Wednesday, March 18, 2009

With arrests of Final Exit members, man who wanted to die puts that on hold so he can speak about right-to-die issues

From the Chicago Tribune:

Wanting to be free of a painful disorder that weakens his limbs and breathing, Kurt Perry (pictured) decided last month it was time to end his life. He picked his place, his method and his death date: Feb. 26, 2009.

It was to be a carefully coordinated event—one the 26-year-old west suburbanite had long planned with the help of Rosalie Guttman and Jerry Dincin, Chicago-area volunteers with Final Exit Network, a right-to-die organization.

For three years, Perry had come to rely on these Final Exit "guides" for emotional support. He also counted on them being present, but not participating, on the Thursday he planned to "hasten his death"—a phrase the group prefers to euthanasia."

In a way, Final Exit Network is another family," Perry explained. "They listen to me and give me advice about how to go through my life … until my decision is made and I've suffered enough."

As it turns out, Perry never got that chance. Law enforcement, 700 miles away from the condo where he lives with his mother, disrupted his plans by essentially shutting down the not-for-profit Final Exit Network.

It was less than 24 hours before Perry had planned to kill himself.

On Feb. 25, two Final Exit guides arrived at the Georgia home of a man they believed was suffering from cancer and planning to kill himself. Instead, the man was an undercover agent with the Georgia Bureau of Investigation, which had been monitoring the group since June, when Final Exit "guided" another member's suicide.

Authorities on that Wednesday charged the two guides with violating Georgia's assisted-suicide and racketeering laws and with tampering with evidence. Two guides in Baltimore were charged as well. Agents froze the group's assets.

"That's the way you get rid of someone you don't like," said Dincin, 78, a retired Chicago psychologist, who became Final Exit's president when the previous president was arrested.

"It's going to kill us. There's no question about it," Dincin said. "We can't pay a phone bill. We can't pay our lawyers."

For Perry, the development means he's still alive, as he doesn't want to die without his Final Exit guides. The group has put all such work on hold because of the case. And so Perry, who walks with a cane and speaks in a wispy but determined voice, intends to use this time to defend Final Exit and his wish to end his life on his terms.

"My personal hope is that the people charged will be vindicated, set free, cleared of all charges, and the Final Exit Network can begin attending exits once again," Perry said. "I want to do everything I can to support the right-to-die movement."I'm going to wait."

In the United States, few issues inflame partisan passions as much as the so-called "right-to-die movement." Even the proper term for it—right-to-die, assisted suicide—changes, depending on if one is for or against it.

Within that movement, Final Exit never attracted much attention until the Georgia sting. From its beginnings four years ago in a hotel room near O'Hare International Airport, the group has tried to focus more on its work than public relations, said Dr. Lawrence Egbert, 81, a retired anesthesiologist and Final Exit's medical director, who was arrested in Baltimore on Feb. 25.

According to Final Exit's literature, network volunteers offer "people who are suffering from an intolerable condition" some "counseling, support, and even guidance to self-deliverance at a time and place of your choosing, but you always do the choosing."

Dincin said their volunteer guides, who number about 70, also repeatedly interview potential members—who must pay $50 to join the network—and examine medical records to determine their eligibility. The group claims about 3,000 guides and members.

"We're not interested in supporting anybody who has ingrown toenails, or people who have broken up with their boyfriend or who have lost their job," said Dincin, who became interested in the idea of "death with dignity" after being diagnosed in 2001 with prostate cancer.

If and when members decide to kill themselves, Final Exit aims to have two guides on site that day to advise and comfort the person, but not participate, said Egbert, who is accused of authorizing the group's assistance with the suicide. He is out on bail.
"We almost always hold their hand and tell them to take deep breaths and good luck," he said. "We never pin them down."

And yet, restraining the patient is exactly what Georgia officials allege the Final Exit members did with their undercover agent, holding him down.

"It's not like holding your hands as you pass away. It's holding your hands to prevent flailing," said John Bankhead, a Georgia Bureau of Investigation spokesman.

None of the four arrested, including Egbert, would speak about the case specifically, but an attorney of theirs said they deny the allegation that the guides forcibly restrained the man.

"It's wrong. It never happened," Cynthia Counts said. "They're compassionate people."

The defendants are accused of violating Georgia's 1994 assisted-suicide law—which prohibits anyone from "actively" assisting in someone else's suicide. Illinois' law is similar, prohibiting "inducement to commit suicide."

Final Exit leaders argue that they don't violate any laws because they don't pressure members to commit suicide. Also, while they recommend suicide methods—usually, the inhalation of helium—they say that they do not purchase or handle any equipment.

Dincin said he can't say for sure what happened in Georgia because he wasn't there, but he believes the two guides at the house and the two in Baltimore have always followed Final Exit's policy of not actively participating.

"It's compassionate. It's one human being with another human being as they pass from living to dying," he said.

That's why it's also important, he said, that guides help members find the right "window of opportunity": when they are suffering but still physically able to kill themselves without direct aid.Finding that window is not a science, Dincin acknowledges.

Take Perry's case: He suffers from Charcot-Marie-Tooth, or CMT, one of the most common inherited neurological disorders. It weakens muscles in the extremities, but according to the Charcot-Marie-Tooth Association, it "usually isn't life-threatening and almost never affects brain functioning."

Dr. Michael Shy, director of the CMT Clinic at Wayne State University in Michigan, said in severe cases such as Perry's, the disorder's symptoms often stabilize with time.

Guttman, 76, of Chicago, who is Perry's exit guide, recently told him that she's relieved he hasn't gone through with it yet. She smiled as Perry recounted a vacation he took a couple of weeks ago, visiting Baltimore's Medieval Times and museums in Washington.

"I see that you're still a vital person and you still have vital ideas and you can still have some moments—pleasant, pleasurable moments. In spite of everything, there are some," she said."But he, and everyone, has to consider the window of opportunity."