As Oregon becomes the only place on Earth with a law allowing physician-assisted suicide, a retired school teacher struggles with terminal cancer--and his decision to find. . . : A Legal Way Out

Even after he got sick, even after he’d been fighting the cancer for years longer than doctors expected, Mark Kobayashi didn’t think about dying. He always tried to control his body with his mind. Shortly after having a third of his colon cut out, he was sitting up in bed like a king. I have to put all my energy down into my stomach so I’m healing, he declared. He didn’t want to have bad thoughts. He didn’t even want his wife, Joan, to have bad thoughts. Stop that, he’d tell her, you’ll weaken me.

Now, though, he was lying in an Oregon hospital bed, barely conscious, wracked by pain, drained by hours of vomiting. It was early this year. His planned two-day stay in the hospital for a catheter implant had stretched to six. His body had gone into shock. They couldn’t get the medications right. They couldn’t stop the vomiting. Tumors filled Mark’s lungs and spread along his spine; the most unbearable clenched his hip near the sciatic nerve. Peering up from his bed, he could see a young doctor standing over him, making small talk to a nurse.

Mark was 67, a retired elementary school teacher revered by his students. Friends knew him to be calm, centered, unafraid of making decisions, gloriously free of baggage. His wife of 34 years thought him that rarity, a truly happy man.

He’d lost the battle, he saw that now. He was closer to the end than he’d thought. It was nearly time to go.

You deal with things when they come up, not before. That’s what he always told his wife. Dying had finally come up.

“I’m not going to go through this again,” Mark told those gathered around his bed. “I want to talk about a legal way out.”

For a moment, the hospital nurse didn’t understand. A legal way out of this procedure? she asked.

No, Mark’s son, John, explained. He means a legal way out of life.

So began--for patient, relatives, doctors, nurses and counselors alike--one more pioneering encounter with Oregon’s unprecedented Death With Dignity Act.

Oregon is the only place on Earth that has a law offering patients the option of physician-assisted suicide. When Mark Kobayashi first spoke from his hospital bed about “a legal way out,” the statute had been on the books for just 15 months and had been in use for less than a year. During that time, 15 people had invoked the law, dying after taking lethal medications prescribed by a doctor.

Those deaths have done little to diminish the furor over the Oregon statute. After three years of court battles and two election-day victories, physician-assisted suicide continues to provoke highly charged ethical, legal and medical debates. Across the country, the notion of doctors legally helping patients die has generated as much divisiveness as any societal issue in recent decades. It has been called everything from “the abortion issue of the next century” to “this century’s civil war.” It has enraged the American Medical Assn., the Roman Catholic Church and the U.S. Congress. It has galvanized priests, lawyers, pundits, legislators, professors, regulators. Most recently, it has inspired a powerful counterattack: On Oct. 27, the House of Representatives passed a bill that would effectively overturn the Oregon law.

Yet--as Mark Kobayashi demonstrated--physician-assisted suicide in Oregon is no longer a matter mainly for abstract debate. Now the matter rests chiefly in the hands of patients and families, doctors and nurses, hospices and pharmacists.

Those asked to implement Oregon’s statute are still feeling their way. Although legal, the process of helping someone die has the covert feel of the underground. The advocacy group Compassion in Dying operates out of an unmarked Portland office rather than the address on its letterhead. Those few hospice nurses who attend their patient’s death do so secretly, not as professionals but as family friends. Many doctors are unwilling to participate in any way. Of the handful who do, only three have publicly acknowledged assisting a suicide.

Such hesitancy and confusion is not hard to fathom. Oregon’s Death With Dignity Act has dragged onto the public stage a complex, ambiguous, intensely personal matter that for centuries has been handled privately between doctors and patients. It has first politicized, then codified, one of the most basic and enigmatic of human concerns. It has required Oregonians to forge their way through an ethical wilderness. It has asked a state to regulate what approaches the incalculable.

Yet it has done something else as well: It has empowered patients.

I want to talk about a legal way out. Talk Mark Kobayashi did. Soon enough, lying in his hospital room, he was listing those whom he wanted with him when he took his lethal dose.

His nurse from Mt. Hood Hospice, Margaret Ann Stochosky, agonized over her inclusion: Her hospice--committed to caregiving, pledged to “neither prolong nor hasten death”--didn’t allow such participation.

His son, John, winced: He didn’t want his dad to die that way. He didn’t like the whole idea.

His daughter, Anne, cried: She understood, that’s the way her dad had always been, but this was so very hard.

His wife, Joan, didn’t hear: Weeks later, she couldn’t recall that her husband had talked in the hospital about assisted suicide. Her main focus then was bringing him home alive. If we don’t get him out of here, she kept thinking, he’s going to die.

Dying wasn’t what concerned Mark, though. Retaining mastery over his own life, that’s what mattered. To those around him, Mark said: “I can’t wait to get the prescription . . . . Then I will have free rein.”

A Law is Born, a Life is Imperiled

They began together in a sense, Mark Kobayashi and the Death With Dignity Act.

Mark was out back at his house, mowing his lawn. The architects of Oregon’s landmark law were opening their first office and organizing Right to Die, a political action committee. Mark hoped to spend more time at his piano. Right to Die hoped to draft a ballot initiative allowing physician-assisted suicide.

It was late March 1993. Mark stopped mowing, came inside his house. To his wife, he said, “I think I pulled a muscle.”

He’d been feeling a little lethargic, but that seemed natural: Since retiring the previous year, he’d slowed down and relaxed. He’d also been spending a lot of time indoors, not moving around much, for it had been a bad winter. So even when they saw it wasn’t just a pulled muscle, even when they felt the bump on Mark’s side, the Kobayashis weren’t concerned.

Their doctor was, though. No, he said. It’s not a hernia and not your appendix. Let’s do an ultrasound.

They saw the tumor in his colon immediately. They operated within days, but the cancer had already spread to the lymph nodes. Doctors told him he had maybe 2 1/2 years to live.

No negative thoughts, Mark said, sitting up in bed. I am healing.

All through 1993, Mark underwent chemotherapy. All through 1993, Right to Die drafted and revised what would become Measure 16 on Oregon’s ballot.

Mark grew stronger. He had his cancer under control.

Right to Die also grew stronger. In a triumph of political pragmatism, they rejected those purists urging euthanasia by lethal injection. Instead, they fixed on a measure that required patients to self-administer their prescriptions. They derived their initiative not from philosophy but the community. They needed 66,700 signatures to qualify for the state ballot. By July 1994 they had 95,000.

Ever the teacher, Mark followed Measure 16’s progress with keen interest: the 1994 campaign, during which priests assailed the initiative from the pulpit and collected political contributions in Catholic sanctuaries. The Nov. 4 vote, when Measure 16 improbably squeaked out a 2-percentage-point victory. A federal judge’s Dec. 27 preliminary injunction blocking enactment of the law. The same judge’s August 1995 ruling striking down the measure as unconstitutional. The pending appeals to the U.S. 9th Circuit Court of Appeals. The contradictory arguments and articles.

