Severe Mercy in Oregon

Troy 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.

In January 1996, after the Thompsons moved into their new home, their doctor told Thompson he had less than six months to live. Hospice workers, extended family, church friends, and other caregivers began assisting Marilyn Thompson with her husband's care around the clock.

"It was really sacrificial," says Keith Reetz, assistant pastor of Beaverton Foursquare Church where the Thompsons attended. "It was unbelievable what people did for them in terms of service." A church member cleaned the Thompsons' house each week. Other members from various local churches prepared meals and bought groceries. Some gave money to help cover mounting medical bills.

Prayer teams visited regularly. Encircling Thompson's bed, they would lay hands on his motionless body and pray for healing. Prayer chains stretched from Canada to Spain.

Caregivers helped Thompson remain as independent as possible. With a special single-click mouse on his computer, he used his big toe to order flowers for his wife over the Internet. He communicated with the help of his computer's voice synthesizer, which "spoke" phrases he typed. Eventually, he could move only his eyebrows. Caregivers would painstakingly assemble words for him with the help of a spelling chart.

As Thompson clung to life, Christians in Oregon were losing the fight against physician-assisted suicide. After a legal injunction against the law was lifted in October 1997, Ballot Measure 51 was introduced in an attempt to repeal the law. In November 1997, the measure failed by a margin of 60 percent to 40 percent (CT, Dec. 8, 1997, p. 64).

Thompson could now legally take his own life. A television news crew from Japan interviewed Thompson on the night of the vote. They wanted to know if he would request lethal drugs. Thompson typed in response, "God doesn't make mistakes. He is the author and finisher of our lives."

Eight months later, at age 36, on July 11, 1998, two days before he had been scheduled to testify as a plaintiff in a lawsuit against the State of Oregon to block the physician-assisted suicide law, Thompson died. Four people professed a new commitment to Christ at his memorial service.

"Thompson's a hero," says Reetz. "He's walking in the footsteps of Job. I can't picture Job opting for assisted suicide." Marion County, Thompson's employer, created the Troy Thompson Humanitarian Award to honor county employees who reflect his "commitment to life."

Nearly a year after his death, the Thompson family still mourns the loss of their husband and father. Five-year-old Victoria, whom her mother calls "Victory," or Tory for short, often talks of heaven. She pictures her daddy running and dancing, things she never saw him do in life. Marilyn Thompson cries softly when she talks about her "knight in shining armor." But she is grateful he lived longer than his doctors predicted. "People don't normally experience life at its most vital point," she says. "We would have missed some profound experiences."

FIRST YEAR OF OREGON'S LAW: Physician-assisted suicide—on Oregon's law books for 20 months now—casts a long shadow over individuals such as Troy Thompson who are facing life-threatening illness.

In February, the Oregon Health Division released its report on the first year of the law. The report indicates that 23 people received prescriptions for lethal drugs in 1998. Fifteen used the medications to kill themselves. Six of the twenty-three died from their illnesses; two were still alive as of January 1.

Many Oregon physicians are profoundly ill at ease with the prospect of assisting in a suicide. Six of the fifteen individuals who took lethal drugs had to contact more than one physician before receiving the prescription. An Oregon Health Division survey estimates that 67 percent of Oregon doctors would refuse requests for suicide medication.

The state survey found that many patients fear loss of control, not pain, as the primary reason for seeking to end their lives. Loneliness can also be a factor: only two of the fifteen who took lethal drugs were married; nine were divorced or widowed.

LOST INDEPENDENCE: In 1994, Pat Matheny was among the majority of Oregon voters who cast ballots for physician-assisted suicide. At the time, he did not realize the impact his vote would have on his life: three years later, at age 41, he was diagnosed with ALS.

Matheny, who worked as a cabinetmaker and assistant teacher at Head Start, lived in a travel trailer parked behind his parents' house in Coos Bay on the Oregon coast 200 miles south of Port land.

