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A DEATH OF HER CHOOSING
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GHOSTS IN THE CHAPEL
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A Death of Her Choosing
As the law that made it possible is threatened, two sisters remember their mother’s decision to die.

It was a Thursday in January. Outside the window, white winter sunlight hung like cloth in leafless trees. A few yards away, the river slid past with the low shine of liquid metal. No sound from the cars crossing the nearby bridge entered the bedroom.

The woman in the bed, 68 years old and full of cancer, loved this view of the Willamette River in every season. Loved water of any kind, especially the ocean. Moments before, a poem by Annie Dillard about being enveloped by the sea had been read into the quiet space.

Surrounding the bed were the woman’s five children, their spouses, her sister, a nephew, and the woman’s longtime physician. If there was sadness in the corners of the room, love filled its center. Downstairs in the kitchen, a volunteer slowly opened 90 capsules of secobarbital and mixed a lethal dose of the fast-acting barbiturate into a glass of liquid.

The woman’s son began to read the 23rd Psalm—the woman was not religious, but nonetheless had asked to hear what she appreciated as words of comfort and an exceptional poem. Just before “the valley of the shadow of death,” she stopped him with some annoyance.

“That’s not the right version,” she said. “I want the King James.” Her children smiled. For those who knew this intelligent, fiercely independent woman, the moment was perfectly hers. The people of Oregon are well known for using the ballot to steadfastly protect what they hold dear—old-growth forest, bottle-free roadsides, their refusal to pump their own gas—and even the right to die on their own terms.

Growing up in Portland, Ellen Sutherland Baltus ‘82 and Julie Sutherland McMurchie ‘85 took this willingness to be the first to pass limit-pushing legislation for granted—until 1994, when Oregon became the only state in the nation to approve a law allowing physician-assisted suicide for the terminally ill. That’s when their mother, Peggy, first talked about choosing the manner of one’s own death.
Peggy Sutherland was born in Pennsylvania and raised in a conservative home in the privileged enclave of Philadelphia’s Main Line. She grew into a strong-willed young woman, a philosophy major and psychology minor at Mt. Holyoke College. She married a man who became a cardiologist, and they had five children, each a year apart. She raised her family in the soft rain and deep green of the Willamette Valley, and she brought them up to be fearless and straightforward about life—and, it would turn out, death. Sutherland’s only serious mistake was to smoke three packs of cigarettes a day.

Baltus and McMurchie remember the moment in May of 1986 when their mother was first diagnosed with lung cancer. They remember how calm she seemed. They remember the invasive surgery that removed a lobe of her lung and their mother’s pain during her long recovery. Eventually Sutherland was pronounced cured and went on with life. She never smoked a cigarette again. Never really talked much about the cancer.

Sutherland divorced in 1994. Always an organized, detailed-oriented person, she immersed herself in stocks and investing, telling her daughters that she wanted to have her own means, never to be a burden on her family. Later that year, when Oregon’s controversial Death with Dignity Act was first passed, she mentioned how wonderful it was to live in such a progressive state—a place where a person who had reached the end now had the freedom to control that end. It was an idea, and a law, perfectly matched to the kind of person Peggy Sutherland was. Today, Oregon’s law is under attack from a powerful foe: the Bush administration. The debate begins with semantics.

Physician-assisted suicide is the term used by most of the public and the media. Death with Dignity is the official title of the law—which has in fact been affirmed twice by Oregon voters: the 1994 act was challenged in 1997 and was upheld by a 60/40 margin. Supporters call it compassionate, enlightened, and freeing. Few use the word “suicide.”

Barbara Coombs Lee, of the nonprofit organization Compassion in Dying and one of the original sponsors of Oregon’s law, writes: “Let's make these distinctions clear: Suicide is a violent, desperate act the dying might resort to when they feel trapped and locked in the torture chamber of their illness. It isolates the patient and leaves survivors shattered by guilt and anguish. Physician assistance in dying is the direct opposite, a key to the door of that locked room and a way to keep family and loved ones close during a most intimate time. Providing the key can prevent violent and premature suicide, because it gives the suffering patient peace of mind about the final moments and the courage to go on living for a while longer.”

Opponents, on the other hand, call the practice medically illegitimate, a slippery slope, and even immoral. They have no trouble with the s-word.