Full of furor and confusion, the aftermath never seemed to end. From all quarters came a cascade of questions:

How to regulate the unregulatable?

How to codify the private and personal?

How to prevent coercion against the defenseless?

What of the role for hospice nurses, for pharmacists, for doctors?

What of the value and meaning of life?

What of the slippery slope?

That last matter, above all: Granting social sanction to physician-assisted suicide, Measure 16’s opponents feared, would lead to routine euthanasia. Measure 16 was a free-for-all, offering no controls after the prescription got written. Measure 16 was a “ruse,” a “first step,” a “stalking-horse” for doctor-administered lethal injections.

What hubris, the measure’s critics called out. What hubris to think you can write laws to govern the human condition. What hubris to think you can write laws to govern this mystery called death.

Mark didn’t agree. He thought the Death With Dignity Act a wonderful idea. It would give people an option for how to conduct their death. For many people, he pointed out, that was important.

Not for him, though. He was viewing the issue only as a general Oregon voter. He wasn’t thinking of the law as something he might ever use. Mark had easily beaten the doctors’ 2 1/2 year prognosis.

The months and years passed, his feeling fine all through 1994, 1995, 1996. He built two decks at his home. He tended his garden. He took a job driving a school bus because he missed being around kids.

No bad thoughts, he reminded his family. I am healing.

A Careful Father, A Revered Teacher, A Simple Man Joan Kobayashi thought her husband such a lucky man. To be free of guilt, to possess such self-confidence--what that must be like. To think well of people, to believe in the capability of human beings--it must be so comforting. She, at 60, still wrestled with guilt and doubts, worrying over what was proper, what people thought. She could only imagine how Mark came to be the way he was.

His father, fearing he’d fail his university exams in his homeland, had emigrated from Japan to Seattle, where Mark was born. The family had a produce store and a business shipping vegetables to the Midwest. Then came World War II, and they lost it all. They were sent to an internment camp in Idaho.

Mark was 10 when he came to camp. He never ate with his parents anymore. When he got out at 14, his parents remained inside several more months. He lived with an older sister. In time, he met Joan. Then he became a father--a most singular father.

He’d chide Joan for getting upset at their two children when they forgot Mother’s Day. Why instill guilt feelings that serve no purpose, he’d ask.

When Anne and John were teenagers, Joan sometimes wanted to go hiking on a weekend day. Mark wanted to stay around the house. My kids don’t need me anymore except maybe 10 minutes a day, he’d explain. I want to be here when those 10 minutes come up.

He wasn’t the least controlling, though. He’d say to Joan, we tried to put everything in them we think right and now must hope it will take. He could back off, as only a confident person can, as only someone can who trusts himself and his children.

Trusting his kids didn’t mean he wasn’t watching. He was a careful man. He paid attention, especially when his daughter started dating.

About schoolwork he told his kids, if this is the best you can do, that’s OK.

Good parents are ones with interests, he liked to say. He himself had lots of interests. He could talk about everything--Nixon, Shakespeare, gardening. He was always reading, always learning more.

Everybody, he reminded his family, does things differently. When Anne announced she was going to dye her hair, he just asked: What will you do at college? There will be nothing crazy left for you to do.

Teaching, he told his kids, is the best profession. You can be your own person . . . . And you can see what’s coming out of your work.

Students sensed his spirit. When John attended the school where he taught, a girl one day asked if Mark Kobayashi was his dad. Yes, he replied. She said, he’s a tough teacher. He gives so much work . . . . But he’s such a nice guy, you just go ahead and do it.

Mark was good at getting people to talk, and good at listening. He could put himself on everybody’s level; he could learn from them and make them feel appreciated. He didn’t give advice freely or tell you what to do. You had to ask.

“I am a very simple man,” Mark liked to say.

And so, it seemed to Joan, was his dying.

Waking Up to a Radical and Uncertain New World

On Feb. 27, l997, the 9th Circuit reversed U.S. District Judge Michael Hogan’s ruling that had declared the Death With Dignity Act unconstitutional. The injunction against it remained in place, though, pending an appeal to the U.S. Supreme Court. Opponents of the measure now turned to the Oregon Legislature, which held hearings and pondered revisions all through the spring. Unable to agree about changes, the legislators instead voted on June 9 to put Measure 51, a repeal of the Death With Dignity Act, on the November ballot.

That same month, Mark’s cancer started to metastasize. It spread into his lungs and along his spine. He couldn’t walk without pain for more than three or four minutes. At their son’s wedding that summer, Joan knew something was wrong. In time, they learned an expanding tumor had broken Mark’s collarbone. His oncologist gave up, telling them there was nothing more to do except manage the pain.

Mark wasn’t ready to give up. He was “pretty willing to try the next thing.” Using the Death With Dignity Act, even if it were available, “was not on the horizon.”

Still, he followed the ferocious 1997 campaign over Measure 51. It was hard to avoid. High-pressure ads for and against filled the airwaves and billboards; doctors and patients spoke out on televised talk shows; repeal proponents flooded the state with grass-roots volunteers; citizens fired off round after round of letters to the editor. From one side, Oregon voters heard horrific stories about botched suicide attempts; from the other, fierce invocations against “right-wing religionists who are trying to push their views down your throats.”

What struck Mark was not these various arguments but the hefty out-of-state financing that supported the repeal effort. Measure 51’s proponents spent more than $4 million; their adversaries, just under $1 million.

None of it mattered. On Oct. 14, the U.S. Supreme Court turned down an appeal of the 9th Circuit ruling. On Oct. 27, the 9th Circuit formally lifted the injunction against the Death With Dignity Act. For procedural reasons, this wasn’t learned in Oregon until the evening of Nov. 4, election day. By then, voters had already spoken: They’d voted down the repeal effort by a margin of 60% to 40%.

Oregon woke up the next morning to a new world.

Now qualified residents suffering from a terminal disease could ask their primary physicians for prescriptions to end their lives. Patients’ families and doctors could be present at the end, but the patients had to take and swallow the medicine themselves.

The law didn’t allow any form of euthanasia. Those suffering a psychiatric or psychological disorder, or depression that causes impaired judgment, didn’t qualify. Nor did nonresidents. Doctors involved had to be licensed to practice in Oregon. Patients had to be diagnosed as having six months or less to live. Besides their primary physician’s approval, they needed a second consulting opinion. If their doctors thought it called for, they also needed a psychological assessment. They had to make two oral requests, at least 15 days apart. They had to make a written request, then wait 48 hours before getting the medication.

That much was clear. So much else wasn’t. The Death With Dignity Act was only six pages long, conveniently light on detail.

