Abstract
Part One
The first thing I noticed about the mother was her sharpness—her angular face, biting humor, the edginess directed at her husband. Except for an aura of frenetic energy, nothing in her demeanor suggested that her teenage son lay dying down the hall. She was focused and direct. “We only have twenty minutes. He gets nervous whenever we're gone talking to doctors for very long.”
The husband tried to be conciliatory, although he also appeared not entirely comfortable with the involvement of the pediatric palliative care service in his son's care. “We're a little confused about your role in all of this,” he said.
The meeting proceeded more smoothly than I had anticipated given the start, and both parents seemed to relax after our attending mentioned that one of the many ways our team could be helpful was in end-of-life issues. It was as if they had thought we were planning a sneak attack—infiltrating their defenses with ideas for symptom control only later to unveil our agenda about their son's death. But being up front about death from the beginning somehow allayed their fears.
Although they remained guarded, we saw glimpses of their competing realities. When asked to describe his son, the father said, “He's gregarious. Life of the party. I think he's headed for a career in sales.”
“No,” she snapped, “He's going to die.”
Part Two
We saw them again several days later in the son's room. His condition had further deteriorated over the weekend, and his weakness was now so bad that he could not operate the remote control independently. He sat up in bed, face swollen, limbs atrophied, suction catheter for secretions draped over one shoulder.
The primary team was concerned. His parents had stated that as his health care proxies, they did not intend to allow intubation. But they were very reluctant to discuss the situation with their mildly delayed nineteen-year-old. “He's a fighter,” they kept repeating. “This news will devastate him. Do you want to completely ruin his final days?”
The primary oncologist agreed, “He is unable to understand the concept that he might die. It is outside the realm of possibility in his mind; he's a very concrete thinker. I think that even if we tried to explain everything to him, he would be unable to make an informed decision.”
The palliative care attending and I chatted with the family and patient at the bedside. The attending asked the patient, “Tell us. Say that in the middle of the night you were not able to speak for yourself. Would you be comfortable letting your parents make decisions for you?” The mother, standing in the corner, visibly bristled.
The son looked at us directly, and said in a halting, garbled, mouth-full-of-rocks voice, “Yes. But I want to know everything.”
Part Three
A meeting was called for the following afternoon. All of us gathered in a small conference room—the parents, an aunt, the primary oncologist, the floor attending, the palliative care team. The atmosphere was tense and anxious; it felt like a strategic planning session for a battle. Down the hall the patient was watching The Simpsons with his favorite nurse.
The meeting opened with a discussion continued from the day before about the do-not-intubate (DNI) order. The parents were definitive; no one was to tell him about his prognosis. The primary oncologist reiterated his belief that the patient was too limited to understand such information anyway. The plan for a life-threatening event was restated: supportive care until the patient's condition warranted the invocation of the proxy. Then the parents would sign a do-not-ruscitate/do not intubate (DNR/DNI) order.
The floor attending voiced her discomfort with denying information to a nineteen-year-old; she said that if the patient remained in the hospital, someone would have to have a more direct conversation with him.
The palliative care attending volunteered that she had found a hospice willing to provide twenty-four hour home care beginning the following afternoon. A quick discharge would allow the family to celebrate an upcoming holiday together at home.
A lengthy discussion followed about how best to ensure that the patient would not discover he was going home to die. Elaborate plans were developed to control communication around this issue with the patient.
Finally, the palliative care attending spoke. She said quietly, “I just don't think you can not tell him. If you don't tell him here, someone from hospice will have the conversation. It is not possible for them to be involved without his knowledge and consent. Do you really want it to be a hospice nurse? Wouldn't it be better coming from people he knows and trusts?”
The room was still; the frantic, emotionally charged conversation stopped. The mother cried quietly into a tissue. She had been the most fervently opposed; we waited for her reaction.
“I can't. I just can't. He's my son. How do you tell a nineteen-year-old that he doesn't have a whole life ahead of him? That he's going to die. Not in eighty years, like he thinks, but now, this week, maybe tomorrow. It's not fair.” She sobbed, harsh, guttural cries from somewhere deep and sacred. I couldn't breathe.
We waited. Her cries slowed and she looked up with resignation in her tired eyes. “You say it must be done. We have to do it, then. It has to be us. I can't let it be someone else.”
The conversation happened in the early evening with just the parents and the primary oncologist. It was tearful and hard, but in the end, the patient agreed that he did not want to be intubated.
Part Four
The next morning the attending and I made a social visit. The curtains were open and the room filled with light. The father was fluffing his son's pillow. Though worries still etched her face, the mother was smiling. It was as if the elephant in the room now sat quietly in the corner, present, but no longer the center of attention. The family told us how excited they were to go home.
Coda
The family had a great week. On a home visit, my attending taught the patient self-hypnosis to keep his mind and body connected. His family also absorbed the lesson in self-control, and peace settled in the house. He died at home shortly after, both of his parents by his side.