What would you want?

Amol Verma is a resident in Internal Medicine at the University of Toronto. His Master’s research as a Rhodes Scholar at Oxford University examined the impact of conflict on delivering health services. He developed a broad range of interests in health policy through projects such as interning with the Ministry of Health in Ontario and helping found LEAD, a program to encourage leadership development in medical education.

 

 

The intercom beeps.

Code Blue 9th Floor, Room 21.

My heart skips a beat.

Code Blue 9th Floor, Room 21.

I hurry toward a highly organized chaos.

Code Blue 9th Floor, Room 21.

A white light flashes above the doorway. Laying unconscious in the hospital bed before me is a teenage man. His breaths are rapid, devouring the little oxygen he can inhale. His heart strains to keep pace with organs in overdrive. Crouched by his head, his parents wail their terrified grief. They cradle his flushed face, desperate hands clinging to fading life.

At the foot of the bed, the senior medical resident stands coolly surveying the situation, directing an ever-arriving swarm that brushes the patient’s brother aside. Nurses, respiratory therapists, anesthetists, medical students, and interns like me, stream into the room. Yet, as the medical machinery of a Code Blue whirrs into action, one all-important question hangs unanswered. In medical-speak: “What’s the code status?”

In the hospital, when a patient loses consciousness, loses their pulse, or stops breathing, a Code Blue is called. Surviving these precarious situations hinges on minimizing the time it takes to begin resuscitation. In just a few short moments, the entire medical team arrives to appraise the situation. Often, the Code will be their first encounter with this patient. Without knowing the person or their wishes, the team can only act on what is documented. The code status.

Code status. Cold, clinical, technical. Yet, we use it to denote the most intensely personal set of human preferences: how someone wants to be cared for when their life hangs in the balance. Simplistically, a code status can be conceived of as binary: Do Not Resuscitate (DNR) or Full Code (all possible life-saving efforts desired). Of course, this can’t capture the subtlety or complexity of end-of-life decisions. In the Code Blue, however, the distinction often needs to be stark. Should the medical team begin a care algorithm that includes CPR, shocking the heart, or ventilating the patient?

On this day, our young patient’s code status is unknown. He has an incurable cancer, his family speaks only Swahili and there is no translator. As nurses strap electrodes to his chest and wrap a blood pressure cuff around his arm, the respiratory therapist fits an oxygen mask to his face. An intern pulls medical history from his chart and the senior resident organizes the team, setting our course of action. The patient’s family huddles, surrounded by the activity, but alone behind an impenetrable linguistic wall. With no information, we must assume the patient is Full Code and begin resuscitation. In the corner, a nurse finds the number of our telephone translation service. Only moments before starting CPR, I dial urgently. “Can I get a Swahili translator on the line? Right now.”

Speaking with patients about their code status can be one of medicine’s most challenging conversations. Sometimes the decision is clear. Most young and healthy people are quickly designated Full Code. Many patients from nursing homes arrive in hospital with a previously documented ‘DNR’ status. But so many more cases occupy the difficult space in-between, where we ask people to make difficult choices about hypothetical scenarios based on unpredictable contingencies.

Atul Gawande wrote about this conundrum in his insightful New Yorker article “Letting Go.” He argued that health professionals often ask patients the wrong questions. We ask things like, “If your heart stopped beating would you want us to shock you?” Or, “If you can’t breathe, would you want to be placed on a ventilator with a breathing tube?” We ask questions about the processes of care, not the outcomes. It is as if a pilot asked his passengers if they prefer flying at 30,000 feet or 40,000 feet rather than asking where they would like to go. Harvard palliative care specialist, Dr. Susan Block, argues that we must do better to understand our patients’ goals. We should ask what they are willing to endure to increase their chances of living; what level of being alive they would tolerate. These conversations should not be one-off affairs, hurriedly exchanged in an Emergency Room, but rather an evolving dialogue, allowing people to reflect on a lifetime of accumulated values.

I hang impatiently from the telephone line, waiting for the interpreter. I am about to have a code status conversation that is miles away from Dr. Block’s ideal scenario.  Finally connected, I quickly describe the situation to a disembodied voice who promises to do her best to translate. Over the syncopated cacophony of monitors, alarms, and medical jargon, the patient’s brother and I are going to have one of life’s most delicate conversations. We pass the telephone between us, listening and speaking to the translator in turns. I tell him that the situation is very dire. That our interventions will not change the course of his brother’s life because of his terminal illness. As he listens to my translated message, his tear-stained face doesn’t waiver. He is not surprised. I take the phone back. “He understands,” was all the translator replied.

I asked what his family would like us to do. Would they want us to attempt to lengthen his brother’s life with our breathing machines and cardiac resuscitation? This time, he breaks from the phone and addresses his father, still draped over the head of his dying son’s bed. All of the commotion in the room suddenly stops. Only the rhythmic beeping of the heart monitor disturbs the sanctity of this conversation. Without understanding a word, the answer is clear to us all. The family does not want to prolong their son’s pain. “No suffering. Please, no suffering.”

In an instant, the room’s frenetic energy fizzles. Breathing tubes and defibrillators are put away. No less urgently, blankets are brought in and pain medications are started. Light sedation eases the patient’s breathing. The goals have changed from prolonging life to minimizing suffering. At the brink of all-out resuscitation, a crisis of communication has just been averted. Barely, but certainly. Thankfully.

According to Gawande, La Crosse, Wisconsin, started a systematic campaign to promote end-of-life discussions in 1991, when only 15% of people died with documented care instructions. By 1996, this number was increased to 85%.

The cost of health care in the last six months of life for La Crosse residents was less than half the national average. This is important, because end-of-life care is immensely expensive. Twenty-five percent of Medicare costs are spent on the 5% of people in the last year of their life.

According to a 2008 study by the NCI Coping with Cancer Project terminally ill cancer patients had a worse quality of life in the week before dying if they were mechanically ventilated or given CPR. Six months after death, their caregivers were more likely to suffer major depression.

Encouraging earlier end-of-life care conversations and better advanced planning can reduce the number of unwanted and unnecessary interventions. This can reduce health care costs. More importantly, early planning can help people articulate their end-of-life goals, which allows health professionals to act accordingly. As health care systems around the world strive for sustainability, we must respond swiftly when quality improvement and cost effectiveness coincide.

Unfortunately, end-of-life care has become sharply politicized. Sensational terms like “death panels” are bandied carelessly to score cheap points and monger fear. A reactionary attitude to end-of-life care conversations hurts our patients, handcuffs our physicians, and strains our system. My current hospital actively demands that every patient have a documented code status once admitted. The discussion needs to happen much earlier. We must initiate a broad public conversation that encourages people to express their end-of-life care goals. It’s a conversation that should not be shouted into a telephone over the din of a medical emergency. We can do better.

This article is the first in a series of health-related posts from Amol, inspired by his everyday experiences as a medical resident. The stories are real, though details are altered to protect the identities of his subjects. These are meant to be reflections on various themes, not fully formed opinions. He would love to hear your feedback!

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