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Full Code A young physician is confounded by—then learns from—a dying patient’s decisions. by B o r i s Ve ys m a n PREFACE: Physicians frequently deal with life-and-death decisions, and increasingly with discussions about the quality of death as well. What is a “quality death”? Who defines it? How much do terminally ill patients want and need to know about what dying is like, and when is it best to broach this tough subject with patients? New York City physician Boris Veysman tackles these issues as he talks with a recently hospitalized, critically ill man. Does the patient want everything possible done to prolong his life—“full code” in hospital parlance—or does he want to let death happen without interference—a “do not resuscitate” order? The patient’s decisions provide a surprising life lesson for the young physician. Next, another young New York City physician gets a different quality-of-death lesson. David Muller recounts the efforts of a terminally ill patient to die peacefully at home, and how her carefully crafted plan for death goes terribly wrong. As both physicians discover, a quality death is an intricate, often elusive process.

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i k e m e , h e i m m i g r at e d to the United States as a teenager. My life revolved around academic pursuits and medical training; he did manual labor. For years my claim to personal freedom was a five-cup-a-day caffeine addiction; he enjoyed weed, cocaine, heroin, alcohol, tobacco, and promiscuity. At twenty-five I was too young to know the price of my bad habits, but at forty-three he knew it well. He had cirrhosis—a debilitating and deadly disease of the liver. There were signs of brain damage from circulating toxins, known as hepatic encephalopathy. This is how I, a neophyte doctor in a big city hospital, first met him. Arriving at the emergency department, he’d complained of shortness of breath and dizziness. When I took over his care a day later, he could no longer get out of bed. His jaundiced skin glowed bright yellow, the color you point out to medical students as the worst kind of tan. He floated in delirium, repeating the same questions or mumbling incoherently. And although he looked terrible, it was his vital signs and test results that made me cringe. He supported a marginal blood pressure, had lungs full of fluid, and oozed blood that had lost much of its ability to clot from his gums and where IVs had been inserted. I lost count of the organ systems that were failing and was resigned to what was coming. Those who say the future is unknown should spend a day in my scrubs. I knew his future like

Boris Veysman ([email protected]) is an emergency medicine resident at Bellevue Hospital in New York City.

H E A L T H A F F A I R S ~ Vo l u m e 2 4 , N u m b e r 5 DOI 10.1377/hlthaff.24.5.1311 ©2005 Project HOPE–The People-to-People Health Foundation, Inc.

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the back of his swollen hand, where, after a painstaking search, I found a vein for the IV catheter. The medications we give him will help some organs while accelerating the deterioration of others. He will go into shock, and I will have to give him liters of intravenous fluids. His heart will not be able to handle the load, and those same fluids will soak through his lungs, causing respiratory failure. To spare him a progression toward death that resembles drowning, I will briefly paralyze him and insert a tube down his throat, and the ventilator will take over his breathing. In this state, gagging on the tube while awake or unconscious on sedatives, he will spend a month or longer in my intensive care unit (ICU) with multiple neardeaths from infections, bleeding, and electrolyte imbalances. Eventually, in medical terms, we will no longer be able to maintain dozens of physiologic variables in a balance that is compatible with life, and his heart will go into a nonviable rhythm. As on television, he will get shocked and injected with powerful medications. But it will not be enough. The heart will stop, and we will not be sure whether he died from the disease or from our treatments for it. This sequence is almost carved in stone for patients like him by two very hopeful, powerful, and painful words: full code. Full code is permission for a doctor to insert a tube into failing lungs, shock a fibrillating heart, and unleash a plethora of punctures, dissections, and exsanguinations on the human body. These interventions save lives and restore functioning for a small number of people. For many others, they take their final hours of pain, suffering, and death and stretch them into weeks, even months of agony as organs fail one by one while the brain can still experience anger, depression, and pain. Yet to give the lucky few patients a chance to recover, all patients are granted full-code status “Full code was my duty, until their wishes can be verified though documents or conversation. In the emergency deeven if it meant a month of partment, he’d mumbled that he wanted “evhell for my patient.” erything done,” and the admitting resident documented a presumptive full code. To be emotionally invested in his future was to tear myself apart over something entirely out of my control. My emotions, however, usually have little to do with my actions. In medicine, as in the military, it is imperative to follow orders. Sometimes those orders are by physicians who are in charge, those who are more experienced or who wrote a research article that has become a standard of care. Sometimes implicit orders are given by the hospital administration, as when only certain medications are made available on the hospital formulary, and it is difficult, if not prohibited, to treat the patient with potentially more effective nonformulary drugs. Sometimes the patient gives the orders, such as when he refuses certain diagnostic studies or medications. And, occasionally, the orders represent the sanctity-of-life sentiment in the United States, mandating a heroic battle to prolong life unless justification for death is proven beyond a doubt. Full code was my duty, even if it

