CHAPTER FOUR

Double Effect

“What brings you to Montana?” the clerk at the rental car counter asked after looking at my New York driver’s license. I waited for him to make eye contact with me, but he didn’t. He was young, about twenty-five, and doughy, with corn-silk hair and light-brown eyes.

“Assisted suicide,” I deadpanned. “I hear it’s legal in Montana now.” He lifted the corners of his mouth in a friendly way and nodded. Then, processing what I said, stopped and lifted his eyes from the computer monitor. He looked at me about a half second too long.

“I’m writing about it,” I said, shrugging. Writers could be trusted with rental cars. Potential suicides, maybe not.

“I’m in nursing school,” he said. “I haven’t heard anything about it. They can make it legal to kill yourself?” Now I had his attention.

“Well, it’s already legal in two states,” I told him. “Montana’s the third.”

He came around the counter to hand me my paperwork and took the handle of my wheelie bag. As he walked me to my car, he asked more questions. That “assisted suicide”—a term he reacted negatively to—was legal in Montana came as a surprise to him, but as I defined what the law allowed, he nodded in approval. It was early morning, mid-December; a dusting of snow covered the ground. I had arrived in Billings the night before and stayed in a shabby Motel 6 near the airport. I felt terrible. A head cold had come on a few days before I was scheduled to leave New York, but because my flight, car, and interviews were all confirmed, I mustered. I took a bunch of cold medicine and hoped for the best. The early morning air, the snow, the curious rental car clerk all cheered me. I had been in New York for too long without a break. It was liberating, despite the dragging head cold, to be in a new landscape, one that was so vast and open. I thanked the clerk for pulling my bag and settled into the little rental car for the five-hour drive to Missoula. I could have flown to Missoula, but the chance to drive thrilled me and gave me time to think about the questions I would ask my interviewees that day. The sun was just coming up as I pulled out onto Route 90 and headed west. It cast a long shadow off the car ahead of me and made the grasses of Montana’s plains a golden red. I found a local radio station that played old country, heartbreak songs, interrupted by advertisements for grocery stores. Truck drivers raised two fingers at me when I passed them on the left. Red-tailed hawks sat on weathered fence posts to watch the traffic go by; in the distance, black cows dotted the tall grass. I thought of Willa Cather’s description of western prairies in My Ántonia: “There was nothing but land: Not a country at all, but the material out of which countries are made.” I popped another DayQuil in my mouth and washed it down with gas station coffee.

Almost exactly two years before my plane touched down in Billings, Lewis and Clark County District Judge Dorothy McCarter had decided that the “constitutional rights of individual privacy and human dignity, taken together, encompass the right of a competent terminally-ill patient to die with dignity.” Her decision was announced on December 5, 2008, on what would have been my father’s sixty-fourth birthday. The case was brought on behalf of a man named Robert Baxter, who, like my father, had been diagnosed with cancer for ten years. Immediately after Judge McCarter’s ruling, the state attorney general appealed the decision to the Montana Supreme Court, which heard arguments in September 2009. I was drawn to Baxter’s case; he seemed familiar to me. In the photo I have taped by my desk, Baxter is wearing sand-colored canvas overalls and a teal blue T-shirt. He looks out from the shadow of a trucker’s hat marked with a bull’s eye and the outline of Montana stitched in white thread. His hair, beard, and mustache are white as snow. A marine during the Korean War, Baxter had settled in Montana to drive long-haul trucks. The state suited him: he was an outdoorsman who camped, fished, and hunted. At the age of sixty-six, he was diagnosed with lymphocytic leukemia, a cancer that attacks the white blood cells in bone marrow. Baxter went through several rounds of chemotherapy, but his leukemia marched on. After nearly ten years of hoping to beat it, he realized he had done everything possible. He was ready to die.

I had a 3 p.m. appointment with Mark Connell, the Missoula lawyer who had represented Baxter. Before I had gotten on the plane for Montana, I had watched a YouTube video of Connell arguing before the Montana Supreme Court. In it, Justice Jim Rice asks Connell how aid in dying would affect important laws intended to protect citizens.

