The Boston Globe | March 8, 2012
By Kiran Gupta
As a first-year resident, it was always the most uncomfortable part of my initial interaction with patients as I admitted them to the hospital, the last checkbox on my list of “to dos” but arguably one of the most important. Physicians refer to it as “code status.”
A kind of medical shorthand, those two words are used to encapsulate a patient’s values, beliefs, and wishes regarding clinical decision-making if they should face life-threatening health circumstances.
To put it simply, code status reflects whether a patient, when confronted with dire illness, would want aggressive resuscitation with a breathing tube and cardiopulmonary resuscitation (CPR) or prefer more conservative measures focused on easing suffering and providing comfort. In most cases, patients arrive at the hospital expecting to receive treatment, get better, and head home. The alternative usually seems out of the question. Perhaps naturally then, it is shocking when a perfect stranger (albeit a well-meaning physician) begins asking deeply personal questions about decisions concerning the end of life that they may have never contemplated or discussed. Death is unavoidable but very few patients are prepared to discuss that possibility with a physician they have just met.
Late one night, my intern and I were covering the night shift. We were the responding clinicians for most of the patients on the general medical service and also responsible for admitting from the emergency department. My intern’s pager suddenly went off: “Ms. M is in respiratory distress.” We rushed to her room.
Ms. M, an elderly woman with multiple medical problems, had been admitted a few nights earlier. She suffered from both heart and lung disease, either of which could have caused her shortness of breath. Before we stepped into the room, I pulled my intern aside and noted that Ms. M’s code status was “Do Not Resuscitate/Do Not Intubate” (DNR/DNI). We needed to be aware of her code status to determine the types of interventions we could offer while respecting her wishes.
Ms. M was clearly struggling to breathe. She could barely talk, so we increased the flow of oxygen through her face mask . We started medications to take fluid out of her lungs and bring down her blood pressure, yet she continued to look uncomfortable. Her hair was damp, her body so soaked with sweat that the EKG leads would not stick. What was causing this? Was it her heart? Her lungs? Anxiety?
Her lips were pursed as she gasped for air. We gave her a small dose of morphine to help her breathe, but it made little difference. Our options were limited given her code status; she needed to know that.
Though in distress, she was completely lucid. Gently, I explained that we were deeply concerned about her breathing and that we had one more intervention that could potentially help –the BIPAP mask, which helps relieve the work of breathing. But, it exerts positive pressure on the lungs to keep the airways open and is sometimes uncomfortable. If this didn’t succeed, I said, my understanding was that she did not wish to be intubated — which would require inserting a tube down her throat — and placed on a ventilator, which would breathe for her.
“No!” She grabbed my arm, looking horrified. “Do everything! Please save me, I don’t want to die.” I was taken aback and turned around to ask the nurses standing behind me, “You heard that, right?”
Despite ample forethought about her code status, the immediacy of death terrified her. In that moment, it was my duty to respect Ms. M’s current wishes, but I knew that there was no tenable option. If intubated, she would almost certainly never come off the ventilator. She would likely develop pneumonia and die. And even if the BIPAP mask worked, what then? She couldn’t go on wearing that mask forever. But right now, she was asking us to be aggressive. “Let’s give the mask a try, and in the meantime, we’ll call your daughter,” I told her. Fortunately, the mask relieved some of Ms. M’s breathing difficulty and she gradually settled down. Her daughter came in a few hours later. She spoke tenderly, reminding her mother of why she had made the decision to avoid aggressive measures. Finally, Ms. M told us that she did not really want to be intubated—she was simply scared.
The following morning, Ms. M did well. She was able to eat and was quite alert. She spent time with her daughter. Her breathing slowly became labored, but this time, with her daughter at her side, she was calmer. As the morphine drip flowed through her IV, her daughter held her hand and spoke softly: “Mom, it’s okay if you want go. It’s okay.” And she went peacefully.
As a new physician, I found speaking with patients about their own mortality to be incredibly challenging and emotionally taxing. How could I broach such questions without delving into a discussion fraught with fear, anger, grief, and denial? I would have liked nothing more than to avoid the topic altogether. After all, why add stress to an already ailing individual?
Because medicine, like life, is unpredictable. If we fail to ask these difficult questions and urge our patients to think about the answers, we do them a tremendous disservice. Discussing a person’s code status is ultimately about engaging in a broader dialogue about their values—what’s important to them. Often, these conversations arise when a patient is acutely ill or he has traveled down the long road of sickness, all curative options now exhausted. Some of these discussions go smoothly, leaving patients, families, physicians, and nurses comfortable with the outcome. Others grow tense, particularly when patients are too sick to speak for themselves and family members are instead left to sort it out. Inevitably, as illness progresses, the growing immediacy of death evokes fear. Decisions that once seemed certain are questioned. Patients and their families change their minds.
In medical school, I received little training regarding these difficult discussions. Informally, older physicians and senior residents have offered advice along the way, largely based on their own experiences. I have watched many of these conversations unfold and over time, I have begun to develop my own approach. Far from perfect, it has evolved from bluntly asking, “What’s your code status?” Now, we talk about patients’ priorities in life and in dying, and how I, as their caregiver, can best honor them. They no longer look at me quizzically wondering what I’m talking about.
The questions around end-of-life care are difficult but necessary. These issues continually resurface, as illness progresses, perspectives change, and fears build or abate. As a physician, I must ensure that my patients truly understand the consequences of their decisions. Sometimes, that means involving family or the primary care doctors who know them best. Other times, it requires being unwaveringly honest, no matter how dismal the situation may be. While discussing patients’ code status is never easy, doing so empowers them to have a say in how they might want their last hours on earth to unfold, and that is a most precious gift.