In a 2011 article published in the Ochsner Journal, Dr. Joseph Breault talks about his experiences during the early days of the HIV epidemic, when patients usually died of opportunistic infections. He wrote that his patients—who knew their fate because they’d seen it happen to many of their contemporaries—were quite comfortable with DNRs. Their family members were a different story. “Sometimes families thought they were being asked to render a death sentence,” Breault recalls. Breault concluded that when it comes to death, language matters. Today, he prefers the term allow natural death, or AND.
What rankles with critics of Slow Codes the most is that the practice deceives patients and their families. So what? Lantos and Meadow might argue. In their article, they wrote that deception regarding CPR is “the tip of a vast iceberg of deceptiveness that pervades ICUs. . . .In the ICU, patients and their families are rarely told about or offered every possible intervention that could be used to prolong the life of a loved one. Nor are they explicitly asked to explicitly authorize the withholding of those interventions.”
Lantos and Meadow are absolutely right. Even when a Full Code resuscitation is supposed to be done, patients and families aren’t asked how long the code should go on before pronouncing the patient dead, what drugs to use and how many times the heart should be shocked, if at all.
While doctors believe CPR is usually futile, many families insist on it nonetheless. Lantos and Meadow blame the fact that Code Blue has been made famous as a dramatic device in television and film—and a highly inaccurate one at that.
In 1996, a trio of doctors briefly turned the New England Journal of Medicine into a magazine for TV critics with a review of CPR as portrayed on shows such as ER, Chicago Hope and Rescue 911. The authors found that three-quarters of the TV patients were shocked back to life, and two-thirds apparently lived long enough to be discharged from hospital—figures far removed from any concept of reality. If my heart stops, let it stop on the set of a TV show!
Lantos and Meadow postulate that TV and movie portrayals of CPR have reinforced the value of CPR—either as a way to save life or as a symbolic expression of the commitment not to give up on the patient. Thus, the authors recommend placating families by carrying out a “short, symbolic trial of CPR.”
The word trial makes it sound like a clinical experiment. What Lantos and Meadow are talking about isn’t CPR as treatment but as theatre. If the doctor thinks it’s futile, then doing it so as not to appear to give up is—in my opinion—an act of physical cruelty on the patient.
What’s even more bizarre about this suggestion is that it has some very respected proponents. In 2013, Dr. Robert Truog, a pediatric ICU doctor at Boston Children’s Hospital, wrote a provocative article in the New England Journal of Medicine in which he defended the use of full-bore resuscitative measures on a two-year-old child with a devastatingly fatal degenerative disease. Though utterly futile, when the child’s heart stopped he received a Full Code resuscitation, complete with CPR. Truog wrote that the resuscitation made one nurse battle the urge to throw up.
What’s astonishing is that Truog wrote that he did it not for the child but for his parents, who viewed a Full Code as a valiant struggle to live against impossible odds. The intensivist wrote that when the child’s father saw bruises and puncture wounds—the detritus of multiple failed attempts to establish a central venous line—he said: “I want to thank you. I can see from this that you really tried; you didn’t just give up and let him die.”
If I were the father, I might instead have thought about calling in the police to press charges of assault and battery on a defenceless child. But clearly my mindset is different from that of the father depicted in Truog’s account.
I think we should invent a new slang term for what Lantos and Meadow proposed and what Truog actually did. Let’s call it CPR theatre after another slang term, hand-washing theatre, a recent bit of argot that refers to a doctor entering a patient’s hospital room and holding up hands glistening with the residue of alcohol rub. The purpose of hand-washing theatre is to show skeptical patients and their families that one’s hands are free of germs.
Truog argued that the needs of the parents are “clinically and ethically significant,” especially given the fact it is they who, as part of the grieving process, will bear the guilt for not having tried to save their child. That they might also feel guilt for subjecting their son to a futile attempt at resuscitation seems lost on the good doctor though obvious to me.
In an odd sort of way, the approach to CPR has become a case of medicine imitating art imitating medicine. At one point, recognizing a winning dramatic device, film and television writers and producers borrowed Code Blue from the world of medicine. They torqued the success rate of CPR for dramatic effect, and in so doing convinced the public that it was a lifesaver. That got the public to demand a mostly futile procedure, which in turn has forced medical practitioners to do it—or at least to look like they’re doing it—futile or not.
* * *
CPR theatre and the Hollywood Code symbolize the failure of doctors to communicate with patients and families. The obvious solution is better communication.
While visiting Duke University Hospital, I was told that Dr. Peter Kussin and a retired colleague were known affectionately as The Terminator and The Closer—not because they were aggressive about withdrawing life support but because they love helping families in their hour of greatest need. Both earned reputations for being able to get patients and their families to see the prognosis and the futility of aggressive, death-delaying treatments with the crystal clarity that comes with compassion and a strong command of accurate medical information.
