Choice at the end

As anyone who has sat with the dying will tell you, there are good deaths and there are bad deaths.

In 2008, James “Jim” Powell, a longtime member of First Unitarian Church of Portland, Oregon, was having a very hard death. Riddled with cancer, Powell lay in excruciating pain with open wounds, and he was eager to hasten his end. But he would not do it.

His situation was ironic: Powell was among a small group of Unitarian Universalists at his church who helped launch the modern death-with-dignity movement in the 1990s, when they wrote and got Oregon voters to approve the nation’s first aid-in-dying law, which allows terminally ill adults to hasten their end with physician-prescribed medication.

Powell was a passionate advocate for the right to die and had been at the bedside of others who used the Oregon law when it went into effect in 1997. Now, at the age of 82, he was ready to leave his failing body, and he had the medicine in hand.

But he was worried that doing so would cause pain to members of his family who did not support Oregon’s law, recalled his daughter Katy Powell, so he continued to endure the agonizing process of having his dressings changed each day. The Rev. Kate Lore, social justice minister at First Unitarian Church, implored nurses to leave the bandages in place: at worst, the wounds would become infected and Powell would die faster, as he hoped. But they could not break medical protocol.

Finally, Powell decided to go ahead with taking his own life, and his family all chose to be there, even if they didn’t agree with his choice. “The family gathered around and Jim drank the medicine,” Lore recalled. “Within 90 seconds he began to snore. His breathing slowed and then he stopped breathing. It was very peaceful and very quick.”

At long last, Powell’s was a good death.

Helen Lee’s death, too, was good.

A congregant at First Unitarian since the 1970s, Lee wanted to avoid putting her children through what she had endured with her own mother’s prolonged death from Alzheimer’s. In 2012, Lee, a nonsmoker, was diagnosed with fatal lung cancer and told doctors that when the time came, she wanted to use the Oregon law.

“She was a very tenacious person, and the idea of not being able to drive her own life—and now, her own death—was something she wanted to avoid,” said her daughter, Julia Lee Griffith, who grew up in the congregation.

When two doctors agreed that she had less than six months left—a requirement of the law—Lee found a physician to write the prescription. (She had to go outside her own health care group, which was connected to the Roman Catholic Church, a strong opponent of aid in dying.) Drugs in hand, Lee focused on enjoying her final days, until her pain and breathing difficulties were too much. On January 7, 2014, Lee gathered her family around, and in their loving presence, took the medicine and died.

“We were holding each other and holding hands and making our circle around her, and she was leaning against my dad and brother,” recalled Griffith. “Her breaths came farther and farther apart and then she was just gone. It was an easing into death, seamless and natural. The way she died was exactly the way she lived—she was making it happen.”

Before Oregon passed its law nearly two decades ago, many terminally ill people faced what they saw as a terrible dilemma: a long and agonizing death or suicide by illegal and often-traumatic means. Lore knew a woman with fatal brain cancer who went alone to a hotel room and shot herself in the head, to the horror of the hotel staff who found her, not to mention her own husband and children.

“It’s so much better when a family is gathered around, and they’ve all said what they need to say,” said Lore, “and the person can go with dignity.”

While debate about voluntary eu­thanasia is hardly new, one young woman provoked national conversation about the issue in 2014. Brittany Maynard, a 29-year-old woman with malignant brain cancer, moved to Oregon from California in order to legally end her life on her terms. When Maynard took her story public—including with a cover article in People magazine—she reenergized the movement for aid in dying, which had languished for years despite the efforts of advocates, including the national nonprofit Compassion and Choices, which has close ties to First Unitarian.

A Harris poll conducted after Maynard ended her life on November 1, 2014, found that 74 percent of Americans agreed that terminally ill people in pain should have the right to end their lives. Suddenly, after years of being sidelined, the issue is front and center: in the 2015 legislative session, 24 states and the District of Columbia considered death with dignity laws, according to Death with Dignity, a national nonprofit that promotes laws based on the Oregon model. In October 2015, California joined Oregon, Washington, Vermont, and Montana in legalizing aid in dying. Proponents in California, the most populous state, had been trying to pass a law since 1991; when the law goes into effect sometime in 2016, over 10 percent of Americans will live in jurisdictions where aid in dying is legal.

Barbara Coombs Lee, a member of First Unit­arian and president of Compassion and Choices, predicts that one or two more states will pass aid in dying laws in the next year. Compassion and Choices has launched an advocacy campaign in New York, and she has hopes for success in Colorado and New Mexico, where the state Supreme Court is deciding the legality of aid in dying under current law. “The dominoes are starting to fall,” she said.

