Lying About Dying

WHEN JACK KEVORKIAN APPEARED on 60 Minutes the Sunday before Thanksgiving to explain his killing of Thomas Youk, a man with Lou Gehrig’s disease, Kevorkian justified his crime to Mike Wallace by claiming Youk was scared to death of choking on his own saliva. Wallace, a vocal euthanasia supporter, accepted this excuse at face value rather than digging more deeply. Had Wallace done his job as a journalist and asked a competent doctor about the proper care of patients with Lou Gehrig’s disease, the 15 million people who watched Youk die would have learned that the very symptoms he feared most — choking and suffocation — could have been virtually eliminated with proper medical care.

Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS), is the red flag waved most vigorously by propagandists for so-called mercy killing. The media predictably rise to the bait because this neurological disorder is devastating, causing progressive debilitation, paralysis, and death. But it doesn’t have to be the excruciating death by choking or suffocation that euthanasia activities often luridly depict. Given the likelihood that the millions of viewers who watched Kevorkian kill Youk almost certainly included patients with the same disease and their families, it was unconscionably cruel of Wallace to allow Kevorkian’s propaganda to go unchallenged.

One expert Wallace could have interviewed is Dr. Walter R. Hunter, a medical director of the Hospice of Michigan (located in the country where Kevorkian lives) and chairman of the ethics committee for the National Hospice Organization. Hunter was appalled at the depiction of Lou Gehrig’s disease presented on 60 Minutes. “No one with ALS should be allowed to choke,” Hunter told me. “We have medications that control secretions substantially. If more is needed, we can teach the patient’s family to use a simple suction device, similar to that used by dentists.” But what about suffocation? As the disease destroys the body’s muscular ability, the diaphragm weakens, and it becomes progressively harder for patients to breathe. “A small dose of morphine is a godsend to patients experiencing shortness of breath,” Hunter says. And it doesn’t mean consigning the patient to a drug-induced haze. “I recently started a patient with late-stage ALS on morphine,” Hunter says. “She is the wife of an anesthesiologist. He was worried about that and the slowing of her breathing. But once we started with the morphine, he couldn’t believe how comfortable it made her. The key is to find a doctor who is an expert in such care.”

Morphine isn’t always necessary to treat breathlessness in patients with Lou Gehrig’s disease. There are other palliatives, too, including a machine that forces air up the patient’s nostrils to make breathing easier. According to Hunter and other experts, with proper treatment, no ALS patient should feel that they are suffocating. Nor should they choke. Indeed, the British physician, dame Cicely Saunders, the creator of the modern hospice movement, has written that she has treated hundreds of patients with Lou Gehrig’s disease, and not one then choked or suffocated to death. Indeed, Hunter says, in the typical progression of the disease, “the body is unable to clear carbon dioxide from the blood. There is a slow buildup and the patient sleeps. It is quite gentle and painless.”

I can vouch for that. It is how my good friend Bob died of Lou Gehrig’s disease — peacefully, in his sleep. Bob was my most recent patient at a hospice where I volunteer. Once a week, for about a year and a half, I visited Bob for several hours. During that time, he did begin to feel breathless. To treat his discomfort, he was prescribed the breathing-assistance machine, which did not extend his life but eliminated the feeling of suffocation. Toward the end of his life, he also used small does of morphine. People like Bob are the ostensible beneficiaries of the euthanasia movement. But Bob despised it. I remember his anger in January 1997, after Nightline aired a program about a Rhode Island patient with ALS who was asking for assisted suicide. (He too, would letter die naturally and peacefully.) Bob was devastated by the program. He put it to me this way: “They are trying to push me out of the well-lit boulevard into the dark alleys. They make me feel like a token presence in the world.”

After Bob became ill, he began to write a novel, first by hand and when that became physically impossible, by dictation to a computer. So when he asked me what he should do about the Nightline show, the answer was clear, “You’re a writer,” I said. “A writer writes.” Bob’s article, “I Don’t Want a Choice to Die,” was published in the February 19, 1997, San Francisco Chronicle. “Too many people,” he wrote, “have accepted the presumption that an extermination of some human lives can be just. . . . Where has our sense of community gone? True, terminal illness is frightening, but the majority of us overpower the symptoms and are great contributors to life. . . . In my view, the pro-euthanasia followers’ posture is a great threat to the foundation on which all life is based. And that is hope. I exhort everyone: Life is worth living, and life is worth receiving. I know. I live it every day.”

Bob, like millions of other disabled and terminally ill people, lived fully and with dignity until his natural death. The facts of their lives and deaths are not far to seek, and are routinely lied about by the likes of Kevorkian. Mike Wallace and 60 Minutes could easily have found that out. But they were apparently too busy congratulating themselves for their supposed journalistic courage to do so.