Faye Girsh stood before a room full of atheists and talked about an unusual passion. As senior advisor to the Final Exit Network, a national, nonprofit organization that helps people end their lives, the La Jolla resident is a leader in the right-to-die movement. It is, supporters say, “the last human right.”
It was May 26 at the North Park Recreation Center. In the gym, kids were shooting baskets. Next door, Girsh was describing the arrests of several Final Exit Network members charged with manslaughter, conspiracy to commit manslaughter, assisted suicide, tampering with evidence and racketeering—charges the group considers outrageous.
More arrests were likely, according to the FBI. The Georgia Bureau of Investigation also froze the group's funds. “Their plan is to bankrupt us by seizing our bank accounts and those of our affiliates,” Final Exit Network's website declares. Somewhere in America, law enforcement was on the trail of the group's members, perhaps even the 76-year-old Girsh, who is herself an “exit guide.”
“I expect a knock on my door at any time,” she told the crowd.
While suicide, even attending a suicide, is legal, helping someone do it is not. In California, doctors who enable dying patients to hasten their death are committing a crime. Final Exit claims its services help fill a huge, unmet need.
“We cannot wait for laws to change; people are suffering now!” its website urges. A signed letter on the site reads: “Thank you for forming Final Exit Network. It is a relief to know there are individuals right here in San Diego who are able and willing to help anyone who needs to end an intolerable life.”
“It's an amazing experience,” Girsh said in an interview. People are so thankful not to have to do this alone, she said, comparing her work as an exit guide with that of a midwife.
But not everyone is relieved to know such a service exists or that there's a movement dedicated to legalizing assisted suicide. Many disabled people and others at war with the notion that they may be suffering “intolerable” lives fear the right-to-die movement.
At the North Park meeting, Girsh described the Feb. 25 arrest of Ted Goodwin in the home of a cancer-stricken Georgia man who, having paid the $50 annual membership fee and documented his condition, wanted to take his life. It was a typical “exit” with a helium tank and a hood to trap the poison gas, both purchased by the man. As Goodwin demonstrated how he would hold the man's hands after he donned the hood, Girsh said, “the guy jumped up, shouting, ‘You're under arrest!'”
The man was an agent with the Georgia Bureau of Investigation, and he claims the hand-holding would've prevented removal of the hood had he changed his mind. Final Exit Network's training manual reveals that it's part of the method, and the person knows about it in advance.
Final Exit's active role in helping people end their lives has earned it a reputation as the most radical arm of the U.S. right-to-die movement, which first coalesced as the Euthanasia Society in 1938. With World War II and the discovery of Nazi euthanasia programs, the idea drifted underground. In 1980, the U.S. Hemlock Society was jumpstarted in the Santa Monica garage of British-born Derek Humphry, who had lost his wife to cancer. In 1991, he wrote a bestselling suicide guide called Final Exit. Like the group it later inspired, the book was meant to aid those who wanted to take their lives quickly and painlessly.
An underground means is necessary, proponents argue, wherever laws don't allow doctors to prescribe a lethal dose of drugs; Hemlock's mission to legalize “voluntary euthanasia and physician-assisted suicide for terminally and hopelessly ill adults” has succeeded in only two states.
“We are targeting California first, of course,” Humphry told an audience in 1991. “It is the bell-weather state, as you know, of so many great social issues.”
By 1992, Hemlock had 80 chapters and 46,000 dues-paying members. Its status as a 501 c4 nonprofit allowed it to lobby and campaign. Girsh joined in 1986, inspired by a speech Humphry gave. She started Hemlock San Diego in 1987 and, from 1996 to 2001, served as president of Hemlock USA.
But its swelling ranks didn't make Hemlock any less controversial. Where some saw compassionate proposals, others saw a creeping “culture of death.” Several groups fought the legislation, arguing that it puts too many at risk. Opponents include Berkeley-based Disability Rights Education and Defense Fund (DREDF), Californians Against Assisted Suicide, Association of Retarded Citizens, the League of United Latin American Citizens and others. The Catholic Church has thrown in its financial might, bolstered by the arguments of disability advocates.