Connell’s voice is calm, almost buttery, authoritative without being too assertive. In the video, he’s wearing a dark suit and tie, the model of a small town lawyer. He answers,

Statutes in Montana, the Montana Rights of the Terminally Ill Act, cross that line over and over and over again. We’re not working on a blank canvas here. Montana law recognizes multiple situations where it’s all right for a doctor to hasten death. This happens every day in our hospitals. This double effect doctrine is when a doctor goes to a patient and his family and says, “You’re suffering, I’m gonna put you out of suffering. Here’s the extra morphine that will do the job.” This is done deliberately so. And so our law recognizes there are certain situations where, because of the paramount duty doctors have—and the state recognizes—to alleviate suffering, medicine can proceed to the point where death is hastened. Our contention, as you know, is that there’s not much difference between that and aid in dying. It takes a small step further.

“Double effect.” An action that has two outcomes. Connell was referring to the medical principle that a doctor may medicate a patient to alleviate pain and suffering, even to the point of death, so long as the doctor’s intention is to relieve suffering. In Principles of Biomedical Ethics, Tom L. Beauchamp and James Childress write, “This rule incorporates a very influential distinction between intended effects and merely foreseen effects.” The principle traces back to St. Thomas Aquinas, a Dominican friar and Catholic theologian who died in 1274. In Summa Theologica, his seminal, foundational work, Aquinas writes, “A single act may have two effects, of which one alone is intended, whilst the other is incidental to that intention.” Aquinas says that the nature of an act depends not on its outcome but on the “agent’s” intention, and he gives an example of how the double effect works. He says that when we protect ourselves from an attacker, our intent is self-protection. If we happen to kill the attacker, our action of self-defense is justified because “the agent intends to save his own life.” Double effect has been a principle in Catholic moral theology for more than a century; later, it was taken up by philosophy and applied ethics. The double effect was ultimately enshrined in medical ethics by Beauchamp and Childress in 1977 as medical technology was quickly complicating the dying process and clear ethical principles became necessary. But the double effect has always been accompanied by controversy. Some don’t place the same emphasis on intent that Aquinas did (or the Catholic Church continues to), particularly when the second outcome is foreseeable, even predictable. Even, perhaps, hoped for.

Missoula is a small town with just over sixty-eight thousand residents and a reputation, similar to Austin, Texas, as a bastion of liberal thinking in the middle of a politically conservative state. The Clark Fork River, which collects in the Rocky Mountains and runs northwest to Idaho, bisects the town. Connell’s office is a colorful, well-kept Victorian on Spruce Street, two blocks from the river, four blocks from the county courthouse, and directly across the street from St. Patrick’s Hospital.

I asked Connell, a tall, affable man with a firm handshake and brown eyes, why he took the Baxter case. “I thought it was an issue that needed to be decided, in Montana and elsewhere,” he said. He had experienced the long and painful deaths of his father-in-law and other family members. It was a personal issue for him. “It involves a broader set of questions that our society needs to deal with. Who gets to decide these things? Should it be the government or the person?” he continued. I detected the strains of a libertarian argument running through his explanation. Government, he felt, should have no say in such personal matters: matters that should be private between a patient and her doctor. “Whether it’s a hospital or a medical association or whomever, we all know that when we get very sick and our lives are about to close, typically we don’t have control of what’s happening,” he said. Once upon a time not so long ago, patients consulted with their trusted physician; they decided together how the end would come. Extraordinary measures didn’t exist. Doctors could keep patients comfortable; they could make patients in pain unconscious. Now, with most people dying in hospitals and institutions, often divorced from both their family doctor and the natural, unmedicalized way of dying, they are subject to imposed laws and ethics. Death has become a decision to remove machines that only make the dying process longer. Connell said, “Whether you like it or not, you may have the end of your life decided by somebody else.”

Connell became interested in end-of-life issues in college when he read Jessica Mitford’s The American Way of Death, a searing, sharp, and often funny takedown of the funeral industry. Later, he’d come across Sherwin Nuland’s best seller, How We Die, in which Nuland describes, with a doctor’s physiological detail, what happens when we die of cancer, stabbing, heart attack, and other causes. Nuland demystifies the dying body by explaining how various systems—the circulatory system, the respiratory system—shut down. Over the years, Connell watched law and medicine change as new medical technologies were introduced. These new technologies could prop up individual failing systems, but they couldn’t stop death; they could only prolong pain and suffering. “I saw the Baxter case as one that concerned important social policy issues, but also one with enormous personal dimensions. Death is a universal experience, but almost universally in our culture we don’t want to talk about it,” Connell said.