Doctors and other health care providers could legally refuse to participate--yet how to do so without abandoning their patients?

Just what level of assistance could someone provide a patient short of giving a lethal injection?

What about patients who can’t self-administer or swallow?

How to monitor and enforce what largely remained private?

How to judge the need for a psychological consultation?

In the days following the repeal effort’s defeat, the Oregon Medical Assn. scrambled to offer guidance to physicians. The Oregon Health Division rushed to devise emergency regulations. The Oregon Board of Pharmacy demanded that doctors flag prescriptions intended for an assisted suicide.

“For everybody, this is all new ground,” said James Kronenberg at the Oregon Medical Assn. Legal assisted suicide “has never been done before. It’s kind of a scary time.”

Only one matter seemed certain: Decisions were up to the doctors and the dying now, not legislators or judges. “It’s not a legal thing now,” said Dr. Bonnie Reagan, head of the ethics committee at Adventist Medical Center in Portland. “It’s personal morality.”

“Whatever Happens Now Is Up to Me”

In November 1997, just as the Death With Dignity Act took effect, the Kobayashis changed oncologists. The new doctor’s prognosis didn’t differ from the first’s, but his outlook did.

“Mark,” he said, “there’s nothing I can do for you, but I hope I can keep you alive until we find something. Or until your body can find something.”

Such words were a gift to Joan, if not her husband.

Mark didn’t need to hear this, she knew, but for her it was important. She was more negative than Mark. She needed the encouragement.

Who knew why? Some things you were born with. Others, Joan had to say, came from your family.

As a child, she feared her father, a school principal; she could never tell him what she thought. Her mother, a concert pianist with nine children, didn’t talk to her kids when they misbehaved. Do this, do that, that’s wrong, that’s right--her mom constantly drilled the notion of proper behavior into them. Guilt and doubts were her parents’ legacy, but Joan wasn’t mad at either of them. Sometimes she did wish she’d understood more when they were alive. She understood now, at least. Raising her own two children, she promised herself she would never stay angry at them overnight. This wouldn’t have occurred to her except for her mother. This was something to appreciate, something to be thankful for.

She got that from Mark: The idea of seeing the positive in an experience, not just the negative. The idea of learning something from experience, so you could do it differently the next time.

You can’t change entirely, though. Joan still had to tell herself not to rise in public buses whenever someone, even those younger than she, needed a seat. She still worried over what people thought; she still saw the negative in things. Yet she tried hard not to.

Now, for instance. Now, as her husband rallied once again.

Near the end of 1997, encouraged by their new oncologist, Mark started another round of chemotherapy. Soon he was up and around, playing the piano. Joan felt comfortable enough to take a weeklong trip to visit relatives. Together, they traveled to a family reunion, then to a wedding on the East Coast.

During the cross-country flight, Mark kept asking his wife to massage his back.

Why don’t you have your pain pills? she asked.

I packed them in the suitcase, he said.

Joan wasn’t surprised. That was Mark. Pain was something he thought away.

Not forever, though. By July 1998, the second round of chemotherapy had stopped working. They switched to yet another type, with no result. Near dusk one day in early October, Joan and Mark tried to walk a trail that wound into the mountainside near their home. From the parking lot, it was a 15-minute stroll, just one-quarter of a mile to a magnificent view of Mt. Rainier rising in a pink-purple sky. Mark couldn’t make it; there wasn’t enough air in his lungs. At this moment, Joan realized where they were.

Near the end of October, Mark halted all chemo. The side effects just weren’t worth it. “Whatever happens now,” he told his family, “is up to me.”

He still received acupuncture and natural remedies, not to cure the cancer, but to keep his immune system active. For a while, he could still walk to the couch, to the bathroom, to the car. By Thanksgiving, though, he was in severe decline.

December was awful. Mark started on oral morphine. No longer could he be stoic. They increased the morphine dosage; they gave him a cortisone shot in the spine. Still, they were always running behind the pain.

It’s time to stop fighting, the oncologist suggested. With reluctance, the Kobayashis heeded his advice. At the end of December, Joan called a hospice service. After a six-year battle, the talk no longer was of healing, only comfort.

“This Is Something to Talk to Your Doctor About”

As do most now, Mt. Hood Hospice in Oregon comes to the patient, providing at-home care rather than an in-patient clinic. A Mt. Hood nurse arrived at the Kobayashis’ house within hours of the family’s initial call. You must have no more than a six-month prognosis to qualify for hospice, she explained. Mark shook his head, saying, “I’m going to live longer than six months.” So the nurse left an information packet and departed. Forty-eight hours later, Joan called back. OK, she said. We want hospice.

The next day, registered nurse Margaret Ann Stochosky was at their doorstep. She began working the phone, calling doctors and pharmacies, demanding what they needed. A hospital bed, a wheelchair, oxygen--everything happened quickly. The Kobayashis, whatever their ambivalence about the statute, knew they were seeing the chief result of Oregon’s Death With Dignity Act.

By then, the law had been in effect for just over a year. Its most profound impact in those months had little to do with assisted suicide. The statute had led to only 15 planned deaths--but it had inspired a striking new emphasis on aggressive pain control and sophisticated end-of-life care.

Physicians who didn’t want patients to ask for assisted suicide became sensitized to the needs of the dying. Deaths in acute-care hospitals fell drastically; hospice and morphine use surged. The biggest change came in relationships: Physicians started listening to patients, and patients started making requests. A “wake-up call to medicine,” the medical ethicists called it. The statute’s “silver lining.”

The Kobayashis felt grateful.

“Hospice care is incredible,” Mark’s son, John, told visitors. “This is a big result of the Death With Dignity Act. Before we called in hospice, the process involved first getting to a doctor, then the technique doesn’t work, then you try to get to the doctor again. You start to wonder, Is it worth going back? Now with hospice, Margaret calls in the middle of the night to get the right prescription. Margaret instructs the doctors.”

Even so, Mark wasn’t content.

Many in Oregon and elsewhere believe greatly improved hospice care will alleviate the reasons patients turn to assisted suicide. Hospice, though, couldn’t give Mark back mastery over himself. Like most in Oregon who invoke the Death With Dignity Act, he was concerned not with pain as much as with autonomy. Early last January, he began asking Margaret about physician-assisted suicide.

The first time he raised it, they were alone; Joan had left the room after Mark said he wanted to speak privately with the hospice nurse. “Do you know anything about it?” he asked. “Would you be willing to talk to me about it? What role would hospice play?”

Margaret, 44, the divorced mother of six, has an open, radiant manner. Usually, words bounce out of her. Now, she searched for a response. Mark’s inquiry was pulling her--and Mt. Hood Hospice Director Lindy Blaesing--into treacherous territory.

