Monday, April 25, 2005

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.

23 example(s) of insolence returned:


At 4/25/2005 12:20 PM, Anonymous Anonymous said...

It's not up to the lawyer. It's up to the family. A lawyer cannot file a motion on anyone's behalf without their consent. He didn't file this because he felt like it was the thing to do. He filed it because they wanted him to do so.

You may disagree with them, but to call their motion and the fact that they are not quite ready to let go of their son "outrageous" and to suggest they don't know what they are doing takes quite a bit of hubris.

 

At 4/25/2005 12:45 PM, Blogger Orac said...

Yes, it is ultimately up to the lawyer.

The family has just gone through a horrible tragedy and are still hoping for a miracle. They are not willing to accept that the boy that they loved is now dead, which is understandable. The lawyer, on the other hand, as an objective third party, should realize that, barring a serious question about the validity of the diagnosis of brain death, the law is ultimately not on his client's side and advise the client of that. (Lawyers turn down cases all the time if they don't think they can win.) Remember, I didn't say the family was being outrageous; I was criticizing the lawyer, who seems to be taking advantage of the situation for publicity. I can completely understand why the family might want to pursue this.

It's possible that the lawyer did inform the family of this and they wished to proceed anyway. In deference to that possibility and your criticism, I will concede that perhaps "outrageous" might have been a poor choice of words. "Ill-advised" probably sums it up better.

 

At 4/25/2005 12:56 PM, Blogger Curious JD said...

It's not up to the lawyer at all. They could file the case pro se if they wanted. They don't even need him. The family may ultimately decide as you say, but if they want to make that decision with a little clarity, what's wrong with them having time to do that? Perhaps you missed this part of the story:

"A day later, at Montefiore, the family said a doctor told (sic) that the boy was brain dead, and that state law allows the hospital to remove such patients from respirators after 24 hours."

If someone told you that your son was clinically brain dead and would be removed from life support within a day, how would you take it? The hospital subsequently said they had no intention of removing him that quick, but that's not what the physician told them.

The lawyer may be objective, and an objective person can say, hey, I don't have all the facts, but if they pull the plug on this kid it won't matter. So let's get a little time to properly assess. That sounds pretty reasonable, and hardly outrageous or even ill-advised.

If the lawyer is just doing it for publicity, he's not getting much out of it. One mention in each story. Didn't even say where the guy was from. I think you've let some other dislike cloud your judgment.

 

At 4/25/2005 1:08 PM, Blogger Orac said...

That's one reason I speculated that perhaps the hospital didn't handle things sensitively enough. Giving the perception of being too eager to pull the plug is a big no-no, which will provoke understandably nasty reactions in families.

In any case, the only grounds I could see for such a motion is if there were a serious question about the validity of the diagnosis of brain death. If that's the case, then it's not unreasonable, but even the boy's lawyer is not questioning the diagnosis, as far as I can tell.

As for how I would take it if such news were delivered to me, I would be utterly devastated. However, I would also give permission to pull the plug as soon as reasonable, because I understand that brain death is death.

I did, however, alter the text to remove the word "outrageous," as I think that perhaps the criticism from the previous anonymous commenter that it was too strong a word was probably correct.

 

At 4/25/2005 1:17 PM, Blogger Curious JD said...

I agree with you. The grounds for the motion, which admittedly neither of us have seen, may have simply been that the family wanted a second opinion. The lawyer's not in any position to say anything probably, since they believed it had to be filed so quickly.

I would want more time. And if one doc told me that they were pulling the plug regardless in 24 hours, I'd file the motion.

 

At 4/25/2005 6:08 PM, Blogger Orac said...

Note the addendum I posted. To reflect it, I changed the time tag of the post from 7:24 AM to 6:07 PM.

 

At 4/25/2005 7:08 PM, Anonymous Judy said...

Second opinion makes sense, particularly if they heard correctly and the folks at the hospital were so insensitive. That's certainly possible, because sensitive people would very likely encourage a second opinion if it helps the familiy accept this tragedy.

OTOH, I've been present when parents were offered the option to either terminate life support or place a DNR order -- or even stop a resus in progress for 30+ minutes on a kids with a lethal congenital syndrome. The physician is someone I know to be caring and sensitive. One father reminded the physician that as a law enforcement officer, he'd been permitted to carry his pistol into the hospital. It stayed holstered, but still....

Another family berated the baby's sibling for "not praying hard enough"

There have been others - but you get the point and have probably seen this yourself.

Some people are so distraught that they either cannot hear the message being delivered or cannot process it appropriately. The lawyer is probably thinking second opinion - and wasn't there to determine whether the message was delivered in a sensitive manner or not.

 

At 4/25/2005 7:44 PM, Blogger poopie said...

By the time a case like this hits the hospital doors, it's just another tragic story.

The science of medicine is not perfect, nor are the practitioners. Our emphasis should be on community involvement to re-enforce that truth and build support systems.

Of course, I've always been a dreamer.

 

At 4/26/2005 12:27 AM, Blogger Maurice Bernstein, M.D. said...