“I refer to it as ‘doctor-ordered suicide.’ That’s a more realistic description of what it actually is,” says Kenneth R. Stevens, M.D., president of the group Physicians for Compassionate Care, leaders of the local medical opposition to Oregon’s law. “The act of writing a prescription is not a passive thing. It is a written order, a directive to the patient. By writing a prescription for a lethal dose of medication, you’re not pulling the trigger, but you’re giving the patient the loaded gun.”

“That is such an antiquated notion of the doctor-patient relationship,” Lee responds. “Patients today regard physicians as wise counsel and trust them to give their patients power to make their own decisions based upon the physician’s best recommendations. Oregon’s law allows, but does not require, physician participation. When numerous safeguards are met, a doctor is authorized—but absolutely not required—to prescribe life-ending medication that the patient may then self-administer at a time and place of his or her own choosing. The option should be fully integrated into compassionate end-of-life care.”

But Stevens argues that physician-assisted suicide does not serve a legitimate medical purpose. “The ethical and moral statements that are part of a physician’s training indicate that we are not to take the life of a patient,” he says. “It is contrary to our ethics, and an assumption of power that physicians should not be given. Look, there is no law against committing suicide, but that’s not what this act is about. People say they want the right to die, but really what they’re saying is ‘I want someone to kill me.’ Everyone has the right to die, but trying to legitimize this by making it a medical practice is improper.”

The American Medical Association has been solidly against physician-assisted suicide from the beginning. Its position includes the assertion that the practice “would undermine the physician-patient relationship and the trust needed to sustain it, would alter the role of physicians in society, and would endanger the value our society places on life.”

It is clear that physician-assisted suicide, like abortion, places doctors on the exposed and shifting front line of a white-hot moral issue. But even beyond the proper or improper role of physicians, opponents fear that with assisted suicide in place, the aged or infirm could be “coerced” to die by family members, or that social pressures might evolve from the right to die to the duty to die. Others are afraid the practice invites abuses, especially in the case of mentally or economically challenged patients.

But many ethicists, even those personally opposed to physician-assisted suicide, are beginning to believe that these fears are unsupported.

One example is Daniel Lee (no relation to Barbara Coombs Lee), an author and ethics professor at Augustana College in Illinois. Lee has long been staunchly opposed to physician-assisted suicide. But in recent years, the reality of the Oregon law and its results have led him to ask what are, for him, difficult questions.

“Do those of us,” Lee writes, “with deep reservations about the morality of physician-assisted suicide have any business using the coercive power of government to try to prevent those who disagree with us from doing what they believe is right? Are there any compelling arguments to justify placing legal roadblocks in the way of terminally ill individuals who wish to end their suffering by ending their lives, provided such decisions are made only after thoughtful, careful deliberation in an environment devoid of social pressure?”

Lee makes the point that Oregon’s law “specifies an elaborate procedure consistent with the most rigorous standards of voluntariness,” with provisions, including the 15-day waiting period and multiple opportunities to rescind the request, intended to make it very clear to those contemplating ending their lives that they are under no pressure to do so. When physician-assisted suicide is presented in this cautious, completely voluntary manner, it is, in Lee’s opinion, a matter of individual choice, not a decision forced or influenced by social pressure.

“There is another firewall—one that is also built into the Oregon law—that might be even more significant,” Lee adds. “This is the requirement that lethal drugs be self-administered, rather than administered by the prescribing physician or anyone else. If physicians, family members, and others are prohibited from administering lethal drugs to terminally ill patients, and that restriction is rigorously enforced, nonvoluntary euthanasia is precluded.”

Lee concludes that “the arguments in favor of continued prohibition of physician-assisted suicide are not particularly compelling. Those of us opposed to it would do well to focus our efforts on helping others discover the meaning and hope that are possible in life. If we were to do a better job of responding to suffering individuals in a loving, caring manner, physician-assisted suicide would in all likelihood be an option rarely, if ever, chosen.”

And that is the one place in which supporters, opponents, and the reality of Oregon’s law itself find agreement: very few people want to die. Early in 2000, Peggy Sutherland read a magazine article about improved CT scans and simply decided to have one. She had no symptoms, no problems. But the scan revealed more lung cancer—a different form, unrelated to what she’d had 14 years before. Another surgery was done, and several weeks later a follow-up scan was scheduled. McMurchie and Baltus were with her when the results came back—the CT showing cancerous hot spots like spiders’ nests throughout her lungs.