The term “hospice” was first applied to specialized care for dying patients in 1967, at St. Christopher’s Hospice in a residential suburb of London. It now refers to a steadily growing practice of compassionate end-of-life care--either at home or at an in-patient facility--that addresses physical, social, emotional and spiritual needs. Hospice treats the person, not the disease. It offers pain and symptom control so a terminally ill patient can live as comfortably as possible.

The hospice ethos celebrates the dignity and value of the natural dying process; hospice neither hastens nor postpones death. For this reason, Mt. Hood’s policy directly forbids any involvement in assisted suicide. Yet certain hospices, it’s argued, walk a fine line with patients, increasing pain medication until there’s no pain, but sometimes no life. If hospice nurses aren’t inclined to assist in suicides, they also aren’t inclined to abandon patients.

Margaret felt baffled. She had voted for the act--”It’s easy to say people should have rights”--but when the law first took effect, she didn’t want to deal with it and didn’t think she’d have to. She couldn’t come to patients saying, “I’m a vehicle for death.” Yet she also couldn’t keep her head in the sand. The law said that patients had a right to assisted suicide. She somehow had to help those patients.

How, though?

She had only her standard response: “This is something you do on your own,” she told Mark. “Hospice doesn’t do this. Hospice feels your symptoms can be managed. Pain won’t be a problem. You won’t be afraid. You won’t need this.”

“OK,” was all Mark said.

Joan blanched when she learned from Mark of this exchange. She thought: Oh my God, how could he do this to Margaret? It will make her feel she’s failing her job.

Joan understood Mark would never think this way. To him, his actions or decisions had nothing to do with others, nothing in this case to do with Margaret. They had only to do with himself. Still, one day Joan asked Margaret how she felt about Mark’s inquiry. It was as she suspected: “I wondered what I did wrong,” Margaret told her. “I thought I must have failed.”

Mark kept talking to Margaret. He thought the Death With Dignity Act was a good idea. He knew it hadn’t been invoked much. Maybe his experience with it would benefit others. More than once he said to Margaret, “Four hours, four days, four weeks . . . . What does it matter in a man’s life?”

Privately, Margaret’s interest was piqued. She had to admit to a morbid curiosity about how assisted-suicide worked, how it all would go. Yet to Mark she said: “Call your doctor . . . . This is something to talk to your doctor about.”

Mark’s pain mounted, particularly where the tumor gripped his hip near the sciatic nerve. By the end of January, he was constantly groggy from his high morphine doses, nearly in a coma. Urged by Mt. Hood Hospice and by Mark--he didn’t want to be “out of it”--doctors decided to implant an epidural catheter in his hip. With such a direct delivery system, Mark would need just one-tenth the morphine dosage he then was taking. If all went well, he’d be alert again, with far fewer side effects.

All didn’t go well, though.

“I Think I See the End Coming, I Want to Control It”

I want to talk to the nurse about a legal way out.

That’s what Mark, lying in his hospital bed, told his daughter.

When he entered the hospital at the end of January, doctors stopped the oral steroid he’d been taking for a year. Mark’s body went into shock. He began vomiting and couldn’t stop. He looked as if he were dying. It’s withdrawal, Margaret kept telling the doctors. You can’t stop an oral steroid cold turkey like that.

The planned two-day hospital stay stretched to three days, four, five, as doctors worked both to stabilize Mark and implant the epidural catheter. Now, not just the pain and nausea showed in Mark’s eyes. So did the indignity. He could no longer master his body with his mind. He could see what lay ahead.

I want a legal way out. This time he said it to Margaret.

Joan was nearby but didn’t hear him, perhaps couldn’t hear him. He’s in so much pain, she kept telling the doctor. He has four tumors on his spine.

She didn’t think the hospital doctor had ever looked in her husband’s folder. She felt he was taking things far too lightly. This was the first time she’d seen anybody not giving the respect to her husband that he deserved. She wasn’t used to that.

“If we don’t get him out of here,” Joan told Margaret, “he’s going to die. “

Margaret shared Joan’s concerns--she wanted to slap the cute young doctor who thought he couldn’t do anything wrong--but she contained herself. I need to help this family get past anger, she told herself. If they bolt now and stop the procedure, it would all be for nothing.

Margaret wasn’t sure how far to push. Then she realized the doctors weren’t hearing. So she started talking directly to the hospital nurses and pharmacists. Eventually she started confronting the physicians, demanding the needed medications and procedures. The Kobayashis thought her incredible.

They got through it finally. After six days, Mark went home. The epidural worked, greatly reducing his pain. He no longer had to be medicated to a nearly comatose state. He could think clearly now.

With his newfound cogency, he thought: I’m not going to go through that hospital experience again.

Regularly now, he was talking about the Death With Dignity Act. Regularly now, he was saying he wanted physician-assisted suicide.

Joan finally heard him. At first she was shocked and angry. It was not that they were a religious family. They weren’t. The difficulty was more practical: The way she understood the law, no doctors or others could be involved. She believed she’d have to mix and give him the lethal prescription herself. He cannot ask me to do that, she thought. He just cannot.

Margaret also struggled with Mark’s request. It was a strange feeling for her: Here she’d fought ferociously to keep him alive. Now he wanted help in dying. Getting prescriptions, mixing and offering them--that’s just not what hospice did.

Instead, Margaret started talking to Mark as openly as possible about death. She explained that it would be the lung tumors that killed him. She described how those tumors would suffocate him. She talked of what it would feel like. She told him what he could expect.

What will death look like? Mark asked. How will I know I’m getting there?

“You’ll see it coming,” she said. “You will know.”

She could go no farther down this road with him. Instead, she brought him Mt. Hood Hospice’s written policy about the Death With Dignity Act.

Mt. Hood . . . reaffirms the philosophy that hospice does not abandon dying patients and their families . . . . However, MHH will not participate in physician-assisted suicide . . . . If patient or family member makes an inquiry . . . MHH will inform them that they need to call their attending physician or Compassion in Dying . . . . If complications arise, they are to call the attending physician, not MHH . . . . MHH will not play a role.

Mark understood now. His family was no more prepared than hospice to handle this for him. His wife had said she just couldn’t make such arrangements. His daughter, though he asked, hadn’t looked into the matter. So in early February, he called his family doctor, Robert Lapin. “You know,” he told Lapin, “I’ve been reading about physician-assisted suicide, and I think I’d like to do that . . . . Are you philosophically opposed?”

The question gave Lapin pause. He was considered a fine if conservative family practitioner. He hadn’t gotten involved in the years-long debate over physician-assisted suicide. He didn’t feel Oregon needed the Death With Dignity Act. He hadn’t wanted the law. He’d rather doctors and patients continue as they always have, working out end-of-life issues privately.

Hospice did this even without the new law, he reasoned. They just didn’t acknowledge it. Increasing morphine hastened death; if that isn’t some form of mercy killing, he didn’t know what was. Doctors also did it, writing prescriptions for medicines that got stockpiled. Assisted suicide just hadn’t been state-sanctioned until now. Ethically, he didn’t see a lot of difference--except now they had sheet after sheet of forms to fill out.

