The Grim Reaper seems to be making itself more comfortable than usual around here, what with the current pandemic slicing its lethal path through the populace and the recent passing, in quick succession, of my brother and a former colleague — one four years older, the other four years younger than me. It’s times like these that can make a geezer ponder his own mortality with a bit more urgency than usual. Maybe it’s time to draw up a last will and testament, for instance, or even craft an advanced directive to ensure that I won’t spend my final days as a comatose husk bound to a tangle of wires and tubes in a futile attempt to extend my expiration date.
The will I’ve been putting off for several years out of pure laziness and a desire to avoid its morbid connotations. The advanced directive is another matter altogether. I’m notoriously skeptical of conventional medicine, so you’d think I’d make it a priority to record my treatment (or lack thereof) demands. But, like the will, it requires a willingness to discuss openly my inevitable demise, an exercise that tends to dampen one’s spirits.
There’s another obstacle to consider, as well: Why go to the trouble of stating my end-of-life wishes if there’s a decent chance the doctors will ignore them? I could end up like Gerald Greenberg.
Diagnosed with early-onset Alzheimer’s in 2010, Greenberg and his wife, Elaine, drafted an advanced directive that spelled out specific treatment protocols should he become terminally ill, comatose, or irretrievably brain damaged. They wanted no resuscitation, no ventilators, no tube feeding, no antibiotics. “We gave it a lot of thought,” Elaine Greenberg tells reporter Paula Span in the New York Times.
Six years later, though, as her unresponsive husband lay near death in Montefiore New Rochelle Hospital, Elaine could not prevent doctors from ignoring their carefully crafted demands. For almost a month, they continued unnecessary tests, courses of antibiotics, and other heroic measures designed to keep him alive at all costs. The experience left Elaine bewildered and bitter. “They made the end of his life horrible and painful and humiliating,” she recalls. “What’s the sense of having a living will if it’s not honored.”
There are plenty of reasons why physicians might question these documents, Span notes. Some directives are too vague, others may be so dated that the patient’s designated representative has died. And doctors, arguing that they’re simply doing their job by keeping someone alive, seldom face any consequences for disregarding a patient’s wishes.
Historically, survivors like Elaine Greenberg have found themselves powerless to hold doctors and their employers accountable for their actions in these cases, but that has begun to change. The first “wrongful life” verdict was handed down by a Montana jury in 2019 after the estate of Rodney Knoepfle sued a Helena hospital for disregarding his do-not-resuscitate order as well as a state-mandated POLST (portable orders for life-sustaining treatment) document. Knoepfle was resuscitated twice and lived for two years in excruciating pain while connected to an oxygen tank.
It was a brutal departure, recalls Ben Snipes, one of Knoepfle’s lawyers. “The last few months, he was almost incoherent with pain, living in a hospital bed, getting morphine crushed into his pudding,”
The Knoepfle case sparked a number of other wrongful-life lawsuits, Span reports, including $1 million settlements involving hospitals in Georgia and California. Another Georgia case is currently pending as are suits in Maryland and New Jersey. Lawyers for Elaine Greenberg have filed two malpractice suits against Montefiore Hospital in New York.
Greenberg’s case, like most of the others, will likely meander through the courts for months, maybe years, before a verdict is issued. The lengthy process will not dissuade her, she tells Span. She and her two sons will persevere. “He tried to make choices, and his choices weren’t respected,” she says. “I don’t want anyone else to go through what we went through.”
The last time I saw my brother, he was sipping a Miller Lite while lying comfortably in his living room watching our Golden Gophers football team trounce Nebraska. The pain meds were working, for the most part, but we all knew he was fading pretty fast.
I have no idea whether he and his wife had drafted an advanced directive — or even a will, for the matter. That’s none of my business. All I knew then was that the chemo didn’t work, doctors had never been able to determine the source of the cancer that was killing him, and he didn’t want to continue the brutal, futile treatment. “He gets to choose,” is all his wife would say.
He eyed me as I pulled on my jacket, and we exchanged a fist bump as I headed for the door. Driving back home, it gradually occurred to me that, despite everything, maybe he was one of the lucky ones.
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