Jim Romney was a supporter of a controversial Oregon law permitting doctor-assisted suicide. He never thought, however, that he would need to call upon that law himself. Then last June, Romney, 56, a retired school principal who lives with his wife, Kathy, 52, in the Portland suburb of Clackamas, was diagnosed with ALS, more commonly known as Lou Gehrig's disease. ALS patients rarely live more than two years after diagnosis. And Romney's doctors made it clear that the disease would ravage his body, leaving him totally paralyzed even as his mind continued to function. Hearing that, he felt a certain sense of calm knowing that when the ordeal became unbearable he would legally be able to end his life with physician-provided barbiturates. "There's humanity in that," he says.
Not according to U.S. Attorney General John Ashcroft. In a memo on Nov. 6 Ashcroft defiantly declared that assisted suicide was not "a legitimate medical purpose" and directed agents of the federal Drug Enforcement Administration to revoke the drug license of any doctor participating in it. The move effectively nullified Oregon's Death with Dignity Act, the country's first doctor-assisted-suicide law. Since it went into effect in 1997, at least 70 terminally ill Oregonians have ended their lives under its aegis; some 26 others have obtained the necessary drugs.
"I'm devastated that that choice is gone now," says Romney of the Attorney General's action. "The idea that at some point I won't be able to swallow, won't be able to breathe and my bodily functions will be out of control is awful. I just can't imagine my wife coming home from work and having to bathe me after my own mess. When a person is faced with a really ugly terminal illness like ALS, there's no dignity in dying."
A federal judge has put a restraining order on Ashcroft's decree until Nov. 20, pending a hearing on a lawsuit brought by four terminally ill patients, including Romney. Their argument: that the federal government cannot override the results of a state initiative. The Attorney General's action has stirred a furor in Oregon and elsewhere, where states-rights as well as right-to-die advocates are incensed at what they see as an unwarranted intrusion into the doctor-patient relationship. "The federal government," says Kathryn Tucker, legal director for the Compassion in Dying Federation, "should not be permitted to intervene and control end-of-life decisionmaking." Moreover, Ashcroft critics say, the move comes at a time when the government should be fully focused on bioterrorism threats. "The Attorney General is supposed to be figuring out who's responsible for the anthrax," said Oregon's Democratic governor, John Kitzhaber, who is also a physician. "To introduce this divisive issue at this time is just, to me, unthinkable."
Even in the face of a suit by patients, the Attorney General's office will continue to press against assisted suicide, and Ashcroft does have supporters in the state. Dr. Gregory Hamilton, a psychiatrist in Portland who is a cofounder of Physicians for Compassionate Care, an anti-assisted-suicide organization, argues that powerful interest groups like HMOs have embraced the 1997 law because it reduces their costs for treating the terminally ill. In his view the real way to deal with such patients is through the aggressive use of pain-relieving drugs. "If they had a good doctor, they'd be all right," says Hamilton. "Killing your patients instead of treating their pain or depression is not medical treatment. It's that simple."
Then again, there is nothing simple about facing impending death, as Richard Holmes, 72, can attest. Diagnosed in 2000 with colon cancer, which spread to his liver this year, Holmes, a retired salesman from Portland, has been told he now has less than six months to live. So far he is feeling okay. His skin is yellow-tinged from the cancer, he tires easily, and he has started to have some discomfort in his abdomen, but last month he took a trip to Las Vegas with his son Rick, 48, a physician's assistant (which means he can perform many of the duties of a doctor). But Holmes knows the day is coming soon when the pain will intensify, and it fills him with dread. "I've had a great life, and I wish it could go on," says Holmes, who is divorced and also has a daughter, Cindy Marie Taylor, 43, an ice-skating instructor. "But it's at the point of inevitability. I've fought as long as I can. I can't do anything more."
The one thing he is trying to do is get his lethal prescription written and filled before Nov. 20, when Ashcroft's ban may go into effect if the judge rules against Holmes and the other plaintiffs. He isn't sure when or if he will use it, but he says he will feel more secure just having the drugs. "Let me drink a little bit of stuff and go to sleep. It makes a lot more sense than trying to shoot myself or drive off a bridge or gas myself in the garage," he says, tears welling in his eyes. "The God I believe in says that's okay. Maybe Ashcroft's doesn't."
In practice, assisted suicide is more complex than simply drinking a small potion. Under the Oregon law, two physicians must confirm that a patient has less than six months to live. The patient must then wait 15 days and consult again with his or her doctor before getting a lethal prescription, usually for barbiturates such as Seconal. If at any time either of the doctors involved believes that the patient's judgment is impaired by depression, the patient must see a licensed psychologist or psychiatrist of his or her choosing. When the patient decides to take the drug, a doctor may be present but is not required to be. The law stipulates that the lethal dose must be self-administered.
Initially even some experts sympathetic to the notion of assisted suicide had qualms about the Oregon legislation. Their concern was that doctors might be too willing to hand out lethal doses of medication. "But those of us who were a little skeptical have been proved wrong," says Dr. Sherwin Nuland, a bioethicist and clinical professor of surgery at Yale University, and author of 1995's bestselling How We Die: Reflections on Life's Final Chapter
. "It turns out the law has worked beautifully," says Nuland, who adds, "To be very basic about it, the question is, 'Is the doctor's primary responsibility to prolong life or to relieve human suffering?' No matter how good we get at pain management, there are always going to be a few people for whom we can do nothing and who are suffering unbearably."
