Is removing all meds a common hospital experience, or does this hospital have issues

[DebJ]

11. Thank you for all the support. Here is an update, and some lessons learned.

As of yesterday afternoon, Sunday, 72 hours after going to the ER, my son finally got all of his medications and in the proper doses. I'm sure it will take awhile to get his blood levels of the meds up to par. But he had some almost immediate relief when he got the ADHD meds; he said it was very difficult for him to think and speak coherently without them because his mind kept darting about (and the Celexa was promoting that too, I have zero doubt.)

The 'lessons learned' that I refer to include everyone in this stressful process.

I had called all three shifts of nurses and explained about the Celexa/SSRI's and my son. Here's my gripe: I was promised he would NOT be given another dose of Celexa without reaffirmation from the doctor that this was what was to be done; the doctor was scheduled to come in at noon. The night nurse was going to put notes on his med card and his files to not give him the Celexa. Nope. First thing Sunday, he got a second dose. I was infuriated when I found this out at 11 am, and rushed immediately to take the 90 minute drive there for visiting hours. This was explained to me in the discussion below, but what gripes me is being lied to, instead of telling me the actual procedure for doing things. You feel like your loved one is being held prisoner in a place that can do whatever they like, will tell you and him nothing, and then just say whatever to get you off the phone. It is an incredibly stressful time. You hope that when they go in, they will be taken care of and safe, and then are left feeling like "I am a mushroom, kept in the dark and fed b.s.", and left fearful as to outcomes. The hospital could greatly improve upon this practice while still being well within HIPPA guidelines, etc. If I was a few minutes from the hospital, then I could be there in person daily. But I'm not, I'm 90 minutes away in a good drive, and due to a storm and accidents, it took me 3 hours to get there Thursday. Three completely stressed hours.


My son, his girlfriend, and I spoke with his day nurse for about a full hour in the common area during visiting hours, and here is what came out of this discussion:
1. My son, having been in the hospital four times now, is terrified to NOT do whatever the doctor tells him to do, even when he knows wrong choices are being made. He takes the approach that he will do whatever they say, hold on however he can, so he can get out of there and back to his regular doctor who actually knows him, will listen to him, and can actually help. He might question a medication choice made by the doctor in the hospital, but then of course the doctor always continues to push his choice, so my son clams up, gives up, and just wants to get out of there so he can actually get the help he needs. The psych doctors are only available for the briefest of moments, and they barely say two sentences. This discourages my son from trusting them even more.

2.The nurse said any patient (adult anyway) has a right now to refuse any medication. My son said, yes, and then I'm noted as uncooperative and you will keep me here. You won't tell me that, but that will happen.The nurse was gently explaining many times this wasn't the case.

3. My son's girl friend actually helped to get this issue resolved. She asked my son "What is it that you want the doctor to do, what would be your own plan for yourself?" My son explained, but still kept saying this doctor was not going to listen to him, while the nurse insisted he would. And the Celexa was also causing him to have severe memory issues. He could not remember what he ate for lunch or for dinner 10 minutes after eating it, whereas he usually is griping profusely about both portion size and content. I suggested to my son that he write his requests down, and that way he could just hand the paper to the doctor and not have to battle (while unstable) with trying to have a conversation with a doctor that he didn't believe would listen to him. So, he did that: drop the Celexa/SSRI, increase his trileptal (nurse suggested also the possibility of changing dose times over the course of the day), increase his ADHD meds, and maybe look at an alternative to klonazepam for anxiety. My son has read that you can become dependent on klonazepam, and so was not taking it until he was way past the point of needing it. My son has regained 70 lbs since his meds were last adjusted...something I had the nurse tell the doctor...why add a new med, with the chances it won't work, or will be worse, etc., instead of just tweaking up? But I don't know as yet the results of this effort that should happen sometime today. I am concerned for reasons stated below as to whether they will actually remove the Celexa:

4. Further complicating matters was the fact that since my son had been put into a more manic state, beginning to slip into hypomanic, by not having his regular meds PLUS having the Celexa.... happy mania feels really good. That's one reason, I have read, that people with bipolar choose to go off their meds at times. Because happy mania feels really good. King of the World. So he thought what the heck I'll take it. He said it just made him feel happy and silly...and yes, that was his first reactions before....then the happy mania suddenly turns into angry, dangerous mania, with no warning at all. But all he knew, was "I feel GREAT" and "if I don't do whatever this doctor says, they will keep me here". This is why he was laughing, literally maniacally, when his stunned and frightened girl friend of 1.5 years visited him there. So what happened Sunday morning, after all my calls, was the nurse said to my son, "Here is your Celexa", and since he didn't decline it, he got it. As an adult, his choices overrode his prior medical history of horrific reactions to SSRIs....and my son was in no position to remember his previous horrible medical history with SSRI's. In fact, he didn't even recall, in his current state, what an SSRI was, though we had discussed this many times over the years. We still don't know, and likely never will, why the hospital doctor would choose to ignore prior history that was brought to his attention...or if he even bothered to take a minute and actually thing about it. All we know is that the doc made no changes to the meds...but then, there wasn't any hurry to even get him any meds at all in the first place... There is zero communication except through the nurses, and they won't say anything except whether a med change was ordered, or not. So you never do know what the doctor is thinking, or why, or what his reasoning is. He is just supposed to be an Invisible and Powerful God.

Research now has begun to indicate that incidents of hypomania might cause permanent change/damage in the brain, increasing both the likelihood of future hypomanic events AND their severity....and then of course, each of those future events having similar impact...

5. My son had brought his med strips to the hospital, but not his prescription bottles. My son, in his state of mind, could not recall himself the dosage of his trileptal. So even when they finally gave him some, it was for 1/3 the dose he was supposed to be taking. I don't think that was discovered until I was reviewing his meds with the nurse, and she kept repeating the wrong dose back to me. His girl friend brought the med bottles in Sunday after this was discovered. She tried to bring them in Saturday evening, but they refused to take them.

I am thinking he needs to take photos of his med bottles so he has them on his camera and can show them to the hospital on his arrival.
And a current medication card in his wallet at all times. He doesn't change meds all that often now so this won't be such a nightmare to keep current. But it amazes me that the hospital couldn't call the doctor down the street on Friday during business hours and get that information as well. Poor performance by everyone at work here...and that is dangerous.

So:
1. My son needs a medication card in his wallet at all times that not only indicates current meds, and his doctor's name and contact number (not that the hospital will make any attempt to contact that doctor unless my son insists), but also, to list contraindicated medications like the SSRI's. Because when he is in bad shape, he can't remember. And when they remove all his meds like that, he can't remember even more...... Some day I'm not going to be here to advocate for him, and only if he is blessed and lucky will there be a girl friend or wife to substitute. He needs the card, and needs to work to retain the presence of mind to retain that card...since the hospital, in spite of his visits there a number of times in recent years, can't be relied upon to review his actual records, and they do not HAVE, clearly, access to his records that predate the time he first moved to this city. Nor do they attempt to contact his current doctor.

2. The hospital simply will not ever stock his ADHD med, which also treats his high BP (guafacin). This needs to be pointed out on that med card so that immediate actions can be taken to procure this for him upon his arrival at the hospital, before he even gets upstairs, instead of beginning some 24 hours or more later, where they get around to asking the pharmacy for it, then the pharmacy quite some delayed time later (can be as much as 24 hours), says we do not stock that and cannot get it. Then eventually someone gets around to telling my son that, and issues an exception where his own meds can be brought in and used as long as they are in the original bottle. This whole process takes days. I am hoping the crisis nurse in the ER, if made aware of this boldly and up front, can start this procedure upon his arrival. Actually, why isn't this done with all patients upon their arrival in ER, once the determination is made/papers signed that he will be admitted and taken upstairs? Why the delay? This is something that should be brought to the attention of hospital administration. Perhaps in little bureaucratic minds, the thought process is: well, we have to wait until the doctor looks at the patient and decides what to do. This, to me, goes against "Do No Harm". Abrupt withdrawal from some of these drugs can be deadly. To instead continue for 24 hours or so to implement the same drug routine as previously prescribed by other doctors certainly could not result in lawsuits, would certainly be deemed reasonable and good practice standards. It's not like someone is bleeding out so a decision is made to withdraw a blood-thinning med. There is NO decision being made at these times. They just aren't ready to take care of what the patient needs.It's just luck of the draw, whether the hospital pharmacy carries that patient's meds or not. I can understand the logistical impossibility of carrying every possible med, but the means by which they handle this is not good medicine, IMHO. I'd at the minimum like a good explanation as to why it IS good medicine, if they will bother to answer my complaint. But I doubt it. The entire hospital system, in my experience, is closed-door closed-mouth Omnipotent Invisible Gods.

3. Nurses on the phone, when speaking to someone like me who has been granted access to information about my son's care, need to tell me what is really going on, instead of making false promises.

4. It would be nice if there could actually be some form of actual communication from my son's doctor, instead of the Invisible God game, but of course that isn't going to happen.