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meant a month of hell for my patient. All of a sudden, he changed everything. His sister ran over from his bedside, saying that he wanted to talk.

A Change In Order

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s i c a m e to h i s b e d s i d e , he looked up. “Hey, doc,” he uttered with tired clarity, “what are you doing to me?” I leaned forward, studying his jaundiced wrinkles, and in his beads of sweat I noticed a miniature of his green EKG pattern reflecting rhythmically. He stared back. “I’m happy to see you’re feeling better,” I said, smiling. “Tell me your name.” He knew his name, location, and year. That meant he was oriented, which suggested decision-making capacity. Suddenly I realized that this man should take back his fate from my hands. In my world, few things feel more like a light at the end of a very dark tunnel. If physicians are required to fight battles that are likely to be futile, they prefer that the fight be the patient’s own educated choice rather than a societal custom or a default that protects the hospital from lawsuits. Every time I discuss medicine with a seriously ill patient, I walk a fine line between being clear and insulting his or her intelligence. Despite my best efforts, a third of patients are probably insulted. Another third respond with an unambiguous blank stare. When someone is this ill, keeping things simple is key, yet there was nothing simple about this conversation. In the best of circumstances, before becoming acutely ill he should have spoken at length with his primary care physician about advance directives. Together they might have agreed on a comprehensive plan of palliative care that best fit his value system. And even if they were not able to reach specific decisions, the primary care physician would have learned what is important to him in matters of life and death. As an acute care physician with no prior relationship with my patients, I find nothing more helpful than a summary statement from the primary care provider in the file. The summary would include the patient’s medical history, allergies, current medications, names of the health care proxy, and “death care” preferences. Also invaluable would be documentation of the education the patient received about the capabilities and limitations of ICU care and its tools, including ventilators and defibrillation. No such record was available to me for this patient. He didn’t have a primary care physician. The chart revealed that he rarely kept clinic appointments and that he used the emergency department for his health care. In his current physical and mental state, I could only hope for yes-or-no answers to a few blunt questions. I spoke slowly, choosing my words carefully, hoping he could keep up. “You are very ill. Right now you are stable, but you will get worse, and you probably will have difficulty breathing. We can put a tube into your lungs to help you breathe. It may only be for a couple of days until you get better. Do you want us to do that for

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you if you really need it?” I thought it unlikely that the tube would be as helpful as I made it sound, but if this patient was going to be the one in a thousand who did recover, I wanted him to consider the best possible scenario. It took only a second for the message to sink in. His eyes widened, his yellow skin, thick and leathery and sweating, broke into deep wrinkles. He swallowed a glob of air and spat out an emphatic “No!” The hepatitis C virus in his bloodtinged spit, which probably contributed to his cirrhosis, could infect me with just a small droplet hitting my eye. Thankful that I’d remembered to wear my protective goggles, I stood quietly, waiting and watching to see if he had more to say. His sister began to cry behind my right shoulder. He took another deep breath and spoke, one word at a time. “No…tube…please… I…don’t…want…it….” Patients say “no” all the time. Sometimes I feel like I’m selling a used car and they are looking for a bargain. They seem to hope that I’ll break and concede to something less unpleasant. Yet just taking “no” for an answer is irresponsible— even if “no” is what I think is best. All too often, patients change their minds only minutes later when fully informed of the consequences of their refusal. Every “no” deserves a “then what?” and a “why not?” “You don’t need the tube right now, but later you probably will,” I told him. “Without the tube you could die. With the tube, maybe you might recover and return home. We can always take it out.” “I…don’t…care; I…don’t…want…it…EVER….” “Why?” “It’s not…the way…I want to go….” Me neither, I thought. “What will happen if you need it and we don’t give it to you?” I asked. “I…will…die…that’s…OK…please….” It might be OK with him, but the law is more “Every ‘no’ from a patient complicated. When medical orders from different people and places conflict with one another, deserves a ‘then what?’ and hierarchy becomes most important. Often the a ‘why not?’ ” patient has the final word—but he has to be of a clear mind. When one is at the brink of death, a clear mind is a rare commodity. His sister sobbed quietly at the foot of the bed as I repeatedly asked her brother about his resolve. My offer of possible defibrillation (electric shock for the heart) was also rejected. I spent another few minutes coming at the issue from every angle, fulfilling my legal obligations, but wondering whether I was setting the bar too high for this exhausted, sick man fighting for a faster death. He was alert and oriented to his surroundings; his memory was intact; he was attentive, logical, able to comprehend abstract concepts; and he was determined to die on his own terms. Yet I realized that he probably did not fully understand the details of the death

