Tom Youk was a shy lumberjack of a man with thick curly brown hair who worked hard throughout his life. Drafted into the Air Force in 1966, he was a decorated sergeant who went to college on the GI Bill and graduated with an accounting degree in 1974. He met his wife, Melody, in the 1970s. Later he turned his hobby of restoring vintage cars into a business. At 50 he took up racing as an amateur and in 1996 became Ohio Valley champion.
Then in June that year, Tom was told that he had amyotrophic lateral sclerosis (ALS), a progressive, incurable neuro-muscular disorder caused by the death of the motor nerve cells that control voluntary muscle movement.
He had three to five years to live. The path to his death wouldn’t be easy. His muscles would slowly stop responding. At first he might find it hard to walk. Then his hands would stop working. His tongue and jaw would become uncontrollable. He would choke on his own spit. His faeces would have to be scooped from his bowels. He wouldn’t be able to move or to talk, and soon it would become hard to breathe. And through it all, he would know what was happening.
Within a few months only the thumb and first two fingers on his right hand moved, and speaking took all his concentration. In spite of the doctors’ best efforts, he had trouble swallowing. His body slowly began to strangle him. He had a food tube put into his stomach in August 1998, but his body wouldn’t metabolise the food. Nothing could help him breathe and his lung capacity dropped to 25 per cent. He didn’t want to live totally paralysed, unable to speak, relying on machines and others.
He asked his doctors if they would help him to commit suicide. He wanted to pick the time and place of his death, to say goodbye with his family around him, to die with dignity. Though sympathetic, the doctors wouldn’t help him.
Tom asked his family to contact Dr Jack Kevorkian. They resisted, but he convinced them that death, on his terms, was what he wanted. Though Tom could barely speak, he dictated his letter to Melody and his brother Terry; the next day Kevorkian called them. He needed to see Tom’s medical records. He wanted to make sure that Tom had done everything the traditional medical establishment suggested for treating his disease and easing the pain.
By the summer of 1998, Kevorkian had been brought up on charges by the state of Michigan eight times. Each time he was acquitted, the charges were dropped or a mistrial was declared. Seven years earlier, the state suspended his medical licence. His involvement with assisted suicide incensed the American Medical Association (AMA). Kevorkian filed a $10 million defamation suit against the Michigan State Medical Society and the AMA, alleging that they had libelled him in a 1995 AMA press release that called him “a reckless instrument of death” who “poses a great threat to the public”. The suit was dismissed by a Michigan appeals court in August 1999.
Kevorkian felt that assisting in someone’s suicide was a medical procedure no different from amputating a leg. He believed that doctors shouldn’t feel they were helping to end someone’s life, but that they were ending suffering.
As he planned for a future where numerous doctors assisted in “medicide”, he had realised that he needed to establish guidelines for the process to eliminate criticism. His developed doctrine stated that the patient had to express claerly a wish to die, and the family and psychiatrists had to be consulted to ensure that the choice wasn’t a result of depression or family pressure. The attending specialist had to review the patient’s medical history to ensure that all the alternatives had been explored and they had to perform the service for free, to prevent unscrupulous behaviour. Legal and secular counsel was recommended. Finally, the doctor had to give the patient at least a month to consider his or her decision. He published his list of rules, which gained him support and controversy. In the Youk case, skirting his own rules would come to haunt him in court.
When Kevorkian reached the Youk home on September 16, 1998, Tom was sitting in a wheelchair. Kevorkian introduced himself and his friend and helper Neal Nicol, and set up a video camera to tape their meeting. Tom struggled to swallow, and in that moment Kevorkian noticed the pain in his eyes.
He took Tom’s hand in his own. Tom’s body relaxed. Kevorkian asked him to talk about his disease and what it had done to him.
“Can you move your legs at all?” Kevorkian asked.
“No.”
“How about your left arm?” “No.”
“Try it,” Kevorkian pleaded. Tom was able only to twitch the thumb on his right hand.
“Have you talked this over with your mother, your brother and your wife?’ Tom’s mouth laboured over the words before saying: “They understand. It’s my decision.”