Efforts to legalize aid in dying in some states have amplified the public debate about how Americans die. In 1994, Measure 16 was passed by Oregon residents; 51.3 percent voted for the law and 48.7 voted against it. Called Death with Dignity, it established a framework for those terminal patients who wanted their doctors to give them a lethal dose of medication. The law is very specific. Patients have to request the medication orally and in writing, their diagnosis has to be corroborated by two physicians, and patients are required to wait fifteen days between requests. If there is any question of depression or delirium, a third professional has to determine whether the patient is mentally competent or not. Patients are required to be residents of the state, to be eighteen years of age or older, and to take the medication themselves (doctors and family members are prohibited from directly dosing the patient). An explicit tracking and reporting mechanism was put in place, and the law requires that death certificates of those who use Death with Dignity list the underlying illness as cause of death, not “suicide” or even “Death with Dignity.” Insurance companies are prevented from retaliating against the families of those who use the bill.

While the law has stood for twenty years, it hasn’t been without challenge. Another measure was brought before Oregon voters in November 1997, a few years after Death with Dignity passed, that would have repealed the law. It was defeated by majority vote. Not ready to let voters have the last word, US Attorney General John Ashcroft challenged the law on the grounds of the Controlled Substances Act in 2004; he tried to rescind the licenses of doctors who participated in Death with Dignity by making prescriptions. His case was blocked by a lower court. The decision was appealed by incoming US Attorney General Alberto Gonzales, but the US Supreme Court decided in January 2006 that the law could stand.

In 2008, Washington became the second state to legalize aid in dying. Initiative 1000, bolstered by fourteen years of standing in Oregon, was approved by 57.82 percent of the state’s voters. The law, also called Death with Dignity, looks a lot like Oregon’s. In Montana, after Connell argued Robert Baxter’s case before the Montana Supreme Court, a decision was issued on New Year’s Eve, 2009. It stated that a doctor’s prescription for lethal drugs did not defy the state constitution. And with that, Montana became the third state to legalize aid in dying and the first to do so via the courts, albeit without the strict checks and balances of the prior two Death with Dignity laws.

That the first three states to legalize aid in dying are all in the general northwest of the United States has not gone unnoticed by observers. Physical and ideological distance from the country’s center of power on the East Coast, strong political ideas about independence and personal liberty, even inclusion of the right to dignity in the constitution—as in Montana—have made the aid-in-dying movement’s early successes possible there. Yet, the states that have since legalized aid in dying, Vermont, California, and New Mexico (where it is on appeal in the courts), make it difficult to generalize about political inclinations and the law’s proponents.

“Before you leave,” Connell said to me, “remind me to show you Bob’s picture. I have it upstairs on my wall.” It was the same picture I had hanging by my desk, the teal blue T-shirt, the overalls, the trucker’s cap with “Montana” stitched on it.

Roberta King was named after her father, Robert Baxter. She is tall and lean with short blond hair and a ready laugh. After Bob’s death, she wrote and spoke publicly about his quest to make aid in dying legal. It was a role that she took on with reluctance, only after she grasped the bind that her ill father was in: dying painfully, legally unable to get to death when he wanted. Baxter wasn’t suicidal, but he was ready. Roberta told me that he had so much time to prepare for his own death that he did everything he could to make it easy on the family. He sold his “toys”: the RV, the boat, and the trailers; he reroofed the house, had new siding put on it, and paid off the mortgage. As Roberta and I sat in the Iron Horse, a bar and grill on Higgins Street in downtown Missoula, she told me how her father announced to the family that he was quitting chemotherapy treatment and entering hospice.

He had called all four children—Roberta is the youngest—and asked them to come home for Thanksgiving. But they weren’t to bring the grandchildren, Robert insisted. He didn’t want them to remember him as he was, wasted away and dying. The news was hard on Roberta, who had volunteered for hospice a few years before. She knew what was coming; hospice meant that there was no more hope he would miraculously beat his cancer.

“Let me tell you a story,” Roberta said. “When I got there, I was out in the backyard. They have this huge cottonwood tree. And I saw a big chain up in the tree, so I asked my mother, What is that chain? And she said, your dad climbed up there because he was afraid that the tree branch would fall over and hit the neighbor’s house. So one of the last things he did was chain the stupid branch up because he was protecting the neighbors from the tree. I’m sure that it took everything. Every last shred of power he had.”

Roberta told me other stories about her dad. That he had talked about shooting himself, which scared Roberta. She thought of a former neighbor who was dying of cancer. He was in pain and depressed. When his dog died, he couldn’t take it anymore. He took his shotgun into the backyard and shot himself in the head. “His wife had to clean it up,” Roberta told me. Robert Baxter quickly ruled out that option; he didn’t want his family to experience that kind of trauma.

