for so long. "The longer she held out, the more hope we had she was going to recover," said her sister Kath, now 51. "My mother kept waiting for the miracle."

Medically speaking, Judith was not in a coma. A coma normally lasts six to 12 months. If a patient survives beyond that, they pass into a "persistent vegetative state" (PVS), which Dr Keith Andrews, medical director of the Royal Hospital for Neurodisorders, describes as "a chronic state of wakefulness without awareness" characterised by "sleep/awake cycles".

Many people have a secret horror of ending up a "vegetable". The good news is that if it happens, you probably won't know about it. The cerebral cortex - which controls emotions, sensations and understanding - no longer operates in PVS. Only the functions of the brainstem, such as breathing, circulation and reflexes, are left.

What can make it so hard for loved ones to cope is that a patient in this condition may seem to be "alive". They might grimace, laugh or cry; open their eyes, grind their teeth, swallow, grunt, moan or scream. Their head might follow a moving object or move towards a sound. A "brain-dead" woman might even incubate a foetus until the baby can be delivered by caesarean section. Crucially, though, as Dr Andrews puts it, "there will be no evidence of sustained, reproducible, purposeful or voluntary behaviour or responses".

It's little wonder that the dilemmas about when to switch off the life-support machine are so heated. There are miracle stories, like that of Jean-Dominique Bauby, the French magazine editor paralysed by a massive stroke, who dictated a novel by blinking his left eyelid. But Bauby was, obviously, conscious; in PVS you may be wakeful, but you will certainly be unaware. Studies of the cerebral cortex of such patients show that metabolic rates are comparable to those of people in deep general anaesthesia.

"Sunny" von Bulow is the most famous of an estimated 14,000 US citizens existing in this state of "living death". Seventeen years ago, she slipped into her second comatose state. Her children claim that their stepfather, Claus von Bulow, tried to murder her with insulin. Since Sunny needs constant care to prevent infections and bedsores, plus therapy to prevent permanent muscular contractions and orthopedic deformities, it's fortunate that she's wealthy: a 1994 US estimate put the cost of care for a PVS patient at around £30,000 a year.

In 1990 the US Society of Critical Care Medicine issued a report saying that keeping people alive in PVS if the prognosis is hopeless "raises serious ethical concerns both for the dignity of the patient and for the diversion of limited medical and nursing resources". But then comes the question of what constitutes death. Today, with complex technology to revive and keep us alive, the question isn't just a medical one, but a conceptual, theological and moral one.

There are medical guidelines stating what constitutes death and when it's OK to switch off the machines. But sometimes the miracle does happen. The day before Catherine Roberts's life support was to be removed, she blinked, stuck out her tongue and mouthed "I love you" at her mother. Her parents had chosen the hymns for her funeral. In another celebrated case, a woman carried her comatose husband on her back six hours a day, five days a week for five years. "I thought if I could just get him moving, maybe it would stimulate his brain," she said. It is perhaps comforting to know that when he finally woke up - confounding his doctors - he remembered nothing. "Those years are totally blacked out," he said. "I feel a bit like Rip Van Winkle."

 

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