Requiescat In Pace

The hardest and most emotionally trying things I deal with in the intensive care unit is the end of life. Recently, I struggled with one particular situation that was medically, ethically, professionally, and personally challenging. A young man who has a bone marrow transplant for Hodgkin lymphoma has a devastated immune system when he catches the flu. Despite treatment for influenza, he has a horrendous inflammatory response to it. Our intensive care team meets him when he is intubated for low oxygenation. He spends three weeks in the intensive care unit, and I get to know him the last two weeks of his life. His acute respiratory distress syndrome does not get better. ARDS is a vicious disease for which we have little treatment but supportive care. He requires consistently high oxygen and pressures. He spikes fevers, and despite broadening his antibiotics again and again, he does not improve. He undergoes two courses of antivirals. He gets steroids for engraftment syndrome, paralytics for ventilator dyssynchrony, and even inhaled nitric oxide for ventilation-perfusion mismatching. We try standard low tidal volume ventilation, pressure support ventilation, airway pressure release ventilation, mode after mode after mode. In the last week of his life, he is on maximal ventilator settings; he has so little reserve that even routine nursing care makes him unstable. He cannot get any further studies because moving him out of the intensive care unit is too risky.

His mortality is certain. There is no question in my mind that this degree of physiologic injury is unsurvivable. Patients with bone marrow transplants with any degree of respiratory failure seldom recover, and anyone with this level of respiratory failure is on death's door. However, because of his age, his parents refused to let go. Day after day, we pushed on, doing little because everything that could be done was already done. It broke my heart. He was comfortable and sedated, but I knew there was no end point. I recommended transitioning him to comfort care, to have a peaceful end of his life.

The surrogate decision makers were intelligent but had trouble seeing the big picture. I do not blame them. For a child to die before a parent - I cannot think of a worse fate. Each day, we spent hours talking to the family, admitting that while we are not omniscient, we cannot expect anything but the one singular outcome. In the end, he went into multiorgan failure and died. But this is not the death I wished for him. On life support, we can keep anyone "alive." But everyone has to die, and death on life support is a death fraught with artificial lines and tubes, a lack of awareness, technological extremes, machines and devices. It is prolonged, dragged out and thinned so that what substance is left is minimal. It puts families through distress, caregivers through emotional turmoil, patients through suffering.

We could have called this medical futility and withdrawn care ethically. However, putting this into practice is an ordeal for caregiver and family alike. Sometimes, it is not easy being a patient advocate, an intensive care physician, and a fellow human being. Especially at the limits of medical care and the end of life, we face challenges that try everyone involved. We can only approach these with compassion, thoughtfulness, and equipoise.