He didn’t like any of this--but how could he turn away his own patients? It wasn’t in him. He’d been pretty sure he’d cooperate if asked by one of them. He’d been hoping, though, that none would ask.

Now here was Mark Kobayashi. He hadn’t seen him for quite some time. The oncologists had taken over long ago.

“Why do you want this, Mark?”

Mark had thought long and hard on that question: “Basically, up to now I’ve been able to live my life. But the last week or two, I’ve gotten weaker and weaker. I can’t live my life anymore. Life has not been at all pleasurable. I think I see the end coming. I want to control it.”

Lapin considered. In his ambivalence, he was far from alone among Oregon doctors. Reluctant but unable to deny a patient, Lapin now chose the course followed by many of his colleagues: He dragged his feet.

“No, I’m not opposed,” he told Mark. “But I know little about how it all works. You’re my first patient to ask. I’m not sure how to proceed. I’ll have to look into it. Let me get back to you.”

Days passed. To a hospice nurse one day, Mark said, “You know, I called my doctor about physician-assisted suicide, but he hasn’t called me back.”

“Oh shush,” Joan intervened. “You don’t need that.”

“I just need to explore,” Mark countered.

Then Lapin did call back. He was having a “hard time,” he reported, finding a second doctor to do the required consultation.

The waiting continued. Joan struggled with her feelings. By now, she knew she wouldn’t have to mix the medicine herself. She knew also that this was something her husband wanted. Mark’s wishes mattered greatly to her.

Do I want him to do this? she wondered. Or do I want to lay next to my husband for a few extra days and see him suffocate? Which is worse?

She was not a person to make that decision. She knew that much. She wouldn’t have the guts; she herself would most likely hang on. But Mark was a person to make this decision.

They complemented each other perfectly. They also respected each other. That, Joan thought, was why they’d worked so well together. You needed both types--those who saw clearly and calmly, those full of emotions. When it was truly important to him--child-raising issues, for instance--he put his foot down. So did she. Lots of other things, they each gave in. Life was too short to have your own ideas all the time. They both grew. They both took from each other over their 34 years together. Mark could be too practical, too undemonstrative; she taught him about expressing feelings. She, in turn, learned to control her emotions. You can’t be yourself all the time because you could never get married, never live with someone. You each have to learn from the other; you each have to concede.

Mark felt he was letting her down by dying. She knew that.

She knew also that Mark didn’t want to complain, didn’t want to be seen as weak. He wanted to go out strong. She understood. To lie there suffering, that wouldn’t be Mark. That wouldn’t fit with the image of Mark.

Yes, she thought, he is a simple man. But also an extraordinary one.

It was hard to imagine that someone wanted to go, someone you didn’t want to let go . . . . And yet, Joan now realized, it wasn’t so much that Mark wanted to go. He needed to go.

It was right for him, she decided, so that meant it was right for her.

She settled by the phone, the Yellow Pages open before her. She started calling around, looking for a second consulting doctor who would cooperate. She couldn’t find one.

This wasn’t uncommon for patients seeking to use the Death With Dignity Act. Six of the 15 patients who chose assisted suicide in the act’s first year had to ask more than one doctor before finding a physician who would write a lethal prescription. Only 400 of Oregon’s 7,000 doctors are on Compassion in Dying’s roster of physicians who have indicated support for the law. Many hospitals and physicians in Oregon are simply unwilling to participate.

This was taking a lot of steps, Joan saw.

This law is pretty hard to abuse, Mark thought.

Then they looked again at Mt. Hood Hospice’s printed policy. There it was, a reference to Compassion in Dying: If a patient or family member makes an inquiry about physician-assisted suicide, MHH will inform them that they need to call their attending physician or Compassion in Dying.

Mt. Hood had accidentally provided the wrong number for Compassion in Dying. Joan spent more time tracking down the correct listing.

On Feb. 24, three weeks after Mark had first started asking for an assisted suicide, the phone rang on the desk of George Eighmey, executive director at Compassion in Dying of Oregon. “My husband is dying,” Joan Kobayashi said. “He wants to talk about the Death With Dignity Act.”

“There Has to Be Something Like Us. We Are Filling a Need”

Compassion in Dying is controversial in Oregon. It’s an advocacy group, openly helping patients who wish an assisted suicide. It has also come to serve a broader role as the main clearinghouse for information and referrals. It has filled a void, offering a service that no other group has been willing to provide.

Some find this troubling. There are those who’d prefer to have a neutral, recognized agency take responsibility for referrals. Yet no private group has volunteered, and no government office is empowered. Dying patients often call Compassion because they have nowhere else to turn. Either their personal physician won’t help or they fear even bringing up the matter with their health care provider.

A nonprofit charitable organization with a two-person paid staff and about 20 volunteers, Compassion in Dying of Oregon shares unmarked quarters in northwest Portland with the national Compassion in Dying Federation, which has five paid staffers. Eighmey, a lawyer and former Oregon state legislator, has championed such causes as gay rights and medical marijuana use. He is familiar with the burden of being in the closet. “Once you’re out,” he likes to say, “you’ve taken away the opposition and the pressure.” The Death With Dignity Act, to his mind, allows people to come out and finally talk about dying.

During the statute’s first year, Compassion in Dying received more than 350 information requests. Of the 23 who began the process to get a lethal prescription, Compassion helped 17. Of the 15 who chose assisted suicide, Compassion helped 11.

“There has to be something like us,” Eighmey said soon after getting Joan Kobayashi’s call. Above his desk, taped to the wall, was a chart of his volunteer caseworkers’ assignments. At his feet sat a dark blue loose-leaf notebook full of reports on active cases. “We are filling a need that hopefully won’t always exist. Someday maybe there won’t be a need for an organization like us.”

That day has yet to come. When Mt. Hood Hospice couldn’t accommodate the Kobayashis’ request for assisted suicide, Compassion in Dying had to step in.

As Eighmey listened to Joan during their first conversation, he filled out his group’s form. He noted the patient’s specific situation, the patient’s pain level, the reason for calling, the level of competence, the level of family involvement. Minutes later, he called Dr. Lapin to verify what he’d heard and to ask for the doctor’s assessment of this family. Then he sent Lapin a package of information about the Death With Dignity Act. Finally, he assigned caseworker Teresa Grove to the Kobayashi family.

All of Compassion’s nine caseworkers are volunteers. In addition to nurses, they include a physician, a social worker, a psychologist, a psychiatrist, a homemaker and a retired businessman. When they join, each gets a daylong training session and a thick loose-leaf notebook full of policies and procedures. Teresa needed less training than most.

