November of the Soul

by George Howe Colt

  Some get the medication but never feel the need to use it. A policeman and avid hunter with neck cancer, told by his doctor that the disease would soon invade an artery and cause him to bleed to death, talked of shooting himself. His volunteer described the effect such a violent death might have on his family and persuaded him to try hospice care. The man stopped talking about shooting himself. Although he eventually obtained the lethal medication through the Death with Dignity Act, he died without taking it, in his own bed, with his wife and son at his side—one of fifty-nine potential violent suicides Compassion in Dying estimates that it helped avert during its first five years in Oregon. (Most of those fifty-nine died naturally of their illness; twenty took medication to end their life.)

  Those who do end up choosing suicide almost always want Compassion volunteers with them when they die, not only to ensure that everything goes smoothly but because they have grown so close. The volunteers are used to hard-to-ask questions: How does the medication taste? How long will it take to slip into a coma? Will I lose control of my bowels? Compassion in Dying prefers that two volunteers be present so that they can support both the person who is ending his or her life and the family members and friends in attendance. Although the organization never provides the medication, in some cases a volunteer will prepare the lethal dose, dissolving the barbiturates in water and handing the glass to the client. As of 2003, Compassion in Dying had helped 291 clients to what its staffers call “hastened deaths.”

  Compassion in Dying has not been the only group to offer such tangible support. After Derek Humphry left, the Hemlock Society continued to fight for assisted-suicide legislation. But when other states failed to follow Oregon’s lead, the organization decided to take matters into its own hands. In 1999, Hemlock launched Caring Friends, a program in which trained volunteers offered “personal support and assistance in dying” to terminally ill members. (Although the Caring Friends service was available to members only, with the help of a fax machine one could—and some did—join Hemlock and initiate a request for Caring Friends services the same day.) Applicants for the program sent in their medical records, a copy of their advance directives, and a personal statement describing “how the illness has impacted his or her life, [and] why a hastened death would be considered.” After reviewing the documents, a Caring Friends “counselor” contacted the applicant for an interview. If the counselor determined that the applicant fulfilled the program requirements, the Caring Friends’ Senior Committee discussed the case and decided whether to proceed. (Hemlock refused to accept people into the program if their loved ones opposed their plan, in part because disgruntled family members might go to the press or to the police.) If so, one of more than a hundred trained volunteers around the country was assigned to the case. The volunteer visited the client—by airplane if necessary—a number of times “to establish a relationship as a caring friend,” by listening, discussing the situation, and exploring issues and options. If the client still wished to end his or her life, the Hemlock volunteer and the client settled on a time and a method.

  In the first few years of the Caring Friends program, most clients used barbiturates, but as it became increasingly difficult to obtain lethal dosages, there was a shift to plastic bags filled with helium. (Helium provides a quicker death than plastic bags alone, because the gas forces air out of the bag, depriving the person of oxygen.) Some considered it a less aesthetically pleasing method than a barbiturate overdose, Hemlock admitted, but it was no less effective and was “the one volunteers are trained to understand.” (Although Caring Friends drew on the advice of physicians, the plastic-bag-and-helium method enabled it to carry out its work without a doctor’s assistance. “This isn’t rocket science—you don’t need four years of medical school,” Hemlock executive director Faye Girsh told the audience at a right-to-die conference in 2002.) Like Compassion in Dying, Hemlock did not supply the means to the end; its newsletter, however, carried advertisements for an “EXIT BAG” whose special features, according to the information sheet that accompanied each order, included “adjustable Velcro strip for snug but comfortable fit with sewn-in elastic and flannelette collar; large size to minimize discomforts of overheating and breathing difficulties.” As the information sheet further noted, “The customized EXIT BAG takes the guesswork out of the use of plastic bags. Instead of using bags that are too small, faulty in some way, fastened too tightly with elastic or tape, the customized EXIT BAG allows you to make personal adjustments for safety and comfort.” (Although a model specifically designed to be used with helium was eventually made available, Hemlock’s newsletter advised that one should say good-bye before the bag is pulled over the head since “the helium makes the voice sound like Donald Duck.”

  On the appointed day, the Caring Friends volunteer and a “senior volunteer”—usually one of four physicians associated with the program—were in attendance. Richard MacDonald, a retired family-practice physician and medical director of Hemlock, who personally presided at more than eighty-five Caring Friends planned deaths, described his function thusly: “I’m sort of a midwife to ensure that we depart safely and surely and as peacefully as possible.” As of 2004, more than 150 Hemlock members had departed with the assistance of Caring Friends.

