2003-May Readers Digest, US edition



Should terminal patients have the right to end their lives painlessly? An Oregon lawsuit has implications for us all.

By Mary A Fischer

JIM ROMNEY often thinks about how he'll spend his last moments of life. On a spring day in 2002, the 57~year~old former high school principal did just that while sitting with his nephew in a drift boat on Oregon's Sandy River. When a 20~pound chinook salmon snagged his fishing line, he declared: "Oh, man, if I could just have a heart attack right now, I couldn't be happier. What a way to go!"

     Romney isn't a morbid person - on the contrary. "I love life so much," he often tells friends and family. But he is realistic. Once a vibrant, active man who 1oved to golf, sky-dive and water-ski, he has become progressively weaker since being diagnosed in June 2001 with the incurable disease amyotrophic lateral sclerosis (ALS, commonly known as the Lou Gehrig's disease). Within months of the Sandy River fishing trip, he was having difficulty walking and holding up his head. By last summer, his hands were twisted and his speech was slurred.

     In late August of last year, when his condition deteriorated further, Romney confirmed that he was about to receive a lethal dose of barbiturates to end his life at the time of his choosing. In Oregon, under the state's Death with Dignity Act, that meant that doctors had already determined he had a terminal illness and had roughly six months left to live. "I hope not to exercise that option," he said in August. "but I want to have control over when I die because the symptoms of ALS make dying with dignity difficult."

     The Death with Dignity Act, which for the first time legalized physician-assisted suicide (PAS) in the United States, went into effect in Oregon in 1997. If two physicians certify that the person has less than six months to live, a mentally competent, terminally ill adult Oregon resident can request medicine to assist in dying. Since the law was enacted, about 25 Oregonians a year, most of them terminal cancer patients, have taken prescribed barbiturate overdoses to hasten their deaths.

     But such statutes on physician-assisted suicide remain highly controversial. Since November 2001, U.S. Attorney General John Ashcroft has battled the Oregon law, taking steps to nullify it in hopes of setting a national precedent on PAS. Last April, Ashcroft lost the first round in Oregon's federal district court, leaving the law in effect, but the matter could make its way to the U.S. Supreme Court.

     The debate over assisted suicide touches nearly every hot button there is - religion, economics and the government's right to regulate individual choices. The Oregon law, its proponents say, is working exactly as intended, They insist that assisted suicide for the terminally ill is a social movement whose time has come. At the heart of their argument are issues about quality of life and the rights of individuals to control their own bodies - and their own destinies.

     Critics maintain that assisted suicide is never appropriate and can never be properly regulated because of its subjective standards, which give too much discretionary power to doctors. They predict scenarios in which the aged or infirm will feel obligated to end their lives to spare their families undue emotional and financial hardship, and say the law could be used not only to manage symptoms, but to cut medical costs as well.

ON NOVEMBER 4,1997, Jim Romney went to the polls near his home in Tualatin and voted for the Death with Dignity Act, never imagining he would become one ot its most visible champions. Despite his conservative Mormon upbringing, he says. "Just like abortion, this is an individual's choice, and no one has the right to take that awav from vou." He didn't have to look far for an opponent. His Lutheran wife, Kathy, an elementary school teacher was against the law. "It's my Christian background that says death should be left in God's hands," she says. Married for 22 years, the Romneys say that few other pleasures compare to back-yard barbecues with their four grown children, two grandchildren and Bailey, their golden retriever.

     But their idylic life shattered when Romney was diagnosed with ALS and received the prognosis that he would eventually lose control over his muscles and bodily functions while his mind remains intact. "I told him I'd take good care of him," Kathy explains but her husband had other plans.

     "I know Kathy loves me, but I couldn't imagine having her take care of me to the point of cleaning me after I've fouled myself," Romney says. "As much as I don't want to go through this myself, I don't want to put her through it." So Romney turned to the Compassion in Dying Federation, a leading pro-PAS organization, which educates patients about end-of-life choices and makes hospice and physician referrals.

MARY MORRISON, a cancer patient who died in February, considered the assisted-suicide option but made a different decision. When she first heard about the Oregon law, the former manager of computer field engineers was 55, in good health, and living in California. 'I thought it sounded like a good thing," she said. Even though Morrison, like Jim Romney, bad been raised as a Mormon, she said her religious beliefs did not influence her initial reaction.