This comment of mine is only to remind everyone of the need to use non-ambiguous words when speaking about a brain dead patient. Sometimes the use of the word "life-support" when speaking about a dead person can confuse the non-sophisticated person including family members. There is no life to support once the diagnosis is made. One should use the words "former life-supporting measures" or just the name of the therapy like "ventilator" or "blood pressure medications". Doctors and nurses still let "life-support" sneak out when talking to other healthcare workers and families. In the case where the family has agreed to organ procurement, use of the ventilator and vascular support should be explained to the family not as life support but a means to keep the organs in the best condition for use in transplant. ..Maurice.

 

At 4/26/2005 12:49 AM, Anonymous Julia said...

*sigh*

There was a similar case in Utah recently, at Primary Children's Medical center, where a six-year old with brain cancer, was brought into the Emergency room and was pronouced brain dead by two different doctors, and the family disagreed with the decision and successsfully sued for no death certificate to be issued, and for him to go home on hospice care. I think you'll really like this case, because it also gets into your alternative medicine ranks...

Here's a copy of links to some of the newspaper articles:

http://www.sltrib.com/utah/ci_2427218
http://www.sltrib.com/ci_2429229
http://www.sltrib.com/utah/ci_2429234

And for good time fun: http://www.jessekoochin.com/ (/end sarcasm)

As a medical student, I've just rotated with the physicians who were involved in this case and more caring, thoughtful, compassionate, intelligent doctors you won't find. After sitting with them, and watching them deliver painful, difficult news to families, I know that they were very sensitive about it, but the family still refused to listen. In Utah, parents' rights versus doctors' decisions is a hotly debated topic, and currently, parents' right, regardless of how little knowledge or judgement the family has, is winning.

Sorry, I'm stopping now, before I really start to rant.

 

At 4/26/2005 9:14 AM, Blogger Orac said...

Julia:

Geez, this story is even worse than that of Taran, because the false hope of given by alties leading to this situation. In Taran's case, at least, there is the suddenness and the possibility that his death may have been prevented.

(BTW, you wouldn't happen to be suggesting blog material, would you? I might take you up on it, but not immediately; this case already side-tracked me from my original plans for the blog this week.)


Maurice:

I agree. Ambiguity can leave false hope that brain death is different than just plain death and that in these cases the term "life support" is a misnomer. In fact, the hospital medical director gave a pretty good way of dealing with the terminology, stressing that Taron is on "organ support," not "life support."

 

At 4/26/2005 9:17 AM, Blogger Orac said...

Julia:

One more thing. How on earth could they have sent this poor child to hospice? Hospices don't generally accept patients on ventilators, given that their purpose is palliative care only and no life-prolonging treatments are given there.

 

At 4/26/2005 11:49 AM, Blogger ProfWombat said...

Who are you?
I'm a former general surgeon trained at Montefiore in the late 1970s. I'd guess we'd have something to say to each other.
I gave up practicing in 2001 and am finishing a JD. And, no, I have no interest in medical malpractice as a career option.

 

At 4/26/2005 12:09 PM, Anonymous Anonymous said...

jd and orac..is Bronx-Lebanon a public hospital, and was the boy an indigent patient? the malpractice sounds like it started when they diagnosed the serious infection and then didn't schedule anything for 11 days? and sent him home instead of having him sit and wait until he could find a parent/guardian to come on the day of his root canal? of course, who sends a kid or anybody for a root canal alone, but public hospitals see this type of thing quite a bit. I'd think they would have better procedures to deal with it

 

At 4/26/2005 3:28 PM, Blogger doulicia said...

Lawyers don't have to take cases. I distinctly remember from the ethics part of the bar exam review course I took that "a lawyer is not a bus: she does not have to take all riders."

Attorneys always have the option to turn away clients.

 

At 4/26/2005 8:38 PM, Blogger Orac said...

Prof Wombat: If you want to know who I am, simply e-mail me.

Anonymous: As far as I know, Taran's family was poor and on Medicaid.

 

At 4/27/2005 11:31 AM, Anonymous Anonymous said...

It is sad to say this but if the parents would have to pay 10% of the hospital cost, they would understand much faster that "brain dead" means "dead".

 

At 4/28/2005 7:27 AM, Anonymous jb said...

Is there any other industry where failure to deal with people with appropriate empathy is likely to lead to a multimillion dollar lawsuit? Health care workers are obligated to divine the family's state of mind, come up with a satisfactory way of delivering devastating news, and show up with a social worker and clergy in tow to ease the family's grief. Fine and admirable, but did anyone else reading this tragic story start a mental timeclock ticking away until the first mention of lawsuit? We are not here to take care of sick folks; we're here as cash cows for the lawyers.

 

At 5/01/2005 3:17 PM, Blogger Curious JD said...

jb,

What are you talking about? As far as this article goes, the only claim appears to be one for injunctive relief. The law has other facets beyond mere civil suits for damages.

 

At 5/01/2005 4:51 PM, Anonymous Anonymous said...

You got it JD! Why don't they get it that most of us aren't looking for money.

 

At 5/09/2005 4:23 AM, Blogger Mari said...

If you like to leave a condolence to Teron Francis Family you may visit http://teron-francis.memory-of.com.

 

At 5/09/2005 4:24 AM, Blogger Mari said...

If you like to leave a condolence to Teron Francis Family you may visit http://teron-francis.memory-of.com.

 

At 11/26/2005 10:52 PM, Anonymous tom said...

Thank you, very interesting!

 

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