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.
Like most of us, the Markhams thought of resuscitation as a set of standard lifesaving procedures. In the past, perhaps, jolting the heart back to life or threading a breathing tube into a constricted windpipe was perceived as "heroic." But in today's high-tech medicine, it's as taken-for-granted as antibiotics.
There's a move to reconsider that, because resuscitation doesn't always produce the desired result. Today, patients are carefully schooled -- or they ought to be -- in the odds and possible consequences, and there's a growing push to discuss DNR status with patients while they're still able.
But that doesn't mean you should discuss it -- briefly, after the family has left -- with someone who's already demented and aphasic. Even if James Markham did have a lucid moment and suddenly summoned the legally required capacity to understand the abstract hypothetical consequences of intubation, it's doubtful whether he could have made himself clear if he changed his mind subsequently. And because his family wasn't even aware that he was DNR, they weren't keeping vigil to make sure he didn't die alone.
Legally, the VA had no obligation to inform the Markhams of the DNR; James was an adult, and, strictly speaking, his decision was confidential. Sue hadn't had him declared legally incompetent, but she and her mom were the surrogate decision-makers on record. Until Jan. 6, the VA had called them about everything from a podiatrist appointment to someone else's surgery (they'd gotten the records mixed up).
"It's become customary to involve the loved ones who are making the decisions about someone's care," notes Dr. Jason Karlawish, a physician on the faculty of the famous Center for Bioethics at the University of Pennsylvania-Philadelphia." The task of any physician is to find out who is the patient's moral community, who is his family, and would he want to talk about this with them."
Of course, that's presuming the patient is capable of conversation. "The diagnosis of dementia raises reasonable clinical suspicion that you need to assess the patient's decision-making capacity," says Karlawish. "There is a set of standards: You assess cognition and emotional state; the ability to communicate; the ability to appreciate the decision, rationally manipulate the information and understand the decision."
Dementia does not automatically render someone incompetent; it's a fluid, transient state, and only someone present at a given moment can know whether the patient had "capacity" at that moment. But to know that, you have to know they can understand the consequences of their decisions -- and that's not always easy to ascertain. One physician recalls a mentally ill patient who seemed fully cognizant of the concept of DNR, the flowchart of possible consequences. The patient was ready to sign the DNR order. And then somebody asked the patient what "dead" meant. Turned out he'd woven himself quite a pleasant alternative to the dictionary definition.
M.C. Sullivan, a nurse, ethicist and attorney who's vice president of the Midwest Bioethics Center in Kansas City, describes the center's three-year project to improve end-of-life care. A big chunk is devoted to educating institutions about DNR decisions, "so people will learn that you can't just write 'DNR'; you have to tell the story. What is the evidence of capacity, how was the decision arrived at, what were the circumstances, how was it communicated?"
The documentation for James Markham is keeping his family awake nights.
When he entered John Cochran for the last time, on Jan. 5, the nurse scratched out "oriented x 3" -- oriented to time, place and person -- on the assessment form. Under "deficits/concerns in behavior/mental status," "yes" is circled. "Social information" was marked "unobtainable." He was admitted "yelling unintelligibly"; hours later, he was noted as having "expressive aphasia. Unresponsive to questions."
Then, at 3 p.m., this notation: "I discussed in length the possibility of intubation in the future, should his condition deteriorate, and he expressed that he would not want to be kept alive on a breathing machine. (The three-dot sign for "therefore") he is DNR -- no CPR, no intubation by patient's request." It was signed by Dr. David Erasmus, newly assigned to Markham's case from the VA's constantly rotating cast of resident physicians. (Sue says that whenever family members asked who James Markham's doctor was, the nurses would reply, "It varies," or, "Well, what day is it?")
The nursing note for the next day, Jan. 7, describes James Markham as "confused"; for Jan. 8, "not fully oriented, speech impaired"; the same for Jan. 9, with the addition of "anxious"; the same for Jan. 10. James Markham's records reflect no psychiatric consultation, no referral to the ethics committee, no instruction to verify the decision on a clearer day.