Kussin honed his expertise in the ICU, where it’s up to the doctors and nurses to talk to the patient’s family—not about a DNR but about something a lot more touchy: stopping the things that are keeping the patient alive, such as ventilators and the intravenous drips that hold the powerful medications that maintain the patient’s blood pressure. It’s called “withdrawal of care.”
Withdrawal of care is an increasingly important topic of conversation in the ICU, where a growing number of older patients with chronic heart failure and chronic obstructive lung disease get admitted for a last gasp at survival, both literally and figuratively. Often, families fail to grasp that their loved one is at or near the end of life, preferring to see a ventilator and intravenous drips as hopeful signs. And that’s not the only factor that keeps families from grasping that the end is close.
“It’s well documented that overwhelmed, stressed families or patients in the midst of a critical illness remember little and process less,” says Kussin.
Talking is not enough; the challenge is to get patients and family members to understand the options well enough to make an informed choice. Kussin has thought a great deal about that. After all, you don’t get to be called The Closer if you don’t have a few decent pitches in your arsenal. “You have to be very careful, but humour definitely has a place,” he says. “I use the term ‘Hail Mary pass’ all the time.” Hail Mary pass is a slang term used in professional football to refer to a long forward pass thrown by a quarterback in the dying seconds of a football game—a desperation move to try to score a last-second touchdown that wins or at least ties the game.
“It’s a metaphor that anyone with any level of understanding of popular culture or living in this century or the last one will understand,” says Kussin. “It affords hope. It shows that I am doing something with some small degree of hope that it will be successful. But then, I’m also preparing the groundwork for the [likelihood] that ball is going to be intercepted or fall dead in the end zone.”
I can’t recall ever reading a single medical article or textbook that recommended using sports metaphors to obtain informed consent. I asked Kussin if such a metaphor might be taken the wrong way. “I don’t think it’s disrespectful to the severity of the illness,” says Kussin.
“I think people see me as being maybe a little more human than being an automaton decision-maker or expert.”
If it works, then Kussin is much further ahead of the game than most health professionals I know. When we don’t communicate well with patients and families, we leave them feeling alone and abandoned during the most difficult days of their lives.
Doctors and nurses feel that sense of emotional abandonment as well through a phenomenon called moral distress. Moral distress was first defined by the ethicist Dr. Andrew Jameton of the University of Nebraska Medical Center as “a phenomenon in which one knows the right action to take, but is constrained from taking it.” The concept of moral distress was first described among nurses. A 2000 study published in the journal Nursing Ethics found that one in three nurses experience moral distress, particularly around end-of-life issues. A survey of 760 nurses published in 1993 in the American Journal of Public Health found that nearly half of those surveyed said they had acted against their conscience in providing care to patients who were terminally ill.
Moral distress can lead to burnout. A 1994 study published in the Western Journal of Nursing Research found that just under half of nurses said moral distress compelled them either to leave a nursing job or to leave the profession altogether. Most telling is the impact of moral distress on patient care. Numerous studies have shown that nurses who experience this form of psychological damage spend less time with patients.
Although much of the literature on moral distress focuses on nurses, it turns out that other health professionals are vulnerable. A 2009 study published in the American Journal of Surgery documented moral distress among third-year medical students. Ryan Herriott, himself a third-year medical student, chronicled the problem of moral distress among his classmates in a blog post on healthydebate.ca. Herriott said the factors contributing to students’ moral distress included the need to be seen by residents and fellow medical students as a team player. When being a good member of the team requires that doctors give patients short shrift, we feel moral distress.
That’s what the senior medical student was struggling with when his senior resident ordered him to “get the DNR” on an elderly man with end-stage cancer. The student wanted to help the man come to grips with dying; instead, he was consumed with getting the man to sign the paperwork.
Sometimes, moral distress comes from wanting to do the right thing but not having the time to do it. Often, though, it’s not time that’s the problem but lack of training. As health professionals, physicians are expected to be caring people by nature. Astonishing though you may find it, most doctors find it difficult to respond to their patients empathically. These days, empathy is not a treasured skill in medicine. A near-perfect grade-point average and a high score on the Medical College Admission Test (MCAT) are the ingredients of a successful application.
By the time you finish med school and residency, you have absorbed the unspoken message that as a physician you are judged to be either brilliant in a clinical sense or empathetic—but not both. With a choice like that, it’s a wonder anyone would want to be seen as empathetic.
Like the senior medical student, I learned how to break bad news badly, and it ate away at me from the inside.
Then, one day, I had an epiphany from a master who taught me how to respond to patients with a dose of empathy. My teacher was my friend and sometime mentor, the late Dr. Robert Buckman. Buckman wrote many books aimed at helping people like me take better care of patients. His textbook How to Break Bad News: A Guide for Health Care Professionals is a standard text at many colleges and universities. Likewise, Buckman shared his wisdom with the lay public with books such as CANCER is a Word, Not a Sentence; What You Really Need to Know About Cancer and I Don’t Know What to Say: How to Help & Support Someone Who is Dying.
