Abstract
As I present the case during bedside rounds, I sense Mr. Anderson's anxiety. He flinches when I touch his hand and remind him of his name, the date, and where he is. He must anticipate the excruciating examination, knowing our medical team will stretch his contracted right arm, lift his anguished torso to auscultate his lungs, and prod at his decaying ulcers.
Mr. Anderson doesn't have a health care proxy, so we spoke with his next of kin about treatment options. We informed his sister of his failing respiratory health and poor prognosis. Given his terminal condition, compounded by the acute infection and discomfort, she agreed it's time to make him do not resuscitate (DNR)/do not intubate (DNI).
During my presentation, I struggle with the emotional turmoil of my job as a medical student. The fear that comes from knowing in detail how each organ system can fail. The frustration of information asymmetry between physician and layperson. The demoralization that comes from watching a patient suffer in his last days of life.
We completed the DNR/DNI paperwork. But his sister chose not to stop all treatment. Plan for today: continue PEG feeds and antibiotics; start bilevel positive airway pressure (BIPAP) immediately; and give pressors, if necessary.
My frustration and demoralization are channeled into academic questions.
How much does Mr. Anderson's sister know about his wishes? What made her choose that treatment plan? Would I choose differently if Mr. Anderson were my grandfather? Would my family choose differently for me?
My family knows my wishes. I wouldn't want to be kept alive by machines if I were brain dead. I wouldn't want resuscitation if a terminal illness were causing intractable pain. I wouldn't want radical treatment if the quality of life sustained were dreadful.
But what if the scenario weren't as clear-cut as brain death? Would the subtleties and nuances common in medical decision making pose insurmountable barriers?
We will continue to discuss the treatment plan as his condition deteriorates. But Mr. Anderson doesn't have a living will, and his sister is reluctant to withhold the less invasive treatments.
Physicians speak and behave with sensitivity and tact. They protect and shield family members from seeing gruesome details. So Mr. Anderson's sister hears delicate descriptions of grim circumstances. She is shuttled out of the room during painful tests and procedures. She doesn't smell feces mixed with necrotic ulcers during his diaper changes; doesn't hear his racing, labored breathing at all hours of the night; doesn't see his face contort to the lightest palpation during exams. Can Mr. Anderson's sister discern reality from diplomacy? If she isn't allowed to hear the full story or see the complete picture, can she comprehend the graphic, crude truth about Mr. Anderson's current life to make truly informed choices?
Mr. Anderson's sister isn't versed in treatment options, side effects, and statistical outcomes. She doesn't have years of training to fully appreciate the risks and benefits of interventions; she has only brief discussions with physicians during this acute, stressful time. Has she internalized that his feeding tube won't improve mortality and may worsen his aspiration pneumonia? That antibiotics likely contributed to his current gastrointestinal infection and will have little effect on his advanced sepsis? That BIPAP and pressors may save his life, but only for a day or two? Does she understand that these seemingly benign, minimally invasive interventions may extend his life, but also prolong his agony?
The unanswered questions linger, only fueling my emotions.
Good morning, Mr. Anderson. I hope you're feeling some relief from the BIPAP.
I'm afraid you're not. I heard you breathing from the nurses' station. You're still breathing in and out over 40 times a minute—it's a mystery that your body hasn't given up. I don't imagine your respiratory muscles can last much longer.
Hello Mr. Anderson. It's another beautiful day outside—uncharacteristically sunny for winter in Manhattan.
You barely open your eyes to my voice. I notice crusted, white residue at the corners of your mouth—probably a combination of dead skin and saliva. Plentiful dandruff coats your gray curls. The odor in the room reflects your hygiene, aggravated by warmth from the beaming sun. But the alternative is worse: rolling you onto your side for a sponge bath inflicts excruciating pain from multiple ulcers. That's the only time you shift energy away from breathing to moan in pain.
Good morning, Mr. Anderson. How are—
Silence. No painful moans. No air fighting its way through congested bronchioles. His turbulence that once filled the room is gone.