At 47, she was a critical care nurse who’d spent years in the intensive care unit of teaching hospitals. She’d seen her fill of bad deaths. She’d seen conduct that she thought immoral--doctors, for example, shoving a catheter into a brain-damaged woman who had just hours to live. For her doctorate in education, she’d written a dissertation on nursing ethics. She was now director of nursing at a temporary staffing agency and sat on Compassion in Dying’s board. She’d volunteered at Compassion to compensate for all those bad deaths and to work with colleagues who shared her values. Unlike hospice nurses such as Margaret, she had no ambivalence about assisted suicide. She’d been assigned to four Compassion patients before Mark, but none had completed the required procedure. She had yet to attend a planned death.

Teresa paid her first visit to the Kobayashis two days after Joan called Compassion in Dying. She found Mark on the couch in the family room. The epidural catheter seemed to be controlling his pain, but he was only able to sit up in his wheelchair for 10 minutes at a time. Teresa talked with him about his life and his family. She verified that his two grown children lived in the Portland area and were aware of his desires. Then she asked if he had a particular day in mind for ending his life.

No, he didn’t, Mark said. He just wanted to be able to do it before his health got much worse.

Listening, Joan struggled to adjust to this new nurse. Where Margaret--still visiting regularly--was warm and ebullient, Teresa was undemonstrative, matter-of-fact, task-oriented.

You will need to be able to feed yourself the medicine, Teresa reminded Mark.

Yes, he knew that.

You should think about what you’d like when that time comes, she suggested. Who should be present, any ceremony, some kind of special activity. . . .

He had already thought about that, Mark said. He had all his legal affairs in order.

Teresa had him sign a release of medical information. Then she gave Joan several phone numbers so they could reach her at any time. After an hour, she left.

More days passed. The Compassion in Dying information packet sat on Dr. Lapin’s desk. It fell to Eighmey to find a second consulting doctor.

In some cases, especially in rural areas, this meant asking one of his four volunteer medical directors whether they knew someone. In this case, Eighmey called Dr. David Tarcher, a family practitioner from Compassion’s “circuit” who worked near the Kobayashi home. Mark was fragile and immobile; they needed a physician close enough to go to the patient.

That the act doesn’t require this consulting doctor to be an expert--that the act is silent about the consulting doctor’s qualifications--troubles some in Oregon. That Compassion in Dying has a referral list troubles them even more. Much is made about Compassion “shepherding cases” to physicians “predisposed” toward the act.

Yet it’s unclear how else a family might make use of the Death With Dignity Act, given so many doctors’ reluctance or outright opposition. In a situation where personal values play such a big role, it’s hard to find objective medical judgment. Just about everyone has some sort of bias.

Dr. Tarcher’s favored the Death With Dignity Act. He’d seen dozens of people die miserable deaths. One patient blew his head off after Tarcher refused to write him a lethal prescription. He liked that the covert now was legal and regulated. He thought people should have a choice. Few would take it, he believed, maybe zero to one in his own practice each year, but it should be available.

Tarcher knew all the folks at Compassion in Dying, all the folks who wrote the law. He’d spoken for the measure on a televised town hall program. He quickly agreed to serve as the consulting physician for Mark Kobayashi.

On March 1, he asked Lapin’s office to send over Mark’s medical record. Two days later, after studying that 50-page file, he conferred with Lapin.

Lapin understood now that he couldn’t drag his feet any longer. He was prepared to fill out and sign the Oregon Health Division’s “Primary Physician’s Compliance Form.” Mark is totally cognizant, he told Tarcher. Maybe mildly depressed, given his medical state. But his decision makes sense. It’s consistent with his lifestyle. His family is not opposed. There’s no obvious instability in the family.

Tarcher visited the Kobayashi home six days later. He found Mark lucid and not the least depressed. The patient had a kind face and a pleasant smile. Pain was not a big problem. Autonomy was Mark’s issue. “I want to run my own show,” he told Tarcher.

They talked about Mark’s life, his illness, his hospital experience. They discussed alternatives. Nothing swayed Mark. He knew what he wanted.

Tarcher faced a decision now: Should he refer Mark for a psychological consult?

There is no more difficult or disputed element of the Death With Dignity Act than this option to call in a psychiatrist. Those drafting the statute long debated whether to make it mandatory. Eventually, they decided to do so would be offensive in its implication that asking for assisted suicide was by definition a sign of possible mental illness.

It is precisely that, of course, to a good number of specialists. They point to several studies which suggest that psychological factors--depression, hopelessness, anxiety--are what commonly drive patients’ interest in euthanasia and physician-assisted suicide. The desire to die, they maintain, is most closely associated with depression. So there are ways to respond when a patient talks of suicide. You look at causes and issues; you evaluate and diagnose and treat. You don’t tell patients it’s up to them.

There are other psychiatrists, though, who see it differently. Why try to disguise society’s ambivalence about suicide by turning to a clinical diagnosis? Why shift a troubling moral decision to an outside specialist who, as one journal put it, “becomes a secular priest dressed up in the clothes of a medical expert”? Why pretend there’s a valid, objective method for determining which suicides are rational?

In truth, depression appears difficult to diagnose in medically ill people, at least without extended observation. Ninety-four percent of Oregon psychiatrists in one survey weren’t confident they could determine, in a single evaluation, whether a psychiatric disorder was impairing the judgment of a patient who requested an assisted suicide.

Rather than resolve this matter or choose among the conflicting outlooks, the act leaves everything up to the patient’s primary and consulting physicians. This stirs its own chorus of complaints. Most of these doctors, it’s argued, are family practitioners who can’t spot depression and know nothing about terminal patients. How can they possibly judge whether a patient needs to see a mental health specialist?

Faced with such questions, a task force convened to craft guidelines for the act ended up advising doctors to refer all cases for psychological evaluation. This hasn’t happened. Of the first 23 patients who put the Death With Dignity Act into play, only four were sent for such consults, and all were found competent. In one case, the first reported under the act, the patient turned to others doctors when hers suggested she might be depressed.

There are those in Oregon and elsewhere who express dismay over this situation. Others shrug. “Most depression you see in these patients is situational and environmental,” says Dr. Peter Goodwin, a professor at the Oregon Health Sciences University and a primary architect of the Death With Dignity Act. “They’re not so much depressed as sad . . . . So what if a psychological evaluation says you’re obsessive? If you’ve been obsessive all your life, why not now?”

As Mark’s consulting physician, David Tarcher takes particular exception to the notion that he’s not able to evaluate his patients. “It’s not so complicated, making these judgments. I daily see four or five patients suffering depression. I have no problem identifying them.”

Mark just wasn’t a puzzle to him. Tarcher thought Mark’s a classically appropriate case for physician-assisted suicide: End-stage metastatic cancer, the pain managed, hospice in place, self-control the issue. Although the family didn’t embrace the idea, they accepted Mark’s decision. Lapin had been “nearly certain” that Mark didn’t need a psychological consult. Tarcher was positive.