  By then, Hemlock had undergone a transition of its own. In 2003, acting on the advice of political strategists and public relations experts who worried that the group’s obscure name and rough-and-tumble reputation might hinder its ability to help get physician-assisted-suicide legislation passed, the society changed its name to End-of-Life Choices, a name only a focus group could love. (In a bit of revisionist history, Socrates, who poisoned himself rather than getting a doctor’s help, was now considered something of an unsavory character.) Hemlock softened not only its name but its image. Its familiar logo, a sprig of hemlock inset with the words Good Life, Good Death, was replaced by a generic drawing of a sun, although whether the sun was rising or setting was a matter of interpretation. The End-of-Life Choices Web site, which featured photos of fortyish couples strolling in a wooded landscape, clearly in the springtime of their lives—even the leaves on the trees were green—had the warm ambience of television ads for Viagra. But its new name and new look were short-lived. In November 2004, End-of-Life Choices joined forces with Compassion in Dying to form Compassion & Choices. (Caring Friends and the Compassion in Dying support program have been combined under the rubric Client Services, making it sound as if it were part of a brokerage house and not an organization that specialized in “hastened deaths.”) Derek Humphry had always joked that once its mission was accomplished, Hemlock would commit “corporate suicide.” Instead, he wryly noted, the organization had suffered “death by takeover.”

  At the age of seventy-five, Derek Humphry might well be content to act as a sort of rabble-rouser emeritus of the right-to-die movement, feeding the occasional pithy quote to the media and holding forth on the history of the struggle to the high school and college students who approach him for help with their research papers. But though he no longer gets up at 3 a.m. to drive hundreds of miles to give a speech at a nursing home, he continues to speak out on assisted suicide and euthanasia. He still supports right-to-die legislation, but spends less of his time working for it. “I’m more interested in the practical side of assisted suicide,” he says.

  From his home near Eugene, Oregon, where he lives with his third wife, Humphry runs the Euthanasia Research and Guidance Organization (ERGO), a bare-bones, nonprofit operation devoted to offering information on end-of-life choices and furthering investigation into suicide techniques. He keeps a blog about right-to-die issues. He oversees ERGO’s online store, which markets, among other right-to-die-themed items, the third edition of Final Exit (containing a description of the helium bag technique); Final Exit: The Video; The Good Euthanasia Guide 2005 (“The only desk reference book for planning to die well”); and “Self-deliverance from an end-stage terminal illness using a plastic bag,” a four-page pamphlet i
n which Humphry outlines a thirteen-step guide to asphyxiation, illustrated with photographs of a woman demonstrating the correct method. (In the manner of a teen magazine describing a pop star, the ERGO Web site also lists Humphry’s “personal favorites”: visitors to the site are informed that his favorite flower is the daffodil, his favorite car is the Volvo 740 turbo wagon, and—make of this what they will—his favorite hero is Charles Darwin.)

  ERGO is also one of the main backers of the New Technology in Self-Deliverance Group (NuTech), a loose-knit coalition of twenty-four physicians, anesthesiologists, engineers, and laypeople from around the world, devoted to finding alternative methods for ending one’s life without the help of a physician and without breaking the law. “We’re not very active,” says Humphry. “We only call a meeting when someone’s got an idea that needs to be assessed, weighed, and tested.” NuTech was the organization responsible for developing the helium-and-plastic-bag technique. Its most controversial member is Philip Nitschke, a physician and physicist who is the head of Exit Australia, an assisted-suicide advocacy group. A few years before NuTech was formed in 1999, he invented a computer program called Deliverance, which was rigged to administer a deadly dose of barbiturates if three questions were answered in the affirmative. (The final question: “If you press this button, you will receive a lethal injection and die in fifteen seconds. Do you wish to proceed?”) The device was used by four people in Australia’s Northern Territory during a nine-month period in 1996–97 when assisted suicide was legal there. Nitschke, who has said that a painless suicide should be available for anybody who wishes it, runs “euthanasia clinics” across Australia in which he offers the latest information on how to take one’s own life. To skirt laws against assisted suicide, he has suggested chartering a ship so that those seeking euthanasia might sail beyond the Great Barrier Reef into international waters, where assistance might legally be given. In 2002, he developed the COGEN, a device that produces lethal carbon monoxide—up to a liter per minute—and pumps it through a nasal breathing tube. (The device can be made at home, Nitschke has said, for about thirty-five Australian pounds. It is based on a chemical reaction between sulfuric acid and formic acid. “If you can’t get your sulfuric acid,” he notes, “you can go and get it out of your car battery. For formic acid you can go crush some ants.”) “Scientifically it worked,” says Humphry, “but practically, it was difficult to figure out how to make it work. What would the little old lady in the Bronx do with it?” NuTech’s Holy Grail is the so-called Peaceful Pill, a nonprescription lethal dosage. To that end, Nitschke has been trying to find a way to manufacture Nembutal at home.

  Humphry’s preference for the practical is evident in his most recent enterprise. Disillusioned with the buttoned-down direction taken by Hemlock, culminating in its merger with Compassion in Dying, and frustrated by the organization’s failure to persuade states other than Oregon to pass assisted-suicide legislation, Humphry and a number of Hemlock and Caring Friends veterans started the Final Exit Network in 2004. In Humphry’s words, the group is setting up “a network of people all over the country who will go and help people die under certain circumstances.” Unlike Compassion & Choices, the Final Exit Network will be purely practical. (“We applaud the work of organizations that seek legislative action to strengthen our right to die a peaceful and painless death at the time and place of our choosing,” reads a Final Exit statement. “However, we feel that legislative change will not come soon enough for the many people who need help NOW and in the interim!”) Says Humphry, “During the nineties, we kept quiet—even myself—about who would give help, in order not to get the Oregon initiative and other legal efforts in trouble. But now that we’re at a political standstill, that’s out the window.”

