Family battling Children’s Hospital to bring teen home for Christmas #2

[annahanna]

I remain deeply curious about the role Dr. Flores did or did not play when Justina was admitted to BCH.

Not a healthcare background here, but here is my take on it.

Dr Flores is a well-respected physician and a full professor at Harvard Medical School. At BCH, he is not the GI Department head, nor is he the director of the Motility Service. He is the director of Ambulatory Community Services, and an associate in GI and Motility disorders.

Since Justina’s symptoms, as reported to the Boston Globe, were largely neurological, it is likely she was initially admitted under the neurology service. The Globe article mentions a large number of doctors were in and out of her room the first few days, so it is likely that GI, Cardiology, the Metabolism service, Psych, and others examined her. I am sure that Flores was not called in the middle of the night when Justina arrived as he was not on call. It is likely that he was contacted to ask about the cecostomy during the day on Sunday. If he had volunteered to take on her case, he likely could have done so at that point. A couple of things could have prevented that:
1) If the hospital administration already suspected abuse and believed he was too close to the case to be objective
2) His primary location is Boston Children’s Waltham – about 30 minutes from the main hospital. He appears to spend the majority of his time in Waltham, not on Longwood Avenue.
3) He may not have been “on service” that week. My child’s GI issue is secondary, so GI has never admitted my kid directly. However, if they operate the way at least some of the other departments do, the doctors are on an “on service” rotation where they take on responsibility for all the GI hospitalized patients for that week. Depending on the size of the department, and the details of the rotation, they may be “on service” 1 week every 1 to 3 months.
4) If the other physicians, including the on call GI, has already concluded that her primary issue was not GI, there would be no reason to insist that he be allowed to join the case.

 

[annahanna]

There are a few other things about the Pelletier’s version of the admission that do not make sense.
1) They claim that she was supposed to be a “direct admit”. However, they also state that they had not seen Dr Flores yet since his BCH move. As a general rule
A) Direct admits have already been seen by the doctor at that hospital and already have a medical file in that location
B) Direct admits are generally done when the doctor has already been working with the patient on that issue. From all reporting, this was a new issue (either due to the flu or a 4 month long exacerbation of her disease process.)
C) Direct admits are not taken through the ER. They go directly to the appropriate floor and the paperwork is either handled on the floor or the parents are sent down to admissions.

2) They say that they were directed by Tufts to have her admitted to BCH to be seen by Dr Flores.
A) No one at Tufts really has the authority to dictate who her doctor would be on admission to another hospital. They may have recommended that she see Dr Flores for her GI issue – generally accomplished by making an outpatient appointment. Or they may have recommended that she be hospitalized due to her reported symptoms. Or both. The parents may have interpreted this order as have her hospitalized under Dr Flores, but that is not a reasonable order from a Tufts physician.
B) Justina arrived at Boston Children’s Hospital by ambulance. It was the middle of the night, on a weekend, in a significant snowstorm. Linda Pelletier described the trip as treacherous to the Boston Globe. No doctor in his or her right mind would advise someone to undertake a 100 mile trek under those circumstances. If it were an emergency they would have directed her to the nearest emergency room. If it was not an emergency, they would have advised waiting.

3) Current articles and interviews often mention that Justina had the flu and “flu is dangerous to Mito patients”. There is no apparent mention of the flu in either the leaked Metabolism Consult from 2/12/13 or the Boston Globe article. (The interview for the Globe piece took place in April 2013 per Lou Pelletier but it was not published until 12/13.)

The public really is not going to know the complete story for a long time – if ever.

 

[sweetmom]

There are a few other things about the Pelletier’s version of the admission that do not make sense.
1) They claim that she was supposed to be a “direct admit”. However, they also state that they had not seen Dr Flores yet since his BCH move. As a general rule
A) Direct admits have already been seen by the doctor at that hospital and already have a medical file in that location
B) Direct admits are generally done when the doctor has already been working with the patient on that issue. From all reporting, this was a new issue (either due to the flu or a 4 month long exacerbation of her disease process.)
C) Direct admits are not taken through the ER. They go directly to the appropriate floor and the paperwork is either handled on the floor or the parents are sent down to admissions.

