Thursday, April 28, 2005

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.

15 example(s) of insolence returned:


At 4/28/2005 9:31 AM, Anonymous Magnus Malmborn said...

With the risk of sounding callous, this sad tale highlights why certain religious beliefs neither can nor should be respected. Not only is brain death real death, but it is the only real death considering that you may survive a cardiac arrest if treated fast enough.

 

At 4/28/2005 9:57 AM, Anonymous Judy said...

Being disrespectful of the religious beliefs of others as the previous poster suggests is no way to foster communication.

I'm glad this latest physician was able to communicate in a way the family understands. I bet he was even respectful of their religious beliefs. You can do that without disregarding medical realities.

 

At 4/28/2005 11:31 AM, Anonymous Vanessa said...

Religious beliefs are not really the issue since they can potentially make it easier for a grieving family to come to terms with the fact that their loved one has passed on and give them comfort.

Extremist beliefs with an unwavering prejudgement are another story though. One pro-life site I frequent was pursuing the notion to get in contact with the family to convince them that brain death is a nothing but a hoax for organ harvesting and that until there is unrecoverable heart and respiratory failure they should keep on fighting the hospital to do whatever it takes.

In the end what worries me the most is that these tragic stories always end up becoming a banner for someone's propaganda and twisted and turned into something they're not.

I don't really see any way as to how communication would go smoothly in cases like this. As one of the family members pointed out, he was still warm to the touch and they could feel his heart beating. Any doctor who then comes along and states that he is actually already dead is going to be perceived as cold and uncaring or simply lieing (or at least I would have the inital response of being unable to grasp what he's trying to say).
A few days have passed now since the initial diagnosis and it was reported that he is starting to look swollen and "unnatural" and that organs are starting to fail. I think the primary reason they can see the doctors' POV now and not then is because they had the time to come to terms.
Compassionate verbal communication is essential, but maybe more importantly is allowing a reasonable amount of time to pass for the family to accept a situation as sudden as this one. Quoting a specific time frame for grief obviously doesn't help with this.

 

At 4/28/2005 11:43 AM, Blogger Orac said...

"Not only is brain death real death, but it is the only real death considering that you may survive a cardiac arrest if treated fast enough."

Well said!

In fact, in the case of a cardiac arrest, it is likelihood that the brain has suffered irreversible damage that drives the decision of when to stop resuscitative efforts.

 

At 4/28/2005 2:08 PM, Anonymous magnus said...

I need to clarify some things.

I did not mean you should be rude and tell them that they are just plain wrong or similar. If I missed some subtle nuance of language, I apologize. However, just because someone cherishes a belief, that does not imply we have to cater to it.

Since dogma is not open for discussion, explaining and presenting evidence with the intent that they will see their folly themselves and change their mind, is actually to not respect their beliefs. As for fostering communication, I digress, to make communicating meaningful you have to say what is real and not what your opponent want to hear. That does not mean you should be uncivilized though, and at a time of grief you have to be more careful than ever. I just meant that when beliefs have negative side effects you shouldn't just stand back and let the beliefs rule.

 

At 4/28/2005 4:17 PM, Anonymous Judy said...

Respecting beliefs doesn't mean catering to them. It does mean listening to people so you can understand WHY they are behaving in a way which appears irrational to you.

The word "irrational" tends to be seen as a pejorative, even if it is not meant that way, and therefore shuts down communication. It is important to do your best to treat the person's beliefs with respect while not allowing them to control the situation.

Example:
A pediatrician I know was trying to convince the mother of his patient to agree to a DNR order for an infant who had extensive brain damage leading to seizures which periodically caused cardiac arrest. The mother was ushered out of the room each time this happened.

The physician repeatedly explained what was happening, and the inevitability of death. The mom's response was to insist that the baby be resuscitated each time, because "When God is ready to take him, you won't be able to resuscitate him." -- also waiting for a miracle.