     But after being diagnosed with lung cancer nearly two years ago, she reconsidered. Divorced since 1969, she moved to Portland after learning of her cancer to be close to her only son. Then, in March 2002, Morrison learned the disease had spread to her brain. Doctors estimated she had six months. Still, she opted not to request life-ending medication for moral as well as practical reasons. "Life is too short as it is" she said. "If you have a choice. then you should live. Every moment is precious." Morrison's objection to the law was also based on fear. "My son told me one of the risks of the law is the medication might not work, and I could be left a vegetable."

NOT TRUE, says George Eighmey, executive director of Compassion in Dying of Oregon. The only risk from the medication is that you die." (The prescribed 9 grams of a short-acting barbiturate has uniformly resulted in death.) He says Morrison's fear is one of several misconceptions about the law. Another was that once the statute legalizing PAS passed, the flood gates would open. Hundreds of terminally ill people would kill themselves. "That never happened," says Compassion president Barbara Coornbs Lee. Oregon Public Health Services statistics for 1998 show that 24 Oregonians received medication, and 16 took it. Most of the others died from their illness. The numbers more than doubled in 2002: 58 received medication and 38 actually took it.

     Critics also predicted that poorly educated patients, underclass minorities, and those without financial support would feel pressure to choose PAS. "In our experience, none of those things have materialized." says Lee. Oregon Public Health Services records show most patients who avail themselves of the drugs are like Jim Romney: Caucasian, middle-class, educated professionals. Patients with a college degree were about three times more likely to participate than those who never finished high school.

THE OFFICE of Dr. Greg Haimilton, a well-known Portland psychiatrist, is only four blocks from Compassion in Dying headquarters, but he couldn't be farther from the organization philosophically. "The whole thing is a scam," he says.

"Terminally ill people have been made to think their lives are not as worth living as other people's. You don't tell somebody who is discouraged and frightened that the answer to their fears is to take an overdose, but that's what's happening here"

     Hamilton heads Physicians for Compassionate Care, an organization of 2,000 doctors and health care providers who are opposed to assisted suicide. "Advocates of the law are using the fear of pain as part of their political agenda, and they're frightening people into thinking they need assisted and they don't" he says. "Pain is not the issue anymore. The main factor is depression, and if we aggressively treat depression through medication and counseling the desire for death would diminish."

AT LEAST ONE outcome of Oregon's law isundisputed. "It was a wake-up call to the medical community that has led to significant changes in pain management and end-of-life care," says James L. Werth, Jr., assistant professor of psychology at the University of Akron, who has counseled dying AIDS patients. "People can get adequate treatment for pain and discomfort."

     Another outcome has been expanded hospice care. Statistics from the 1999 Dartmouth Atlas of Health Care showed that while most Americans still die in hospitals, in Oregon, over half die at home or in a hospice.

     Assessing a person's mental fitness to commit suicide poses a dilemma for doctors participating in PAS. In medical school, says Dr. Peter Rasmussen, a Salem, Ore., oncologist, "we were taught that anyone who wanted to kill themselves was mentally ill and we were sworn to keep them from doing it," Ten years ago, Rasmussen considered suicide "a sinful. cowardly act," he says, but his opinion has changed, and he has helped several of his terminal patients end their lives.

"My opinion has matured from long deep discussions with many colleagues and patients about the meaning and value of life," he says. "All thoose who took the medication were formerly independent adults who suddenly became dependent and lost the ability to enjoy their lives."

IN MAY 2002, Jim Romney was still able to sit upright at his dining room table, and though he spoke slowly to regulate his breath, his voice boomed at Hamilton's suggestion that depression may have impaired his judgment. "I am not depressed." he says. Sure I was very sad when I first learned I had ALS, but I look forward to every day.

     Romney may be an exception, meaning he is an ideal PAS case, opponents of the law concede. But in reality, they say, most cases of assisted suicide betray troubling issues of family and financial pressure. Ethicist and co-founder of the Hastings Center in New York, Daniel Callahan contends, "The belief that assisted suicide can be safely regulated is a myth. The confidentiality of the doctor patient relationship make it impossible to provide adequate oversight."

     Callahan insists it's a slippery slope from physician asssisted suicide to abuses in doctors discretion. Just look at the Netherlands he says. There PAS and euthanasia have been acccepted practices since the 1980, and 3,300 people do it every year. But critics in the United States say that a lack of systematic official oversight invites abuse. In about a third at the Netherlands cases, for example, terminally ill patients judged by their doctors not to be mentally competent were nonetheless administered lethal medication without their permission.