When I asked Roberta to tell me what her father was like, a wide smile crossed her face. “He was funny,” she said. “He was tough. He was gone a lot,” driving long-haul trucks across the Northwest. “A chunk,” she said, always a little chubby. And a curmudgeon. “Total Archie Bunker.” She told me how much care and effort he put into the court case, how he kept it a secret from the children until Roberta asked him about stacks of paper on the dining room table one day. And she told me about how, after her father died, she and her two brothers and one sister all took turns crawling into bed with their mother. “She was in a big old king bed by herself. And of course my dad had died in that bed days before. We all did it. I mean we’re talking fifty-year-old men slipping into bed with their mom, snuggling with her.”

In July 2010, more than two years after her father died, new legislation was introduced in Montana to strike down the state supreme court’s decision. Roberta wrote a guest column in the local paper, the Missoulian, titled “Fighting to Keep the Right to Die with Dignity.” “His symptoms were so severe and his suffering so unrelenting,” she wrote of her father, “that he yearned for death weeks before his life ended. From statements he made to me and other members of our family, it is clear my father would have availed himself of aid in dying if that choice had been legal in Montana and available to him. The fact it was not made his suffering and death much more painful and difficult than they otherwise could have been, and deprived him of the right to decide for himself how much suffering to endure before he died.” She concluded, “I’m going to keep fighting to keep this choice in place, the one my dad should have had.”

“There’s something very heroic about Robert Baxter,” I told Connell. I meant that it must have taken a particular determination to pursue a court case while he was terminally ill. But I was also thinking about the criticism he endured from opponents of aid in dying who claim the law is unnecessary. Some say patients are giving up, taking the easy way out instead of facing death. What they mean is that Baxter’s pain and suffering were not important, or that they were expected and necessary. They mean that he should have accepted the authority of a medical system that had gone off the rails and the state laws that enforced it—and the machines and constant tests and treatments foisted on him. They said he was not in charge of his body, that decisions regarding life and death belonged to a higher power, one he didn’t believe in. That he was defying nature by seeking lethal medicine. Baxter was never cowed by any of it. He was dying, suffering the ravages of his final months, and still he pushed on with the lawsuit. Baxter wanted access to a lethal prescription to end his own suffering, but he was committed to making that access legal for everyone, when he could have been at home, in the privacy of his family.

Other opponents of aid in dying say, why make a law? If someone wants to end his life, there are plenty of ways to do so. Guns, car exhaust piped through empty garages, ropes with clumsy knots slung over rafters, haphazard amounts of household poisons that often maim but don’t kill the desperate. These are the options available to dying patients in pain, if they’re still able to physically execute any of them. Others say that the alternative to a long and painful decline is hospice or palliative care, which allows a patient to be medicated to the point of comfort—and unconsciousness. Baxter saw no dignity in that option either. In his affidavit to the Montana court, Baxter explained why he did not want palliative sedation. The affidavit is a public document; Connell gave me a copy before I left his office. It is three pages long, sealed by a notary, and signed by Robert Baxter in large, curling letters. He wrote:

I am appalled by this suggestion and the loss of personal autonomy it involves. I understand that terminal or palliative sedation would involve administering intravenous medication to me for the purpose of rendering me unconscious, and then withholding fluids and nutrition until I die, a process that may take weeks. During this final period of my life I would remain unconscious, unaware of my situation or surroundings, unresponsive from a cognitive or volitional standpoint, and uninvolved in my own death. My ability to maintain personal hygiene would be lost and I would be dependent on others to clean my body. My family would be forced to stand a horrible vigil while my unconscious body was maintained in this condition, wasting away from starvation and dehydration, while they waited for me to die. I would want to do whatever I could to avoid subjecting my family to such a painful and pointless ordeal.

I knew that Robert Baxter had died at home before the supreme court case had been decided. I asked Connell what Baxter thought of the decision that propelled his case into the national spotlight and ultimately made Montana the third state in the country to legalize aid in dying. Turns out that Baxter never knew. He died the day the district court decision was made, before the case ever went on to the supreme court. Connell told me that when the district court called to let him know that the decision was ready, he called the Baxter home to tell them that it was favorable. Baxter’s wife told Connell that she was sorry Bob was asleep but that he would be happy. “He died before he woke up. So he never learned about it,” Connell said. Baxter never knew that Judge Dorothy McCarter had refused to stay the use of aid in dying while the case was on appeal. He never knew that his case went on to the state supreme court and that it was successful, that he had cleared the way for like-minded patients across the state to have another way out of a long, slow death.

