Death Watch: Final Exit's clandestine ways have put the assisted-suicide network on life support

Apr 8, 2009 at 4:00 am

James Hoggard has helped four people kill themselves. Or, as he and fellow members of the Final Exit Network prefer to say, he has hastened their exits.

The first time took place in a small northern Iowa town three years ago, just after Hoggard joined Final Exit and became what the network calls an exit guide.

The old man was terminally ill. Hoggard can no longer remember his age or diagnosis, though he does recall that, except for one hand, the man's limbs were completely paralyzed. The man and his wife learned of Final Exit on the Internet and called the group's 800 number. Then they explained their case to a volunteer, also known as a first responder.

As network protocol dictates, the responder asked the man a series of questions, 25 in all. Where did he live? Did he have caregivers? Why did he want to end his life? Did his family know of his plans? Did they approve? Was he suffering from depression? Could he please send a list of his medications and a letter from his doctor confirming his diagnosis to the network's medical adviser?

A few weeks later, Hoggard and another exit guide made the journey to Iowa.

Hoggard is 74 years old. He grew up on a farm in Arkansas. For years he was a Baptist minister, until he realized his liberal inclinations were at odds, as he puts it, with a congregation accustomed to fire and brimstone. So he quit, moved to St. Louis and became an auto mechanic.

"I don't want life prolonged unnecessarily," says Hoggard. "I've always felt that people should be able to end their lives on their terms. I can't find anything in the Bible that condemns suicide."

The two guides arrived at the old man's house before dark. They left their car in the garage. "We don't like anybody to see a strange car parked outside," explains Hoggard, who won't identify the town. Again, following network procedure, they looked around for nosy neighbors or security devices that might alert police. Then they went inside.

"We had a long conversation. We talked about careers and neighbors. It was a normal conversation until we got to the purpose of our being there. He knew he didn't have much time left. We talked it over. He signed a paper indicating his intention to do this."

Then the guides left, promising to return a week later. They wanted to give their client time to pause, reflect and be certain of his decision. They also knew he had to buy the needed death supplies: two tanks of helium and an "exit hood," a clear plastic bag with a Velcro band that fastens around the neck, available for purchase over the Internet. Altogether, the helium and the hood would cost him less than $100.

When the guides came back, they brought a spare hood and extra helium, just in case the old man's equipment malfunctioned. They also came with a prepared statement — that he alone made the decision to end his life — for him to sign. Again, they sat in the living room with the man and his wife, chatting idly about neighbors and the weather.

"It was a normal conversation," recounts Hoggard. "I was surprised. Finally, he said, 'I'm ready now.' We went into the other room to give him and his wife a private moment. She did not want to be there when it happened."

Hoggard's bright blue eyes fill with tears. He pauses for a moment to collect himself.

"We went back in. He was lying on a bed. He was wearing the same kind of clothing you might wear at night. He was lying in the same position, like he was going to sleep. He pulled the hood down tightly over his face. He was able to use his hand, and he opened the two valves on the helium tanks.

"It seems to me there's some discomfort for the first minute or so," Hoggard continues. "He raised his head, like he was trying to get oxygen. But there was no more conscious behavior on his part. They're no longer conscious after 30 seconds. The doctors tell us this. After five minutes there was no more bodily action. He was still, but he kept his eyes open. He was the only one I've seen who kept his eyes open.

"We let the helium run out. [The other guide] was able to get the eyes closed. We told his wife he was dead. She sat there with him for a while. Then she told us she was ready for us to leave. We gathered up everything, the empty containers of helium, the hood."

Then they threw everything away, making sure to scatter the equipment in different Dumpsters around town. They instructed the man's wife to delete the e-mail and phone messages that would link his death to the Final Exit Network.

The next morning, after the body had grown cold, she would call the doctor and the undertaker. Helium leaves no traces. By all appearances, the old man had died in his sleep.

"We don't want the medical examiner coming in," explains Dr. Jerry Dincin, a clinical psychologist near Chicago and Final Exit's president. "Otherwise they can't get their insurance money."

The two guides took with them the old man's signed statement.

It was the only evidence that they were ever there at all.

In its literature, the Final Exit Network boasts that it's "the only organization in the United States willing to help individuals who are not 'terminally ill' — six months or less to live — hasten their deaths. No other organization in the U.S. has the courage to make this commitment."

