Family battling Children’s Hospital to bring teen home for Christmas

[MyBelle]

With the caveat that insurance policies can have additional riders or qualifiers, in general, insurance will pay for medically necessary transfers and subsequent transport via ambulance. A physician needs to certify first that the facility to facility transfer was indicated and medically necessary. Physicians need to certify that the patient requires a specialist/subspecialist, diagnostic test, treatment, or some combination of the aforementioned, not available at the first hospital. So if the hospital in CT did not have a pediatric gastroenterologist and the transferring physician believed that JP needed that then transfer to the nearest facility with such sub specialist would be necessary and medically indicated. Providing that this physician sufficiently stabilized JP to the best of his/her abilities in the context of his/her hospital resources and had spoken with a physician at the receiving facility who accepted JP the transfer would be deemed appropriate as well. Failure to do any of the above merits a COBRA violation and the sanctions for for physicians and hospitals are significant so physicians and administrators are not usually cavalier about this.

Now, if there was a pediatric gastroenterologist at the CT hospital but the P family requested that JP be sent to see Dr. Flores at BCH then the physician should write that the transfer was at patient or family request on the transfer/COBRA form. They still must stabilize JP before transfer and have an accepting physician at BCH. In many cases insurance may disallow ambulance costs for patient request transfers but this is somewhat company/policy/network dependent. Ultimately patients/families have the right to request transfer to a new facility but need to be aware that they may need to cover the cost of transfer. They also need to recognize that there are always risks associated with transfer (including the potential for a MVC or helicopter crash) and that if patient condition deteriorates en route the options for stabilization in the back of a critical care ambulance or in the air may be less than in an established hospital. Weather conditions can be a very relevant part of the discussion. Where I practice it often isn't safe to fly and we've had a few blizzards over the years where all involved have agreed that transport even by ground would be unsafe. In those situations sometimes it is actually safer to admit a child locally even if the facility lacks some resources and initiate treatment with good communication with the tertiary facility. In some cases kids will respond well and transfer will not be needed. I've had this experience in a few cases and the parents were overjoyed. In other cases, we've managed to buy them enough time to fly them out when the weather cooperates.

**Given that JP was transferred from the ED at her local hospital to the ED at BCH it is very likely that the accepting physician was indeed the physician they saw in the ED (or perhaps one of his/her colleagues if his/her shift ended between when they accepted JP and when she actually arrived). ED to ED transfers just require an accepting physician. Inpatient Hospital A to Inpatient Hospital B transfers require an accepting physician and an available bed and can be more difficult to arrange when beds are tight because in reality if BCH (or any other tertiary children's hospital) doesn't have a bed they don't have a bed and you can't transfer.**

Gee, if I ask you the time will you build me a watch? j/k

I don't believe it was a hospital to hospital transfer. The family lived in CT and BCH is in Boston, MA. Tufts is in MA. But several news articles mention the ambulance ride was several hours and was between CT and BCH. Surely if her choking was a medical emergency, her Tufts doc would have told her parents to call 911 and go to the nearest ER rather than spend hours in a blizzard?

 

[jjenny]

This I agree with. I really think that the best thing the Ps could have done all along would have been to listen to the physicians with open (which does not imply passive) mind, respectfully question that which they didn't understand or agree with, and try to work with the physicians to come up with a comprehensive treatment plan for their child. We talk a lot about "disruptive physicians" and I'm not saying they don't exist or that they don't compromise care by their actions but the reality is that disruptive parents who don't follow through with recommended treatments, alter histories, or prioritize other things above their child's health and care compromise care as well.

The problem is, BCH diagnosed her with somatoform and parents had to sign a treatment plan that specifically forbade them from seeking another opinion. BCH then contacted DCF when parents refused to follow their treatment plan for somatoform. So it was BCH's way or the highway.

 

[Curiosum]

I think it is entirely possible Tufts handed them off to BCH in an effort to get rid of them. Making difficult people somebody else's problem is an ancient management technique. Quite effective. Their child was the patient but no doctor receives additional compensation for the time consumed by ridiculously over-bearing parents.

