Living the good death

The terminally ill take control of their final exit

Wagner shared a running gag about confession with one client -- a joke that went over poorly when the man was only hours away from death in a hospital room filled with weeping relatives. "Frankly, I forgot I had my clerical collar on," Wagner says. "I went into the room, zipped right over to the bed, and asked as usual if he had anything to confess. As usual, he said no. I said, just as I noticed the distraught faces around me, 'Well, you're just going to burn then ... oops, sorry, folks.' My friend cracked up, because our black gallows humor was very uplifting and liberating to both of us. But it was shocking to the bystanders. Too bad."

Paradigm meets in Wagner's living room, where a log fire wards off the foggy chill of a Haight-Ashbury afternoon. "Many people find great serenity in a terminal prognosis," Wagner says. "It gives some people permission to do things they've never dared. Any ending can be a sad thing, but if the wisdom gained in the process dies, too, then it's a tragedy."

Garland Grizell is eager to pass along what he's learned from Paradigm. "I've been going to groups since Noah got off the boat," says Grizell, who long has known that his progressive disease will be fatal. "In other programs about dying it was like reading the script or auditioning for the part. Paradigm is like opening night. Now I am living my death."

Grizell describes a recent meeting as disturbing, in a useful way. He attended in severe pain -- he'd misplaced his medication -- and heard Dale Borglum of the Living/Dying Project talk about directing compassion toward one's own infirmities. "I tried it right there as he was speaking," Grizell says. "It was the only tool available, and it enabled me to deal with the pain and remain with the group."

Borglum's talk on spirituality is strong on the practical approach taken by his associates, Ram Dass and poet Stephen Levine, the author of Who Dies? "We're conditioned when suffering arises to push it away," Borglum says. "But there's a healing message contained in what our bodies go through. If we can get to that, we can avoid judging ourselves or being ashamed of our approaching death."

There's little discussion at Paradigm of the reigning monarch of mortality, Elisabeth KYbler-Ross, author of On Death and Dying. "She's gone all metaphysical," complains Wagner. "She's more interested in after-death experiences than in dying itself. But the terminally ill need to deal in the physical, the here and now. A lot of people are very disappointed in her."

Veteran hospice nurse Jon Byrnes takes Paradigm participants on an armchair guided tour of the physical, mental and emotional changes likely to occur during the day or so before death. Morphine can calm the anxiety associated with shallow, gasping breathing; other drugs are available to offset the toxins produced when the kidneys start shutting down. Byrnes' "Final Stages" talk encourages the dying to muster support from loved ones well in advance of the end. One man informed friends of his condition, his wishes and his serene frame of mind well in advance -- no one was unduly alarmed when mild dementia led him to speak of sailboats arriving to carry him onward as death approached.

"Your caregivers' anxieties can be very upsetting to you as you die," Byrnes says. "With a little forethought you can talk people through it while you're still lucid and avoid last-minute panic."

Many of the terminally ill retain a strong interest in sexuality until very near the end. Syndicated sex columnist Isadora Alman visited to tell the Paradigm group about a friend who was dying of AIDS. When she asked what she could do, the man requested two favors -- that she pay to have his front tooth capped, and that she go out and buy him a sex aid she describes as "a dildo the size of a floor lamp." Alman laughs at the memory. "When all else is slipping away, vanity and lust will remain," she says. "It's not so much that death is an aphrodisiac as that it makes us realize life is brief and we have little left to lose."

Wagner believes in directly confronting all the mysteries surrounding death. It's one reason he invited the Hemlock Society's Sally Shute to be the first speaker at Paradigm's inaugural program. She arrived, armed with copies of Derek Humphry's Final Exit and prepared to discuss the distinction between the panic-driven act called suicide and the rational decision to die known as "self-deliverance."

But instead of delivering her usual spiel, Shute found herself counseling a room full of people grieving over the death a few days earlier of one of their group. Terminal cancer patient Rita Zweig, 71, had made a vivid impression as a strong, funny woman when she'd attended a single Paradigm workshop before collecting her morphine prescription and putting an end to her life.

"Most were supportive of Rita's decision," Shute recalls. "They understood her fear that the cancer was spreading from her lungs to her mind and that if she waited much longer she might be unable to act." Shute has found that many, like Zweig, realize they have no power over their terminal disease but can achieve a feeling of autonomy by controlling the manner and the timing of their deaths.

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