There hadn't been many clear days. Sue says she "hadn't been able to do more than pick out words since December." Her dad's chart is riddled with such phrases as "confused," "not fully oriented," "speech impaired." On the form "Religious Spiritual Life: To Be Completed by Patient," it's noted that he was unable to answer the questions. Even before he entered the VA nursing home in 1997, he was taking Risperdal, an anti-psychotic medication, for hallucinations. "He would say, 'The Salvation Army's in the closet,'" recalls Sue, "or "Did you say hello to your brother? He's right here at the foot of the bed' -- and then wiggle his foot as though that was my brother."
The hallucinations continued at the VA: "He'd talk about John, who stood outside his room with a megaphone and told him things. The nurses would say, 'Oh, John was here again!'" Sue's grin fades and her voice turns urgent. "You'd have to know him to know what time frame he was in, because it would shift. If you don't know these things, you don't know if my dad is hallucinating or not."
Quality of Whose Life?
Many of us would have looked at James Markham's feeding tube and cramped limbs and bluntly decided that he was better off dead. He wasn't listening to Benny Goodman anymore, or playing tricks on co-workers with plastic mice, or putting on Chipmunks albums to get a rise out of the family dogs.
But "quality of life" isn't a knee-jerk question. Karlawish just finished an article on end-of-life decisions for noncompetent patients, and he had to fight with the editors, because they wanted him to talk about "medical futility" as a criterion for making someone DNR. "It's a bludgeoning term that ends all discussion," he remarks. "Some people don't consider anything futile until someone's bled all their blood out. Others say if the same procedure has not succeeded in 100 patients, it's futile. It's an interesting thought experiment -- but these are quantitative expressions applied to qualitative judgments. I generally find 'futility' to be a not-very-helpful term. The issue is around quality of life, and the challenge is coming to a consensus with the patient and the family about what constitutes quality of life."
At the Alzheimer's center where Karlawish works, they've asked families how they assess quality of life, and they've "gotten some interesting answers," he adds. "One issue is whether anyone other than the patient should have any say in what someone's quality of life is."
When Sue Markham considered her dad's quality of life, she remembered the nurses' notes about how he smiled when they wheeled him into the dayroom; how it was really important to watch Lawrence Welk on Saturday night; how one evening last fall, she returned to the hospital a second time and he informed her, "I'm going home with you." She remembered the night she was convinced he was dying, and by the next morning he was sitting up in bed watching baseball. And she remembered how, in October, he had aspiration pneumonia and had to go on a ventilator. "A doctor came in, walked right up and said, 'If this was my relative, I would just turn the machine off and let him die.' Dad sucked in air and the machine went goofy." Weaning from the ventilator went well, adds Sue, but from then on, she says, "he started telling anyone who would listen that someone had tried to kill him."
Since the '80s, the trend has favored DNR status for anyone whose chance of regaining health is dim. "The (Karen Ann) Quinlan case was physicians saying we can't turn off the ventilator," observes Karlawish, "and the cases now tend to be physicians wanting to turn it off." What changed? Physicians felt a more urgent need to relieve suffering; they came to terms with technology's limits; and ... budgets tightened. "By the mid-'80s, there was the perception that resources are being expended on patients who are chronically ill," notes Karlawish, "and we can't have them sucking up all our finite resources while we wait for a miracle. Under environments of heavy managed-care penetration (such as the VA), physicians tend to have attitudes that are much more rationing."
What's scariest is the subjectivity of the issue. In 1994, the British Medical Journal reported a study in which 29 percent of senior doctors would not resuscitate healthy patients over 70, apparently solely on the basis of age. Yet one-third said they'd resuscitate someone with incurable cancer. The Dec. 6, 1997, International Journal of Geriatric Psychiatry reported a study of DNR cases, which found that "evidence of consultation for these decisions was lacking and the recording erratic." Communicating fully with patients and families about these decisions is a touchy proposition -- and therefore often avoided. And in Karlawish's opinion, "No amount of fancy medical practice and new technology can make up for bad communication."
The VA's Response
The Markhams remain grateful for the care their dad received at Jefferson Barracks: "Anytime I got there, a nurse was fussing with him," recalls Sue. "He was only 5-foot-3, with no tattoos or anything, and they would tell me how adorable he was. They'd get him up in chairs, put him by the nurses' station, talk about how he doesn't make any trouble. He was always impeccably clean, shaven, his hair combed." She takes a deep breath. "That's why I was stunned by the DNR. They called us about haircuts."