  An all-volunteer organization, the Network has no staff and no offices and conducts business as much as possible by telephone, e-mail, and fax. When a member ($50 annual dues for one, $75 a couple) seeking its services contacts the Final Exit Network, a “First Responder” explains the Exit Guide Program. The Evaluation Committee, consisting of the medical director, a hospice worker, and a veteran Hemlock volunteer, examines the applicant’s medical records and discusses the case. If the applicant is accepted, a trained Exit Guide will contact him and arrange a personal interview. The guide may encourage hospice care or suggest a consultation with an oncologist or a psychiatrist. The guide will also provide “information on all alternatives for care at the end of life, including all legal methods of self-deliverance that will produce a peaceful, quick, and certain death.” Ideally, a death is attended by one of several doctors associated with the Final Exit Network, but that is not always possible. Says Humphry, “We have trained guides around the country who, in the absence of doctors—we can’t have doctors everywhere—will go sit with them, talk with them, be with them, as they carry out their own self-deliverance. . . . There’s no need for Kevorkian anymore.”

  Unlike Compassion in Dying, which will assist only terminally ill people, the Final Exit Network will consider not only terminally ill applicants but, according to their literature, those with ALS, Parkinson’s disease, multiple sclerosis, muscular dystrophy, Alzheimer’s disease, congestive heart failure, and emphysema, among other incurable illnesses. (“We will serve many whom other organizations may turn away,” its Web site boasts.) Unlike Compassion in Dying, whose method of choice for “hastened death”—what Humphry terms “the medical way”—is a dose of barbiturates, the Final Exit Network recommends the helium-and-plastic-bag method, although its volunteers will also aid patients who have managed to obtain lethal medications. “Drugs are hard to get and a bit risky,” Humphry points out, while the ingredients for the helium-and-plastic-bag technique are readily available. Although the Final Exit Network will not supply the means, by calling a telephone number listed in the newsletter, a member can purchase an Exit Bag manufactured by a network member in Montana especially for use with helium. “You don’t really need to buy a special bag—you can get the materials and put together a plastic bag adapted for helium yourself,” says Humphry, “but it’s typically American that if there is something ready-made available, you get it. People always want the best and the newest.”

  Like Hemlock twenty-four years ago, the Final Exit Network seems to have gotten up and running with great speed. The first crop of fifteen new Exit Guides from across the country were trained in November of 2004. The two-day session was held in a conference room at the Marriott Airport Hotel in St. Louis, beneath a “Wall of Fame”—photos of assisted-suicide pioneers including Derek Humphry and Jack Kevorkian. The guides listened to speeches outlining the group’s procedures and philosophy, learned about the status of assisted suicide around the world, and were instructed by the network’s medical director in the helium-and-plastic-bag technique. “Then—the highlight of the weekend—the Exit Guides each got to participate in a hands-on training with a Senior Guide,” reported volume 1, number 1, of the Final Exit newsletter. “We all exchanged opportunities at being the ailing member, the guide, and the senior. These rehearsals were with real helium, real exit bags, and real dialog. Each person got to show how they would handle a similar situation. The group was through by noon in time to catch their flights back home.” A second group of guides was trained in March of 2005. The Network’s goal is to train enough guides around the country so that no guide will have to travel more than three hundred miles to be with a member when he or she “self-delivers.”

  The Network’s second newsletter reported that in the group’s first three months of existence, the guides “served” two people. The newsletter added, “We have 33 cases on our clipboards right now, all awaiting the Member’s go/no go decision.” Says Humphry, “We hope to build a reputation like that of the Red Cross or Doctors Without Borders—although not on that scale, of course—to be known as people of humanity who are concerned with suffering and will do whatever they can to help.”

  III

  “THE LIMITS ARE OBSCURE . . . AN
D EVERY

  ERROUR DEADLY”

  AT THE HEMLOCK SOCIETY’S Second National Voluntary Euthanasia Conference, I had been impressed by the pep and can-do attitude of the Hemlock members. I had also been impressed by the vitriol that those Hemlock members inspired. Outside the hotel, a dozen chanting protesters marched in a tight circle at the entrance to the hotel driveway. They carried placards that read THIS HOTEL LOVES NAZIS and PULL THE PLUG ON THE HEMLOCK SOCIETY and passed out leaflets urging passersby to help halt the “international celebrations of Hemlock’s death cult.” On the sidewalk a folding table was adorned with a plastic milk bottle marked JONESTOWN KOOL-AID. To guests entering the hotel the protesters shouted, “Don’t go in—the water is laced with cyanide.” One man faked a German accent, drawing laughter from the others. Occasionally, a protester called out a rhyming couplet; the others hooted with delight, then took up the chant.