Coombs Lee and others say Maynard’s courage in going public made all the difference to an issue the public generally ignored and many politicians tried to avoid. Maynard’s husband, Dan Diaz, told UU World, “Brittany put a different face to it,­ and people realized this is something important to all of us. They related to her and realized that this could be anyone: a spouse, a sister, a brother, an uncle.” Diaz will continue advocating for laws in other states, he said, “to honor my wife and her legacy.”

Many people realize that Oregon’s law, one of the first in the world, serves as the prototype for other U.S. legislation. But few know that the law was drafted in a dilapidated office in an annex at First Unitarian in Portland by a handful of committed church members, including Coombs Lee. Even before they sat down to draft the law, their church had become a critical site in the maturation and legitimization of the modern aid in dying movement—and the broader Unitarian Universalist community has been vocally supportive.

The Rev. Dr. Charles Francis Potter (1885–1962), a Unitarian minister and early champion of Humanism, founded the Euthanasia Society of America in 1938, but he and other early advocates often also championed eugenics—and the horrors of eugenics in Hitler’s Germany derailed euthanasia advocacy for decades. In the 1980s and ’90s, the movement for aid in dying reemerged, most famously in the self-help model promoted by Hemlock Society founder Derek Humphry in his popular book, Final Exit.

Today, support for personal choice in death is rooted for many UUs in respect for individual dignity and the rights of conscience. Indeed, in 1988, the Unitarian Universalist Association General Assembly passed a resolution supporting the right of “terminally ill patients to select the time of their own deaths,” the only major denomination to do so to date, according to Ian Dowbiggin, a professor of history at the University of Prince Edward Island and author of A Merciful End: The Euthanasia Move­ment in Modern America.

Choice and autonomy over one’s own life, including the right to refuse medical treatment when one is dying, are central to UU principles, said the Rev. William G. Sinkford, senior minister at First Unitarian. More­over, in contrast to some Christ­ian traditions, he said, “There is a strong strain of Unitarian progressive theology which argues that the notion of suffering being redemptive was a wrong turn from the very beginning. It is true that we often suffer, and I don’t think it does anything toward saving us.”

The current death-with-dignity movement, which focuses on changing public policy, took firm root at the church Sinkford now leads, Coombs Lee said. After the law was drafted there, the church hosted press conferences to garner voter support; its ministers and lay leaders have been involved for decades, she said.

First Unitarian’s involvement began in the 1960s with its then-minister, the Rev. Dr. Richard Steiner, an early advocate of aid in dying. After he retired and became terminally ill, Steiner obtained medication that he used to end his life, said Coombs Lee and Lore. His decision became a quiet part of the church’s history. The congregation’s next long-serving minister, the Rev. Dr. Alan Deale, took up the cause. Deale spoke before the Oregon legislature in 1991, when state Senator Frank Roberts, who was dying of cancer, introduced a death with dignity bill. It failed—after scores of other clergy spoke in opposition.

Coombs Lee, who worked for the legislature and attended the hearing, was unfamiliar with Unitarian Universalism at the time. “Here comes this diminutive man with a bow tie who says, ‘My denomination promotes and supports this legislation. It is part of our theology, our doctrine of the inherent worth and dignity of every person, and it’s what people deserve at the end of life,’” Coombs Lee recalled. “I thought, ‘I’ve found my church.’”

Deale’s position was informed not just by Steiner’s decision but by that of others within his congregation, including Janet Adkins, who became the first person to die with the help of the notorious Dr. Jack Kevorkian. Adkins, diagnosed with Alzheimer’s at 54, traveled from Oregon to Mich­igan in 1990, where Kevorkian attached an IV to her with fatal medication in the back of his Volks­wagen van. Another congregant couple, Al and Sarah Sinnard, faced their own terrible decision: Sarah, who was dying painfully of heart disease, decided to end her life. Worried her husband would be prosecuted if he were present, she sent him away and died alone.

Coombs Lee joined the church just as Deale retired. She read an item in the church bulletin by Al Sinnard asking for help drafting a ballot initiative legalizing aid in dying. Others in that core group included Jim Powell and his wife Autry. “The church was a kind of home for the campaign,” Coombs Lee recalled. “All the drafting took place there, all our meetings.”

