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

[liljim]

This is great example of how far some people will go to argue and not make any effort to honestly understand the issues;

When an appropriate facility is found close to her home the father threatens the facility preemptively that if they take her he will sue them. The facility then refuses to accept Justina solely because of the father's actions.

Later the father realizes that this place is probably a good fit and would meet a lot of his demands, but the facility is rightfully concerned and still will not accept her as a patient.

And you have people that have so blindly picked a side in this case that they cannot even acknowledge that the father did not serve his daughter's interests very well with his actions in this situation.

 

[Linda7NJ]

This is great example of how far some people will go to argue and not make any effort to honestly understand the issues;

When an appropriate facility is found close to her home the father threatens the facility preemptively that if they take her he will sue them. The facility then refuses to accept Justina solely because of the father's actions.

Later the father realizes that this place is probably a good fit and would meet a lot of his demands, but the facility is rightfully concerned and still will not accept her as a patient.

And you have people that have so blindly picked a side in this case that they cannot even acknowledge that the father did not serve his daughter's interests very well with his actions in this situation.

I actually started on the other side at the very beginning , as the evidence trickled in, I hopped on the fence. It quickly became painfully obvious the parents were running their own agenda ...at the expense of their daughter. Her best interest is not their priority.
All IMO


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[sweetmom]

As I have said before, there really is a great book waiting to be written about this story. Medical issues, parenting issues, political issues, journalism issues, role of the internet, inability of one side to persuade the other...it's got them all. Wish I had the energy to do it....but no.

But I really do appreciate the time and concern all the posters here are putting in, even the ones I vehemently disagree with. Thank you all.

I had gone back to earlier posts and realized that Linda7NJ had really evolved from supporter to doubter, so she is the exception to the "I will not change my mind no matter what rule."

 

[annahanna]

...it seemed quite clear to me that it must have been an ED to ED transfer.

You do realize that this was not a hospital to hospital transfer at all? Justina was brought from her home in CT (100 miles in the middle of the night, on a weekend, during a snowstorm) to Boston Children's Hospital.

It is unclear if she truly had the flu as in Influenza A/B or this was just some semantic slippage and she had some other viral syndrome.

She may of may not have had any sort of viral syndrome. The parents never mentioned it in the earliest newspaper articles and it was not listed in the (partial) clinical note obtained by FOX CT News back in December. (In fact, the mother described symptoms going back between 6-8 weeks and 4 months.) It was not until the later interviews and articles that the parents began to mention the flu.

 

[Karmady]

I do agree that it can be a red flag but how much of one it is depends a bit on context. We see this at our hospital sometimes with a lot of our ED physicians who just really aren't super comfortable with kids in general and kids with complex medical issues specifically so pediatricians do a lot of ED consultation and even a fair amount ED resuscitation and I think parents just kind of adapt to the culture and don't hesitate to push the ED physicians to contact their child's pediatrician or the on call pediatrician if things aren't going well. So the mom who wants some PCP communication before her kid gets discharged home from the ED with DKA may just be concerned and advocating for her child. When she posts on Facebook that Dr. X is the best doctor she may really just be being appreciative. I think the line crossing is when mom can't be just as appreciative and able to work with Dr. X's partner Dr. Y if he/she is on call when her kids has their crisis or Dr. Z if Dr. X feels the need to consult someone else.

I do agree that physician ego plays a role in some of this, can set up some pretty dysfunctional physician-patient relationships, and can miss medical child abuse. I also think that a lot of the misuse of patient (or parent) satisfaction with care as a proxy for quality of care can play into this as well. Hospital reimbursement is tied to satisfaction so I think physicians are often under a lot of pressure to satisfy and may get stuck in a place where they end up sacrificing their clinical judgement in the process. My husband and I always strive to do what we truly believe is in the patient's best interest, respect patient's and parent's rights to make medical decisions, and stand strong against demands that deviate from the standard of care, accepted patient safety standards, and our own state laws (or all three at once).

~bbm

I have had experiences with this. Most recently I got a huge "satisfaction" survey after a trip to the ER for my dd. Previously, I've gotten profuse thanks from an ER doc when they learned I'd rather my son not leave the ER with a handful of unnecessary prescriptions. It's truly scary to me that docs are being evaluated by the "satisfaction" of their patients and that some of them are acting accordingly. wow...

 

[sweetmom]

You do realize that this was not a hospital to hospital transfer at all? Justina was brought from her home in CT (100 miles in the middle of the night, on a weekend, during a snowstorm) to Boston Children's Hospital.

She may of may not have had any sort of viral syndrome. The parents never mentioned it in the earliest newspaper articles and it was not listed in the (partial) clinical note obtained by FOX CT News back in December. (In fact, the mother described symptoms going back between 6-8 weeks and 4 months.) It was not until the later interviews and articles that the parents began to mention the flu.

And that is why I fault the media for largely being either gullible or lazy enough to accept the family's assertion that Justina had the flu, which got repeated again and again and so was magnified in the public mind.