2) They say that they were directed by Tufts to have her admitted to BCH to be seen by Dr Flores.
A) No one at Tufts really has the authority to dictate who her doctor would be on admission to another hospital. They may have recommended that she see Dr Flores for her GI issue – generally accomplished by making an outpatient appointment. Or they may have recommended that she be hospitalized due to her reported symptoms. Or both. The parents may have interpreted this order as have her hospitalized under Dr Flores, but that is not a reasonable order from a Tufts physician.
B) Justina arrived at Boston Children’s Hospital by ambulance. It was the middle of the night, on a weekend, in a significant snowstorm. Linda Pelletier described the trip as treacherous to the Boston Globe. No doctor in his or her right mind would advise someone to undertake a 100 mile trek under those circumstances. If it were an emergency they would have directed her to the nearest emergency room. If it was not an emergency, they would have advised waiting.

3) Current articles and interviews often mention that Justina had the flu and “flu is dangerous to Mito patients”. There is no apparent mention of the flu in either the leaked Metabolism Consult from 2/12/13 or the Boston Globe article. (The interview for the Globe piece took place in April 2013 per Lou Pelletier but it was not published until 12/13.)

The public really is not going to know the complete story for a long time – if ever.

This is vital and important info, AnnaHanna. Thanks for posting it.

It is so frustrating to keep learning that over and over, things the family swears to be true turn out to be wildly exaggerated or just plain false. Add to that the frustration of reading "news" stories that accept their false information as the gospel truth, and worst of all is reading countless comments by gullible people who attack the hospital's actions and the courts and DCF, etc. , including the morons calling for militias to invade the hospital. Nothing can persuade them they are wrong, apparently.

There is an important book to be written here, exploring the many layers of this complex and disturbing story. I hope a good investigative reporter is already taking voluminous notes...

 

[sweetmom]

And this: People toss around the word "flu" to mean almost any kind of intestinal upset, not actual influenza. That's misleading and not too bright, but it is common. But for reporters to then use the word flu without confirming that is what she had, is terribly wrong and unethical. They should know better.

And if it was influenza, does that mean the Pelletiers...or her doctors...did not make sure Justina had received the flu vaccine? A sickly and compromised child should never be unprotected.

 

[K_Z]

Good post. You are correct that the story as told doesn't make sense, both from a "direct admit" perspective, as well as considering EMTALA laws (link below).

My additional comments in blue.

There are a few other things about the Pelletier’s version of the admission that do not make sense.
1) They claim that she was supposed to be a “direct admit”. However, they also state that they had not seen Dr Flores yet since his BCH move. As a general rule
A) Direct admits have already been seen by the doctor at that hospital and already have a medical file in that location

Not always "seen" (as you said), but definitely "direct admits" have been ACCEPTED as an admission by a doc with admission privileges. That usually occurs by phone on the part of the referring doc, to the accepting doc. The ACCEPTING doc usually does the phone calls to arrange the direct admission, and who will see and write orders for the admission if her or she is not immediately available, and which nursing floor or unit the patient will be admitted to. This has to be coordinated with the nursing supervisor. Also, which "service" is the patient admitted to.

B) Direct admits are generally done when the doctor has already been working with the patient on that issue. From all reporting, this was a new issue (either due to the flu or a 4 month long exacerbation of her disease process.)
C) Direct admits are not taken through the ER. They go directly to the appropriate floor and the paperwork is either handled on the floor or the parents are sent down to admissions.

Correct, most direct admits are not usually processed into a bay in the ER/ ED as an ER admit. Sometimes, when it is unclear which unit they are going to, or if a bed is not quite ready, or it is change of shift, or staffing is short, they may be "boarded" in the ER/ ED until the bed or nursing staff is available.

2) They say that they were directed by Tufts to have her admitted to BCH to be seen by Dr Flores.
A) No one at Tufts really has the authority to dictate who her doctor would be on admission to another hospital. They may have recommended that she see Dr Flores for her GI issue – generally accomplished by making an outpatient appointment. Or they may have recommended that she be hospitalized due to her reported symptoms. Or both. The parents may have interpreted this order as have her hospitalized under Dr Flores, but that is not a reasonable order from a Tufts physician.

BBM. Entirely correct. Someone with privileges at the admitting hospital MUST accept the patient for direct admission.If there is no accepting physician, the patient must be processed thru ER/ ED for admission. Even labor patients without a doc or admission plan must be processed this way. This is a requirement of the federal EMTALA (Emergency Treatment and Active Labor Act) law.

http://emtala.com/

http://en.wikipedia.org/wiki/Emergency_Medical_Treatment_and_Active_Labor_Act

B) Justina arrived at Boston Children’s Hospital by ambulance. It was the middle of the night, on a weekend, in a significant snowstorm. Linda Pelletier described the trip as treacherous to the Boston Globe. No doctor in his or her right mind would advise someone to undertake a 100 mile trek under those circumstances. If it were an emergency they would have directed her to the nearest emergency room. If it was not an emergency, they would have advised waiting.

