By Sam Levin
By Sam Levin
By Sam Levin
By Jessica Lussenhop
By Sam Levin
By Timothy Lane
By Sam Levin
By Dennis Brown
It was Martin Luther King Day, and Sue Markham had gone to her law office to work for a few hours. She was interrupted about 11:15 a.m. by a call from her 9-year-old niece: "Susie, the nursing home called you," the child blurted, gulping tears. "They said Grandpa is in really, really bad shape, he took a terrible turn for the worse."
Sue comforted her niece as best she could, furious that someone had burdened a child with this news. Then she called the Veterans Affairs nursing home at Jefferson Barracks and was informed that her dad was already dead. The news came as a jolt -- he'd been immensely better the last time she'd seen him -- but it wasn't a rude shock. "I'd slept in my clothes many a night," she recalls, describing her 74-year-old dad's fight with stroke and Parkinson's disease, and how he'd continually surprised them by rebounding.
Just 13 days earlier, he'd suffered oxygenation problems so bad he'd been taken to John Cochran VA Medical Center -- where he'd improved swiftly. Sue had visited Jan. 6 and "was assured by two doctors and a respiratory therapist that he was doing great." Two days later he'd been successfully transferred back to Building 51 of Jefferson Barracks.
Now he was dead.
Sue called her brother and mother, and they drove down to Jefferson Barracks. "The nurse was crying," Sue recalls. "She said he started having problems around 9, was agitated and tugging at his throat and combative. She said she was sorry she hadn't called us right away; she'd gotten busy. Then they took us in the hospice room, and the doctor came in and said, 'I wasn't really sure what to do and then I saw the DNR.'"
"The what?" Sue grabbed the medical file and, sure enough, there was a "do not resuscitate" order, issued at John Cochran on Jan. 6, just 12 days earlier. It had been signed by a physician about two hours after Sue left her dad's bedside. Below, he'd scribbled an "addendum": "I understand that Mr. Markham's family have been reluctant to make Mr. Markham DNR in the past, but based on the patient's response to our questioning I feel that he was able to follow quite well by nodding and shaking his head and that he clearly indicated his unwillingness to be intubated should that need arise."
"He's got Parkinson's," bursts Sue. "He nods." On the day the DNR was elicited, she remembers, in three hours she could strain only one word from her dad's unintelligible mutterings. That morning's chart notations include "dementia" and "aphasia" (inability to express oneself in speech). "I think they misread his head-shaking and the stress noise," she says grimly. "They didn't know my dad."
What the family knew -- and what all the previous notations in his file reflected -- was that James Markham had chosen medical intervention at every juncture. Never had he refused care, even if it meant a feeding tube or a risky procedure. "My dad was not a person who wanted to die," Sue says simply. "We talked among ourselves last fall, thinking he would need at least three days on a respirator before we would make a decision to turn it off. If he never became alert again, we would turn it off. If he was alert and looking at us and not in pain, we would not. We figured something else would carry him off." They deliberately left his status "full code," with no advance directives. "I felt that gave us the freedom to decide," she explains, "and we'd be called.
"It's not that I think the VA caused his death," she adds hastily. "It's not that we thought he was going to get up and dance again. But I think they waited for me to leave and said, 'She's gone; now you can come do this.' I think he was an expensive patient, and -- "
Her brother, Jim, normally the quiet one, cuts in to summarize: "We think they were playing God."
A fireman, morally bound to resuscitate someone in crisis even if he or she is medically "DNR," Jim's grappling hard with what happened to their dad. "Had we decided something like that among ourselves, maybe we would have taken him home to die," he mutters. "Had they tried and it didn't work, we could live with that. The frustrating part is, they did not try."
The DNR Mandate
James Markham died alone, in panicked distress, unable to suck in enough air, and perhaps wondering why no one was helping him. It's not clear whether his heart would have stopped anyway; it's not clear whether the primary culprit was Parkinson's or pneumonia or a heart attack or something else entirely. (The Markhams were offered an autopsy on Jan. 18 but refused.)
The VA stands behind its decision not to resuscitate, but the family will never believe it's what James Markham wanted. Nor do they understand why one physician, new to the case, was allowed to decide on his own, in a few minutes' time, that Markham's nods suddenly meant something new. They don't understand why no one requested a psychiatric evaluation, or consulted with the ethics committee, or double-checked the decision. They don't understand why they weren't even notified of the change, let alone included in the discussion. They're afraid the VA's motives had more to do with cost-cutting than with compassion. And the VA hasn't volunteered any information that's changed their mind.
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