After many hours of discussion over a period of several weeks, he insisted that she not be excluded from the room during the next resuscitation. That was the last attempt. She finally understood.

Vanessa makes a good point when she says that time is important. Seeing the physical changes may also play into this, but it doesn't always. There are families who will hold on as long as the heart keeps beating - and we had one who insisited on praying for a miracle for several hours afterwards. We left the ventilator running at their request until one of our nurses was able to convince them that a miracle could happen as well without it as with it.

 

At 4/28/2005 4:31 PM, Blogger Andrew said...

A great post. I really appreciated reading this whole series about Taran Francis.

Just to note, you have a typo in the 4th paragraph - "Buddhists" appears twice in the list of religions that don't accept brain death as death.

 

At 4/28/2005 4:52 PM, Anonymous Anonymous said...

...or maybe they just weren't ready to let him go... None of us knows what was in their head or heart at the time maybe all the prayer was just their way of preparing themselves for the inevitable. They may have known death was coming but wanted to get ready to face the loss of a young child. No parent wants to go before their children.

 

At 4/28/2005 5:24 PM, Anonymous magnus said...

Religion is ideology, and as such it is the opposite of reason. If an opinion has religious background, the reasons will most often boil down to "because that's the way it is" in the end. Listening has a therapeutic effect though, and I'm not saying it is wrong, at least not in these cases. I would however rather call this respect for the person than for her/his beliefs. I intended to make a more general remark, considering the recent disturbing trend with religious groups demanding "respect" worldwide. In this case "respect" invariably means catering to their beliefs. The sensitivity of this case however prompts you to give more attention to ideas than they deserve to protect the relatives. Perhaps this was not a very good example after all.

I have spoken.

 

At 4/29/2005 10:36 AM, Anonymous Vanessa said...

I'd say your earlier scepticism of the lawyer would appear justified. His personal statement shows a lack of understanding and compassion with his clients' ultimate decision, or at least it does so to me.

Newsday.com quote:
Though the family had requested that the respirator be removed, the experience "was like watching an execution," Genis said. "You're watching the doctors and nurses disconnect everything, then you are just waiting for him to stop being a human being."

 

At 4/29/2005 11:37 AM, Blogger Orac said...

I'll have to go and find that account. Unfortunately, Taran stopped being a human being over a week ago, when his brain died. Turning off the ventilator had nothing to do with it.

The most pernicious aspect of this case is that it undermined the New York law that defines brain death as being indistinguishable from death, and it sowed confusion in the minds of people, who now may get the impression that brain death is not the same thing as death. I can see a rash of lawsuits and legal actions in similar situations coming.

 

At 5/01/2005 3:31 PM, Blogger Curious JD said...

Why would there be a "rash of lawsuits" and legal actions. Do physicians not understand the difference between a suit for injunctive relief and one for damages? This "ruling" merely stopped, for a brief period of time, the hospital from removing life support, allowing the family to have another doctor examine the child.

This suit was solely about asking the court to stop someone, however briefly, from doing something. That's not unique. If your neighbor is getting ready to cut down a tree and you think it's going to fall on your house, you get an injunction to stop him and make sure he has it done correctly so it doesn't. Does that generate a "rash" of lawsuits? If you're getting a divorce, you get an injunction to prevent the other side from draining your checking account. Are those the reasons for the high divorce rate?

Why should the lawyer have told them no? Is it so wrong to want a second opinion? I thought physicians encouraged a second opinion in dire situations? If they are as poor as everyone says, the lawyer probably did it pro bono.

You say the family's agony was prolonged, but from the reports it appears that they were actually happy to have confirmation of the child's state. That is certainly preferable to wondering if your child was let die for his organs. Which I know is likely not the case, but not everyone is as sophisticated as a physician and understands how organ-donation works.

How many times does this situation happen that it will result in a "rash" of lawsuits? I think you've bought into the litigation myth and are merely pushing it further without thinking about what you're saying. If anything, as you mention, physicians and hospitals will be MORE sensitive in this situation, resulting in this sort of thing occurring even less often.