Kevorkian had assisted others in their suicides through the use of machines. The patient pushed a button, enabling a sedative to course through an intravenous feed (IV) into their body, then soon after that the drug would stop their heart. Another machine had a gas mask connected to a carbon monoxide tank. The patient had to pull a clip to release the gas. In both variations, the patient had control. They decided when they were ready to die. But Tom didn’t have enough control over his hands. So he asked Kevorkian if they could forgo the machine. Would Kevorkian directly inject him?
Kevorkian had been waiting for a patient to ask him this question. He decided that he would make a statement to the public after he assisted Tom. He had won a number of court cases over his assistance in other patients’ suicides, but in those cases the patients had used his machine. They had been directly responsible for their own deaths. With Tom, Kevorkian would be directly ending his life, and he would have it on videotape. Kevorkian believed that he could show it to the press, and when the inevitable court case came, and he won it, doctors would no longer fear doing what he did.
Kevorkian pulled out a consent form. “I’m going to read it to you, Tom — I want to make sure you understand it. Stop me if you can’t.”
“Yes,” Tom replied.
“It reads: ‘I, Thomas Youk, the undersigned, entirely voluntarily, without any reservation, external persuasion, pressure or duress, and after prolonged and thorough deliberation, hereby consent to the following medical procedure of my own choosing’. And that you have chosen direct injection, or what they call active euthanasia, ‘to be administered by a competent medical professional in order to end with certainty my intolerable and hopelessly incurable suffering’. Did you understand all that?”
“Yes.”
He handed Tom a pen to sign the form. Tom struggled, forcing the pen to scratch his name. He wanted there to be no doubt that this was his choice. “You’re sure you thought about this very well, now?” Kevorkian asked.
“Very much.”
“You don’t want to wait another month or so?”
“No, I . . .”
“Can you wait one week?”
“Yeah.”
“All right, we’ll stretch it out one week, OK?” Tom nodded.
On the drive from the Youk house, Kevorkian considered the choice that Tom had made, a choice Kevorkian had helped others with more than 130 times in eight years.
Terry Youk called the next afternoon to say that Tom wanted it done “now”. Kevorkian said he would do it, but that he didn’t want Terry or Melody there. If the police were to come, he didn’t want the two of them to face charges.
When Kevorkian arrived, the door of the Youk house was unlocked. Tom waited for him, propped up in bed. Kevorkian set up his video equipment. “Are you sure you want to go ahead?” Kevorkian asked. He attached an electrocardiogram to Tom to measure heart rate. The IV would have to go into the veins on the back of Tom’s hand. “I’m going to have you sign your name again and. . . we’re going to date it.”
Kevorkian straddled Tom’s lap and began the search for a vein. His needle poked Tom in the skin along the back of his left hand repeatedly, and Tom yelped in pain. Kevorkian finally found a vein that would work and began to prepare an intravenous line.
“Are you sure you want to go ahead now?” Kevorkian asked.
Tom nodded again.
“We’re ready to inject in your right arm,” Kevorkian said.
As the sedative flowed into his arm, Thomas Youk’s chin rested on his chest.
Kevorkian injected a muscle relaxant, followed by potassium chloride, the drug that would stop Tom’s heart quickly and painlessly. Tom’s head tilted back. Kevorkian watched the electrocardiogram. “Now there’s a straight line,” he pronounced. “His heart has stopped.”
© Neal Nicol and Harry Wylie 2006. Extracted from Between the Dying and the Dead, published by Vision at £16.99. Available from BooksFirst for £15.29, free p&p, on 0870 1608080; timesonline.co.uk/booksfirst
How the change in the law would work
If the Assisted Dying for the Terminally Ill Bill is made law in England and Wales, it will be legal for a doctor to prescribe a lethal drug, and the means of self-administration if the patient cannot swallow it, to anyone with a terminal illness who is mentally sound and who has signed a request seeking help to die. The doctor must confirm that the patient has a terminal illness, is “suffering unbearably”, has been informed of alternative palliative treatments, and has made the request voluntarily.
Two doctors must be involved, and both must satisfy these conditions. The doctors will not administer the fatal dose, but merely provide it so that the patient can commit suicide.
The fate of Dr Jack Kevorkian
On April 13, 1999, aged 70, Dr Jack Kevorkian was sentenced to 25 years for the murder of Thomas Youk. In 2005, the doctor was told that the hepatitis C he had contracted while researching cadaver blood transfusions 40 years ago had reached extremely dangerous levels. Kevorkian has always said he would take his own life rather than suffer to the end.