Yes. See above for the link for the anti-dumping law, EMTALA. Hospitals cannot divert patients in need, nor can they do a "wallet biopsy" to see if they can afford care.

3) Current articles and interviews often mention that Justina had the flu and “flu is dangerous to Mito patients”. There is no apparent mention of the flu in either the leaked Metabolism Consult from 2/12/13 or the Boston Globe article. (The interview for the Globe piece took place in April 2013 per Lou Pelletier but it was not published until 12/13.)

The public really is not going to know the complete story for a long time – if ever.

 

[K_Z]

There have been some comments that since JP is not "cured" after her long admission to psych at BCH, that somehow the diagnosis of "somatoform" disorder was a "wrong" diagnosis.

Every health and disease state has a psychological and mental/ emotional component. Somatoform disorder is not generally viewed as "curable". Rather, management of the underlying tendency/ reason to somaticize is the goal for long term treatment. There are LOTS of things that influence how well, or how poorly, someone is managing their tendencies to overly somaticize. Similarly, patients with things like depression, or obsessive compulsive disorders, are not usually declared as "cured", but rather described in terms as to how successfully, or unsuccessfully, the symptoms are managed by various therapies. The goals for therapies are directed at functional capacity-- improving participation in activities of daily life, returning to normal developmental environments, improvement in participation at school, relationships, work, and hobbies, etc. Therapy lays out specific, measureable and quantifiable goals for "improvement" with plans for changes at milestones.

I would not expect anyone with somatoform disorder to be medically declared as "cured". Patterns of improvement, and relapse/ regression, are highly variable from patient to patient.

Somatoform disorder does not preclude one or more underlying medical disorders, but also does not mandate that any recognized medical disorder is necessarily present. Sometimes it is, sometimes not. Regardless of whether JP has any diagnosable medical diseases or conditions, apparently a large number of professionals at a tertiary medical center ALSO feel that she has somatoform disorder. One does not preclude the other.

It seems, IMO, that the exceptional and ongoing resistance of the parents to ANY suggestion that there may be a psych component to JP's health and illness, is the heart of the massive and ongoing disagreement, IMO. As well as their pathologic compulsion to demand, control, and command every aspect JP's health care. I believe that if they had demonstrated any amount of reasonable partnership, participation, and compliance, that JP could have been home more than a year ago. IMO, they are her biggest obstacle to achieving a healthier life, and her biggest obstacle to coming home to her own bed. That is profoundly sad and frustrating.

I know some won't agree with me, and that's ok. I know I'm part of the "evil" medical establishment.

 

[K_Z]

I'll throw in one more thought.

One of the biggest "red flags" for medical child abuse is the aggressive claim by a parent that "only Dr. XYZ knows what's going on with my child". "Only Dr. XYZ can make decisions for my child."

Several of my colleagues are so adamant about this, that when a parent says "you are so wonderful and such a good doctor-- I only want YOU making decisions for my child, and I won't accept anyone else" that they want to immediately sign off the case, permanently.

Medical child abusers doc shop until they find one, or a couple, that have such an enormous ego, they accept the parent's embrace as the "only" doc that can treat their complex child. Ethical docs and providers know that none of us are irreplaceable. There are LOTS of good, competent, and ethical providers out there.

 

[annahanna]

I'll throw in one more thought.

One of the biggest "red flags" for medical child abuse is the aggressive claim by a parent that "only Dr. XYZ knows what's going on with my child". "Only Dr. XYZ can make decisions for my child."

Several of my colleagues are so adamant about this, that when a parent says "you are so wonderful and such a good doctor-- I only want YOU making decisions for my child, and I won't accept anyone else" that they want to immediately sign off the case, permanently.

Medical child abusers doc shop until they find one, or a couple, that have such an enormous ego, they accept the parent's embrace as the "only" doc that can treat their complex child. Ethical docs and providers know that none of us are irreplaceable. There are LOTS of good, competent, and ethical providers out there.

Thank you K_Z - extremely well said.

 

[K_Z]

I re-read my explanation of direct admits, and wanted to explain more about the process when a doc has NOT been a provider for a specific patient in the past.