     In Oregon, critics of the law say the case of Kate Cheney illustrates the pressures inherent in most patients' decisions. At 85, Cheney with terminal stomach cancer, knew the end of her life was near. She asked a doctor at Kaiser Permanente in northwest Oregon for a prescription to kill herself. Her daughter, a former nurse who had come from Arizona to assist her mother, thought the initial doctor who said Cheney appeared to be suffering from dementia was "dismissive" of her mother's request. She asked for the opinion of a second doctor, who then arranged for psychiatric evaluation.

     The results showed that Cheney lacked "the very high level of capacity" required to weigh her end of life options, and lethal drugs were again denied. At that point, Cheney's daughter "became very angry," the psychiatrists report indicated, and PAS critics who know the case said she then "shopped" for a new doctor who would say yes. Kaiser's administrators ordered a second assessment, which found Cheney was capable of making such a decision. A month later, at home and surrounded by her family, Cheney took the medication and died.

     "Advocates of the law say assisted suicide is about individual rights," Dr. Hamilton says, "but when you get right down to it, assisted suicide does not take place in a vacuum. It involves families, doctors, sometimes HMOs, which means it involves outside pressures, including financial pressure."

     Dr. Robert Richardson, who heads Kaiser's Ethics Services and oversaw Cheney's case, says, "This was not a daughter-directed decision. It was Kate's decision. I spent time with her and clarified this for myself. I can also tell you that assisted suicide does not save money."

     The concern that managed-care professionals might recommend assisted suicide as a means to save on medical costs was investigated in a study published in the July 1998 New England Journal of Medicine. This study looked at the proportion of medical costs that might be saved by measuring the amount of time a patient's life might be shortened if the PAS option was exercised. Relying on statistics from the Netherlands (the only place where enough time had passed to look at cases in a measurable way), the New England Journal of Medicine study concluded that approximately 62,000 patients would choose PAS each year in the United States were it legalized nationwide. The study estimated that most patients would forgo an average of four weeks of life, which translated to a small savings of $10,118 (in 1995 dollars), or approximately .07 percent of all health care costs.

IN 1997, THE US SUPREME COURT ruled there was no constitutional right to physician-assisted suicide, but permitted each state to decide whether to legalize it. That decision paved the way for Oregon's Death with Dignity Act. But in 2001 Attorney General Ashcroft argued that the hill violated the DEA's Controlled Substances Act, which allows doctors to prescribe drugs only for "legitimate medical purposes."

     The state of Oregon sued to block Ashcroft's directive, claiming this was a state matter in which Washington had no jurisdiction and Jim Romney volunteered to be one of the suit's plaintiffs. In written declarations filed in Oregon's federal court, Romney and other patients and family members told their emotional stories. One mother recounted how her 26-year-old daughter begged her to kill her when the pain of her bone cancer became unbearable. Marcia Angell, a lecturer in social medicine at Harvard Medical School, told 1988 how her 81-year-old father took a pistol from his bedside table and shot himself. Diagnosed seven years earlier, prostate cancer had spread throughout his body and he had excruciating back pain. "He knew he had nothing to look forward to except further decline and a protracted death," Angell says. "Had PAS been available to my father, I have no doubt he would have chosen a less violent, lonely death." Critics of the law might add that if effective pain management had been available to Angell's father, he might have chosen to live.
     On April 17, 2002, Judge Robert F. Jones ruled in favor of the Oregon plaintiffs. but six weeks later, Ashcroft filed an appeal. A hearing in the 9th Circuit Court of Appeals will take place this month. The loser will likely appeal, which could again put the issue before the U.S. Supreme Court.

SINCE 2001, Rhode Island, Wisconsin and New York have introduced assisted-suicide bills in their state legislatures but none have passed. Hawaii and Arizona have bills pending. Vermont has two bills - one that would legalize PAS, and another that would outlaw it. So far "the issue has been defeated in every place it's come up and the movement is on the ropes." says Dr. Greg Hamilton.

     Compassion's Barbara Coombs Lee disagrees : "I have no doubt that after I'm gone, we'll look back at this whole debate and see this was a movement whose time had come."

     But even without assisted-suicide laws in place, says Akron psychologist James Werth, "Everybody knows it happens with a wink and a nod."

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