"'Hasten your death' is a key term," explains Dalton Baker, a 71-year-old exit guide who lives in St. Louis and serves as the network's treasurer. "'Killing yourself' trivializes what we're doing."

"One thing everyone says — assumes — is that we do euthanasia," adds Ann Mandelstamm, 69, leader of the St. Louis chapter that formed two months ago. "We don't ever do that. No guide ever administers euthanasia. That term gets our hackles up."

Founded in 2004 as an offshoot of the Hemlock Society, which fell apart the year before, Final Exit has 3,000 members across the country, including 58 exit guides. Annual dues are $50. The network claims it has helped accelerate the deaths of between 130 and 200 terminally ill patients, most of them in New York, Florida and California.

"We're not Jack Kevorkian," says Jerry Metz, a Final Exit board member and retired physician, via telephone from his home in Addison, Maine. "We don't hook people up to a machine and say good-bye. We need to stay within the legal guidelines. There's no law that says you can't be in the same room when someone dies."

"We're operating within the law," insists the 78-year-old Dincin. "But at the margin. No one has decided the limits of assisted suicide in court."

"Some states have criminal laws against assisted suicide, others don't," observes Rebecca Dresser, a professor of law and bioethics at Washington University. (The practice is illegal in Missouri.) "The nature of common law is on a case-by-case basis. These cases are very rarely prosecuted.

"Whenever you help others commit suicide, you're vulnerable to prosecution," Dresser continues. "The requirements for material assistance are what people argue about. You could materially assist by providing knowledge, or by knowing what the person is going to do.

"But it's hard to argue that being there is 'assisting.' There's no legal requirement to be a Good Samaritan and rescue someone unless you have a special relationship, like a health-care provider or parent."

Critics say Final Exit members, especially exit guides, have a skewed moral code. "They color things for their own self-interest," says Stephen Drake, a spokesman for Not Dead Yet, a disability-rights group that vigorously opposes assisted suicide. "They confuse the public about what they're actually doing.

"If you look at the statistics for [assisted suicide], intolerable pain is not the reason most of those people want to commit suicide. They have a fear of being a burden, of future pain, of being alone. Pain is far down on the list. They have a fear of losing autonomy. So Final Exit gets to pat themselves on the back for saying they honor autonomy."

Dr. Timothy Quill, a professor of palliative care, or pain relief, at the University of Rochester School of Medicine, says it is critical that a doctor be part of any assisted suicide. "Very sick people need very sophisticated medical evaluation. It's not for volunteers and activists."

Physician-assisted suicide is legal in Oregon and, as of March 5, in Washington state as well. The requirements of the Death with Dignity Act are stringent: Patients must be within six months of death and certified as terminal by two doctors. They must also file three separate documented requests and wait fifteen days before receiving their lethal prescription. Since it went into effect in 1997, 401 Oregonians have taken advantage of the law.

"Washington and Oregon have good laws," Dincin told the St. Louis chapter at its first meeting in February. "But they don't deal with diseases like ALS [Lou Gehrig's disease] or Alzheimer's or Parkinson's when the time of death is uncertain."

"It can take five years to die from ALS," notes Baker, who is also a volunteer at BJC Hospice. "You become incapacitated. You lose muscle control, and then you eventually choke to death. It's a terrible way to die." (Baker keeps his Final Exit and hospice work separate: "I don't want people accusing me of harvesting patients.") [Editor's note: A correction ran concerning this paragraph; please see end of article.]

"I hear doctors say all pain can be managed," Baker continues. "But some pain cannot be controlled, and the only perfect answer is terminal sedation. The doctors give the patient morphine and drive him into a coma. This is an accepted medical practice. But some people don't want to go out that way. They'd rather go out with a good mind and on their own accord."

Final Exit's members refer to the period between the diagnosis of a degenerative illness and the point when a patient is physically incapable of turning the valve on a helium tank as the "window of opportunity."

Dr. Lawrence Egbert, 81, an anesthesiologist affiliated with Johns Hopkins University School of Medicine in Baltimore, is the network's medical advisor. It's his job to sign off on every case. He never actually meets the patients, but he relies on letters from their doctors and records of their initial phone conversations with first responders.

"We get occasional people who want to commit suicide and try to fake us out," says Egbert. "I read very carefully what the doctors and first responders say, and then I make the decision. If I'm uncomfortable, I call someone for a psychological point of view."

But Egbert rarely rejects a patient. Most applicants have given much thought to their decision to end their lives well before calling the network. Sometimes, though, it is difficult to distinguish between a patient who is clinically depressed and one who is depressed because of illness.