Let’s say a patient falls and breaks a hip. They are transported by ambulance to the nearest hospital, which might be a smaller community hospital, versus an urban medical center. The ER evaluates and determines they have a hip fracture that needs to be repaired fairly soon (urgent, but not life-threatening, drop dead emergency). The ER docs at Hospital A know that they don’t have in-person on call orthopedics coverage at the moment, but do have phone consult availability. They contact Ortho Doc A, to transmit diagnostic studies electronically, and discuss the case, to determine if Hospital A can do the surgical procedure, and when.

Ortho Doc A recommends transfer to another hospital, because he is leaving on vacation in a couple hours. Furthermore, the specific components needed to repair the hip are depleted and back ordered, so the covering orthopedic service for Hospital A probably can’t do the surgery either. Ortho Doc A and the ER doc decide who will contact Hospital B to find an accepting physician. Ortho Doc A is determined to be the one to find the accepting doc. Ortho Doc A calls Hospital B, and asks for the name and number of who is on call for orthopedics. They connect, and decide if the patient can be transferred to Hospital B, and when, as a direct admit for surgery to fix the broken hip. Ortho Doc B assumes responsibility to coordinate the admission to Hospital B, while Ortho Doc A calls the ER doc back at Hospital A to arrange the transfer at a mutually convenient time. The patient might go directly to preop at transfer, or might be admitted to a unit/ floor awaiting surgery. Unless the patient had medical problems during transfer, the patient would likely avoid the ER process all together.

Neither Ortho Doc A or Ortho Doc B ever saw or treated this patient previously, but the care transfer was coordinated between 2 hospitals and at least 3 docs, for a direct admit to either preop, or a care unit.

If a hospital puts a patient in an ambulance to another hospital WITHOUT an accepting physician, the hospital is liable for a HUGE fine under EMTALA. Suffice to say, direct admits by ambulance, and transfers by ambulance are documented and scrutinized VERY carefully, so as to avoid any EMTALA violations and fines. I can't say it enough-- EMTALA is huge.

The parents' stories, in this particular case, just are just not at all believable to anyone who understands how hospitals function. They may have chosen to bring her to another hospital, with the goal or recommendation of seeing a specific doc. But in no way were they "forced", or made to travel thru a snowstorm to seek care (for the flu) at another facility for their daughter. That is preposterous. IMO.

http://www.medlaw.com/healthlaw/EMTALA/other/oig-list-of-emtala-fines-.shtml

http://www.acep.org/Content.aspx?id=25936

Congress in 2000 made EMTALA enforcement a priority, with penalties more than $1.17 million, nearly as much as in the first 10 years (about $1.8 million) of the statute combined (U.S. Department of Health and Human Services' Office of Inspector General [OIG]). Between October 1, 2005, and March 31, 2006, $345,000 in fines were collected from 12 hospitals and one physician.

 

[annahanna]

I'm holding my breath hoping Lou & Linda can maintain....


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According to this report on the most recent protest for Justina, the parents have a meeting with DCF and the doctors from Tufts this coming Friday. I too hope they can keep their cools and the meeting goes well for justina's sake.
http://www.myfoxboston.com/story/25605854/hundreds-gather-to-protest-for-justina-pelletier

This is a video from the recent Free Justina rally: http://youtu.be/T4700TcGRqE It is long but the speech by Lou is a little less then half-way through.

I was hoping that both parents would tone down the rhetoric and hysteria and attempt to understand Justina's diagnosis so that they could bring her home. From the looks of this video, perhaps Lou is not quite ready yet.

 

[Linda7NJ]

This is a video from the recent Free Justina rally: http://youtu.be/T4700TcGRqE It is long but the speech by Lou is a little less then half-way through.



I was hoping that both parents would tone down the rhetoric and hysteria and attempt to understand Justina's diagnosis so that they could bring her home. From the looks of this video, perhaps Lou is not quite ready yet.

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[i.b.nora]

That free justina rally video is very distasteful, imo.

 

[jjenny]

This is a video from the recent Free Justina rally: http://youtu.be/T4700TcGRqE It is long but the speech by Lou is a little less then half-way through.

I was hoping that both parents would tone down the rhetoric and hysteria and attempt to understand Justina's diagnosis so that they could bring her home. From the looks of this video, perhaps Lou is not quite ready yet.

Maybe the doctors should attempt to understand her diagnosis first, don't you think?
And if she is back with Dr. Korson, I very much doubt he is diagnosing her with somatoform.
So what is her diagnosis, exactly?

 

[jjenny]

I'll throw in one more thought.

