Friday, April 16, 2010

Conversations with a Doctor

Last November I shared with you some of the emails exchanged between myself and Jack's doctors over the years.  As the years progressed, much of my cyber-discussions with Jack's doctors went beyond discussions just about Jack's condition.  Several of Jack's doctors and I have had some engaging conversations and I have been the fortunate recipient of their insight and words of wisdom on many different topics.  As I've said before, I would love to take the hundreds of emails and turn them into a book.  I find them very interesting, although I'm not sure anyone else does.  But, in the event you do find them interesting ... here are a few of my conversations with a doctor.


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Ann,

I’m glad that Jack is behaving.  And talking to the family that A connected you with – wow – that is intense. It is one thing to reach the point where – had you known then what you know now – you might have reached a different decision, and quite another to actually regret the decision or resent yourself or other for it. As a physician, I would still err on the side of recommending supportive care when the diagnosis is unknown (of course that is a bit of a generalization).  Had we known then what we know now about Jack’s diagnosis, the recommendations might have also been different.

It never really balances out, but I have seen what appear to be hopeless situations – child comatose with some unknown neurologic disease stuck on a ventilator for weeks – where we actually did counsel limiting support. Parents have other insights, support the child and now he/she is awake, playing, talking, weaning off the vent. As I said, when the diagnosis is uncertain, so obviously is the prognosis.

Nonetheless, I empathize with how you must have felt (Note “empathize” not “understand” as in fully appreciate … not “being there” myself – I always am skeptical when I hear doctors and nurses telling families they “understand” what they are going through … not right in my mind.)



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 –  just to clarify, I resent no one for how things turned out for us. I get that we were all dealing with the unknown. It is what it is, but conversations like I had last March do bring up a lot of emotions.  I will never understand why we got picked to be on this side of the journey – but, for the most part, I’m through being pissed off all the time because of it. I appreciate that you get it.

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Ann,

Understood.

There’s a scene in the movie “Defiance”.  It’s about these brothers who keep a group of Jews alive in the forest of Belarus and away from the Nazi’s during WWII.  There is one scene at a funeral in the forest, where the man leading the prayer says, in effect, we’re tired of being the “chosen” people; “choose someone else”.

I think the way you phrase it: “why we got picked” is very well spoken.

Take care,


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A friend of mine has a child currently in the PICU at SLCH – she is a lung transplant kid.  According to my friend, the docs are really pushing to get her child out of the PICU – to the point (according to the mom) of wanting to rush her off the vent to get her out.

As you know, I too felt rushed out of the PICU this summer after Jack’s spinal fusion surgery.

My question for you – is this trend to push kids out of the PICU driven by the doctors or the insurance companies.  I know that most docs will pick the best interest of the child over the insurance companies.  I was just wondering what kind of pressure you get – if any – from insurance companies.  I wonder what would happen today if Jack was in the PICU and I refused to consent to a trach for as many months as I did (after the subject was brought up). I remember Dr. F telling me that if Jack was an adult in the ICU he would have a trach by now – he said tops, one week in the ICU and adults are trached and moved out.  I’m not sure how someone can be forced to consent to a trach.

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Ann

Maybe twice in my career have I ever had an insurance company call me and ask for justification for the care I was providing to a patient in the ICU. Usually this is because the child is at an out-of-network facility and they want to know when the patient is stable enough for transfer to the approved facility.

In other words, insurance and money in general has nothing to do with the decision to keep a patient in the ICU. The pressure physicians feel to “move patients along” is to make room for new patients and the principle, in general, that we try to use limited resources (like ICU beds) wisely. Finally, there is the general feeling that ICU’s are dangerous places and the sooner the patent can leave, the better! That is honestly all there is to it.

Of course, there are always those difficult to deal with parents that we want to get rid of … (I am SO kidding … )

With regard to forcing people into decision like the trach – of course you cannot be forced to agreeing to a procedure or any therapy for that matter.  But there are often “clearly in the best interests of the patient” (or so the docs firmly believe) interventions that docs can be rather aggressive in pushing for.  In that case, no doubt some families feel “forced” or “rushed”.  Sometimes families and physicians come to realizations about the timing of things at, well, different times.  Wise physicians should recognize this and try hard not to come across too forceful.  Not all physicians are wise.



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Just wanted to give you a short Jack update. Jack continues to do well.  Amazingly, for being flat on his back for 2 months, he’s not having any respiratory problems and is satting 100% consistently.  He probably could stand to have his vent setting lowered, but I doubt it really matters at this point whether he is on a rate of 10 or 14. Although, even all these years, I find it difficult to get out of the “need to wean” mode.  He really needs a sleep study to determine if he is being properly ventilated.  I saw that CH has a home ventilator program – we may be looking into that. Then again, does it really matter if he is over-ventilated?

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Ann,

No it does not matter if he’s a little overventilated.  CH has a big home ventilator program.  Let me know and I will make the appropriate contacts in advance.



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I only wish I had waited and had you find us a spine surgeon there too.  I’ll be kicking myself to the grave on that one. 

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Ann,

Don’t even let me hear you talk that way. You have always made the right decisions for Jack.  Using the “retrospectoscope” (an official medical term) is a useless venture. Last I checked, none of us had the ability to see into the future.  Had you waited and brought Jack here, something else might have happened, either in waiting or by coming here.

After all these years, you should have learned that your judgment is not in question.



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As I think you are aware, we are still here. I’m flying home today for a few days and Mark is taking over for awhile.  It is very difficult for me to leave Jack, but I need a break and I think the people here need a break from me. I’m so angry right now that I can’t be nice .  Btw, I’ve been keeping a chronicle of the last three weeks on a blog I set up for Jack.  If you have some time, take a look – but, I’ll warn you, I’m very honest about my feeling towards the medical people managing Jack right now.

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Ann

You are quite an honest person and I think it is a very healthy thing to realize that at this moment you can not change what is happening to Jack.  You can however make a tremendous difference to your other children and your work by using all of the other gifts you have been given.  You can use this very unpleasant time to teach your children that doctors – the best and the worst – do not ultimately control very much … oddly, even the worst doctor might be doing her best.  My only small bit of advice … do something really fun with your other children. 

I will definitely look in on your little fella. It is a good idea to get away, you will be much better able to help Jack. Have a safe trip and I’ll see you when you return.

-A

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Copyright Ann F. Schrooten 2010 All rights reserved.


7 comments:

worthy said...

Thanks for sharing that Ann, he /she sounds like a great doctor!

Heather said...

As a nurse, I see both sides of the medial equation. As a mom, my heart aches.

I am jealous a bit that you have a doctor with whom you can be that candid. Most of the time, I just want to slap my Jack's doctors!

Cindy said...

"I will never understand why we got picked to be on this side of the journey."
Easy to understand when you realize that there is nothing supernatural involved in this journey or any other.

Ann said...

Ahh, but I respectfully disagree with you Cindy! :)

Ann said...

Heather, I'm very fortunate to have the rapport I have with several of Jack's doctors -- most of whom are no longer involved in his care, which is why, I believe, we can have the conversations we have.

Susan said...

Thanks for sharing those. I did actually find that interesting.

Katie said...

Wow-I think that is fabulous. I enjoyed reading them. What a great relationship you have with this doctor. THanks