"Everybody with cancer gets depressed," Egbert says. "The question is: Is the depression dominant or is the cancer dominant? Sometimes patients just aren't getting enough care."

Says Dincin: "There are plenty of people who don't want to die. Look at Stephen Hawking. He's still living his life. It's not a life I would want to live, but he wants to do what he's doing. Do I have to live that way? The answer to that is no. My life is my life."

On the afternoon of February 25, in Dawson County, Georgia, some 50 miles northwest of Atlanta, Final Exit's clandestine ways finally caught up with the group.

That day, an exit guide named Thomas "Ted" Goodwin, the network's founder and former president, visited a client named Richard Sartain. In the past four years, Goodwin had assisted in 35 deaths, most of them in the southeast.

This was to be Sartain's "death event." He'd bought the exit hood and helium tanks, and Goodwin began to walk him through the exit procedure. He showed Sartain how to put the hood over his head and how to attach a hose to the helium tanks and run it up into the hood.

Then, according to court records, Goodwin climbed on top of him to demonstrate how he would hold Sartain's hands down to keep him from removing the hood. Goodwin later maintained that he only held Sartain's hand to comfort him and let him know he wouldn't die alone.

Sartain did not, as he claimed, have pancreatic cancer. In fact, he was in perfect health. "Richard Sartain" was the alias of an undercover agent for the Georgia Bureau of Investigation (GBI). For the past eight months, the agency had been looking into the June 2008 death of a man named John Celmer.

Celmer was 58 years old and living in Cumming, Georgia. He'd lost part of his face to jaw cancer. His doctors claim he was cancer-free at the time of his death. Still, by some accounts, he was depressed by his appearance and could no longer swallow. His estranged wife found Final Exit pamphlets among his things and called the police.

Goodwin's death rehearsal, says the GBI, is what it will need to prove in court that exit guides helped facilitate Celmer's death.

As soon as Goodwin finished showing the undercover investigator how he would die, agents burst into the house and arrested him. Goodwin was charged with assisting Celmer's suicide, racketeering and tampering with evidence.

The GBI also arrested Claire Blehr, the other exit guide in the Celmer case. In Baltimore, meanwhile, police apprehended Egbert and Nicholas Sheridan, Final Exit's southeast regional coordinator. All four were released on bail, but under the condition that they have no contact with any network member.

After the Georgia sting, search warrants were issued at fourteen locations in nine states, including Missouri, Florida, Arizona and Colorado. GBI agents and local police seized computers and cell phones belonging to members of Final Exit's executive board. They wanted evidence that Final Exit had assisted in other deaths.

Baker says the GBI and St. Louis police broke into his south St. Louis home while he was out and took his computer and files. "I just missed them by ten minutes," he recalls. "I was mad as hell. I refused to talk to them about the network. They called and asked me for my computer passwords. I thought it was kind of strange, because they wanted me to help make their work easier."

Kathleen O. O'Sullivan, a St. Louis Metropolitan Police Department spokeswoman, confirmed that the incident occurred.

On March 2, one week after the Georgia arrests, National City Bank in St. Louis — where Baker kept all the organization's funds — froze Final Exit's checking account when a Georgia judge issued a warrant to classify the network as a "criminal conspiracy" under the Racketeer Influenced and Corrupt Organizations Act (RICO).

"The RICO law is supposed to counter drug trafficking," Baker says. "This is an inappropriate application of that law."

Without money, Final Exit's operations ground to a halt.

"It's unfortunate," says Dincin, who suspects the network will never see its money again. "The GBI is using some tactics that would be better applied to the Hell's Angels and the Mafia and Colombian drug lords. They froze our assets without appearing before a judge. We had $550,000 in the bank. Now we have no money for legal defense. They declared us guilty before the trial even started."

This was not the first time Final Exit's tactics had gotten the group in trouble with the law.

At the time of the Georgia arrests, two exit guides were under investigation in Arizona for their roles in the 2006 suicide of a 58-year-old Phoenix woman named Jana Van Voorhis. (See "Death Wish," Phoenix New Times, August 23, 2007.) Van Voorhis did not inform her family of her plans. After her death her sister and brother-in-law claimed Van Voorhis did not have cancer, as she told Final Exit, but was, in fact, mentally ill.

Dincin concedes he's unfamiliar with the specifics of the Van Voorhis case but maintains that Final Exit did nothing wrong.