One of the biggest "red flags" for medical child abuse is the aggressive claim by a parent that "only Dr. XYZ knows what's going on with my child". "Only Dr. XYZ can make decisions for my child."

Several of my colleagues are so adamant about this, that when a parent says "you are so wonderful and such a good doctor-- I only want YOU making decisions for my child, and I won't accept anyone else" that they want to immediately sign off the case, permanently.

Medical child abusers doc shop until they find one, or a couple, that have such an enormous ego, they accept the parent's embrace as the "only" doc that can treat their complex child. Ethical docs and providers know that none of us are irreplaceable. There are LOTS of good, competent, and ethical providers out there.

So some of the doctors you know want to sign off because the parents trust him or her?
I guess the trust is really misplaced then.

 

[Linda7NJ]

This is a video from the recent Free Justina rally: http://youtu.be/T4700TcGRqE It is long but the speech by Lou is a little less then half-way through.



I was hoping that both parents would tone down the rhetoric and hysteria and attempt to understand Justina's diagnosis so that they could bring her home. From the looks of this video, perhaps Lou is not quite ready yet.

Just finished watching Lou's rant. Wow, just wow.
I'm not shocked or surprised ...just saddened he is still incapable of putting his daughters needs first.
IMO


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[Gardenlady]

I told ya, he's gonna run for office lol! It's not about his daughter now, even if it once was. He's gonna ride his hobby horse to the local elections! :crazy:


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[CathyinTexas]

I'll throw in one more thought.

One of the biggest "red flags" for medical child abuse is the aggressive claim by a parent that "only Dr. XYZ knows what's going on with my child". "Only Dr. XYZ can make decisions for my child."

Several of my colleagues are so adamant about this, that when a parent says "you are so wonderful and such a good doctor-- I only want YOU making decisions for my child, and I won't accept anyone else" that they want to immediately sign off the case, permanently.

Medical child abusers doc shop until they find one, or a couple, that have such an enormous ego, they accept the parent's embrace as the "only" doc that can treat their complex child. Ethical docs and providers know that none of us are irreplaceable. There are LOTS of good, competent, and ethical providers out there.

I read through this thread and see some good points made. The implication in some of the statements though is that the doctors want to CYA, so much so that even if parents respect them and listen to them, they want to opt out. That doesn't sit right with me. I can't see that any ambulance would transport a patient from one state to another in the middle of snowstorm without medical authority directing them to do so. It is preposterous to think parents could call an ambulance to do that. I agree that Lou and Linda may have assumed or were mistaken that she would be a direct admit to the GI floor. It is also possible that the conservation with Dr. Korson led them to believe that for some reason. What is obvious is they were very loving parents willing to do that for their daughter.

 

[Donjeta]

FWIW, I didn't get the impression that the reason for those doctors wanting to sign out is that the parents trust and respect them, rather that the doctors see warning signs that the parents are doctor shopping and trying to manipulate the Chosen One.

Trusting and listening to your children's doctor is the usual desirable state I think, the problem is more that they reject everybody else's opinions out of hand, however well founded they might be. It's not really normal to imply that there is only one competent doctor in this world and it may be a sign that this is the only doctor out of many who said what the parents want to hear and didn't tell them any unpleasant truths they need to hear, or that the parents think that they'll be able to hoodwink this doctor for one reason or another.

 

[CathyinTexas]

Just finished watching Lou's rant. Wow, just wow.
I'm not shocked or surprised ...just saddened he is still incapable of putting his daughters needs first.
IMO


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This has become a polarized case to the extreme. The news reported hundreds but there were 2000 plus there. It is clear from the numbers that many see it as Lou does and want to do see changes made so it can't happen to other families. He is being encouraged to act as he does by others who see parents rights eroding. The Pelletiers had a right to take Justina to another facility. It made sense to take her back to Tufts where she was treated before BCH. Their critics seem to refuse to see that a psychologist and psychiatrist who instigated the involvement of DCF were both invested in the Somatoform disorder by peer reviewed studies, authoring text books and receiving grant money for the disorder studies which clearly is a conflict of interest, and a motive to do what they did. There is no defense or excuse for the treatment of Justina from that time forward in my opinion.

 

[CathyinTexas]

I told ya, he's gonna run for office lol! It's not about his daughter now, even if it once was. He's gonna ride his hobby horse to the local elections! :crazy:


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He did state in an interview hundreds of parents have contacted him about their child being taken in the same way, and he does see this as a mission for him in the future. Helping others. Righting wrongs. His reasons for being coming a politician are just.