Strongly independent, Matheny served in the National Guard and earned his pilot's license, "just for the challenge of it," his parents recall. After more than a decade of woodworking, Matheny decided to enroll in college. He graduated with honors from the University of Oregon at age 39.

As with Thompson, Matheny visited ALS specialist Wendy Johnston, who gave him a prognosis similar to Thompson's. But Matheny had a sharply different reaction. "He had a combination of resignation and managed despair," Johnston recalls.

With Matheny's condition worsening, his mother, Patricia, acted as his primary caregiver, carrying an infant monitor around the house so she could respond to his needs. Each day, his mother would arrange ten cigarettes in a bowl, filter side pointing up. Matheny could pick them up with his mouth and light them with a foot-powered treadle pump. A small tabletop vise held Matheny's favorite foods—breakfast burritos, corn dogs, and Burger King Whoppers—allowing him to feed himself.

Within a year of his diagnosis, Matheny's condition had deteriorated rapidly. He lost the use of his arms. He had difficulty swallowing. Television became a constant companion. But he could still scoot around his trailer on the wheeled desk chair that he pushed with his feet. And he could e-mail friends and relatives with his foot-controlled computer. But he required assistance in bathing and dressing. Matheny felt the quality of his life slipping away.

Matheny feared losing autonomy more than he feared death. While not religious, he believed in reincarnation and the existence of a Supreme Being. Matheny considered overdosing on illegal drugs or shooting himself. Ultimately, Matheny decided to test the new law and kill himself lawfully.

He contacted the Hemlock Society for a doctor referral. Under the law's mandate, the process included two verbal requests from Matheny (separated by a 15-day waiting period), a written re quest, and the consent of two physicians. Matheny approached at least three physicians before finding one who would agree to give the second consent.

Last November, Matheny received a package of barbiturates and antinausea pills in the mail. The prescription cost him $47. Matheny's insurance could have covered the cost of the medications. Instead, Matheny paid for them himself to protect his prescribing physician from controversy.

Matheny received some Christian literature in the mail from concerned individuals who wrote that they were praying for him. A hospice chaplain offered to meet with him, but Matheny rebuffed the chaplain's overtures.

At Christmas, the Matheny family, including Matheny's teenage son from an earlier marriage, gathered in Coos Bay to say a final goodbye. After an emotional holiday, Matheny decided the time had come. On December 28, Ma the ny asked his older brother, Michael, visiting from Florida, to take the drugs out of the refrigerator.

But choosing death turned out to be harder than Matheny imagined. Isolating himself in his trailer, Matheny agonized over his decision for a week. Then, on January 4, two days before his forty-third birthday, Matheny decided to wait.

Holding the power of death in his hands, Matheny determined his life still had meaning because his mind was still active. He wanted to help find a cure for ALS. He had developed a survey for ALS patients to help determine causes of the disease. He was also participating in a drug trial. In addition, he wanted to further the cause of physician-assisted suicide. Like the early Oregon pioneers, Matheny saw himself as a trailblazer into uncharted legal territory. But he knew his voice of support for physician-assisted suicide would be heard loudest only through his own death.

On March 8, Matheny's brother-in-law, Joe Hayes, arrived from Lincoln City, about 100 miles north of Coos Bay. Matheny's parents had asked Hayes to relieve them of Matheny's care for a few days. Two days later, Hayes told Patricia and Robert Matheny that their son had died. Matheny had asked for Hayes's help in taking the drugs because Matheny wanted to spare his parents the agony of watching their son die.

Hayes told them that he mixed the barbiturates into a chocolate protein drink at Matheny's request and held the straw to Matheny's lips. Hayes also shook Matheny to keep him awake so he could finish the lethal drink.

The Mathenys deeply miss their son, but they respect his decision. "He always said he would know when the time was right," Patricia Matheny recalls.

"He thought he was doing something for a cause he believed in," Robert Matheny says.

Patricia Matheny says the law provided hope to her son, knowing that he, not a debilitating disease, controlled his fate. "My son's death was with dignity, be cause it was his choice, his way, and at his time," she says. "I don't think we would've had our son as long as we did if that medication wouldn't have been available."