One such patient was the pseudonymous "Helen," who in 1998 was one of the first people to die under the new law. "This was an 84-year-old woman with recurrent breast cancer who had two months to live," says Dr. Peter Reagan, 55, a family practitioner in Portland to whom she was referred. "She had had breast cancer for 24 years by the time she died." Reagan assisted in her death and has been a firm supporter of assisted suicide, but he acknowledges experiencing a certain uneasiness, even guilt, over doing so. "How can one not?" he asks. "When you do something that a lot of reasonable people think is wrong, you can't help but at least reexamine what you did."
But he, like other advocates, believes the alternatives are even more disturbing. Dr. Peter Rasmussen, 56, an oncologist in Salem, recalls a patient he had before the law was enacted, a woman with terminal ovarian cancer who asked for help in ending her life. But under the law there was nothing he could do. He later learned from a family member that she had killed herself, but that she had taken drugs that worked slowly and had lingered in pain longer than was necessary. "I failed her," says Rasmussen. "That bothered me." Since the law went into effect, several of his patients—he won't be more specific—have opted for assisted suicide, and he has been present each time. "They've all been very peaceful and uneventful," he says.
Even with the advent of the Oregon law, some patients are reluctant to ask a doctor for help at first. In January of last year, for example, Joan Lucas, a 65-year-old former gas company employee in Medford, was suffering from ALS. Not wanting to burden her family with taking part in an assisted suicide, she had on her own taken the powder of dozens of sleeping capsules she had hoarded over the months. She left a scrawled note to her family on her nightstand. "I'm so sorry to put you through this," it said, "but I cannot face being a vegetable. I know it's the cowardly way out and I know you would have taken care of me until the end, but I just could not face the idea." She thought she had taken a lethal dose, but her daughter Mary, 46, found her and called the paramedics, who saved her. Joan, however, was anything but grateful. "Why did you stop me?" she wrote to her family after recovering, still unable to speak. "It isn't fair. Get me a gun."
Instead, they began the process for ending her life under the Oregon guidelines. The toughest part for Lucas was making sure that she could down all the lethal barbiturates in under a minute, given the fact that her ability to swallow was severely limited. If she took longer than a minute, she ran the risk of slipping into a light coma and then lingering just short of death. So for weeks she practiced swallowing enough pudding to hold a lethal dose of drugs in under 60 seconds. On the morning of Feb. 3, 2000, she said her last goodbyes to her family and this time took the pudding with the barbiturates. Within an hour she was dead. "It was a day in purgatory for us, the most difficult thing I've ever been part of," says her son Gary, 44. "But in a way it was the most beautiful, loving thing I've ever seen."
Salem oncologist Rasmussen fears that Ashcroft's ban, if it is allowed to stand, will even inhibit doctors from dispensing aggressive doses of pain medicines. DEA inspectors, he reasons, might try to allege that such treatments, which can inadvertently result in death, are really attempts to continue providing assisted suicide under the cloak of pain management. "It will have a chilling effect," he says. "The thought of having a drug-enforcement agent looking over our shoulders, trying to decide what was in our minds when we were prescribing medication, is a very uncomfortable feeling."
But supporters of the Ashcroft ban dismiss that notion out of hand. "That is absolutely not true," says Hamilton, the Portland psychiatrist, who points out that the Attorney General's order specifically stated that aggressive pain management would continue to be protected. As for the timing of Ashcroft's move, which puzzled some legislators, backers of the Oregon law believe that the Attorney General is fulfilling a campaign promise made by President Bush last year to have the statute overturned, an item long on the wish list of the religious right. (At present, no other states are considering similar laws.)
One thing that is clear is that some terminal patients feel a great, comfort just in knowing that they have the option of assisted suicide. The family of Colleen Rice, a small-business owner in Portland suffering from an inoperable lung tumor, describes how liberating it was for her to forgo the rigors of chemotherapy and instead devote the last three months of her life to completing a first novel, an 18th-century historical adventure that she had been working on for 13 years. "She knew time was running out, and she knew she needed all her remaining strength to finish what was important to her," says her husband, Scott, 52. Last Dec. 13, when she was done with the book, she took a lethal dose of medication and died at age 67.
For Jim Romney, the retired school principal with ALS (who isn't yet eligible for a lethal prescription because he's expected to live more than six months), the benefits of assisted suicide are clear. Even his wife, Kathy, who is a strong Christian and says she would never choose that course for herself, is onboard. "I told Jim I'm here for him, and I'm going to care for him as long as he lives," she says. "If he's in terrible pain, I will support him in his choice." Assuming that the legal battle in his state, which could drag on for months or more and go all the way to the U.S. Supreme Court, is resolved to his satisfaction, Romney has no doubt what that choice will be. "To die with dignity is very important," he says. "It's liberated me to enjoy my life. I don't think about how I'm going to die."
Alexandra Hardy and Ron Arias in Portland, Champ Clark in Los Angeles and Andrea Billups in Washington, D.C.
- Alexandra Hardy,
- Ron Arias,
- Champ Clark,
- Andrea Billups.