If people understood that Justina was quite ill while under mito care (so it was not helping her much if at all) perhaps they would see that in fact she really is doing better now, as shown by not needing to be hospitalized for the past year. She only remained at BCH for so long because no place could be found that would admit her, mostly due to her parents' threats to sue.

Poor Justina. She deserves better.

 

[annahanna]

Poor Justina. She deserves better.

Yes she does. I pray that this will somehow come to a positive resolution for justina.

 

[K_Z]

You do realize that this was not a hospital to hospital transfer at all? Justina was brought from her home in CT (100 miles in the middle of the night, on a weekend, during a snowstorm) to Boston Children's Hospital.

She may of may not have had any sort of viral syndrome. The parents never mentioned it in the earliest newspaper articles and it was not listed in the (partial) clinical note obtained by FOX CT News back in December. (In fact, the mother described symptoms going back between 6-8 weeks and 4 months.) It was not until the later interviews and articles that the parents began to mention the flu.

BBM.

Wow! I've only recently begun to follow this closely. I had no idea Justina went directly from her home to BCH. I also thought she went by ambulance from Tufts ED to BCH.

That lends a NEW perspective on things. EMTALA was never an issue at all, then. She was discharged from Tufts ED to home. So, it does seem more probable that a private ambulance was hired, since an emergency 911 call would have landed them back at Tufts, or whichever hospital was closest to their home in CT.

My observation is that Dr Flores, the GI doc at BCH, certainly never acted as if he knew Justina was coming as a "direct admit" (Lou's words). As I posted previously, if a doc with admitting privileges is accepting a patient in transfer, OR a direct admit as a referral from another doc, the accepting doc arranges the admission within their facility. They identify the service the pt will be admitted to, who will see the patient as an admission and write initial orders, coordinate with Nursing services to determine which unit will accept the patient, and notify the ED if the pt is coming by ambulance.

It looks more and more to me that the parents arranged transport to BCH on their own, with the idea that they would request Dr. Flores to be her admitting doc when they got there. And when they encountered the necessity of being processed as an ED arrival/ admission, they tried to "control" the admitting process at BCH, demanding Dr. Flores to be called, etc. That's when it all fell apart for the Pelletiers-- when they tried too hard to "control" what happened on arrival in the ED.

What I don't understand is why they never just tried to contact Dr. Flores' on call service in the first place, before they left their home? It sounds like they had not been in touch with Dr. Flores since he left Tufts for BCH. You don't just show up in the middle of the night in a snowstorm, on a weekend, and expect a particular doc (who is not on call) to come in to see you-- that's chutzpah!

This was an elective "parent-request" admission, even if she had some flu-like symptoms, or not. This family has been around the block with hospital admissions many times in the past. Why would they assume they could "demand" elective admission, and a specific doc they hadn't seen for while, when the doc didn't even know they were coming? How could they "not know" they would have to be processed in the ER? Did they really think all they had to do was say "Dr. Flores", and the ED doc would stop doing his job?Scratching my head.

 

[liljim]

KZ im just going on my recollection here but the way i think i heard it told was always that **edit - Korson** advised them to take her to BCH and request to see the GI guy she had worked with before.

no idea if that is accurate, but im pretty sure that was always "the story".

 

[Linda7NJ]

Iirc she also had been signed out AMA from another CT hospital in the early part of February. Triggering a hotline call to CT CPS


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[K_Z]

KZ im just going on my recollection here but the way i think i heard it told was always that Flores advised them to take her to BCH and request to see the GI guy she had worked with before.

no idea if that is accurate, but im pretty sure that was always "the story".

IIRC, Korson is the Metabolic/ Mito doc in CT. Flores is the GI doc who moved from Tufts to BCH.

What I recall--and it may be wrong-- is that Justina was seen in Tufts ED, who consulted by phone with Korson. He recommended that she see her old GI doc at some point. Because she was not transported as a transfer from Tufts to BCH, it could not have been much of a situation requiring hospital to hospital transfer, from the ED provider's medical opinion. He discharged her. And probably with discharge instructions to contact Dr. Flores for follow up, per Korson's opinion.

It seems Justina's parents made the decision on their own, to go track down Dr. Flores in a snowstorm, across state lines, in the middle of the night, on a weekend. IMO, this was not a simple misunderstanding on their part. They intended to "find" Dr. Flores that night. They became very upset when they had to interact with, and accept care from the ED docs at BCH, who they did not want to see. It all escalated from there. That's my take on it.

 

[jjenny]

And that is why I fault the media for largely being either gullible or lazy enough to accept the family's assertion that Justina had the flu, which got repeated again and again and so was magnified in the public mind.

If people understood that Justina was quite ill while under mito care (so it was not helping her much if at all) perhaps they would see that in fact she really is doing better now, as shown by not needing to be hospitalized for the past year. She only remained at BCH for so long because no place could be found that would admit her, mostly due to her parents' threats to sue.

Poor Justina. She deserves better.