"Just because someone has a history [of mental illness] doesn't mean it's available all the time," he says. "There were a host of other difficulties. There were complaints by this woman's sister that she had been disinherited by $700,000. The sister was mad. We don't do anything to anybody they don't want done to them."

After the Van Voorhis affair, though, Final Exit began scrutinizing its clients much more carefully.

The Maricopa County attorney has yet to decide whether to press manslaughter charges against the two exit guides. The case of the so-called "Georgia Four" is also in legal limbo. No trial date has been set.

"We'll see what happens," says Mandelstamm. "This could shut us down. Or, if it comes out in the legitimate press, it could get people talking. When I was young, no one ever mentioned cancer out loud. It was, 'She has'" — Mandelstamm's voice drops to a whisper — "'cancer.' There's a secret phase and a scary phase, and then it's out in the open."

James Hoggard has noticed that sometimes his clients' bodies will jerk and appear to gasp for breath as they die. But he doesn't believe they feel any pain once they pass out.

"We used to kill chickens on the farm by wringing their heads off," he says. "We'd pick the chicken up and swing it around till the body fell off. The body tries to get up and run. Sometimes it takes two or three steps, but it's not controlled by the brain. It's the body reacting."

Since its inception, Final Exit has preferred helium as its killing agent. Says Dincin: "It's quick, painless, certain, comfortable and humane."

In the 1992 edition of his best-selling Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying, Derek Humphry recommended prescription drugs — specifically barbiturates, preferably Nembutal — ground up in Jell-O or swallowed with a stiff drink. He also suggested that patients tie plastic bags over their heads, just in case the pills didn't do the trick.

Deadly cocktails of this sort, though, often made patients dependent on their doctors and pharmacists. Humphry decided to bypass the medical profession altogether and, in the 2002 edition of Final Exit, unveiled a new method of painless suicide: inert gases, especially helium, which is easy to obtain.

"You can buy it at Toys 'R' Us!" Dincin proclaimed, to surprised laughter from the St. Louis group back in February.

Normally, you breathe in oxygen and exhale carbon dioxide. Most methods of asphyxiation prevent you from exhaling, so the carbon dioxide accumulates in the body and makes you gasp for air. Helium, however, flushes all the oxygen from the blood, and organs start to die off, one by one, starting with the brain.

Hoggard's companion, Julia Peggs, 64, attempted suicide eight months ago. Final Exit, she says, would not have approved her case. She'd recently had her colon removed and was in despair over the demise of an abusive relationship and unresolved grief over the suicide of her twin sister 30 years earlier.

After the colectomy, Peggs tried to slice herself open. "I was hoping to die in the ambulance because there had been a lot of blood. I felt myself going up and away. It felt wonderful. All the troubles of the world fell away. I thought I would see my sister. I was disappointed when the EMT started slapping my face around and giving me oxygen."

Scientists say that when the body senses impending death, it produces large quantities of soothing hormones, endorphins, to make final moments more pleasant.

Exit guides have also observed this sort of tranquility. Jerry Metz recalls one case where the client's wife sat at his feet with her eyes closed as he pulled the hood down over his head.

"She wanted to be with him, but not," Metz recalls. "She didn't see the 'V for Victory' sign he flashed with a big grin."

Lawrence Egbert joined the Hemlock Society fifteen years ago, after his minister asked him to help a fellow parishioner end his life. In the end, though, the patient didn't go through with it.

"His daughter didn't want it," Egbert remembers. "She thought it was bad, wrong. So he had two more months of Hell on this earth. He was doing what his daughter wanted. Was that better? I don't know. It's hard to argue."

Baker and Mandelstamm joined after witnessing the prolonged, painful deaths of close relatives.

They, like many of Final Exit's eventual members, wanted to be part of what Dincin calls a "direct service organization," more concerned with relieving suffering than trying to change the assisted-suicide laws. Unlike Dr. Kevorkian, who actually pushed the button to deliver fatal drug doses to his patients, the Hemlock Society's volunteers, called Caring Friends, did not play an active role.

When the Hemlock Society finally unraveled in 2003, its more radical members formed the Final Exit Network.

"A group of us got together in Chicago," Egbert remembers. "We said, 'What about the people right now who are suffering horribly?'"

The remaining members of the Hemlock Society evolved into Compassion & Choices, which has some 15,000 members and focuses on hospice care and legalizing physician-assisted suicide. Two days after the Georgia arrests, it released a statement disavowing any connection to Final Exit.

