Breaking bad news

A recent assignment for school caused me to recollect a patient from my previous hospital. An excerpt (the original essay is several paragraphs longer) from my assignment summarizes the story...

The patient, an 8-year-old boy, was the elder of two sons of a recently immigrated family. He had been admitted for status epilepticus, which proved to be refractory. He was ultimately placed in a medically induced coma (which he continued to seize through for a month) and the parents were asked whom else they would like present for a discussion of his prognosis.

The family requested that a doctor from their home country be involved and so a teleconference was established. Various members of the care staff reported their opinions and summarized the boy’s course to date. There was almost as much silence as there was talking and each person was careful to solicit and answer questions. The questions themselves guided the discussion. The parents really needed to believe that every option had been exhausted. They believed that because we had been able to find an etiology, we should be able to find a cure.

From a physician’s perspective, after a month of seizing and coma there was likely to be little brain function left. A multitude of testing revealed a genetic defect in a sodium channel, which was blamed for the seizure activity. The boy was not a surgical candidate because the seizures were multi-focal and originated from both hemispheres. Everything had been tried and nothing would break the seizures, which were still occurring roughly every three minutes. There was nothing more that could be done.

Most of the conversation centered on the futility of our treatments. That we, as doctors, could not even promise he would wake up if we took away the sedatives. Eventually the parents chose to withdraw support. I think they knew their decision from the moment they sat down; they just couldn’t say it out loud. I didn’t get the sense we had persuaded them; more that we gave them a safe and justified way of letting go and not feeling as if they were bad parents, that they were simply giving up because it was hard.

It was then, when they stated their decision, that I was so thankful for the private room (not a patient room) the whole conversation took place in. The family had somewhere they could be where they wouldn’t be disturbed or overheard. Not by a nurse who needed to take vitals, not by a doctor checking on another patient. They couldn’t hear the business of medicine still working around them, healing some of the other children who would eventually be able to go home to their parents. But the room also allowed us, as the medical staff, to separate the conversation we just had from the rest of our work. When you walk out the door and back onto the ward, you leave the heaviness in that room and focus on health and healing on the floor. The spatial separation aids the mental and emotional one.

That separation is not learned with one conversation. Or maybe it’s always imperfect. But I do know that I was unusually quiet the rest of the day. When a friend needed sympathy later that night, I just couldn’t muster any. His problems seemed so petty. The boy was only eight and he was dead. Dead because of a sodium channel, which seems like such a insufficient and small reason. He had a little brother who clearly didn’t understand what had happened. He had a mom and dad that somehow had to keep going. And while I wasn’t consciously dwelling on it, something in me didn’t let it go immediately. Within the week though, the petty problems regained their gravity and the pressing concerns of work and medical school applications took over.

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I have to admit that delivering bad news became easier. Maybe not in the moment, but my recovery got much faster.

With regard to the family in the story, the little brother had ongoing issues coping with his brother's death. I personally think some of this had to do with the fact that the parents never allowed the younger son to visit the older one (they didn't want him to see his brother sick or in pain). Then again, I am neither a parent nor a psychologist, so I am not at all qualified on the subject.