The Secret Language of Doctors

by Brian Goldman

  In 1960, William Kouwenhoven, James Jude and Guy Knickerbocker of The Johns Hopkins University School of Medicine in Baltimore published an article in the Journal of the American Medical Association titled “Closed-Chest Cardiac Massage.” It was the first to report on what would eventually become known as cardiopulmonary resuscitation, or CPR.

  The technique took off from there. The American Heart Association developed standards for health professionals on how to do CPR. By 1973, experts even recommended that the public be trained. The hope was that the widespread teaching of CPR to laypeople and the teaching of both CPR and more advanced techniques to health-care professionals could significantly reduce the 1,000 deaths from cardiac arrest that were then estimated to occur in the United States each day.

  So far, that has not been the case. Most of the time, CPR doesn’t work.

  A 1983 paper in the New England Journal of Medicine reported that only thirty of 294 patients resuscitated at a teaching hospital were alive and well six months later. In a 2001 study published in the journal Resuscitation, Dr. Kamal Khalafi and co-authors wrote, “Instituting or continuing CPR in a great majority of these patients is futile. Families should be so advised.”

  From the earliest days, doctors fretted about doing CPR when it’s futile. The American Heart Association published this warning in its standards for cardiopulmonary resuscitation and emergency cardiac care (ECC) in the Journal of the American Medical Association, in 1974:

  Cardiopulmonary resuscitation is not indicated in certain situations, such as in cases of terminal irreversible illness where death is not unexpected or where prolonged cardiac arrest dictates the futility of resuscitation efforts. Resuscitation in these circumstances may represent a positive violation of an individual’s right to die with dignity.

  They didn’t call it DNR back then. A 1976 article in the New England Journal of Medicine called it “orders not to resuscitate” (ONTR). Many hospitals use the slang term Code Blue to summon the cardiac arrest team to resuscitate a patient, so some doctors refer to an order not to resuscitate by the slang term No Code—for “no Code Blue.” Some countries use the acronym DNI to signify “do not intubate,” meaning the patient is not to receive a breathing tube or be placed on a ventilator. Other countries use the acronym NFR, for “not for resuscitation.”

  In 2005, the American Heart Association adopted the term DNAR, which stands for “do not attempt resuscitation,” to reduce the unspoken implication that successful resuscitation is likely. More recently, some hospitals have called it AND, for “allow natural death.” The term emphasizes that death is a natural consequence of a disease or injury.

  Call it DNR or No Code or whatever euphemism you happen to like. It’s a transaction between doctor and patient that is like no other in all of medicine. In almost every other aspect, you see a doctor who proposes a treatment and invites you to consent to it or refuse it. You don’t get to demand it. Worried about breast cancer because you’ve seen too many friends fall victim to the disease? Try ordering your surgeon to perform a double mastectomy. You’re more than likely to be sent to a psychiatrist than get the surgery. Try forcing a heart specialist do an angioplasty. That won’t happen either. Only the doctor decides if the treatment you want is appropriate.

  The only exception is resuscitation, including CPR. Shocking the heart, ventilating and a whole host of other measures are the only treatments in the arsenal that doctors have to perform unless you give us permission not to.

  How the heck did that happen? Blame it on the tragic story of Karen Ann Quinlan. In April 1975, Quinlan, a 21-year-old college student, became comatose after arriving home from a bar, where she had attended a friend’s birthday celebration. It’s believed the coma was caused by a combination of alcohol, the sedative diazepam and the painkiller dextropropoxyphene. Quinlan was admitted to Newton Memorial Hospital in New Jersey, where she was placed on a ventilator. Eventually, her doctors diagnosed her as being in a persistent vegetative state.

  What makes Quinlan’s case a seminal one is that her parents asked the hospital to take their daughter off the ventilator and allow her to die. The hospital turned down the parents’ request, setting the stage for a battle in the courts that attracted attention worldwide. In the end, the New Jersey Supreme Court sided with the parents. In 1976, Quinlan was taken off the ventilator. She lived for another nine years off life support, until she succumbed to pneumonia in 1985.

  The 1976 New England Journal of Medicine article cited the Quinlan case as a precedent that the wishes of patients and family members must be paramount. From that point on, full resuscitation became the default option in the absence of clear directives to the contrary.

  Until that point, resuscitation was largely the prerogative of physicians and hospitals. The Quinlan case turned it into a mutual decision. Paradoxically, it was Quinlan’s parents who wanted to turn off the ventilator that was keeping their daughter alive against the objections of her doctors. Today, family members are commonly insisting on CPR as doctors fight against it.

  There are several reasons doctors would rather chew glass than do CPR on most patients. For the vast majority of hospitalized patients, resuscitation is futile. Your loved one is admitted to hospital with metastatic lung cancer. Death is inevitable and probably imminent. But if your loved one’s heart stops, and you haven’t signed a DNR, I have no choice but to do CPR and put him or her on a ventilator.

  That’s the obvious reason. The less obvious ones are buried within the culture of medicine. Doctors hate being ordered to render any treatment; if the patient or family are giving the orders, so much the worse.