JMO

Given the way this has played out, I question if this may be the case. It is also possible that when LP demanded that BCH transfer her to Tufts that Tufts refused the transfer. To an extent Tufts would be justified in that because it would be a lateral transfer at worst and many would consider it a downhill transfer.

 

[jjenny]

Given the way this has played out, I question if this may be the case. It is also possible that when LP demanded that BCH transfer her to Tufts that Tufts refused the transfer. To an extent Tufts would be justified in that because it would be a lateral transfer at worst and many would consider it a downhill transfer.

Parents were going to take her out of BCH and then take her to Tufts. She already had am appointment at Tufts from what her parents said.
BCH refused to allow them to take her out by calling DCF, and armed guards were put in to prevent parents from removing her from BCH.
Tufts isn't refusing to treat her. Dr. Korson obviously agreed to treat her even now, after she has been in DCF custody for 14 months.

 

[MyBelle]

Seriously? After over a year in DCF custody, her care is shifted back to Tufts and that's your proof? Of what, exactly? First of all, why after claiming she has somatic symptoms disorder, was her care returned back to Tufts and Dr. Korson?
Second of all, how does DCF justify keeping her away from her family, considering prior to her removal by DCF, she was treated by Dr. Korson?
Third of all, based on what her family says, she only had one appointment with Dr. Korson, and family isn't even allowed to know what kind of treatment she is getting or not.

Proof is in the Judge's Order: http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf

She may still be treated by Dr. Korson and still kept away from her parents.

Thousands of American children are kept away from their parents by child protective agencies in order to best protect the child from their parents' own destructive behaviors. That's just the way it is and will be in the future.

JMO

 

[jjenny]

Proof is in the Judge's Order: http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf

She may still be treated by Dr. Korson and still kept away from her parents.

Thousands of American children are kept away from their parents by child protective agencies in order to best protect the child from their parents' own destructive behaviors. That's just the way it is and will be in the future.

JMO

Why is she being treated by Dr. Korson if she has somatoform and not mitochondrial disease? Do tell.

 

[Curiosum]

Gee, if I ask you the time will you build me a watch? j/k

I'm clearly missing the inside joke.

I don't believe it was a hospital to hospital transfer. The family lived in CT and BCH is in Boston, MA. Tufts is in MA. But several news articles mention the ambulance ride was several hours and was between CT and BCH. Surely if her choking was a medical emergency, her Tufts doc would have told her parents to call 911 and go to the nearest ER rather than spend hours in a blizzard?

I believe it was an ED to ED transfer. After her parents brought her to the local ED she was transferred from there to the BCH-ED. This is still a hospital transfer but the difference is that the accepting physician is the ED physician and unless the hospital is on diversion or the ED physician can clearly document that they are not the appropriate facility because they lack what the patient is likely to need, or that the patient is not having a medical emergency (which no physician who enjoys having an unencumbered license will decide without seeing the patient) then they will be in violation of COBRA if they refuse.

 

[Curiosum]

Parents were going to take her out of BCH and then take her to Tufts. She already had am appointment at Tufts from what her parents said.
BCH refused to allow them to take her out by calling DCF, and armed guards were put in to prevent parents from removing her from BCH.
Tufts isn't refusing to treat her. Dr. Korson obviously agreed to treat her even now, after she has been in DCF custody for 14 months.

At the time this occurred JP was admitted as an inpatient at BCH. In order for her to be transferred to Tufts, JP would have needed an accepting physician who would take her as an inpatient transfer and Tufts would have needed to have a bed. In the middle of flu season that might have been a problem or it might not have. Also I don't believe that Dr. Korson usually admits to his own service so some other physician would have needed to accept and perhaps the other physicians weren't comfortable with that. Some physicians at Tufts were concerned enough to contact CPS in 2011 regarding JP. Of course it is possible that BCH never even tried to facilitate the transfer but I don't think we have that information.

