A tragic story

I became aware of a very tragic story yesterday. (Other links here, here, and here.)

Last Monday, a 13-year-old Bronx boy named Taran Francis was taken to Bronx-Lebanon Hospital with a severe tooth infection. A day later, he developed meningitis, slipped into a coma, and deteriorated. He was transferred to Montefiore Medical Center, and on Wednesday the family was told by doctors that he was brain dead. (Note: I've also seen the boy's name spelled "Teron Francis" and am not sure which spelling is correct.)

While I can understand how the family would be utterly devastated by the horrible (and possibly unnecessary) death of their boy and that they might be considering a lawsuit, given that the tooth infection had been diagnosed 11 days before and that he had been turned away from getting his root canal two days earlier because he didn't come with a guardian, I think that their grief is leading them to do something very inappropriate. They are suing the hospital to keep their son on life support:

We are holding on to him," said the boy's aunt, AnnMarie Douglas, as family members continued to hold a bedside vigil at the hospital for young Teron Francis.

"We are not giving up. We believe in God. He has life. I don't care what they say.

"Until that heart stops, we're not letting go of him," Douglas said.

At the risk of seeming callous or insensitive (which I am not, I assure you, having had to deal with brain death in children during trauma rotations in my residency days, experiences that haunt me to this day), I also have to view this as a teachable/bloggable moment. If the diagnosis of brain death is accurate and properly determined and documented (see here also), then, sadly, Taran is already dead. His body can be maintained on life-support for a while, but, without the brain its organs will slowly start shutting down, and there is nothing anyone can do about it. This is not the same as a persistent vegetative state, like the Terry Schiavo case, in which there was still brainstem function and Schiavo could still breathe on her own. In brain death, there is no higher brain or brainstem function. Brain death can be diagnosed on strictly clinical grounds, but most of the time it's confirmed by a cerebral blood flow scan, which will show no bloodflow to the brian or brainstem. Keeping the boy on life-support ("holding on" to him) only prolongs the suffering of the family and wastes huge amounts of hospital resources on an utterly futile gesture. Indeed, in most states (including New York) once the diagnosis of brain death is made, then life support can be withdrawn (usually after 24-48 hours to give the family time to gather) regardless of the parents' wishes. That doesn't mean that every effort shouldn't be made to withdraw support in as sensitive a fashion as possible or that there shouldn't be the flexibility to delay it for a while, if necessary, to give the family some time to come to terms with the situation or so that all the family can be there when the machines are turned off. However, unless there is a good reason to question the diagnosis of brain death, keeping a brain-dead boy on life support indefinitely, hoping for a "miracle" is misguided. (Even the family's lawyer is not challenging the diagnosis of brain death, as far as I've been able to ascertain.)

Even worse is that this lawyer would file such an ill-advised motion. Although I rarely agree with hospital flacks, in this case, I reluctantly have to agree with Montefiore's spokesman, who said: "The case and what this lawyer is doing is atrocious and a disservice to this family." Indeed. The family has just endured a horrific tragedy, one that will cause them pain to remember for the rest of their lives. They can be certainly be excused if they are not thinking objectively, are unable to understand brain death, or can't come to terms with the situation yet. They should be dealt with as sensitively and respectfully as possible. The lawyer, as an objective third party, cannot be excused for pursuing court action in a case like this, particularly given that the diagnosis of brain death does not appear to be in dispute.

I can only speculate here, but I rather suspect that the hospital might not have handled delivering the news to the family in a sufficiently sensitive manner, or that the doctors came across to the family as being too anxious to pull the plug and insufficiently willing to give the family some additional time. (My hunch is supported by the family's claim that doctors told them that Taran was brain dead and that state law allowed them to take him off the respirator after 24 hours.) This whole conflict might have been avoided. When I was training, it was always emphasized that, when talking to a family about the brain death of a loved one, one has to emphasize that the patient is dead; that there is no legal distinction between brain death and death; that we can keep the body alive for a while but inevitably, without the brain, it, too, will die; and that, according to virtually all major religions, there is no moral distinction between the brain death and death. Indeed, some say that we shouldn't even use the term "brain dead," but simply say that the patient is "dead." And, above all, one must be careful never to give the impression of being eager to pull the plug. Finally, in appropriate cases, one should also broach the topic of organ donation (probably not appropriate in Taran's case, because he had had a severe systemic infection). It also helps a lot to have a competent social worker around and (if the family is religious) appropriate supportive clergy, to help them come to terms with the tragedy that has just occurred. It's also possible that the hospital did everything correctly, but that this is just a family that can't let go or won't understand. That happens too, sometimes. It is also not unlikely that they are presently suffering through denial, which can sometimes lead families to behave this way, even when the case was handled perfectly.

In any case, although my heart goes out to the family for what they are suffering, I still have to hope that they will shake off their denial, quickly come to realize that it's over, and let Taran go. If there was evidence of malpractice in the care of their boy, then I have no problem with their filing a lawsuit after they have mourned. But holding on to a boy who has already died will not bring them the peace they crave, nor will it let them move on. What's being kept alive on the ventilator is but a shell. Taran is already gone.


ADDENDUM:

I had had a few misgivings about what I had posted, thinking that perhaps I had been too quick to judge. Then I became aware of this. I think I know now exactly why the family was so quick to sue, and you will too if you read this. So, in my unflinching willingness to admit when I might have done better, I present the money quote from the article:

When a doctor appeared, the two women asked, "Should we be worried about anything?" Douglas said.

"The doctor said, 'Yes. He's literally brain dead.' " Soon after, they were approached by a hospital social worker, who told them, "We're going to give you time to mourn. You have 24 hours," said Douglas.

Asked what that meant, the social worker explained, "Legally, in New York state, the hospital has the right to take a person off life support when he's brain dead," Douglas said.

That's when Marcerlyn called a lawyer.

Douglas noted, "We pleaded with the doctors, 'This child needs time, for Christ's sake. Give him time.' "

In a chilling response, she said, the social worker told them that the only reason the hospital was giving Taran medical attention at that point was "to keep his organs functioning in case you want to donate them."

Ugh!

If that's an accurate account of how the hospital broke the news to the family, then this whole incident is a perfect example of how not to tell a family that their child is brain dead. Although I suspect that the hospital personnel were probably somewhat more sensitive than portrayed, that last statement is almost certainly what pushed the family over the edge. Hospital personnel appear to have broken the cardinal rule in these very difficult situations and given the impression that they were eager to pull the plug (exactly what I said not to do above!). Even worse, the hospital seems to have left the family with the impression that doctors were only interested in the child's organs!

None of this changes the essential fact that Taran is dead (assuming the hospital did evaluated his brain function properly), meaning that continuing to keep him on the respirator is completely inappropriate. However, this revelation (which I should have found earlier--mea culpa) puts the family's decision to sue in a much different light.