  Most doctors I know would love to be able to decide on their own whether you or a loved one should get resuscitated. In the current system, that’s not possible. So we go for the next best thing: getting the DNR—that is, subtly persuading patients and families to not demand resuscitation efforts.

  Today, hospitals have a DNR form that patients or their substitute decision-makers are asked to sign. From a distance, a DNR discussion looks like a negotiation. In reality, it’s a dance in which we doctors hope to lead patients and their families to see the futility and agree with the doctors.

  “Several of us have referred to it as ‘closing the deal,’” says Peter Kussin. “If patients heard us or their families heard us describe it that way, they would not like it. I would not blame them for not liking it. It reflects that the level of communication that occurs in ICUs and in people with advanced illness is usually pressured by time. Physicians are uncomfortable with it.”

  And who do we dispatch to get the DNR? In a teaching hospital, we send in rookies. As is the case with pronouncing the patient deceased, it’s often the most junior member of the medical team who has the task of getting the DNR from a patient newly diagnosed with a life-threatening condition (or the next of kin). Often, the discussion takes place in a cubicle or a hallway in the ER.

  A senior medical student remembers doing an admission history and a physical on an 81-year-old man who had come to hospital complaining of loss of appetite and a weight loss of twenty pounds. A chest X-ray showed the man had a large collection of fluid inside his chest cavity between the inside of the chest wall and a lung. Given the man’s loss of appetite and weight, the most likely and most ominous cause was cancer.

  In the Bunker, the student’s senior resident gave him his marching orders. “This was a medically futile situation,” the student recalls. “The resident just kind of handed me these two sheets and said, ‘Go get the DNR,’ like a rite of passage.”

  At some hospitals, a DNR form is a single sheet that asks whether the patient wants CPR or to be put on a ventilator should the need arise. More and more, hospitals like the one where the student was on duty that night have a multi-page DNR form with so many options it reminds me of beverage choices at Starbucks.

  The student went to visit the man, who was alone. The senior
resident had told him to get a DNR, but there was an important detail the student had to take care of first. He had to tell the man it was highly likely that he had cancer and that he probably did not have long to live.

  “You can imagine that this person had just been broken the news that he has cancer,” says the student. “Then you’re asking him what he wants to do if his heart stops. I don’t think people are in the right mindset by any means to make that decision at that time.”

  Did the man want a breathing tube? Check. An IV? Check. Blood work? Check. Antibiotics in case of an infection? Check, check and check. The more options the student discussed, the more bewildered the patient became.

  “We kind of fumbled through it,” says the student, cringing at the memory. “I was left with the feeling that this was inappropriate to do under these circumstances. This was not offering him an option of dignified care.”

  In fairness, the doctor-to-be had to conduct a conversation of that import while answering pages and rushing off to do other referrals. Still, conscience or not, he had a job to do.

  “The resident really had this expectation that I was going to come back with the DNR because it was outrageous for this person with metastatic cancer to receive resuscitative measures,” says the student.

  In the end, he says he got the DNR, and a high five from the senior resident when he returned to the Bunker with the signed form—and with a lot of personal misgivings. “I really hate the menu option of ‘How do you want to die?’” he says.

  These days, getting the DNR is more about filling out paperwork than having a heartfelt conversation like the one the student wished he had had with his patient.

  Few have thought more about what that particular student as well as multitudes of students and residents have struggled with than Dr. Peter Kussin. “I’ve certainly said it myself: ‘Did you get the DNR order?’ or something like that,” says Kussin. “It jangles a little bit because it’s a little stark reminder of how we’ve de-emotionalized or depersonalized the situation.”

  In hospital corridors, there are lots of misgivings about the way we deal with DNRs.

  In a trenchant commentary published in 2011 in the Journal of General Internal Medicine, Dr. Jacqueline Yuen and colleagues wrote that DNR discussions occur too infrequently and often are delayed until it is too late for patients to participate in the decision- making. They also made the troubling observation that the more a hospital serves up high-tech, cutting-edge treatments, the less inclined it is to sit down with patients and discuss their end-of-life wishes. More disturbing is the authors’ observation that for-profit hospitals that serve up the most costly treatments also have lower rates of DNR.

  To me, this sounds like a cash cow being milked to death.

  The authors blamed doctors and hospital policies—even the Joint Commission, the organization that accredits more than 20,000 health-care organization and programs in the United States—for not informing patients and families of the options for resuscitation available to them. They also called out medical schools and residency programs for not requiring that students and doctors-in-training receive formal training on how to talk to families about DNR.

  I know all about that. Ten years ago, I treated a man with severe Parkinson’s disease. He could no longer speak for himself, but he had a devoted sister who spoke eloquently on his behalf. He was close to the end of his life, and the sister wanted him to be admitted to hospital and treated with dignity. Instead of seeing the loving sibling that she was, I saw her as just another demanding relative who was asking for more from me than I had time to deliver.

  I acceded to her request and referred her brother to be admitted to the internal medicine team. But I was cold and insensitive to her. After the patient died some time later, the sister met with me and took me to task for my attitude. We came to an understanding, but the memory still stings because I failed to support her emotionally.