How is she doing better? She is in a wheelchair. She could walk and even ice skate some six weeks prior to being admitted to BCH. And before accusing anyone of lying, what proof do you have that she didn't have the flu? If she was quite ill while under mito care, she was also quite ill under somatoform care. Her parents were not making her ill.

 

[jjenny]

KZ im just going on my recollection here but the way i think i heard it told was always that Flores advised them to take her to BCH and request to see the GI guy she had worked with before.

no idea if that is accurate, but im pretty sure that was always "the story".

Dr. Flores was the guy her parents took her to see at BCH.

 

[liljim]

Dr. Flores was the guy her parents took her to see at BCH.

yeah, my original post should have said Korson advised them to go see Flores, got the names screwed up.

 

[annahanna]

...I had no idea Justina went directly from her home to BCH. I also thought she went by ambulance from Tufts ED to BCH.

That lends a NEW perspective on things. EMTALA was never an issue at all, then. She was discharged from Tufts ED to home.

I am not sure that she was at the Tufts ED during this specific illness at all. She was at Connecticut Children's Hospital from 2/4/13 to 2/8/13. Her family contacted Dr Korson's office - apparently on Saturday 2/9/13. According to the Globe article, they got into the ambulance "just after midnight" on Sunday 2/10/13. Lou Pelletier has said that they arrived at 4 AM - which would make sense considering the weather that night.

So, it does seem more probable that a private ambulance was hired, since an emergency 911 call would have landed them back at Tufts, or whichever hospital was closest to their home in CT.

Exactly!

What I don't understand is why they never just tried to contact Dr. Flores' on call service in the first place, before they left their home? It sounds like they had not been in touch with Dr. Flores since he left Tufts for BCH. You don't just show up in the middle of the night in a snowstorm, on a weekend, and expect a particular doc (who is not on call) to come in to see you-- that's chutzpah!

If they had contacted the on-call service - since they were not current active patients - wouldn't they have been advised to take their child to the (nearest) Emergency Room if they were concerned? I have never tried to contact a doctor after hours that we did not have an active current relationship with, but I can't imagine that it would be easy to get a message late on a Saturday night to the physician on call for a former doctor. Am I over-analyzing the on-call service's probable response?

This family has been around the block with hospital admissions many times in the past. Why would they assume they could "demand" elective admission, and a specific doc they hadn't seen for while, when the doc didn't even know they were coming? How could they "not know" they would have to be processed in the ER? Did they really think all they had to do was say "Dr. Flores", and the ED doc would stop doing his job?Scratching my head.

Exactly. The family's story just does not hold together for anyone who has spent any significant time in a hospital - on either side of the stethoscope.

 

[txsvicki]

Did they take Justina across state lines to another hospital because there had been a CPS call in their own state? That's what it sounds like to me.

 

[K_Z]

Another wow-- Justina may not have been seen at Tufts ED the night they decided to go to BCH.

Hmmmm....

Well, anyway, I'm really glad the BCH ED doc was on the ball, saw the oddity of what was going on, and did his job exceptionally well that night assessing the situation. I admire his professionalism for keeping Justina's best interests in the forefront of everything going on. The whole situation clearly raised a lot of red flags right away, and I'm glad the BCH ED followed thru, involving a team of multidisciplinary professionals right away.

I know it may seem strange to some, but I think Justina was actually lucky and fortunate to have landed at BCH when she did. We are not privy to all of the medical details, and all of the details of what led up to the decision for the state to take custody. However, I trust all of the dozens of medical and legal professionals involved that they did, and are doing, what is right and best for Justina. I see no vast conspiracy here. (IMO, JMO, and all that.)

 

[jjenny]

Did they take Justina across state lines to another hospital because there had been a CPS call in their own state? That's what it sounds like to me.

Absolutely not.

 

[jjenny]

Another wow-- Justina may not have been seen at Tufts ED the night they decided to go to BCH.

Hmmmm....

Well, anyway, I'm really glad the BCH ED doc was on the ball, saw the oddity of what was going on, and did his job exceptionally well that night assessing the situation. I admire his professionalism for keeping Justina's best interests in the forefront of everything going on. The whole situation clearly raised a lot of red flags right away, and I'm glad the BCH ED followed thru, involving a team of multidisciplinary professionals right away.

I know it may seem strange to some, but I think Justina was actually lucky and fortunate to have landed at BCH when she did. We are not privy to all of the medical details, and all of the details of what led up to the decision for the state to take custody. However, I trust all of the dozens of medical and legal professionals involved that they did, and are doing, what is right and best for Justina. I see no vast conspiracy here. (IMO, JMO, and all that.)

I feel like it's a parallel universe here. You do understand that her care is back at Tufts?
Not at BCH?
Which really makes no sense if BCH was the one with the correct diagnosis. She has a visit there tomorrow with Dr. Korson. The same doctor that diagnosed her with mitochondrial disease.
In fact, in their reunification plan, DCF insisted that parents have to follow treatment plan at Tufts.
Isn't that the treatment plan parents wanted to follow to begin with?

 

[jaunty-girl]

Absolutely not.

Do you have a source for this assertion?