 

At 5/01/2005 3:46 PM, Blogger Orac said...

You like straw man arguments, don't you, given that I never said I opposed a second opinion.

If the hospital is to be believed, it never gave a deadline to disconnect Teron and it never opposed getting a second opinion. I tend to believe the hospital in this specific case, for the simple reason that that has been the policy of every hospital I've ever worked at and because the story seems to indicate that it was as social worker who told the family that they had 24 hours. The veracity of the hospital in this matter could be verified if they have a written policy on the care of brain dead patients, as most do. Again, I think this whole case was a matter of poor communication and/or some ill-advised offhanded comments from hospital staff.

Given that and the fact that even the family's lawyer never disputed the diagnosis as far as I could tell from the news reports (plus the seemingly inappropriate closeness of the judge in this case, where the judge and his wife visited the child and his wife prayed over him), the lawsuit was unnecessary. Worse, it muddied case law regarding brain death. Brain death is death, legally speaking, is it not? The boy had already been issued a death certificate the day after the diagnosis of brain death was made.

Next, regarding the difference between injunctions and compensation, don't worry your lawyerly little head. I'm sure a malpractice suit for compensatory and punitive damages is not far off. I don't know if there was actual malpractice in this case, but certainly the circumstances were questionable enough to almost guarantee a lawsuit.

Finally, the lawyer got plenty of non-monetary compensation in return for his representing the family, regardless of whether he made any money. His face and voice were all over the news for days giving press conferences and interviews to newspapers, radio, and TV. You can't buy that kind of publicity.

 

At 5/02/2005 6:15 AM, Anonymous Anonymous said...

Orac,

These are not straw men, they just illustrate the flaws in your argument.

I guess what I don't understand is your fervent opposition to these people turning to the courts for redress for what they believed was a wrong. You have no basis to say if they were right or wrong in their interpretation. Why is it so offensive to you that they seek redress in our civil courts? What other method for stopping the act they believed the hospital was going to make did they have? Pulling a gun on the physician?

Have you read the ruling? I couldn't find it in your links. Perhaps if we had the actual order, we could talk more intelligently about its precedential value, but without an appeal, it's likely minimal. Lawyers can typically only cite reported cases as precedent, and cases are typically only reported when they go to appeal. But hey, you're the expert on this issue.

So because YOU are sure there's a malpractice case on a wholly different issue then this decision is bad? C'mon, you're smarter than this. Much like those who predicted the rash of obesity lawsuits, you're just playing chicken little. Your statement that questionable circumstances alone lead to a lawsuit is ridiculous. And, if there is a case, it has nothing to do with the decision to remove the child from life support.

So the lawyer has cornered the market on injunctions to keep hospitals from pulling the plug? He'll surely be rich now. You don't even know what kind of cases he typically handles, yet you ascribe the basest motives to him. In your mind, it's not possible for the lawyer to have had any other motive? You automatically get to assume the worst about him? Do you assume that the physician in question was probably just being his callous, egotistical self because hey, that's how physicians are - they view patients and their families as idiots not able to comprehend what's going on who need to be treated like children and quickly at that because their new Porsche is coming in and they have to get to the dealership? I'm sure you attribute the worst stereotypes to everyone you meet like that, don't you.

CJD

 

At 5/03/2005 3:30 PM, Anonymous Anonymous said...

I still wonder why the original hospital that found the tooth abcess didn't schedule his root canal for 11 days. And then no parent/guardian could be bothered to go with him for his scheduled procedure. And why the hospital would just send him home at the time of his root canal appointment because of irresponsible adults when he obviously had a serious infection. Or why this family then waited until the kid was on death's door before they sought care again. It sounds to me like the tragic loss of a good kid who died because he was let down primarily by his family, but secondarily by Bronx-Lebanon. It also seems crappy that the second hospital got this case dumped on them, so I'm not surprised they weren't the essence of compassion.

 

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