“We were sitting in that little room,” McMurchie remembers, “and when the results came back Ellen and I fell apart, but mom stayed so controlled. I think that in the back of her mind she’d been expecting it ever since the first cancer.”

In April of that year, a third lung surgery was performed, more extensive than the first two. Although the surgeon again declared her cured, Sutherland didn’t recover quickly or well. It was during this time that one of her sisters was diagnosed with an advanced case of the same cancer that plagued Sutherland. Over the summer, she watched her sister weaken and die: hospitalized for three months, at the end having no control over her bodily functions and in great pain unrelieved by the morphine.
“It was a very grim experience, and it’s clear my mom didn’t want that for herself—or us,” says Baltus. “She was very much into open communication about tough issues, and she began talking about assisted suicide even before her final diagnosis.”

Sutherland, far from cured, was diagnosed as terminal in August 2000. Through the late summer and fall she underwent different therapies and rounds of palliative care. As would be expected for a woman whose ex-husband, son, and one daughter were all physicians, she got the very best that medicine has to offer. And, as would be expected in a family with so much medical expertise, everyone was realistic about the fact that medicine couldn’t offer much.

“She made all of us sit down with her and talk about her estate and how she would take care of everything, how she wouldn’t be a burden,” McMurchie says. “I tried to get her to move in with me, but she would have none of that. She was feeling okay, still very much present in her life. She was religious about her Friday morning bridge game, and going to the weekend house at the coast. For those last few months, she was fully alive.”

And then one day in the middle of December Sutherland awoke and couldn’t get out of bed, could barely sit up. The pain was intense. She would never get out of bed again. An ambulance took her to the hospital, where she spent the next three weeks. A morphine pump was implanted in her body, but a dose of the drug large enough to kill the pain made her unconscious. Suffering or out cold—nothing in 21st-century health care offered a third choice, and to a woman like Sutherland this was not life.

McMurchie and Baltus remember spending a dark New Year’s Eve in the hospital with their mother and the rest of the family. In early January, Sutherland was sent home and hospice care was arranged. She had endured three major surgeries, three hospitalizations for pain, two rounds of chemotherapy and radiation, and countless CTs, MRIs, PETs, and bone scans. The day after she returned to her view of the river, Sutherland looked at her children and said quietly, “I’m done.” Since 1998, about one in every 1,000 deaths in Oregon has been by assisted suicide; by the end of 2002, a total of 129 people—fewer than proponents expected and opponents feared. Data from the Oregon State Health Division show that most who chose this route were older, well-educated, insured, enrolled in hospice care, and suffering from terminal cancer or amyotrophic lateral sclerosis. Almost all died at home; roughly half had a physician present. Most became unconscious within 10 minutes and died within 30 minutes; one took 37 hours.

Their three most common end-of-life concerns were loss of autonomy, decreasing ability to participate in enjoyable activities, and loss of control over bodily functions.

It is often argued that better pain relief would make assisted suicide unnecessary, but Oregon’s results don’t support that contention: fewer than one in four who chose the option said they feared inadequate pain control.

In 2002, 58 prescriptions for lethal medication were written by 33 Oregon doctors. Of the patients who received the prescriptions, 36 died from the drug, 16 died from their disease, and six were still alive at the end of the year.

The 38 Oregonians who died by assisted suicide last year (two patients died using prescriptions they received in 2001) represented an 81 percent increase from 2001 and a five-year high. It is far too soon to tell whether that number is a statistical aberration or the beginning of a trend, but it will no doubt add fuel to the fire—and urgency to U.S. Attorney General John Ashcroft’s attempt to dismantle Oregon’s law.

Ashcroft ruled in November 2001 that the Death with Dignity Act was a violation of federal drug laws (the barbiturates used are DEA-controlled substances) and authorized federal agents to prosecute Oregon doctors who prescribe lethal doses. Ashcroft’s legal challenge was subsequently rejected by a U.S. Circuit Court judge in April 2002, and the law remained in effect. The Bush administration appealed, arguments were being heard in the Ninth Circuit Court as OAM went to press, and by the time you read this, a decision may have been rendered. Some 25 amicus curiae briefs were filed on both sides of the case, with hundreds of signatories—everyone from the relatives of people who chose assisted suicide (including McMurchie and Baltus) to physicians to legal experts to politicians.