  Yuen and her co-authors called for better guidelines on DNR from the Joint Commission and better training for students, residents and attending physicians. They also liked an idea that was part of original health reform legislation proposed by President Barack Obama during his first term in office—to pay doctors a bonus for handling DNR discussions well. Unfortunately, the notion of providing payment to doctors for conversations with patients and families about end-of-life care led critics of the health-care reform bill to accuse the government of hatching a scheme to limit health care to seniors by setting up what critics referred to as “death panels.”

  I think end-of-life discussions should happen at a time when patients can ponder their wishes without feeling pressure to sign a form. Advance directives, sometimes called advance health-care directives or living wills, are written instructions about what people want done regarding their health if illness or incapacity make them unable to decide for themselves.

  So far, few patients want them. A 2012 study found fewer than one in five elderly patients who visited the ER had advance directives.

  All of which means DNR discussions in hospitals under highly stressful circumstances will be the norm for some time to come. Just starting his career, Dr. Nathan Stall is already disillusioned that end-of-life conversations have been reduced to getting the DNR. “I actually hate it now and this is someone who believes that this is such an important thing to do,” says the aspiring geriatrician. “I think the pendulum has swung so far to the other side that it’s just the most awkward conversation.”

  * * *

  Doctors have long had a sneaky way of avoiding altogether those awkward conversations about DNR: Let the family think the doctors are doing a full cardiac arrest procedure when they have no intention of doing so.

  The slang term is Slow Code. It means pretending to try and pull the patient back from the brink. In a real Code Blue, you drop everything and run to the patient’s bedside. In a Slow Code, you walk, stroll or saunter. You’re slow to arrive on the scene, slow to check for signs of unresponsiveness, slow to check for a pulse and slow to do every intervention, from CPR to defibrillation. It’s a play for time until it’s acceptable to pronounce the patient dead.

  Slow Code is also known by the slang terms Show Code, Hollywood Code and Light Blue. I’ve also heard it referred to as Blue Light, named after a popular beer brewed by the Labatt Brewing Company Ltd. Blue Light is a nice pun; like the beer, a Slow Code is a pale, low-calorie version of the real thing.

  The first person to introduce me to Slow Code was a senior resident in internal medicine. One day, he announced to us that if and when a certain patient’s heart stopped, the code would be a slow one. The day the man arrested, the cardiac arrest team arrived to find the senior resident by the bedside, taking the man’s pulse in a very leisurely way. I remember that he announced to the residents who had arrived breathlessly that they could pack up and leave. They didn’t object.

  On that occasion, the senior resident called it a Slow Code out loud. However, in my experience, most clinicians who use the tactic don’t name it; they just do it. It’s very easy to telegraph that a Slow Code is in play by rolling one’s eyes or by speaking the patois of cardiac resuscitation in a tone of voice that conveys an ironic meaning.

  There are almost no statistics on the frequency of Slow Codes. However, in a 2012 article published in the journal Virtual Mentor, Dr. Edwin Forman, a pediatric hematologist and oncologist, and Rosalind Ladd, a visiting scholar in philosophy at Brown University in Providence, Rhode Island, wrote that “many medical students, residents, and other medical staff learn the elements of a slow code early in their clinical years.”

  The thing about a Slow Code is that it can’t happen without the tacit agreement of every professional involved. The objections of even one of the doctors or nurses involved would raise the serious spectre of a complaint to hospital authorities, regulators, perhaps even the police. The absence of frequent whistleblowers tells me that a lot of
people on the front lines think a Slow Code is the right thing to do—even if thought leaders disagree.

  In 1992, Jessica Muller, a professor of medicine at the University of California at San Francisco, wrote an article in Social Science & Medicine in which she referred to Slow Codes as “deplorable, dishonest and inconsistent with established medical principles.”

  The sixth edition of the American College of Physicians Ethics Manual, published in 2012, says this: “Because they are deceptive, half-hearted resuscitation efforts (‘slow codes’) should not be performed.” The fifth edition of the authoritative textbook Clinical Ethics calls Slow Codes “dishonest, crass dissimulation, and unethical.” In a 2010 article in the journal Pediatrics, Eric Kodish of the department of bioethics at the Cleveland Clinic condemned the practice of Slow Codes by saying that “charades are not acceptable when it comes to life-and-death matters.”

  Not everyone agrees. In a 2011 article published in the American Journal of Bioethics, Dr. John Lantos, a pediatrician and bioethicist, and Dr. William Meadow, a neonatologist and bioethicist, wrote that the “misunderstood and unfairly denigrated” Slow Code “may be appropriate and ethically defensible in certain clinical situations.”

  For instance, suppose family members understand that death is imminent and inevitable, but just can’t sign a DNR form because to them it feels like playing God? In that scenario, Lantos and Meadow recommend that doctors not seek the family’s explicit consent for a DNR. Instead, they recommend leaving the conversation deliberately vague and ambiguous so as to relieve the family of the burden of making a difficult decision and leave the doctors the option to act as if a DNR had been signed.