Tarcher didn’t agonize over any other element of Mark’s request, either. He’d thought about assisted suicide for a long time; he’d had five years to search his soul. The same day he visited the Kobayashi home, he sat down to fill out the Consulting Physician’s Compliance Form.

He checked the appropriate boxes: The patient is capable; the patient is acting voluntarily; the patient is fully informed; the patient is not suffering from a psychiatric or psychological disorder. Then he signed his name at the bottom.

That same night, Mark’s family gathered around him. He now had his attending and consulting physicians’ compliance forms. He’d made his two oral requests, 15 days apart. He needed only to submit a written request, signed by two witnesses, one not a relative or heir, then wait 48 hours to get his prescription. He’d asked Margaret to serve as the nonrelative witness, but Mt. Hood Hospice policy wouldn’t allow that, so instead he chose his daughter’s boyfriend.

Mark picked up a pen. The boldface title on the document before him read, “Request for medication to end my life in a humane and dignified manner.” Below that were the words “I, Mark Kobayashi, am an adult of sound mind. I am suffering from colon cancer . . . . I have been fully informed of my diagnosis, prognosis, the nature of medication to be prescribed and potential risks, the expected result, and the feasible alternatives . . . . I request that my attending physician prescribe medication that will end my life in a humane and dignified manner.” Mark signed his name.

The next day, Joan delivered copies of the document to Dr. Lapin and Compassion in Dying, making sure to get them dated and time-stamped. Then, to Teresa, she asked: Do you know a pharmacy in our area that will cooperate?

This was no small question. The law allows pharmacists, like doctors, to refuse participation in an assisted suicide, and many in Oregon have done just that. As a result, doctors and families involved in the first assisted deaths sometimes had to call a long list of pharmacies until they located a cooperative one. Just as Compassion in Dying found it necessary to develop a “circuit” of willing doctors, so too did they need to identify willing pharmacists.

They’d done this by the time of the Kobayashi case. Teresa passed Joan’s query to Compassion in Dying. Within 15 minutes she had the name not just of a pharmacy but of a particular pharmacist. Within an hour, Teresa was faxing his phone numbers to Dr. Lapin’s office. This pharmacist, Teresa advised Lapin, would be working the night shift alone for the next eight days.

Two more days passed--the 48 hours the act required between Mark’s written request and receipt of the lethal dose. It was now Friday. Mark was weakening rapidly. He couldn’t sit up through a meal. His eyes closed often during conversations.

“Keep talking,” he told his visitors in those moments. “I can still hear you.”

He could also still speak. He thought the process required by the Death With Dignity Act could be quicker; he didn’t know how he could use the law without Compassion in Dying; he felt lucky to have this option. “No,” he said, “I don’t have a particular time planned to take the medication. I just want to have it available in case.”

A television set hung from the wall at one side of his bed. Occasionally, his eyes traveled to the screen, where a college basketball game unfolded. His daughter, Anne, 29, lay curled beside him on the edge of the hospital bed. His son, John, 31, stood near the foot of the bed. His wife sat in a chair in the corner. Every few minutes, Mark launched into a volley of heaving coughing, evidence of the growing lung tumors. Responding quickly each time, Joan and Anne gently clapped him on the back with cupped hands as he tried to hold himself up by the overhead bars. He winced with the effort. “Pain is an issue,” Mark said.

A nervous tumult filled the Kobayashi home. Visitors arrived. Strangers asked questions. The phone rang. Joan walked from room to room in their modest suburban house, trying to address everyone and everything. The Kobayashis didn’t know what was supposed to happen next. They’d cleared all the act’s hurdles. They hadn’t heard from Dr. Lapin, though. They weren’t sure they wanted to.

Even now, near the end, they had tried to talk Mark out of his plans. This just managed to anger him; it was the most upset they’d seen him in these last days. “Why try to talk me out of this when you know this is what I want?” he asked. After that, they stopped trying.

“I don’t want my dad to do a physician-assisted suicide,” John said, standing in their living room. “I don’t like the whole idea, laying about, waiting. I prefer the natural way. But Dad wants this. It’s so important to him. He wants to talk about it, too. This is what he focuses on. When doctors and others call regarding this, he says, ‘Give me the phone.’ He likes to makes lists for projects--what to buy, what to do--then check items off. That’s what he’s done with this. He feels he’s doing something with a purpose. It energizes him. This has become the most important thing to him.”

Joan, passing through the room, added her thoughts: “It’s also a cultural thing, an Asian thing. He thinks he’s lived a full life, but when it’s time to go, it’s time . . . . This requires a person willing to take responsibility. I think the law is for strong people, not weak. It’s not an easy way out. Not at all.”

Joan fell silent, pondering. Then, softly, she said: “I hope he never uses the medication. I hope he dies before taking it.”

In midafternoon, an unfamiliar Mt. Hood Hospice nurse stopped by to check Mark’s condition. She disappeared into the patient’s bedroom.

Joan felt uncomfortable having visitors in the house whom she barely knew. This hospice nurse, for one. Joan had no idea what the nurse thought about her husband opting for physician-assisted suicide. She couldn’t help it--that mattered to her.

The nurse emerged from Mark’s bedroom looking grim. I can’t offer you much encouragement, she told Joan.

This is why Mark asked for the prescription, Joan now realized. Mark knew he was going. It was happening so suddenly. Hour by hour, he was getting worse.

She felt harried, unable to control matters. She wished this Death With Dignity process could be simpler, quicker. All the forms and delays, finding doctors, making calls, waiting for callbacks. How could anyone use this new law?

She didn’t want her husband to suffocate, she knew that now. She wanted it to be easier for him, better for him. Yet this wasn’t only about Mark; it was also about herself. She didn’t want to watch him suffocate.

Joan began thumbing through her thick pile of business cards, searching for Teresa Grove’s number. “I need to call her,” Joan said, “and see what’s happening about the prescription.”

“I’ll Pick Up the Medication and Bring It to You Tomorrow”

It was 5:30 by the time Teresa reached the Kobayashi home that Friday afternoon. With her was a second Compassion in Dying caseworker, Amy Ayers. Joan, looking worn, described the day’s difficulties: strangers in the house, phone calls, everything happening at once. It was clear she had much on her mind.

They went into Mark’s room. He appeared weaker, but still smiled at them. Anne was sitting by him on the side of the bed. Joan mentioned that until recently he’d been playing the piano.

“I play the piano,” Amy said.

Mark’s face lit up. “Will you play for me?”

Amy, 66, with short gray hair and kinetic features, had volunteered at Compassion in Dying only days before. Eighmey had assigned her to assist Teresa, both to give her experience and to provide balance to their team. Where Teresa could seem impassive, Amy blazed with emotion. She hadn’t become a nurse until her 40s. She’d served in a hospital intensive care unit but hadn’t liked working so much with “things.” She more enjoyed her time ministering to AIDS patients and helping in a second-trimester abortion unit. She liked to hug and caress.