In states where aid in dying has been the subject of intense public conversation, there are surprising end-of-life consequences for the overall population. Doctors’ referrals for hospice (or palliative care, a medical discipline that rose out of hospice and focuses on alleviating pain) in Oregon increased by 20 percent after legalization. A 2013 poll by National Journal and the Regence Foundation found that Washington and Oregon residents were more knowledgeable about hospice and palliative care. In 1995, one year after Death with Dignity was legalized, Oregon issued its first Physician Orders for Life-Sustaining Treatment (POLST), a bright pink or orange single-page form in which patients can stipulate, in medical terms, what types of treatment they want when in distress. Because it’s required that the form is taped to a patient’s refrigerator, emergency workers know where to look. POLST is like an advanced directive that speaks a doctor’s language. The forms are considered the best way available to inform care providers of patients’ desired treatment. Doctors and emergency staff were suddenly able to respond to crisis situations not with “do everything” but according to what each patient wanted. Twenty-six US states have since adopted POLST or similar forms.

Oregon, Washington, Montana. All three states had one thing in common: the legal chops, the grassroots organizing, and the funding of the nation’s largest aid-in-dying nonprofit, Compassion & Choices. C&C’s lawyer, Kathryn Tucker, was Mark Connell’s co-council in Montana. C&C’s steady and practiced hands had ushered in both Oregon’s and Washington’s ballot initiatives. I attended the C&C annual conference in Chicago in June 2012. In fact, I presented at it. I’d struck up an online friendship with Carla Axtman, who was then C&C’s online community coordinator. She had been helpful when I was arranging interviews across the country for research or articles, and I genuinely liked her; we’d spoken on the phone numerous times and I appreciated her feedback on what I was doing and who I was talking to. Yet, I always kept a wary eye on C&C’s political objectives. I knew I wasn’t an activist, at least not in the way that they thought I could be. More than once, I’d gotten a call from Carla or someone at the organization who challenged my use of the term “assisted suicide” in print. I balked at the oversight of my journalism. Theoretically, I was comfortable with the term; suicide has been contested, permitted, and even revered throughout human history. But politically, C&C was deeply invested in using “aid in dying.” How the issue was worded made an undeniable difference in the support C&C could claim. As with the rental car clerk’s reaction, “assisted suicide” is tainted by the stigma surrounding suicide. The terms that one uses—death with dignity, aid in dying, assisted suicide, euthanasia—often indicate the user’s position on legalization. (I use the first three interchangeably because I view suicide as a tragedy that should be prevented, but also, depending on the circumstances, as a person’s rational choice. Legal aid in dying in Europe is called euthanasia, despite the continent’s World War II experience during the Holocaust.) The latter two terms, assisted suicide and euthanasia, when undefined, are often seen as immoral, the history of the terms as corrupt and inhumane. But when aid in dying is explained, most tend to favor legalization. As a June 2014 Gallup poll shows, a majority of the American public approves of aid in dying (70 percent, up from 50 percent in the 1970s) if it is worded as a doctor “being allowed to end a patient’s life by some painless means if the patient and his or her family requests it.” When asked if they support “doctor-assisted suicide,” only 51 percent approve.

I’d met Carla in person at the C&C “Symposium on End-of-Life Advocacy” in Washington, DC, in 2009. Big-toothed, gregarious, and tireless, she exuded conviction in her organization’s cause. Carla asked if I’d do a brief presentation in Chicago on how to sign up and use Twitter, a then-new social media tool that C&C saw as potentially helpful for advocates. In the spirit of “the more information the better” and as thanks to Carla, I said yes. Attendees—most white, most over fifty—had taken over the Hyatt Regency O’Hare Hotel, a monolithic, poured-concrete structure in the no-man’s-land between Chicago’s airport and downtown. The city was hot as blue blazes that week; stepping outside was like having all the air sucked out of you. A trip to diners, cafés, anything other than the hotel and surrounding banal business parks, required a car. I resigned myself to the air-conditioned comfort of my room.