Regardless of whether Ashcroft’s appeal is rejected or upheld, this case will very likely find its way slowly but inexorably to the U.S. Supreme Court—where proponents see hope in the sanctity of states’ rights and opponents see hope in what many view as the court’s increasingly conservative and political nature. In the meantime, throughout the appeals process, Oregon’s law will probably remain in force. According to Compassion In Dying’s Lee, “While the ball’s still in play, the courts tend to favor the status quo.”

It could be as long as three years before the issue reaches the Supreme Court. Terminal illness, on the other hand, tends to be in a bigger hurry. After Sutherland announced her decision, and after her physician son and daughter took some extra time to come around to it, her family supported her.
“We talked to our internist, because we didn’t know anything about assisted suicide,” Baltus remembers. “He put us in touch with Compassion In Dying, and they sent us the paperwork and talked us through it.” The organization then made available a team of volunteers, including experts in mental health and end-of-life care. As Compassion In Dying makes clear, information about obtaining medication for a hastened death “is provided only to those patients who, in the judgment of the case managers, demonstrate a rational, voluntary, and considered approach to end-of-life decisions.”

Once Sutherland’s physician had certified that she was terminal, Sutherland herself made both an oral and a written request for the medication in the presence of two witnesses (one of whom must be a non-relative). Two physicians then had to certify in writing that she was of sound mind and not depressed. She was informed of every end-of-life care option available and of the realities of the life-ending medication. At every step she was offered a chance to change her mind. A 15-day waiting period then began. This was the most difficult time for Sutherland and her family.

“I wish we had requested the medication sooner,” says McMurchie. “The whole time she was in the hospital we were so focused on her living longer. None of us wanted assisted suicide. You even, under the surface, hope she’ll die without needing it. Not acting sooner is my one regret—the waiting period is a good thing, but by then mom was ready to go, and those final two weeks were very hard. She was in great pain and the only way to control it was to knock her out, which she didn’t want. She never really slept at night, she was seeing things, having lots of problems with bowel control, coughing up blood. She would wake up moaning, saying that we ‘just didn’t understand the kind of pain she was in and why wouldn’t we just let her go.’ She spent a lot of time crying, her dignity was gone, and still we had to wait.”

At last the final request was made. The day before, Sutherland had slipped into a near coma, and the family thought how terrible it would be if, after waiting for 14 days, she wouldn’t be able to communicate. But on the morning of the 15th day, Sutherland suddenly awoke clear as a bell, more aware and talkative than she’d been for a month.

McMurchie went with Sutherland’s doctor to pick up the prescription. There are only two pharmacies in the entire city that will fill a lethal prescription, so it was a long drive. The pharmacist wouldn’t look at them while they paid for the drugs.

“People don’t understand how much this has to be the individual’s own choice under the Death with Dignity law,” says Baltus. “There’s nothing impulsive about it. The person has to be aware and in control. I don’t know even now what I’d do in my mother’s situation, but it was a choice that made sense to her, that was totally consistent with who she was. She had been thinking it through for a long time.”

“I think this was an amazing gift for our family,” McMurchie emphasizes, “that we were all able to be there together and say good-bye. Simply having the option for death with dignity allowed my mother and our family to spend her last moments really having a relationship. Really living, not just standing a deathwatch. It was her final deliberate, graceful act.” Cars flowed over the gray-green arch of the bridge. The river’s cold current pushed north, past the trees on the far shore, past the boats moored below, past the bedroom.

The people around the woman in the bed had read to her, hugged her, kissed her. They would forever remember the moment as peaceful, loving, profound. There were no intense good-byes—this was Peggy Sutherland’s ritual and she wanted none of that. Besides, they’d all been said already.
But when the glass containing the barbiturate was placed beside her bed, and Sutherland grabbed it and brought it to her lips like lemonade on a hot summer afternoon, her children involuntarily jumped forward.

“Jeez, mom, can you just wait two seconds?” someone said.

But Sutherland was ready. She drank the liquid, closed her eyes, and fell asleep in three or four minutes. The room was silent; a few people left. After perhaps 15 minutes, her doctor stepped forward and took Sutherland’s pulse. Not yet, he indicated. Ellen Baltus decided then that she would stay with her mother until the funeral home people came—for some reason she just couldn’t stand the thought of her lying there all alone.

Another minute or two, and the doctor took Sutherland’s pulse again. He nodded to her family. He recorded the time of death: 10:23 a.m. It was a Thursday in winter, January 25, 2001.

   
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