A sad end to a sad tale

[A NOTE BEFORE STARTING: In the media accounts cited, I've seen the name of the unfortunate boy in this case spelled both "Teron Francis" and "Taran Francis." I do not know which spelling is correct.]

I've been commenting (also see the update) on the Taran Francis case this week a bit more than I had planned (in fact, it's kind of muscled out the other science-related posts I had been planning, but that's OK). Today, the sad case will finally come to an end, and I hope that the family will finally be able to find some peace. To recap briefly, Taran Francis is a 13-year-old boy who went into a coma from an untreated abscessed tooth and developed meningitis, which ultimately progressed to brain death. When informed of this diagnosis, the family got a lawyer and won a ruling that prevented the hospital from removing life support.

My initial take on the matter was that this was a horrible ruling, both bad law and bad medicine, because it distinguishes between brain death and death and, worse, forces the hospital, in effect, to keep a corpse alive indefinitely as long as the family wants. I speculated that the family would eventually realize the futility of this course of action and that they were only prolonging the agony of everyone involved who loved Taran. Thankfully, my speculation turned out to be correct. Even more thankfully, the family came to this realization sooner, rather than later. The family is scheduled to appear in front of Judge McKeon (the same judge who issued the injunction that prevented the hospital from disconnecting the ventilator), where they will ask him to remove the injunction. Later today, the ventilator will be turned off. What happened? The family brought in an outside doctor, who confirmed the diagnosis of brain death, but--more importantly--explained the significance of the diagnosis (that Taran is dead) in a way in which the family could understand and accept. According to this account:

The last minutes of 13-year-old Taran Francis's life will be today. He's been brain dead for a week now, an agonizing week in which his family fought to keep him on a respirator. But last night, an independent doctor examined Taran and changed their mind.

Robert Genis, the family's lawyer: "He was polite, he was respectful of her. He spoke to you the way you'd want a doctor to speak to you and when he explained to her, her child condition she understood"

I had always suspected that this conflict was due to a problem with communication more than medicine. They almost always are. These are among the most difficult situations to deal with and explain to a patient's family, particularly when that patient is a child. One particular mistake I perceive was that last week someone from the hospital apparently mentioned that state law permitted the hospital to remove Taran from the ventilator 24 hours after the diagnosis of brain death. Whether it was intended that way or not, it was clearly perceived by the family as a threat to remove the ventilator in 24 hours. Even worse, if the family account is correct, they were told that the only reason the hospital was keeping Taran alive was in case they wanted to donate his organs. It's usually not the attending doctor who points this out to the family, in my experience, but rather residents (who are much less experienced in these delicate matters) or other ancillary staff, sometimes even in passing. Also, the rhetoric coming from the hospital on the news media didn't help. Although the frequent statements in the media that Taran is "dead" and "has been dead for a week" were without doubt 100% medically correct, they were delivered in manner that came across as rather harsh on TV and the radio, even to me, someone who is inclined to be sympathetic to the hospital's point of view and the problems inherent in dealing with such delicate situations. Such statements probably contributed to a "circle-the-wagon" mentality in the family, confirming in their minds their worst suspicions about the hospital.

However, it might not have been entirely the hospital's fault. Clearly Taran's family is very religious (the frequent quotes by them in the media "hoping for a miracle" and the frequent references to prayer). Although Catholicism, most sects of Protestantism, and many other religions accept that brain death is death, there are fundamentalist Christian sects, Buddhists, orthodox Jews, Buddhists, and a variety of other religions that do not accept brain death as "real" death, insisting that death doesn't occur until the heart stops beating. Also, in poor communities, particularly African-American communities, it is not uncommon for there to be prevalant an extreme mistrust of doctors and medicine (a distrust that I've experienced myself in dealings with patients). This distrust, often exaggerated even when justified, makes it all too easy for quacks to prey on poor people in these communities, and I'm guessing that it was one factor that made it easy for the family to be convinced that the doctors have no interest in Taran, other than as a source for organs. (Never mind that in this particular case it is highly unlikely that this is true, given that Taran's systemic infection probably ruled him out as an organ donor.) Mix fundamentalist religious beliefs and unrealistic hopes for a miracle with a pre-existing distrust of doctors and hospitals, and even a perfect handling of the delivery of the bad news to the family might not have prevented this conflict. However, letting the family get the message that the hospital was threatening to turn off the ventilator and was interested only in Taran's organs was disastrous. It reinforced the preexisting mistrust, amplified by questions about whether Taran's dental abscess was handled appropriately that probably led the family to be suspicious that the hospital had screwed up.

Fortunately, the outside doctor was able to overcome these problems. I recall hearing on the radio a statement from the family's lawyer along the lines that, if only the original doctors had discussed Taran's situation with the family in the first place in the manner that this outside doctor did yesterday, then the family probably would never have opted for legal intervention last week. (Of course, I still think he should have told the family that they have no case, but people will accuse me of lawyer-bashing when I say that.)

I will remember this case (and, hopefully learn from it) as an example of what can happen if communication breaks down between doctor and patient or patient's family. It has often been said that behind most malpractice suits is bad communication between the doctor and patient, regardless of whether malpractice actually occurred. It's equally true that communication failures can result in other kinds of ugliness, like the legal battle over the Taran Francis case. Fortunately, intervention with better communication kept this case, and the agony of Taran's family, from dragging on too long.