In 2004, after a stint as End-of-Life Choices, Hemlock morphed into Compassion and Choices, an advocacy, lobbying and consulting group led by former HMO executive, nurse and lawyer Barbara Coombs-Lee. (Focus groups showed voters choked on the name Hemlock, a poison weed Socrates used to kill himself). But there was an even bigger shift in direction. While Hemlock considered the right to take one's life “at a time and place of one's choosing” to be sacrosanct. Compassion and Choices focused only on the terminally ill. Girsh and other Hemlock devotees who had helped define the movement disliked the changes and kept the society alive in San Diego, Illinois and Florida. Humphry's current project is the Euthanasia Research & Guidance Organization, which seeks better methods for a peaceful death. All of the groups belong to the World Federation of Right to Die Societies, whose president, Ted Goodwin, is the former president of Final Exit—and one of its members facing trial. Girsh is both senior advisor to Final Exit—a 3,000-member volunteer organization—and president of the Hemlock Society of San Diego.
The right-to-die movement's first win was Oregon. The Death With Dignity Act, coauthored by Coombs-Lee in 1994, allows terminal patients the right to a lethal prescription. In November 2008, Washington passed similar legislation, funded by Compassion and Choices with help from Hemlock San Diego. In a fundraising letter, Girsh mentioned the “domino effect” the law would have. “We feel that a victory in Washington is the best hope for California to have such a law,” she wrote.
California, their hope for the nation, thought about it in 1992, 1995, 1998, 2000, 2005 and 2007, when it nearly passed a doctor-assisted suicide law. In September 2008, a compromise bill sponsored by Compassion and Choices made it into law. Assembly Bill 2747 requires that patients diagnosed as terminal be given information, if requested, on their end-options. In a letter urging the governor to veto it, DREDF policy analyst Marilyn Golden criticized the bill as bombarding patients who have just learned they are terminal with information about dying and, she wrote, for “allowing or encouraging medical practitioners to refer patients to organizations with end-of-life care consulting.” The only such organizations, Golden wrote, are the bill's sponsor, Compassion and Choices, and Final Exit Network, “both of which have their roots in the Hemlock Society.”
Speaking to the Atheist Coalition at the North Park meeting, Girsh was among supporters. One man wore a T-shirt saying “Just Say No to Antiscience, Proselytizing Politicians. Keep Church and State Separate.” (The movement is crowded with atheists, secularists, rationalists, separationists, Universalist Unitarians, and libertarians.)
“Do you think the opposition to your group is mostly religious?” a man asked.
Yes, Girsh said, mainly the Catholic Church and “more recently the right-to-life people.”
But religion is the last thing on the minds of DREDF and others who believe such laws would lead to healthcare rationing and that the poor, elderly and disabled would be targeted. The fatal formula: profit-hungry HMOs plus skyrocketing medical costs, minus millions of dollars that could be saved by offering assisted suicide in lieu of “futile” treatment.
“How many will be pushed into desperate action based on fears of sickness, disablement and financial burden?” Golden said in an e-mail interview.
At the meeting, Girsh noted that “the Democratic Party is soliciting ways to save the system money.” She quoted from a study that suggests assisted suicide is one way to save. A California death costs $23,000. A Manhattan death, roughly $34,000. In Oregon, however, with its assisted-suicide option, people are more likely to die at home with fewer visits to the ICU, and the cost is only $14,000. “Oregon is the best state to die in,” Girsh concluded.
For some, however, it may simply be the fastest state to die in. In two well-publicized cases, state insurance plans denied low-income terminal patients life-extending treatments but offered to pay for lethal injections (which cost only about $50). Oregon's annual reports show the main reason cited for using the law isn't pain but, rather, loss of autonomy. “Fear of being a burden” also far exceeds concerns about pain.