In the Kobayashis’ living room, Amy did her best on “Moonlight Sonata” and “Clair de Lune,” then returned to the bedroom full of apologies for being so rusty. Mark thanked her. “I’ll bring my music with me next time,” she promised. He smiled.

Then he started coughing. He’d grown far too weak to bring up the secretions increasing daily in his lungs. Joan and Amy gently pounded his back with cupped hands. The coughing subsided.

Mark hadn’t picked his final day yet. For that matter, Mark hadn’t said for sure whether assisted suicide was still an option or now a certainty.

Outside the bedroom, Teresa reminded Joan: “You can’t let things worsen until he can’t take the medicine himself.”

What medicine? Joan thought. They didn’t even have it yet. They still hadn’t heard from Dr. Lapin.

Teresa called his office. So did Eighmey. The answer they got back: Lapin wanted to talk to Mark one more time before sending the prescription.

The doctor finally phoned the Kobayashi home late that Friday night. He had already discussed all the options with Mark but wanted to assure himself that no new issues had emerged. He wanted, for one thing, to make sure Mark wasn’t planning to use this prescription in a public place. He also wanted again to make clear to Mark that he could back out.

You’re in control, he told his patient. Do you really want to do this?

Yes, Mark said.

Still Lapin hesitated. One of his big fears--as for half the doctors polled in Oregon--was that he wouldn’t prescribe enough medicine, that his patient would wake up. It was bad enough to start this procedure, but to not end it was worse. You couldn’t find the formula for a lethal dose in the standard medical literature. Nor could you find it in the task force’s 91-page guidebook. At least the Compassion in Dying packet offered a recipe: the powder from 90 secobarbital capsules, 9 grams in all, mixed in something like applesauce or pudding. Having that formula eased Lapin’s concerns.

Not entirely, though. Before providing a prescription, Lapin now decided, he wanted to visit the Kobayashi home and talk to the whole family. “OK then,” he said. “I’ll go pick up the medication tonight and bring it to you tomorrow.”

It was past 11 p.m. by the time Lapin got to the pharmacy. As promised by Compassion in Dying, the pharmacist they’d contacted was on duty and alone. Lapin paid $40 for the 90 Seconal tablets.

The next afternoon, he drove to the Kobayashi home. He sat with the whole family, talking and listening, trying to see how everyone felt. Physician-assisted suicide may enfranchise patients, but it also affects those around them. Lapin wanted to make sure no one here had a big problem.

They didn’t, he concluded. He saw that the family respected the father’s wishes and decision. This was not what any of them wanted really, except Mark. But they supported Mark’s right to make the choice.

Lapin clutched the vial of Seconals. He’d purposefully held on to it; he didn’t want to have to grab it back if something emerged that bothered him. Now he handed it over.

He still thought Mark might not use the pills. Mark seemed so calm. He wasn’t in great pain. His family was talking about his piano playing and other interests.

Lapin said to Mark, “It’s not bad--dying the natural way. Your system shuts down. You’re usually in a short coma . . . . You can back out, you know. There would be no loss of face.”

“I will think about it,” Mark replied.

As Lapin was leaving, he turned to Joan. “You know he might not do it,” he said.

Joan shook her head. “No, he’ll do it.”

“What Kind of Music Do You Want?”

The need to administer your own lethal dose is what separates Oregon’s Death With Dignity Act from most other aid-in-dying measures proposed around the country. It’s a chief reason the measure passed--but it’s also what creates many of the law’s knottiest dilemmas. Those drafting the initiative knew they were excluding gravely disabled patients who can’t give themselves a lethal dose. They knew also they were forcing deadlines on all those who desired an assisted suicide.

Under Oregon’s law, you can’t wait too long if you want to die. You need to take your medicine while you still can swallow it. Mark had grown so weak by the time of Dr. Lapin’s visit, Joan worried that he soon wouldn’t be able to do this. Mark worried also.

The day after Lapin’s visit, a cool, cloudy Sunday, he stopped eating. He no longer had the strength or the appetite. This, Joan could tell, troubled him.

So did a visit to the bathroom. It had always been important to Mark that he be able to go there by himself. Joan would wheel him in, then leave. This Sunday, she couldn’t. He’d tip over. She had to stay.

Mark made his decision near midday. He would take the pills Tuesday, he told his family. Tuesday at 4 p.m.

Joan had trouble with that. Mark didn’t look like a dying person. He had so much color, he looked as if he’d come from a week in Hawaii.

Mark’s daughter, Anne, also had trouble. It was so weird, to pick a specific time and day. She didn’t want that time ever to come.

Teresa heard the news when she came to visit that afternoon. Mark was in bed when she got there, Joan was fixing a lunch she hoped he’d eat. The two women talked at the dining room table. He says he’s ready, Joan told Teresa. That’s how he’s always been. Whenever I cooked a big meal for him, he’d stop when he’d had enough, no matter how good it was. Enough, he’d say, that’s it. He’d just decide. Just like now . . . .

Joan and her children left for the funeral parlor to make arrangements. Teresa visited Mark in his bedroom. She sat at his side, holding his hand, trying to answer his questions. He wasn’t in great pain; the epidural was working fine. Yet Teresa thought him a lot weaker. He picked at the food before him. He talked in a whisper.

If I wait too many more days, he asked, I won’t be able to take the medicine?

Right, she said. At some point.

What will the procedure be like? he asked. What will happen Tuesday?

First, we’ll give you certain medications, including an anti-nausea drug. They need an hour to take effect. Then we’ll mix the prescription into Joan’s homemade applesauce.

That had been Mark’s choice. Joan would use apples they grew right out there in the backyard. He nodded, pushing his food around with a pair of chopsticks. Teresa, pointing at them, said: You won’t be able to use those . . . . You’ll have to swallow quickly.

Here was one of the more critical issues in using short-acting barbiturates. Patients had to get it all down before they started falling asleep. If they didn’t swallow the full dose, they might not die; they might wake up gravely ill, even brain-damaged.

How quickly? Mark asked.

Within one minute, Teresa said.

After that?

Sleep . . . . Coma.

When Mark’s family returned, they joined them in the bedroom. There were more questions.

How long will the dying process take?

“The range,” Teresa explained, “has been from minutes to 11 hours.”

How quickly will the funeral home get there?

“You can ask them to wait if you want time alone.”

“Does Dr. Lapin have to be present?”

This, too, was a critical issue for many in Oregon, and elsewhere. Given the chance of a self-administered dose proving insufficient--of a patient failing to die or vomiting or suffering horribly for hours after swallowing the pills--there are those who feel an assisted suicide should never be carried out in the absence of a doctor. There are also those who argue that providing a patient a lethal prescription but not being present at the bedside imposes an inappropriate responsibility on untrain