"There is a distinction between aid in dying and assisted suicide," says Compassion & Choices' president Barbara Coombs Lee in a phone conversation from her home in Portland, Oregon. "Assisted suicide is irrational, the result of mental illness. Aid in dying is not mental illness. It's a courageous and prayerful inner dialogue on the meaning of life."

Persis Oberreither, a member of Compassion & Choices in Florissant, says she would never use the helium method. "Visually, it conjures up an image to me of an executioner's hood with gas pumped in. There has got to be a better way. That method is so undignified, it defeats the purpose."

Kurt Perry was scheduled to die on February 26 at his home outside Chicago. The Georgia arrests disrupted his plans. He'd been talking with Dincin and Rosalie Guttman, his exit guides, for three years. "They listen to me and give me advice about how to go through my life," he told the Chicago Tribune, "until my decision is made and I've suffered enough."

Perry, who is 26, has Charcot-Marie-Tooth, a neurological disease that weakens the nerves that control muscles in the hands and feet. It is not considered fatal. Perry can still speak and walk with a cane, and experts say his condition probably won't get any worse.

How can Final Exit justify helping a young man with a non-fatal disease end his life?

"The right to die is a civil right," argues Dincin. "It's not a right of religion to determine, it's not a right of the government, it's not the right of your family and friends. Whose life is it, anyhow?"

"We get a very small number of nut cases who are attracted to our organization," admits network board member Jerry Metz. "Some are lonely, some want the attention and the drama. Some make us jump through hoops until we find out we've been had. Those are darned rare, fortunately.

"We're not interested in talking people into ending their lives," Metz continues. "We try to talk them out of it. Some members get tired and protest that this is what they really want to do."

If clients waver in their decision to die, the exit guides are instructed to walk away.

"There was one woman near New Orleans," Hoggard recalls. "She had told the first responder she was off-and-on about wanting to do this. Her condition had periodic pain, and when the pain was present, she wanted to exit. When it wasn't present, she'd call us and say she wasn't ready."

Hoggard and his partner made three separate trips to see the woman, at Final Exit's expense. Each time, she changed her mind. Finally, says Hoggard, "We told her, 'It's your decision, but we don't think headquarters would want us to come back.' She called us at 4 a.m. and asked us to come back. We went back, and she went through with it.

"I felt OK about it," he continues. "She had gone back and forth the whole time. She knew she could change her mind, but she was in so much misery. She knew what she was doing."

This is one of the contingencies covered at exit-guide training, which takes place three weekends a year, usually at a hotel in a conveniently located city. At training new guides study the group's history and exit procedures, listen to stories from experienced guides, practice handling the hood and helium tanks, and learn how to deal with police. ("We tell them to refuse to say anything until they have a lawyer," Metz says.)

Exit guides say they have few regrets about their work. When describing cases, they speak calmly and matter-of-factly, though some are reluctant to give out specific details.

"It's nicer to die at home with your family if it is your wish and their wish," says Baker. "It can be a very tender experience. One time, there were teenagers involved. We all sat around and held hands. The man's wife said a prayer as he was dying. It was very touching and satisfying."

Says Ann Mandelstamm: "It's not like we do this every week. The cases are spaced apart. The exit-guide part is the most sensational, but really we want to help people with getting older and avoid being caught without advance directives."

Mandelstamm notes that last year in Oregon, 89 people got prescriptions of lethal drugs under the Death with Dignity Act. But only 60 of them decided to use them.

"Most people want to know they have a way out if things get horrible," she says. "They just don't want to do it that week. It makes sense. They're entitled to a way out if they want it."

Hoggard's most recent case was a man in his early 90s who lived near Little Rock. "I don't remember his exact diagnosis. He was becoming less and less mobile, and he knew before too long he wouldn't be able to get out of bed. He talked to his son and daughter-in-law about taking things into his own hands. They went on the Internet and found Final Exit.

"His whole demeanor changed once he realized he could do his exit in a safe way," Hoggard goes on. "He was much less depressed. When he pulled the hood down over his face to breathe the helium, he was so happy to be doing that. I was able to help this man do what he wanted to do and, in my opinion, needed to do."

[Correction published 4/10/09: In the original version of this story, we misidentified the hospice agency for which Final Exit Network member Dalton Baker volunteers. Baker volunteers at BJC Hospice. The above version contains the corrected text.]