I was cranky and tired for most of the three-day event, “Heights of Compassion, Bridges to Choice,” a title that sounded a little treacly to me. By then I was accustomed to the language and issues that the organization pursued while tacking through the tricky political and legal landscape toward legalization. Compassion & Choices, in some form or another, has been around since the 1980s when Derek Humphry founded the Hemlock Society in Santa Monica. He also authored Final Exit, the book I gave my father when he began to talk about killing himself to escape his terminal cancer. Humphry is a controversial figure, but it’s hard to tell fact from fiction in the stories most told about him. In a video made before her death, Humphry’s ex-wife, Ann, accused him of “unwelcome pressures” to end her life. Humphry’s do-it-yourself style, his embrace of the terms euthanasia and suicide, his lack of polish, came to be seen as a liability to the movement. What is sure is that he was a difficult and cantankerous character, not cut out to usher “aid in dying” onto the national stage and through the necessary political and legal hurdles. When Humphry left the organization in 1992, it was renamed Compassion in Dying. It merged with End of Life Choices in 2003, and the names were combined to form Compassion & Choices.

Many of the panels and presentations in Chicago sounded like a rallying cry for the troops, something I knew was absolutely necessary to an advocacy organization. Yet, I wanted to talk about the deeper issues underlying the curated message. Dear Abby—aka Abigail Van Buren, aka Jeanne Phillips—gave the opening address Thursday night. She was delightful and rousing. But the panel that caught my attention was presented on the last day, “Bioethics & End-of-Life Choice.” It was the bioethics, the larger ethical considerations of aid in dying, that interested me. The copresenters were Thaddeus Pope, director of the Health Law Institute at Hamline University, who I knew from his “Medical Futility Blog,” a site that examines the legal issues surrounding futile care, and Sue Porter, a sprightly woman who was on the board of C&C. I recognized Sue from her appearance in the documentary How to Die in Oregon, a film that had won the Sundance Grand Jury prize when it was released the year before. Sue lived in Oregon and had long been a counselor to dying patients on end-of-life services. In 1994, when Oregon legalized aid in dying, she also began helping dying patients use the Death with Dignity law. “What are the many considerations terminally ill people face when deciding to end their lives with a lethal prescription?” the panel synopsis asks.

Plenty of my hospice patients had told me they wanted to die. Sue’s clear, straight talk about how to legalize such a bill in other states, and practical description of what patients in Oregon faced, was refreshing. In an opening scene of How to Die in Oregon, Sue’s hands are shown dumping the white powder from pill after pill into a small, clear bowl, then mixing it with water from a sink. The spoon clinks on the glass. Below large windows in the next room, a man—white, about sixty-five or so (it’s hard to tell, he’s dying)—sits on a bed with his hands in his lap. His family members, of all ages, stand around him.

Sue leans in, her hands on her own knees, to look him in the eye. She’s prim, in a gray sweater and necklace; her hair, nails, and makeup are perfect. She’s calm. She says, “Before you take the medication, I’m going to ask you those two questions again. Do you know you have the right to change your mind?” Sue nods her head with each clearly articulated word.

“My mind’s not changing,” he says immediately, emphatically.

“And what will this medication do?” she asks.

“It will kill me and make me happy,” he says.

Sue drops her head. I understood at once that she knew dying.

In the spring of 2013, I was teaching a journalism class at Drew University in New Jersey. I called it The End Is Near: Writing About Death, Dying and Destruction in Contemporary America. We read mostly long-form journalism that addressed suicide, war, murder, military post-traumatic stress disorder, and plane crashes. In one of the last classes, I asked Sue to join me for a screening of How to Die in Oregon. She was in New York to see friends and participate in a bike ride through the city’s boroughs. She came into class with a box of tissues. How to Die examines the legalization of aid in dying in Oregon through the story of a terminally ill woman named Cody. Young and in her fifties, with the kind of beauty a camera loves, Cody struggles with her pain. We watch as she cycles through anger, hurt, and resignation. When she decides to take the lethal drugs, the camera trains on her bedroom window from the outside, but we hear her last words to her family. Despite seeing the film multiple times, I cried my eyes out in class. So did Sue. Cody’s death is heart wrenching. But the students weren’t as affected as she or I had expected. I wondered if, even after months of reading about death and dying, after a mere eighteen years of life, they were still grappling to understand what it’s like to die. Sure some of them had lost grandparents, but for the most part, they didn’t have the store of emotion, from either facing their own mortality or the absence of a loved one, for the movie to tap into.

