1. Luton, Susan


When he fought so hard to live, it seemed heartless to ask him how he wanted to die.


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My brother's partner Sean, my sister, and I had been spending more time together than usual-keeping vigil over my heavily sedated brother, who was lying in an ICU room in Los Angeles. He'd fallen and split his head open-I'd assumed it was because his legs were weakened by the drugs he took to battle a brain tumor (Tommy Tumor, my brother called it), but the doctors said a clot had broken loose inside Ryan's leg and butterflied into his lungs, causing him to lose consciousness.

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His left arm and leg had stopped moving, probably because of the impact of the fall on the tumor. Then a superbug made its appearance, and a killer antibiotic started flowing through one of his many tubes. Even if Ryan recovered, he might spend the rest of his life in bed, connected to a ventilator.


Not a sound had left my brother since his fall. We three "vigilants"-as I'd taken to calling us-took turns at his side, talking soothingly and touching him, wanting to believe the nurse who said this might help restore him to consciousness. Every once in a while he would lightly squeeze someone's hand. When a doctor told us that it was simply a reflex, we paid no attention.


Then one night my brother jerked his breathing tube halfway out of his throat while an X-ray technician had her head turned away. Everyone assured us that Ryan's action wasn't premeditated; that his level of consciousness was only foglike; that he couldn't have seen the tech's turned head, since a nurse had recently lubricated his eyes, which hadn't been fully closed for days, and put patches on them.


When I got there the next day and saw the restraints pinning down my brother's hands, I knew that the chances he'd ever talk to us were even more minuscule. And I desperately wanted him to talk-if only for long enough to tell us what he'd decided should be the maximum number of tubes going in and out of him. Or how many times he wanted the doctors to test whether he could breathe on his own, note his agitation when he couldn't, and then up the sedative dose. Maybe he'd tell us, "You've been here all this time? Humph. I was in a tertiary universe. Quite pleasant." Or maybe he'd turn an accusing eye on us and scold, "Why haven't you picked up my signal that I'm ready to go? I even tried pulling out that oxygen-breathing snake that's been clogging my throat."


This last may be gave me pause. My brother had spent the past year making enormous physical and emotional concessions. He'd done it with an almost regal dignity. But I felt a deep doubt about the dignity of his present situation-just that morning, an additional monitoring machine, two additional tubes filled with secretions.


When I shared this doubt with my brother's physician, he said that Ryan probably wasn't ready to give up yet. Then he launched into a jargon-filled account of my brother's many complications over the past year. "But it's a philosophical question," I countered. "How willing are doctors to say, 'There's no more point to this'?" He assured me that, for them, "pointless is pointless," and that, yes, in a few days or weeks he and the other doctors might be asking us vigilants, "Do we attempt another course of treatment? Or stop treatment altogether?"


Later I turned to Sean for clues: "Did you and Ryan ever talk about if and when to bring everything to a halt?" Sean said that the only usable information, despite all their long conversations, despite the health care proxy form, was that Ryan didn't want to continue living if his mind were gone. "How can anyone cover all the bases?" Sean asked. "Besides, Ryan didn't want to talk about such things."


It was true. Almost until his fall, my brother was still insisting that he'd beat Tommy Tumor. None of us had been strong enough or-as it seemed at the time-heartless enough to play "what if?" with Ryan, to make him envision his dying.


Ryan's condition continued to deteriorate.


One night I dreamt that I was working at a crowded festival. My job was to take lunch plates to the festival-goers who had ordered them. I jostled my way through bodies for a long time, struggling to keep the food from sliding off the plates. When I finally found the right people and delivered the food, my brother appeared. "Why did you take that winding route?" he asked me. "Look over there." He pointed to the food preparation area. It was a short, direct distance from where we stood.


The next morning I told Sean and my sister that it was time to stop life support. They agreed. My brother died a few days later.