LOVE, NOT LAW: The lives and deaths of Pat Matheny and Troy Thompson illustrate the burden of choices facing the seriously ill in Oregon. Both Matheny and Thompson suffered from ALS. Both men are now dead. Each chose how he would die, but only one chose when. In their separate journeys toward death, Matheny found his hope in the law; Thompson found his hope in the love of family, friends, and his faith in a God who heals.

Both relied on caregivers and computers for fleeting moments of in de pend ence. But only Thompson fully acknowledged his dependence on God, which allowed for an acceptance of his growing reliance on others. "He wasn't embarrassed or ashamed" of his illness, his wife says. Matheny mostly kept family and friends at bay, living alone in his trailer. "He always wanted to do things his way," his mother recalls.

Wendy Johnston counsels ALS patients to consider their growing needs as their gift to others. "In fiercely maintaining your independence, you are taking something away from your family," she says. "Accepting the help of others, letting your family care for you, can be something you give back to them."

The Thompson family prayed for Troy's physical healing, but the miracle appears to have occurred in and through the lives of those who knew him. "The Lord put so many people in their lives, just stationed them at critical points to provide the kind of support that they would need," pastor Keith Reetz recalls. "So they've got a zillion miracle stories. A lot of those are just through people."

The Thompsons received hundreds of grateful e-mail messages after the publicity of Troy's illness. One young father wrote that he had felt trapped in substance abuse and considered suicide. He said Thompson's story gave him the courage to live.

Marilyn Thompson credits Josh Henley, a caregiver in his midtwenties who worked with her husband for two and a half years, with helping to prolong his life through their friendship. Thompson became a spiritual mentor to Henley, who had fallen away from his Seventh-day Adventist upbringing. Henley was one of the four who made a commitment to Christ at Thompson's memorial service.

By contrast, Matheny had far fewer re sources to sustain him, which troubles Johnston. She regrets that the distance between her office and Matheny's home prohibited her from offering more personalized care. She speculates that if Matheny would have had in creased financial means, broader emotional support, and meaningful religious beliefs, he might have reached a different conclusion about the quality and meaning of his life.

So far, the church has been powerless to keep physician-assisted suicide off the Oregon law books. Pro-life groups such as Physicians for Compassionate Care and Americans for Integrated Palliative Care continue to challenge cost-conscious managed care in support of improved end-of-life care. An amendment currently before the Oregon legislature allows the Catholic-run Providence Health System the right to prohibit its physicians from prescribing suicide drugs in its hospital facilities.

And the legislative battle appears far from over. At least six other states are contemplating following Oregon's lead, including the most populous state, California. As physician-assisted suicide becomes more nationally accepted, some activists predict legalized lethal injections will be the next agenda item in Oregon. Some believe that the current law discriminates against persons with disabilities who are unable to swallow any medications.

In the interim, Christians are gaining small but vital victories in homes and in doctors' offices across the state. A Christian gynecologic oncologist in Portland says business is up since he posted a statement in his waiting room that says he will not participate in assisted suicide.

As in the case of Thompson, the church is at its most powerful when its members minister one-on-one to the sick and dying. But many outreach efforts are focused on those already within the church body. Tangible expressions of Christ's love to the seriously ill could have their strongest impact on those outside the Christian community.

At least 16 individuals in Oregon, including Pat Matheny, have faced death and decided life was no longer worth living.

Churches in Oregon are rediscovering how to give people a reason to live. Reetz, the Thompsons' pastor, is convinced that the mission fields of the future are hospitals, convalescent centers, and the homes of the sick and dying.

Acts of compassion, not quick death bed conversions, are the motivation. "All we can do is make ourselves available and reach out," he says.

Yet Reetz readily acknowledges that not everyone will accept the hope the church offers. "That's the heartbreaking side of it."

Copyright © 1999 Christianity Today. Click for reprint information.

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