July 15, 2010— -- Richard Rudd lay comatose on life support in a British intensive care unit last year after a horrendous motorcycle accident left him seemingly unconscious and a quadriplegic.
The 43-year-old former bus driver and divorced father of two teenage girls had watched a friend deal with paralysis and told his parents he would never want to live that way.
Rudd's parents took him at his word and asked to have their son, who had severe brain injuries, taken off the life support machine.
As doctors began discussions and moved closer to supporting the family's decision, Rudd began to blink his eyes.
Soon, they realized Rudd was in a "locked-in" state, able to think, feel and hear, but unable to speak.
So for the next three weeks, Dr. David Menon, an intensive care specialist at Addenbrooke's Hospital in Cambridge, worked to get Rudd to communicate with his eyes, answering simple questions.
Menon asked Rudd repeatedly if he wanted to live and he blinked that he did -- an agonizing drama that played out in a BBC documentary that aired this week about patients with brain injuries, "Between Life and Death."
"It allowed time for him to declare himself," Menon said. "The family was not certain it was in his best interests, and we weren't certain either. We didn't know what his wishes were."
Rudd hadn't left a living will. But even if he had, doctors and ethicists say people can change their mind.
Life and death decisions are "tempered by our circumstances," according to Menon. "People must have choices."
"If you were 50 years old recovering from spinal injuries and your daughter was pregnant and you were going to be a grandmother, you might want to stay around for to see if the grandchild grows up to go to law school or medical school," he said.
"We know that people who have spinal chord injuries describe life as better than I would describe being on call for a week," said Menon. "Even with some dependence, they describe a good quality of life, not their physical ability, but their social interactions."
Rudd's case is strikingly similar to one in Belgium last year when doctors revealed that Rom Houbens -- thought to have no brain activity since a 1983 car crash -- had actually been paralyzed and was fully conscious, able to hear everything around him but not respond.
It also echoes the story of Terri Schiavo, the Florida woman who was artificially kept alive for 15 years.
Schiavo, who had been diagnosed with a profound brain injury, was at the center of a seven-year legal battle before a judge granted her husband the right to allow her to die in 2005. Her family claimed all along that she was not in a vegetative state.
Locked-in syndrome was first identified in 1966 and occurs when the lower brain and brain stem are damaged, often by a stroke, paralyzing all voluntary muscle movements.
Usually the upper brain, which is responsible for thinking, is left intact. The only means a patient has to interact with others is through vertical gaze and upper eyelid movements, according to Mayo Clinic researchers.
The syndrome has been described as the closest thing to being buried alive and when it is total -- with no eye movement -- it is usually fatal.
In October of last year, Rudd was thrown 20 feet from his motorcycle when he was hit by a car pulling out of a gas station and was immediately paralyzed.
He was taken to the Neuro Critical Care Unit at Addenbrooke's hospital in Cambridge, England, where he was initially able to talk. But after an infection and organ failure, he slipped into a coma.
The family wanted treatment discontinued, remembering Rudd had told them after a friend's paralysis: "If ever this happens to me, I don't want to go on. I don't want to be like him."
Menon spent three weeks working with Rudd to help him understand his condition.
"He was not communicating with us," he said. "His imaging and clinical picture and prognosis looked bleak and he was not making any progress."
Richard Rudd Blinks to Doctors: I Want to Live
Doctors weren't sure what his cognitive ability was, even after Rudd began blinking.
"His case was not so clear cut," Menon said. "It was difficult to know."
So Menon began a step-by-step process to see if Rudd could respond to commands, develop a vocabulary and syntax and communicate using those eye movements.
Finally, Menon said, they were confident Rudd could communicate well enough to make the decision himself -- he didn't want to die.
His father, also Richard Rudd, said this week that the family was convinced there was "no way in a million years" that their son would want to live with such devastating injuries, according to Britain's Daily Mail newspaper.
Living Wills Are Like Maps, They Are Incomplete
"When we are healthy and in good condition, it's easy to say you would want to be switched off but when it actually happens it's completely different," he said.
"Making a living will could be detrimental to your own health. Imagine if you changed your mind but couldn't communicate it," said Rudd's father. "For my part, I'm glad he's alive and didn't make a living will. If he had, then we would never have known whether it was worth continuing with the treatment."
A living will is a document that states whether a person wants to be kept on life support if they become terminally ill or are in a persistent vegetative state. It can also address other issues such as tube feeding, artificial hydration and pain medication.
Doctors only invoke the living will when a patient cannot communicate on his or her own.
Despite Rudd's change of heart, following a living will is the best choice families have when their loved ones can't communicate, according to Stuart Youngner, chairman of the department of bioethics at Case Western Reserve School of Medicine in Ohio.
"Keeping a person alive against his will is a terrible choice," he said. "If you can't follow a living will, you doom many people who feel tortured to be kept alive in that state. If we take living wills seriously, we can't have it both ways."
Youngner said locked-in syndrome is "one of the top things I never want to happen to me."
"To an outside observer it's as if you are unconscious and in a coma," he said. "Your eyes are closed, you don't respond to pain. You can be fully awake and alert. The worst part is when nobody knows you are in there and think you are unconscious and do things like speak in front of you while you are lying their helpless, paralyzed and unable to communicate."
But living wills are only a guide, according to R. Alta Charo, professor of law and medical ethics at the University of Wisconsin-Madison.
"We have to have them because unexpected events can take away the ability to make our wishes known," she said. "But like a map, it's incomplete -- slightly out of date with traffic or construction or a tree fell on the road. This is where personal judgment comes in."
And even asking a blinking patient can be ambiguous. In Rudd's case, learning his wishes depended on the how Menon asked the questions, Charo said.
"I ask, 'Do you want to die?' and you say, 'no." But I haven't asked all the questions, and if you are never going to get better, what would you rather do, keep you like this forever?" said Charo. "For someone just emerging from the horror and depression of this condition might say, 'no,' to everything."
Today Rudd has been moved to a hospital that specializes in rehabilitation for spinal injuries. He can move his head an inch either way and smile or grimace and has regular visits from his children and parents.
"I think he will continue to make progress," Menon said. "We hope some of his cognitive function and facial muscles will come back eventually."
Rudd will forever be on a ventilator and may change his mind about living, months or years down the road, but that's his call.
"This is about the autonomy of an individual," he said. "I would try my best to respect his wishes if he was cognitively intact and not depressed."
Still, Menon is satisfied he did the right thing by waiting for Rudd to blink his decision when his parents were ready to pull the plug.
"When a person is unconscious, they can't make their wishes known," he said. "Doctors need to get the best possible information to what they might desire. We have to take the family into account, but it's not as robust as from the patient."