“It’s a fascinating thing that it came out of the church so wholly,” said the Rev. Dr. Marilyn Sewell, who served as senior minister from 1992 to 2009. Sinnard and Coombs Lee took the campaign around Oregon and to the media to raise support among voters; Sinnard, who co-founded a political action committee, Oregon Right to Die, shared the story of his wife’s solitary death. Many other UUs gathered signatures and did other grassroots work.

In 1994, 51 percent of Oregon voters approved the initiative, which led to the Oregon Death with Dignity Act, making Oregon the first U.S. state—and one of the first places in the world—to legalize aid in dying. In 1997, 60 percent of Oregonians voted against an attempt to repeal the new law.

Meanwhile, in Washington State, the Rev. Ralph Mero, then a UU community minister, had been doing grassroots organizing on the issue. A ballot initiative there was defeated in 1991, largely due to the influence of the Roman Catholic Church, he said. Mero formed an advocacy group, Compassion in Dying, which later merged with the Hemlock Society to form Compassion and Choices, with Coombs Lee as its director. Although Washington voters in 2008 passed an initiative similar to Oregon’s law, Mero doubts that more than two or three states will pass aid in dying laws, in part because of Catholic opposition and the growing conservatism among Americans on social issues.

First Unitarian Church in Portland is still closely connected to the issue of aid in dying. Sinkford sits on the advisory board of the Oregon chapter of Compassion and Choices, “in part to honor that history and the strong role this church has had in fostering that movement,” he said. UUs have comprised about a quarter of volunteers at the Oregon chapter of Compassion and Choices, said Derianna Mooney, a retired nurse and member of the church who has assisted over ninety people with using the law over the past seventeen years. Mooney helped organize a major conference in October, “Death: OK,” that featured seventy presenters and drew more than 500 people to Portland to discuss death and dying. When Brittany Maynard died, First Unitarian Church held a candlelight vigil and service for her, at which Sinkford spoke.

“That congregation continues to be an almost sacred space for this issue,” said Matt Whitaker, Oregon director of Compassion and Choices. “It’s supportive on so many levels,” he added, from the policy level to helping individuals choose to use the law. “It’s in our DNA,” said Sewell.

Oregon’s Death with Dignity Act allows terminally ill adult Oregonians with less than six months to live to get a prescription from their physician for a self-administered, lethal dose of medication. To address concerns about coercion or error, the law includes a number of safeguards. Two physicians must determine the person has less than six months to live and is mentally competent before a doctor can write the prescription. The person must self-administer and swallow the medicine; it can’t be taken by IV or injection. “In our experience, legislators feel comfortable with the Oregon model because there is twenty years of data with it,” said Coombs Lee. “I think it will be a long while before a legislature passes a bill with fewer procedural hoops than Oregon.”

The medicine is a very high dose of a fast-acting barbiturate. The person is typically asleep, if not in a coma, within five minutes, and usually dead within fifteen minutes to an hour.

American laws differ starkly from those in Belgium, Switzerland, and the Netherlands, where doctors typically administer the fatal dose, said Coombs Lee. “We only allow self-administration,” to ensure the choice is patient-driven, she said.

Since 1997, 1,327 people in Oregon have received prescriptions, and 859 have taken the medicine and died, according to a 2015 report by the Oregon Public Health Division. About one-third who obtain the prescription never use it, the report found. Many of them find enormous comfort in knowing they can take the drugs if they wish to, advocates say. “The beautiful thing about these choices is they exist for people crying out for them, and for those who would not choose this because of their personal moral ethic or whatever it might be, there’s no obligation to choose it,” said Whitaker.

There has never been a credible case of someone being coerced into taking the medication if they didn’t want to, said Sinkford. Critics of Oregon’s law, however, point to a handful of news reports about insurers that denied funding for expensive palliative treatments but told patients that they would pay for the death-with-dignity prescriptions.

Another problem vexes advocates. The cost of the most commonly used drug, secobarbital, skyrocketed from about $100 a decade ago to several thousand dollars today, after a drug company purchased rights to it. A much cheaper alternative, pentobarbital, was available until European drug manufacturers stopped selling it because it was also used in the United States for executions by lethal injection. Advocates are now seeking alternative medications, Coombs Lee said.