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he hastened: the sensation of drowning, the anxiety and hallucinations of the brain starving for oxygen, the fear of the unknown. That would happen however he died. All I knew was that with the full code he would die more slowly and undergo more painful procedures. My explanations were clear and thorough, but they lacked emotion or spirituality. Death is difficult to discuss and plan unless it remains an abstract concept. I finished. He remained adamant. He signed the do not resuscitate (DNR) order and the legal document designating his sister as his health care proxy. She agreed that if he wasn’t able, she would make health care decisions for him. I filed the DNR papers in the chart and notified the nurses he was now “Very ill people look DNR, news they met with relief and approval, terrible, feel even worse, even solemn applause from some. and think differently.” I walked back to his bedside. “We will do our best to take care of you, but we will also respect your wishes. And you can always change your mind.” He sank back into his pillow and closed his eyes. His sister thanked me, told me about the anguish of watching their parents die in hospitals, and said how much she appreciated how I’d approached the issues. My senior physician reevaluated the patient and confirmed the DNR. I went home with a sense of satisfaction and relief.

A Change Of Heart

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h e n e x t m o r n i n g i wa s i n f o r a s u r p r i s e . The medications I prescribed were starting to clear the poisons in his blood. This was expected, and it in no way improved his chance of survival. Nonetheless, he felt better, and I found him sitting in bed eating breakfast. At his side was a middle-aged woman who was not his sister. She introduced herself as his girlfriend and appeared angry. In tears, she told me that she’d learned about the DNR order, yet he’d denied it. I paused before responding, realizing how complicated this situation could become. The patient was chewing intently on his toast. “Good morning. How are you feeling today?” I asked cautiously. “A little better,” he responded. “Do you remember our conversation yesterday?” “I’m not sure.” I paused. The girlfriend looked at me reproachfully. I made a conscious effort to suppress any comment or facial expression. “If breathing becomes difficult for you do you want us to put a tube in your lungs to help you breathe?” He looked at me thoughtfully, then smiled. “Of course, otherwise I would die, right?” “If your heart stops, would you like us to shock it with electricity to make it work again?”

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He thought about it again. “Yeah, I want to live.” “Do you remember us talking about this yesterday?” “A little.” “Yesterday, you said clearly that you did not want to be shocked or intubated.” He paused for as long as a minute, staring at his bacon. Then his yellow eyes met mine, projecting peaceful determination. He was no longer smiling. “I remember what I said, doc. Listen to me now. Today I want to live. I want to be with my girlfriend. Help me, doctor, please.” Should I have reasoned with him about what a full code meant? Explained what it entailed and his poor chances for survival? Described in explicit detail how his impending demise would be prolonged by our inadequate efforts? Today, as a more experienced and cynical physician, I probably would. Back then, I was impressed by his resolve and simply concurred with his wishes. That day he taught me that critical care is not a job for the weak or the inflexible. Often a frail mind is harder to accept and respect than a frail body. Very ill people look terrible, feel even worse, and think differently. They need advocates, protectors, and caretakers who must be humane, patient, and professional. Supporting their ability to control their lives is no less important than maintaining their blood pressure. Emphasis on empathetic communication, not rigid legal documents, is most conducive to doing the right thing. That night the chart said full code. Tomorrow I would ask again.

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