Severe Mercy in Oregon
How two dying patients dealt with a new right: When to die.
Christine J. Gardner in Portland and Coos Bay | posted 6/14/1999 12:00AM
T
roy Thompson's future was coming into full focus. Marilyn, Thompson's tall, blond wife of 15 months, had just given birth to their daughter, Victoria. With three other daughters from their previous marriages, family life was satisfying and happy. Work brought fulfillment, too. As a landscape designer in Salem, Oregon, Thompson, 32, enjoyed bringing beauty to life. The Thompsons had recently purchased land on a hill overlooking the lush Willamette Valley in Newberg, a bedroom community of Portland. Their life's dream, including plans for a new house, seemed almost complete.
In 1993, a month after Victoria's birth, Thompson's life took an unexpected turn when he came home from work with a dull pain in his upper back. Strained muscles were nothing new for the six-foot-four outdoor enthusiast. But this time the muscle began to twitch in an unfamiliar way.
First, Thompson went to a physical therapist who, in May 1994, then sent him to a neurologist. He put Thompson through a battery of tests that included blood work and an MRI. Two weeks later, the neurologist had ruled out every possible cause except amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease). He referred the Thompsons to neurologist Wendy Johnston, Portland's top ALS specialist, at the Oregon Health Sciences University.
The Thompsons assumed Johnston would conduct more medical tests. They did not realize that the referral was, in fact, a diagnosis. Later that day, the Thompsons' family doctor called to express condolences upon hearing the news. The referring neurologist had been more candid with the family doctor than with the patient. Marilyn Thompson broke down in tears. "It was so sudden and so devastating. We weren't ready to believe it."
The diagnosis was a death sentence. ALS, which destroys neurons that control muscle movement, would eventually leave Thompson's active mind trapped in a lifeless body.
About 30,000 Americans have ALS. Another 5,000 cases are diagnosed each year. The debilitating disease, which results in progressive paralysis, can move rapidly through the body in less than two years, but some patients live for more than ten years. There is no known cause of ALS and no known cure. It is always fatal.
Thompson's future—painful, immobile, and dependent—looked bleak. But a few months later, the State of Oregon gave him another option.
In November 1994, Oregon voters passed Ballot Measure 16, the "Death with Dignity Act," by a margin of 51 to 49 percent. For the first time in U.S. history, patients with six months left to live could ask their doctors for a prescription of lethal drugs to end their lives.
Within weeks of his first visit with Johnston, Thompson's speech began to slur and his hands began to curl. Determined to keep their lives moving forward, the Thompsons put their Lake Oswego home up for sale and began construction on their home in rural Newberg.
But by late 1994, Thompson, once an avid skier and fine-arts photographer, could no longer put on his coat by himself.
Daily life became a struggle. Long days and sleepless nights were filled with bedsores, feeding tubes, and oxygen tanks. Marilyn Thompson, who managed a team of real-estate agents, cut back to working three days a week; meanwhile, her husband worried about becoming a burden to his family. "It broke his heart," she recalls.
But Thompson, a committed Christian, did not consider physician-assisted suicide an option. As his independence slipped away, he became more dependent on God. His faith gave him the strength to resist the temptation of death's escape.