When the transfer to Tufts was not possible for whatever reason, it sounds like the parents were going to discharge their child AMA. Many states have guidelines where AMA discharges of minor children automatically require a report to CPS. The physicians at BCH are mandated reporters so they have an obligation and legal requirement to report.

 

[i.b.nora]

I have spent the last hour or so listening to, among other things, a recording of a presentation that Dr Flores gave in September 2009 to the MitoAction people, of which he is now and was then, a board member.

You can read a summary of the 'talk' or access the audio.

The talk was given in 'town hall' by telephone fashion. Like these days when your Congressman/woman calls and invites questions from constituents.

Munchausen by proxy Accusations in Children with Mitochondrial Disease
By Cristy Balcells on 08/19/2009
September MITO Meeting welcomes guest speaker Dr. Alex Flores from Tufts Floating Hospital for Children, Boston Massachusetts

This topic is dramatically important to the parents of children with complex gastrointestinal presentations of mitochondrial disease. MitoAction brings this topic to our Mito community today in response to the increasing number of accusations of child abuse and Munchausen by proxy that have been placed upon many parents of children struggling from the devastating symptoms of mitochondrial disease.

There is a link there to the podcast.

Admittedly, I did not give it my full attention. In the Q&A, there was one call that I think was from a self ID'd female doctor, which sort of got the discussion back on track and his response was especially interesting to me, in relation to the Pelletier case. In essence he said, 'if the parents revolt and get very angry about the possibility of being separated from their child, "there IS A PROBLEM".'

His response is at about 43 minutes in, and the question is prior to that.

I am sure others will find other things of particular interest to them.

 

[jjenny]

At the time this occurred JP was admitted as an inpatient at BCH. In order for her to be transferred to Tufts, JP would have needed an accepting physician who would take her as an inpatient transfer and Tufts would have needed to have a bed. In the middle of flu season that might have been a problem or it might not have. Also I don't believe that Dr. Korson usually admits to his own service so some other physician would have needed to accept and perhaps the other physicians weren't comfortable with that. Some physicians at Tufts were concerned enough to contact CPS in 2011 regarding JP. Of course it is possible that BCH never even tried to facilitate the transfer but I don't think we have that information.

When the transfer to Tufts was not possible for whatever reason, it sounds like the parents were going to discharge their child AMA. Many states have guidelines where AMA discharges of minor children automatically require a report to CPS. The physicians at BCH are mandated reporters so they have an obligation and legal requirement to report.

It would not have been an emergency transfer per se. Parents were going to check her out of BCH and then take her to Tufts for already scheduled appointments. It would not have been an emergency admittance, but a scheduled appointment visit.

 

[MyBelle]

Why is she being treated by Dr. Korson if she has somatoform and not mitochondrial disease? Do tell.

I linked the Judge's order.

 

[Curiosum]

Why is she being treated by Dr. Korson if she has somatoform and not mitochondrial disease? Do tell.

I read the judge's order and don't see anything pertaining to requiring her to go back to Dr. Korson. However, I can see several reasons why this might be helpful:
-Perhaps Dr. Korson would complete his workup and either confirm (or refute) his provisional diagnosis of a mitochondrial disease.
-Perhaps she has a mitochondrial disease and somatoform disorder. Patients can have more than one illness and we often see somatoform manifestations alongside more organic conditions.

 

[jjenny]

I linked the Judge's order.

Sorry, that dog don't hunt. Judge claims that Justina suffers from severe and persistent somatic symptom disorder.
So, what why would Dr. Korson be treating her?
He is a mitochondrial disease expert, not somatic symptom disorder expert.

 

[jjenny]

I read the judge's order and don't see anything pertaining to requiring her to go back to Dr. Korson. However, I can see several reasons why this might be helpful:
-Perhaps Dr. Korson would complete his workup and either confirm (or refute) his provisional diagnosis of a mitochondrial disease.
-Perhaps she has a mitochondrial disease and somatoform disorder. Patients can have more than one illness and we often see somatoform manifestations alongside more organic conditions.