The Oregonian newspaper, which opposed the Washington initiative, offered another critique, saying in an editorial that the law is mainly overseen “by a bunch of insiders.” The paper was referring to Compassion and Choices, which executive director George Eighmey calls “the stewards of the law.”
Opponents of assisted suicide also argue with the study often cited to suggest economics isn't behind the push for assisted suicide. An article by doctors Eziekiel Emanuel and Margaret Battin in The New England Journal of Medicine claims the practice would save the system only about $627 million a year, a fraction of total healthcare spending. The problem, critics say, is that the study looked only at the last four weeks of life. But end-of-life care may stretch over months or years, leading to a huge underestimate of potential savings.
DREDF analyst Golden points to one case in Oregon in which a patient diagnosed with six months to live was still alive over a year later. As Geoffrey Fieger, attorney for Dr. Jack Kevorkian, said in an interview on public television's Off the Record, “There isn't a doctor or medical school in the country that teaches you whether somebody's six-minutes, six-years or six-days terminal.”
Right-to-die supporters liken their struggle to the dark ages of civil-rights movements, evoking images of back-room abortions and botched suicide attempts. Many are seniors, making it a “silver rights” issue. But economics has always been part of the discussion.
Freedom to Die, a book coauthored by Hemlock's Humphry, addresses the money angle, saying, “the increasing cost of healthcare in an aging society, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”
Jennifer Restle, a North Park resident born with birth defects and legally blind, fears that possibility. “Passing legislation like this creates a major mess with disabled folks very much on the losing end,” she said in an interview. “The way our society devalues disability will have a direct impact on the choices people make about their lives.”
Restle doesn't think any safeguards can prevent abuses. “My stomach becomes a nest of knots at the mere thought,” she said of assisted-suicide legislation. “It feels like a very personal attack.”
Restle has been through 20 reconstructive surgeries. Too often, doctors have pushed an option for her based on their own biases about disability, and, she said, disabled people struggle to obtain health services, like caregivers. “If these lacks were made right, it would make disabled people far less vulnerable to the can of worms these laws open.”
But Restle doesn't want to judge other peoples' lives or choices. “I hold the bone-deep belief that each person has ultimate autonomy over their existence,” she said. As much as she “loathes and fears the outcome,” she doesn't condemn assisted-suicide laws.
Others do, afraid that cultural acceptance of the practice will lead to looser laws. “Most of their membership support broader laws,” says Stephen Drake, an activist in Rochester, N.Y., who started a group called Not Dead Yet to oppose assisted suicide. “Statutes still require intervention into the potential suicides of young, healthy, non-disabled people,” he says. “Only the old, ill and disabled are singled out for this right—from where we sit, this doesn't sound like autonomy, but something uglier.”
Kathi Hamlon, policy analyst for the International Task Force on Euthanasia, another opponent, thinks “death on demand” is the goal—for everyone, terminal or not.
“If assisted suicide is a fundamental civil right, then it's fundamental to all. You cannot limit who qualifies.” Hamlon believes such laws would go from assisted suicide to euthanasia (where someone besides the patient delivers the drug, opening the door for abuse). Oregon's and Washington's laws are discriminatory, she says, because the disabled, terminally ill person cannot, as the law requires, deliver the fatal dose themselves. “Compassion and Choices is just waiting for a suitable case to challenge their own law.”
What launched California disability groups into battle with the right-to-die movement was a 1983 case. Elizabeth Bouvia, 26, was a disabled San Diego State University graduate who sought help from the ACLU to die.
Bouvia suffered from cerebral palsy and sought legal help after a Riverside hospital refused to let her starve herself. Disability advocates argued that Bouvia, who had endured a series of crushing emotional events, including miscarriage and divorce, needed suicide counseling. Instead, experts jumped in to fight for her right to die. One of them was Girsh, an ACLU board member, Harvard-trained educational psychologist and expert in juror attitudes toward “death qualification” in capital cases. Girsh argued that Bouvia was competent to choose. Bouvia's lawyer was Richard Scott, a co-founder of the Hemlock Society.