Despite polls showing public support for the right of terminally ill people to end their lives, significant opposition remains, particularly from the Roman Catholic Church, which won’t allow doctors or nurses affiliated with its hospitals to participate in aid in dying, even off-premises and on their own time. And some disability rights organizations strongly object to aid in dying: Not Dead Yet worries about a slippery slope in which the disabled will be targeted for euthanasia, and it views the desire to end life, even among the terminally ill, as suicidal. Other disability rights organizations, such as the Disability Rights Legal Center, support aid in dying for the terminally ill, Coombs Lee said. (Its new executive director, Kathryn Tucker, is the former director of advocacy and legal affairs for Compassion and Choices.)

It isn’t suicide when you are already dying, proponents say. “Americans are the only people in the world who think dying is optional,” said Linda Jensen, a former intensive care unit nurse and a friend of First Unitarian, who has assisted dozens of clients in her ten years as a volunteer with Compassion and Choices in Oregon.

Reluctance to face the issue of death head-on is due, in large part, to the removal of death and dying from the common experience of modern West­erners, writes Ann Neumann in the newly published The Good Death: An Exploration of Dying in America (Beacon Press, 2016). As we’ve added an average of thirty years onto the lifespan of an American, we’ve avoided necessary conversation about the process of death and dying, to the detriment of our health care system and our own emotional health, she argues.

For proponents of aid in dying, the key concept is choice. Since we all will die, the question is when and how, not if, Sinkford emphasized—so aid in dying offers a dignified, autonomous choice for the terminally ill. “I think our reluctance to accept this choice says more about our feelings about death than it does about the law,” said Griffith, whose mother, Helen Lee, chose to die surrounded by her family. “If you can see death as a final expression of who you are as a person, then [it’s essential] to have this option. To deny them that is to deny the humanity of people for whom this would be a natural thing to do.”

But even where aid in dying is legal, its proponents find much work to be done in educating the public—and even health care workers—about the law. Last year, Com­passion and Choices fostered a 33 percent increase in the number of prescribers in Oregon, said Whittaker, but challenges remain. Jensen is currently helping a UU who has a terminal illness. The woman asked her former doctor, who had moved to a new city, to assist her with aid in dying, but he could not due to policy in his new clinic. She then asked her new primary care physician, who “appeared shocked” and refused, according to the woman (who asked not to be named). However, her request prompted that clinic to establish a new policy on how practitioners should address such requests, Jensen said.

When Rod Daggett was diagnosed with a malignant tumor on his bladder last year, he and his wife, Fran Daggett, members of First Unitarian, agreed that he wanted to use the Oregon law when the time came. His primary care doctor was supportive but another doctor refused. “You’re going to kill yourself?” he demanded of Rod, angrily, and he insisted Rod have surgery even though he’d already given him a fatal prognosis, Fran recalled. Rod decided to take death into his own hands in June 2015 by a time-honored means that requires no approvals: he stopped eating and drinking, his discomfort and thirst managed by pain meds and good oral care. In less than a week, Fran said, Rod passed away peacefully.

Stopping eating and drinking “is a legal option in any jurisdiction in the country, and sometimes people do that if they have objecting family members, rather than leave a legacy of bitterness,” Coombs Lee said. It isn’t painful for anyone nearing death, she said, and oral care avoids the dry mouth feeling that causes suffering. The person typically dies of dehydration within five to fifteen days, she said.

“People are always asking me, ‘Oh, this must be so emotionally draining, you must get so depressed,’” said Jensen, the volunteer who has sat with many people as they died. “I say, ‘It’s the exact opposite.’ It’s endlessly fascinating and rewarding and touching and spiritually enlightening.”

When she became minister at First Unitarian in 1997, Sewell had deep reservations about aid in dying. She sympathized with the concerns of the disability rights community and others about a slippery slope. In the past two decades, her position has shifted. “Especially as I age I understand more fully how someone might make that decision, especially if they were in intractable pain,” said Sewell, who is 74. “It’s now an open question for me.”

But she retains some reservations. “Most people who choose death with dignity do it because they want to be in control of how they die. It’s all about dignity, not about pain,” she said. “So the question is, theologically, since we didn’t bring ourselves into this world, should we really want to control how we go out? That’s a legitimate question, how much we are called to be human on this earth and lose what we’re going to lose as we face our death.”

Will the death-with-dignity movement succeed elsewhere? “It’s a little bit hard to confidently predict there’s a groundswell,” said Sinkford, “but you do look at the way that marriage equality moved so rapidly—in the grand scheme of things—from something unimaginable to national law, and so it’s a source of hope.”

“God gave us brains and consciousness, and we have to use them to the best of our abilities,” said Lore. “We are in the face of desperate suffering, and when you are actually there you cannot imagine that a loving God would want that.”