Because it's not in the order. But there are links posted on this thread that recently her care was transferred to Tufts under Dr. Korson. Judge ruled DCF should transfer her care to Tufts under Dr. Korson and DCF agreed to it.
If she has mitochondrial disease, all her symptoms can be explained by physical reasons ruling out somatoform disorder (by definition).

 

[Curiosum]

It would not have been an emergency transfer per se. Parents were going to check her out of BCH and then take her to Tufts for already scheduled appointments. It would not have been an emergency admittance, but a scheduled appointment visit.

Exactly and if BCH didn't feel she was ready for discharge then this would have been an AMA of a minor discharge. In the state I currently practice in we have to report these to CPS and are supposed to notify them before the child actually leaves our hospital if at all possible. Usually when this has come up I've been able to help the parents understand why discharge was not safe or why transfer was necessary and they eventually agreed with remaining or transfer or whatever. Ironically in the one case I could not resolve and did have to report the mom sent me a card afterwards because she realized after her child spent weeks in a burn unit that I had not been overreacting at all and she appreciated that I was willing to stand up for her child.

 

[Linda7NJ]

This wasn't a hospital to hospital transfer. You were directed to a local ED by the physician on call for your physician's group.

Correct.




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[jjenny]

Exactly and if BCH didn't feel she was ready for discharge then this would have been an AMA of a minor discharge. In the state I currently practice in we have to report these to CPS and are supposed to notify them before the child actually leaves our hospital if at all possible. Usually when this has come up I've been able to help the parents understand why discharge was not safe or why transfer was necessary and they eventually agreed with remaining or transfer or whatever. Ironically in the one case I could not resolve and did have to report the mom sent me a card afterwards because she realized after her child spent weeks in a burn unit that I had not been overreacting at all and she appreciated that I was willing to stand up for her child.

BCH diagnosed her with somatoform. Somatoform is not something for which emergency treatments are usually necessary. So I am not sure why they would feel she is not ready to discharge. Hospitals don't usually keep patients for long in an emergency treatment nowdays.

 

[MyBelle]

I'm clearly missing the inside joke.



I believe it was an ED to ED transfer. After her parents brought her to the local ED she was transferred from there to the BCH-ED. This is still a hospital transfer but the difference is that the accepting physician is the ED physician and unless the hospital is on diversion or the ED physician can clearly document that they are not the appropriate facility because they lack what the patient is likely to need, or that the patient is not having a medical emergency (which no physician who enjoys having an unencumbered license will decide without seeing the patient) then they will be in violation of COBRA if they refuse.

The ambulance ride to Boston was from Connecticut. I think it was a private ambulance. The family lived in West Hartford, Connecticut. Their "local" ED was not Tufts. It appears the ambulance went directly to BCH because Dr. Korson suggested a consultation.

They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn’t eating and was having trouble walking.
....Justina had gone to Children’s Hospital this time because the girl’s main specialist at Tufts, Dr. Mark Korson, wanted Justina to be seen by her longtime gastroenterologist, who had recently moved from Tufts to Children’s.

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

[jjenny]

Such concern over a cost of one ride in the ambulance.
How much was spend to keep her in a secure psychiatric ward?
Was it even remotely necessary for the diagnosis of somatoform?
It's usually an outpatient treatment, no need to put somatoform sufferers into secure psychiatric wards.

 

[Linda7NJ]

Jjenny

It's not the fact that they're talking, it's the content that I've having a huge issue with.

Do they have the right? Absolutely. I'll defend their right to keep on talking too.

My point is... It's going to be used against them. It sends up HUGE red flags all over the place. IMO.

Before ....I was unwilling to hop off the fence as I felt I didn't have enough information and the fact I'm not medically qualified to have an opinion...without medical records or the medical knowledge to draw an opinion...I had nothing.

This video ...changed that for me.

This video proves to me that there are genuine concerns that these parents fall into the "category of parents" that do doctor shop, do relish the attention, and do have a twisted interest in keeping this going to fill their own needs.
All IMO



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^^^^^^^^

Sorry to quote myself ...but I didn't feel like typing it all again


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