Buckman was an expert without peer at communicating with patients—a skill that came from having a good heart and from an early brush with death. In 1979, Buckman was diagnosed with dermatomyositis, an autoimmune disease that causes inflammation of the skin, muscles and other parts of the body. His experience as a patient taught him how important it was to see the world from the patient’s point of view, a lesson he put to excellent use when he recovered.
Buckman taught me that empathy is all about giving patients and family members the space and the approval to feel what they feel. He made me realize that doctors get into trouble breaking bad news because they pay too much attention to their own emotional distress to let the patient or family member talk about theirs.
The lesson has wide implications. As a profession, we spend far too much time talking around patients who are dying and not enough talking with patients who are dying.
Buckman said it’s possible to teach physicians how to respond empathically to patients just as you show them how to set a broken bone or suture a cut—one patient and one family member at a time. “The black art to breaking bad news is very simple,” Buckman told me on White Coat, Black Art. “And it’s much more simple than you thought it was.”
He said the first step to breaking bad news is not to blurt out the news but to listen to the patient or family to find out first what they already know. The second step is to deliver the bad news as sensitively as possible. The third step is to respond to every emotion the patient or loved one expresses. For example, if the doctor tells a patient that she has cancer and the patient refuses to believe it, Buckman said it’s wrong to argue with her; the correct response is to acknowledge the patient’s disbelief.
“You acknowledge the fact that it is difficult to for her to believe it,” said Buckman. “The actual words that you use don’t matter. The action of the empathic response is to acknowledge the emotion in what the other person says, and that’s what you do.”
* * *
I stood close to the short Asian woman in her mid-fifties as she shook her dead son and cried out to him to wake up.
Buckman’s words rang through my mind as I put a hand on the woman’s shoulder. “Difficult to believe he’s gone,” I said.
She ignored me completely as she continued shaking her son. “Wake up!” she yelled at him in a language I could not understand. Her voice was getting hoarse.
“It must be so hard for you to believe that your son could die like this,” I said.
Again, the mother didn’t acknowledge what I said. I wasn’t sure whether she knew I was in the room, much less speaking to her.
I must have tried a dozen different ways to acknowledge the woman’s disbelief that her son was dead. I knew that I had failed to form an empathic bond with her. It was nearly four in the morning. I was tired to the bones and I needed to sleep. The two nurses who had spent an hour trying in vain to comfort the woman and to help her to move forward looked exhausted, both physically and emotionally.
Why wasn’t I connecting with her?
Somewhere, in the midst of this horrific scene, it occurred to me that I had failed because all the while I had been responding not to the mother’s distress but to mine. The nurses and I wanted the woman to acknowledge that her son was dead and to move on. We wanted that because that’s what we needed. But that was not what she wanted.
Now, I could hear Buckman’s voice urging me to acknowledge what the mother was doing. But what was the right thing to say?
“You keep shaking your son,” I heard myself saying. The woman didn’t react to my words. She kept on shaking him. What I said sounded weird, yet it felt right. In a simple way, I was acknowledging what she was doing.
“You keep shaking your son,” I repeated, this time more confidently. “You think that if you shake him hard enough, you will wake him up. But you can’t, because he’s gone.”
With that, the woman stopped shaking her son and stopped calling out to him.
For the first time since she had seen her son’s lifeless body, the woman sat down in a chair and began to sob.
15. Slang Police
Doctors have invented hundreds—perhaps thousands—of slang terms that portray patients and their attitudes, fears, hidden agendas and even their appearance in unflattering terms. Call it the nature of medical argot, but rarely if ever do doctors invent words that compliment the people they care for.
That the slang I uncovered exists in such volume and is spoken by so many doctors and other health professionals can mean only one thing. If you’re old, demented, frail, mentally ill, overly anxious about your health, morbidly obese, addicted, in police custody or if you just call on us too often, we’re not keen on having you as a patient.
And that is a growing problem for doctors. That’s because the “undesirables” I just listed have rapidly become the typical inhabitants of hospitals. Older patients are but one example. The United States is adding 10,000 people to the ranks of seniors each and every day. Obese patients are another growing problem. A 2012 report by the Robert Wood Johnson Foundation says that by the year 2030 half of U.S. adults will be obese. Patients with substance abuse are also growing in number. In 2008, the National Institute on Drug Abuse estimated that 14 percent of all patients admitted to hospital have alcohol- or drug-abuse and addiction disorders, which accounts for nearly 20 percent of all Medicaid hospital costs.
Add them up, and in 2012, the CDC says, chronic diseases—the ones I listed, plus others—accounted for 75 percent of the $2.5 trillion spent each year on health care in the U.S.
Does that mean doctors have given up on patients? Hardly. It’s just that we’re highly selective. My colleagues still love to shock hearts back into normal rhythm, swap unhealthy lungs and livers with healthy ones, unclog blocked coronary arteries, not to mention cut, zap and drug cancers into remission. These are neat and tidy patients for whom we furnish happy endings. That we get to play the hero only adds to the glory. These are the patients we tell triumphant stories about.
The Secret Language of Doctors Page 31