Disability activists claimed Hemlock wasn't protecting Bouvia's civil rights but, rather, using her to enact new laws. In 1986, in a landmark decision, Bouvia won the right to starve and dehydrate herself. In a strange irony, her attorney, Scott, later committed suicide by shooting himself, while Bouvia is still alive today (though she doesn't embrace being a symbol for the disability movement, according to a story in The Los Angeles Times).
The case was not only a catalyst for opponents, but also for Girsh and her involvement in the right-to-die movement. Before that, she says, “I had never encountered anyone who wanted to die and knew nothing about it.” The movement made strides, as well; Bouvia won the right to die, but she wasn't terminal.
When Girsh was asked at the meeting if exit guides “counsel people who may simply have psychological problems,” she pointed to Oregon. “Fourteen people have died this year,” she said, “and none have gotten mental-health evaluations.” (Patients seeking assisted suicide must see two doctors first; only if one sees the need is a patient referred to a psychologist.)
But Final Exit volunteers aren't required to have mental health training. Guides can be “anyone with a big heart,” as a San Diego recruiter wrote in a newsletter.
On April 12, 2007, members of Final Exit allegedly helped Jana Van Voorhis kill herself in a case that reminds disability advocates of Bouvia. Van Voorhis' friends and family believed she was too emotionally troubled to know what she wanted, according to a story in the Phoenix New Times. Van Voorhis was non-terminal.
So was John Celmer, who, with the alleged help of Final Exit, committed suicide in June 2008. It was Celmer's death that led to the Feb. 25 arrests of Goodwin and three other Final Exit members that Girsh discussed at the North Park meeting.
When Washington's law passed, Final Exit issued a press statement saying the law doesn't go far enough.
“I think the criteria should be unbearable suffering, as defined by the patient, due to a incurable physical condition,” Girsh told CityBeat.
Final Exit's website claims it's “the only organization in the United States that will help individuals who are not ‘terminally ill'—6 months or less to live—to hasten their deaths.” Candidates include people with Parkinson's, Alzheimer's, multiple sclerosis, lung disease and “many other intolerable conditions”—people who want to end their lives but don't know how.
“We couldn't just tell people to go read a book,” Girsh told the Atheist Coalition.
Back in 1998, a decade before the Washington law passed, Girsh launched the Caring Friends program, Hemlock's first official “exit” strategy for the incurably ill. Volunteer training began in San Diego. Girsh described it in her speech as providing support “for people with hopeless illnesses that might not cause death in six months.” The method used relied on the work of another group that formed in 1998 called NuTech (New Technology for Self-Deliverance). NuTech, led by Phillip Nitschke, sought more reliable alternatives to sodium pentobarbital. Hemlock gave Nitschke a grant to discover “end-of-life medications,” according to a newsletter. NuTech's first success was helium. When Compassion and Choices took over, Caring Friends became “just for terminally ill people,” Girsh told her audience. In 2002, Girsh was demoted to vice-president and was fired altogether one year later.
In 2004, Girsh and other Hemlock dissidents met with Humphry in Chicago and formed Final Exit Network. Some say its vigilante-style gives credibility to the more moderate Compassion and Choices. When Final Exit members were arrested, Coombs-Lee issued a statement that criticized the network: “Failing to legalize and regulate aid in dying only encourages an unsafe, underground practice.”
The more radical work of Australia's Nitschke, a Final Exit ally and founder of Final Exit (Australia), aka Exit International, sparks the same calls for regulation through assisted-suicide laws. Nitschke has staged workshops in which elderly participants concoct their own “end of life pills,” promoting change through “civil disobedience.” In 2003, he planned to debut a carbon-monoxide-spewing suicide device—the CO Genie—at a San Diego Hemlock NuTech conference, but it was confiscated in Sydney, according to an Associated Press story. Nitschke started Exit International in 1997 after the overturning of the world's first voluntary-euthanasia law. He opened an office in Coombs-Lee's state of Washington the year the Supreme Court upheld a ban on assisted suicide there. He opened another in Michigan, where Dr. Jack Kevorkian was shut down by disability activists.