During the train ride to and from Madison, New Jersey, Sue and I chatted about Compassion & Choices and new developments in the aid-in-dying movement. Sue was about to publish an article, titled “Unintended Consequences: Obstruction of Patient Choice,” that examined religious influence on health care, particularly on the informed consent of patients in facilities that were managed by the Catholic Church, which opposes aid in dying, even in states where it is legal. “As Catholic hospitals merge with financially imperiled medical centers or acquire independent medical practices, they are instituting religious policies which prohibit doctors from any participation with DWD,” wrote Sue, referring to Death with Dignity. She was identifying a problem that had been spreading across the country, one that reproductive rights advocates have been decrying for some time: Catholic institutions prohibit their staff and doctors from discussing medical treatments like abortion and aid in dying. What was legal was not necessary accessible to patients in those institutions.

The discussion of whose conscience is most important—that of the Vatican, hospital doctors, staff and administrators, or patients—is now a common one to those who have been watching the Obama administration and the US Supreme Court struggle with cases involving Hobby Lobby and Little Sisters of the Poor. The for-profit craft-store chain and the nonprofit religious order both challenged the contraception mandate in the Affordable Care Act. The mandate would have allowed millions of women to receive insurance coverage for contraception. Sue saw such challenges now directly affecting patients’ access to aid in dying because they established a hierarchy of conscience. Corporations and religious institutions could interject their own beliefs into the privacy of the patient-doctor relationship.

Yet, the aid-in-dying movement continues to gain momentum, perhaps, some would say, because patients fear the loss of control exemplified in these cases. They feel that law and medicine—and now their employers—have all got a hand in their health decisions, when really what patients want is privacy and control. In May 2013, Vermont became the first state to legalize aid in dying via the legislature. In the January 2014 court decision, Judge Nan G. Nash ruled in the second district court outside of Albuquerque, New Mexico, that “this court cannot envision a right more fundamental, more private or more integral to the liberty, safety and happiness of a New Mexican than the right of a competent, terminally ill patient to choose aid in dying.” The case is now on appeal to the New Mexico Supreme Court. The next month, the New York Times featured a front-page article, “‘Aid in Dying’ Movement Takes Hold in Some States.” I talked with Sue the day after it was published. She saw it as a positive sign that the paper used “aid in dying” instead of “assisted suicide.” I was happy to finally see national reporting on the issue, reporting that didn’t gravitate toward spectacle or disregard what patients were experiencing. Rather, it examined the loss and pain of desperate, dying patients.

On August 15, 2012, eight months after my trip to Montana, I flew to Washington State. By the time I met Robb Miller in his modest office on the second floor of a brick building in Seattle, I had seen him speak at several Compassion & Choices conferences. He’s a small man, lean and athletic, always immaculately dressed. He has a ruddy complexion and short brown hair. Miller became executive director of Compassion & Choices of Washington in 2000 and spearheaded Initiative 1000, which made aid in dying legal there. The protracted deaths of two people propelled him into his advocacy: that of his father who was diagnosed with terminal cancer in 1994, and that of his longtime partner who was diagnosed with AIDS in 1995.

There is a reason why AIDS changed the end-of-life landscape forever. AIDS patients were young and their bodies were strong; their deaths were long and grueling, accompanied by internal bleeding, tumors, starvation, and a weakened immune system unable to fight otherwise curable illnesses like tuberculosis and pneumonia. The mysterious disease allowed many to project fear and hatred onto the gay community. A Public Religion Research Institute poll shows that, in 1992, 36 percent of Americans thought AIDS was God’s punishment for immoral sexual behavior. In 2013, 14 percent did. Ian Dowbiggin, a professor of history at the University of Prince Edward Island, writes in A Concise History of Euthanasia, “As AIDS cut its lethal swath through the world’s homosexual communities in the 1980s and 1990s, it helped to energize what had come to be called the right-to-die movement.” Families and caregivers couldn’t just watch their loved ones suffer so excruciatingly. Some patients, knowing what horror was coming, looked for lethal drugs illegally.

Next to the photo of Robert Baxter that I keep taped by my desk is a photo taken in 1990 by Therese Frare, then a student at Ohio University and a volunteer at Pater Noster House, an AIDS hospice in Columbus. The photo is black-and-white and shows the deathbed of David Kirby. His emaciation is breathtaking. He stares into the middle distance, eyes lost and blank but open. The skin of his face is stretched tautly over his cheekbones, his mouth is open, his jaw has already slackened. His hands are twisted and curled inward on his chest. Kirby’s father, Bill, his face in anguish, touches his forehead to his son’s as he cups his thick hand around David’s hollow face. David’s sister, Susan, and her daughter hold each other and watch. In many ways, the image is reminiscent of deathbed photos from a time gone by, when people died at home with their family, young and old, gathered to witness last breaths. The photo was published in the November 1990 issue of Life magazine and was picked up by countless newspapers, TV stations, and magazines across the country, thus humanizing the tragedy that families were experiencing because of AIDS. Twenty-five years later, Life posted the photo online, calling it “the photo that changed the face of AIDS.” It’s now been seen by more than a billion people.