Sue and Jim met with hospital administrators on Jan. 22. They wanted to know just how their dad's status had changed and why they hadn't been told. According to them, hospital director Linda Kurz just said, "He made the decision" -- and when Jim asked the name of the doctor, Kurz refused to disclose it. "I just wanted to talk to him," Jim exclaims. "I thought, 'I can look in his eyes and tell if he's lying.'"
When The Riverfront Times asked Erasmus whether he wanted to comment about the DNR he'd authorized on Jan. 6, he replied, with almost cordial brusqueness, "No, I don't think so, I'm not particularly interested in that case at this time."
So we asked John Patrick, spokesman for the VA, whether anybody was interested. In other words, was the Markham case being investigated? "It was investigated," he replied. "Medical Center management (Kurz) and the chief of staff sat down with them and provided the medical record. The only (other) investigation that would be done is if they did litigate."
We asked whether extra precautions are taken when a DNR is being authorized for someone who suffers dementia or is unable to communicate clearly enough to change their mind. "That's not an issue," Patrick said. "If he says he doesn't want it, they are going to do anything they can to honor that."
We asked why the family hadn't been notified of the shift in their dad's status. "That may be something else we don't talk about," he replied, hinting that some families don't visit very often, that the records would prove revealing.
"I saw my dad every day, or several times a day, if he was having a problem," Sue had already explained. "If everything was normal, I saw him every 10 days." Her mom, Mary Markham, couldn't drive the highway, so she went whenever she could get a ride. "My daughter was so conscientious about watching his medical records," she sighs. "I didn't get as involved, because I didn't understand them."
Caregivers are influenced by their own notions of familial support, notes Karlawish. "It's tough to be a family when you have a relative in the care of others. Is a four-hour visit every 10 days as good as four one-hour visits once a week? There is no right answer."
Besides, blaming the family is, according to VA insiders, a common strategy. Last October, James Markham was fed a piece of meat that lodged in his throat, partially obstructing the airway. His chart shows undiagnosed pain and respiratory distress for almost a week. An Oct. 18 note reads, "Daughter here to see father. Concerned about patient's condition." Finally, on Oct. 24, he was taken to the hospital, where doctors removed an "irregular shaped portion of rubbery gray-tan material consistent with a partly chewed meat food bolus ... very degenerate, with an infiltrate of numerous neutrophil leukocytes and abundant coccoid bacterial colony growth. These features indicate the presence of the meat at this site for some duration."
The discharge diagnosis reads, "There was some question as to how the patient aspirated," then concludes that he "could have been fed in the mouth by some family member." After they'd struggled for a year to find a liquid diet that would work? "We had to thicken everything to pudding consistency," explains Sue, "and he thought it was disgusting."
Patrick said the VA wouldn't comment on this case because the family might sue. So we asked whether someone could simply explain the hospital's general ethical policies about DNR? No. Do they have ethical guidelines? "Yes, we do," he said. "Submit a FOIA (Freedom of Information Act request, an elaborate bureaucratic procedure that can take months), and I'll give them to you."
We found a shorter route: a VA Medical Center memorandum, review date June 23, 1998, outlining "Guidelines for Do Not Resuscitate (DNR) Procedures." "In those situations where there is doubt or disagreement concerning the propriety of a DNR order or the patient's prognosis, the Clinical Ethics Advisory Committee may be consulted to help resolve the issue," the guidelines state. "When the patient is competent and alert, and understands the implications of his diagnosis and prognosis, the DNR decision should be reached by the patient after discussion with the staff physician primarily responsible for the patient's care. The patient should be encouraged to discuss the subject with family members before making the decision."
If a patient is incompetent, the decision should be made by a surrogate decision-maker (SDM), the guidelines continue. "Should the patient's SDM disagree with the DNR order, no such order will be written." Furthermore, "the attending physician must rescind the DNR order if the patient's prognosis significantly improves, if the competent patient requests the same, or if the patient is incompetent, the patient's SDM requests the same. The order should be reviewed periodically."
The Markhams are considering a lawsuit, not only for themselves but as a safeguard for the many VA families without enough education or money to fight effectively. "I dress funny, in leggings and sweatshirts, when I'm not at work," remarks Sue. "I don't think anybody at the VA had any idea that we had the ability to do anything about anything that happened.