“Do exit guides ever ask people if they think there's an afterlife?” a woman asked Girsh at the meeting.
“No.” Girsh sounded surprised by the question.
Another woman's cell phone rang loudly.
“Ah, bells are ringing,” Girsh murmured.
The talk ended and she invited listeners up to buy DVDs of Humphry's Final Exit.
One week later, Girsh left for Europe. According to disability group Not Dead Yet's blog, she stopped in Chicago for Final Exit's annual meeting. She and Humphry were greeted by chanting activists waving “We Want to Live!” banners.
Ken Fousel, former president of the Hemlock Society of San Diego and now its “president emeritus,” is a Final Exit member. Sitting outside a cafe near the Joyce Beers Center in Hillcrest, where Hemlock holds meetings, Fousel, a tall man in his 80s who walks with a cane, said that what drew him to the right-to-die movement was a midlife crisis that left him suicidal. Fousel went into counseling. “It very quickly got me turned around,” he said. “I hadn't thought this thing through.” He realized his quest was more about how to live: “What should I do with my life before I die?”
But the end-of-life topic lingered. Years later, he read about the Hemlock Society of San Diego and decided to call.
“Faye Girsh answered the phone,” he said.
Fousel attended meetings for a few years before joining. In its heyday, 2000 through 2005, he said, the group had more than 1,000 members. ”Hemlock San Diego,” he said, “has always been one of the largest and most influential chapters in the U.S.”
Fousel wasn't happy with the merger-takeover. “Compassion and Choices came in with a totally different mindset,” he said. “They wanted to impose their restrictions and controls. They took over in a larger philosophical sense. [Coombs-Lee] squeezed everybody out of the movement.”
But if Compassion and Choices stole the show, they haven't killed the program. Hemlock San Diego is “totally separate from Compassion and Choices,” Fousel said.
Nor have the arrests or freezing of its funds stopped Final Exit. “We're still in business,” Girsh says.
And while Hemlock is down to 250 members, it still can raise money. “Hemlock Society of San Diego is matching every dime,” Girsh said at the atheist meeting about efforts to fund Final Exit members' trials.
“Our goal has never changed,” Fousel said, but our specific activities have because we no longer belong to a large group.”
One mission, rooted in Humphry's work, is the search for the peaceful end. Foregoing nourishment “is not painless,” Fousel said. “Even with dehydration, the dying process is not an easy ride.”
Compassion and Choices stopped supporting Nitschke, but, according to his website, in 2004 his work “came of age with the first successful synthesizing of a homemade Peaceful Pill.” The concoction was a “murky colored liquid that smelt like some exotic liqueur,” one that “heralded new possibilities for Exit members to create their own end-of-life choices.” Work on “physical” methods continued, as well. “This year, the plastic bag was revisited,” Nitschke wrote.
“For Hemlock, helium was just one method,” Fousel said. “Final Exit uses only helium.”
As baby boomers age, Fousel thinks people will warm to the topic of peaceful pills. “Right now, they're bullet-proof,” he said. “They think they're never going to die.”
He calls Alzheimer's and dementia—mental disability faced by almost half the population by age 85—“the Achilles heel of the movement.” Final Exit accepts people in the early stages, but the person may be cutting their life short by 15 years or more. For that reason, Girsh says she has developed her own advance directive “listing the situations in which you should be able to get a lethal injection, even if you are no longer competent.”
What everyone in the movement agrees on is the need to “empower the individual,” Fousel said. “The great unsolved problem is the anxiety. Death has gone on for millions of years. We're just a speck on the beach. Embrace it and take control over it.”