Miller watched the epidemic from his partner’s bedside. “I realized that hospice couldn’t manage all of my partner’s suffering. He was agitated, he was in pain, he had dementia in the last months of his life. I mean I don’t need to give you the laundry list of suffering,” Miller told me, never mentioning his partner’s name. “I was promised one thing, and something else entirely happened. Hospice was a hollow promise. He died eighteen months after he was diagnosed, and he had an egregious death.” Miller told me that he felt like they were abandoned by hospice. “They didn’t stop providing care, but they did abandon us in terms of our wanting information about aid in dying or how to end his suffering. That’s really what made me an activist for choice in dying.”

It was a relief for me to hear Miller say this. For years, I’d carried around the image of my father writhing on his bed. Our betrayal of his last wish to die at home. Hospice’s inability to give us drugs strong enough to keep him calm. While my father might never have pursued aid in dying had it been legal in Pennsylvania, he was in pain. He did not die a peaceful death. Some of that suffering could have been according to his wish, but I had to wonder, how much of it could we have done away with if hospice had a more inclusive understanding of end-of-life options. The founder of modern hospice, the British doctor Cicely Saunders, was a staunch and vocal opponent of what she called “euthanasia.” She felt that pain and suffering could always be addressed, and while she credited both sides with advocating for the end of patients’ suffering, she felt that, because of her Christian faith, because of her own projected idea of a good death, that aid in dying was immoral. Miller was the first person I had found who was able to clearly articulate why sometimes hospice is not enough.

Miller told me that he was a strong supporter of hospice—around 90 percent of the patients he advocated for were enrolled in hospice care—but found that it wasn’t the right solution for everyone. Even if a patient’s physical pain and symptoms could be managed, existential suffering—caused by dependence on others, loss of abilities—could still make life unbearable. Miller told me, “Opponents of aid in dying seize on the dependence on other people and they say, ‘What’s the shame in that?’ or ‘What’s wrong with that?’ Well, there’s nothing wrong with it, but if you’re a person who’s been independent all of your life and the idea of not being able to take care of your most fundamental physical needs is abhorrent to you, then that’s a problem for you. That’s a form of suffering. Being that dependent on people.”

I had asked Mark Connell, who spent much of his professional life representing personal injury cases, what the difference was between pain and suffering. The first was physical, he told me. The second was everything else—the sadness, the loss of control, the time in bed, the fear of what was to come, the dependence on family for basic needs—and that, too, was painful.

“Opponents often misrepresent hospice and palliative care as the alternative to aid in dying. They have a rather romantic idea of how people should die,” Miller told me. “They believe in the idea of personal growth occurring at the end of life, that it prepares someone to die.” Hospice workers wanted patients to talk about how they were feeling, to say their last goodbyes, to love and forgive family and friends, to seek love and forgiveness. I knew what he was talking about. As a hospice volunteer, I often felt as if my charge was not to just hold hands, but also to lead patients down a particular path that hospice considered the way to a good death. “The idea permeates hospice and palliative care, that if that period of personal growth is short-circuited by aid in dying,” Miller said, “the patient is denied this spiritual growth and journey. Reviewing your life and all of those things. It’s arrogant.”

Through his work as a steering committee member with the Washington End of Life Consensus Coalition, sponsored by the Washington State Medical Association, Miller has gotten to know the medical and hospice entities in the state. While the WSMA did not support Initiative 1000—in fact, a poll at the time showing the support of a majority of its members pulled the rug out from under its opposition—Miller and Compassion & Choices of Washington now work with WSMA on other end-of-life issues, like access to hospice and palliative care and communication with patients about end of life. As a member of the POLST task force, Miller played a role in helping to bring POLST forms to the state. He also works with the state hospice association. It too was opposed to legalization of aid in dying but didn’t campaign against it. A majority of the hospice facilities in its membership are Catholic affiliated. The president of the board is also director of a Catholic hospice.

Miller’s advocacy, his life’s work, is to give patients the autonomy to decide what medical treatments, including aid in dying, they want and to deny the ones they don’t. Without moral or legal judgment. His work was profound to me; he wanted everyone to have the right to say how much pain—whether physical or emotional—we could stand.