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

[DebJ]

that I should address in a letter to a number of people in administration? Or to who? I don't even know. It is a non-profit public hospital.

Is it common practice to remove all medications from a patient who enters the Behavioral Health units at hospitals upon their
arrival? This is the third time my son has gone into the hospital in the last three years, and every time he gets zilch meds for
about 48 hours, which further destabilizes him. I called about that today, and I was told "Oh for some reason the medication order didn't make it to the pharmacy until today" He went in Thursday afternoon, and had not been given his trileptal, or his guanfacine (ADHD and high blood pressure) until late Saturday afternoon, nor allowed evem any klonazepam until late Friday evening. when at least they gave him that. (I would have to have klonazepam if I was in there, or I'd have a heart attack myself.) After I got off the phone today, I remembered they gave me the same song and dance last year : "Oops somehow the order for medication didn't go the pharmacy the next morning" . Might have done so the year before, too, a third time for this; but that one I honestly don't remember...it was too traumatic as he had not been in the hospital for 13 years after his first truly hideous and frankly abusive experience at Sheppard Pratt in Baltimore. Is this cirremt hospital incompetent, or lying to me because this is a SOP?

The issue this time is quite serious. After removing all of his meds which have had him really well stable the past year, better than ever, but just a touch of mania that was ramping a bit too high so he checked himself in at his serious girl friend's advice, they have now not only destabilized him, but they gave him an SSRI. I called and spoke to the nurse this morning, who spoke to the doctor, and by 8pm the doc was still working but hadn't filed paperwork to change the meds yet and she didn't know his determination as yet. I told them to watch my son, because he actually could become dangerous. I told her that the hospitals actions could easily trigger severe mania now, and there is a statistical correlation where severe manic attacks are followed by a higher likelihood of more frequent future severe attacks, and MORE severe. I said you may have permanently damaged my son's brain.

IMHO, having lived with this now since he first had behavioral difficulties at age 3 (after a sexual assault), he has two trigger issues right now, stressful situations, and one is to come to a final resolution Monday...but this 'resolution' has been scheduled 6 times in the past year so he's very anxious now...will this be the end, or just another interminable delay? The OCD starts working on his anxiety; he can't take SSRIs for OCD and apparently there still is nothing else for OCD. So the OCD ramps up the anxiety, and the whole ball of wax starts rolling, until medical intervention is needed. But he'd been doing so very well for so long, he was afraid to be honest with his psychiatrist. He was afraid of a med tweak, and finally, after 3 weeks of issues, he decided to check in.

My son has bipolar disorder, ADHD, OCD, and anxiety. The first time was hospitalized he was 17, and it was SSRIs
that did him in. He was on five to seven of them, in sequence (for the OCD), and finally after doing some reading
online written by people with children with bipolar disorder, it came to light that many with BP do worse with the SSRI's.
They send him skyrocketing into mania in very short order (like, 2 days). That entire hospitalization nightmare at Sheppard
Pratt is a whole saga unto itself, but that's not my concern right at the moment.

He didn't need any other hospitalization for 13 years. He had been in the process of getting off Depakote, which added
200 lbs to his 7' frame, and it was rough at times as they kept trying different medications.

Three years ago in April, he had to go to the hospital. They put him on lamictal, which also turned into a bad choice. Fortunately
my son is very good at monitoring his own responses to various meds, and usually with a tip-off from me that he needs a med tweak
he sees his doc and gets it done.

He was on the lamictal for a year and a half, and during that time had another horrible problem in April again with mania, and I had
to call the police for his own safety. He figured out after that, with discussion with his doctor, that he really doesn't suffer from
depression seriously except when he's been given an anti-depressant to quell the mania, and that lamictal was really giving him some serious anger issues (ergo the hospitalization last year). When my son told his regular doctor about the lamictal, his doctor replied, to our shock, yes that doc at the hospital just prescribes that garbage to everyone who comes in. He went on the trileptal last year, and has been doing better than ever in his life (girl friend is a miracle and that helps too). Problem is that he has also had serious weight gain again, maybe due to the trileptal. And so, with that weight gain, they might well need to up his dose of the tripleptal. He's often had to do that with weight gains (and the opposite with losses) over the course of his life. But the hospital shrinks don't ask anything. They just take all his meds out for days and then do whatever they feel like. It is really horrendous, and makes him think many times over before seeking emergency assistance.

So is this SOP, does anyone know, to strip someone of his entire med routine for almost 48 hours? This is barbaric to me.
Appreciate any info I can get. If this is hospital ineptitude, I need to write some letters to a number of people until I get a response. So very many people in that hospital in that city have only a social worker to advocate for them, and the social workers are so overburdened, I don't know how they even remember anyone's names. If my son has experienced this at least twice in the past 16 months, I'm betting other patients have to. Just that no one bothers to speak up for them.

[CaliforniaPeggy]

1. I have no idea, but perhaps you should talk to his doctor.

[DebJ]

2. Hi Peggy. The problem is that in the hospital, 'his' doctor has no say and is never consulted.

I couldn't believe it the first time I found out that's how they do things in (at least some) wards. It's like having an ob/gyn for 9 months who is intimately familiar with a troubled pregnancy. You go into labor, and your ob/gyn isn't there. You pass on to the ob/gyn at your side the information about your pregnancy, and she says "Oh, no, that isn't relevant at all, anything that doctor said. We are going to start from scratch."

I did just call the nurse on the ward again...so i spoke to a nurse on every shift today. I mentioned that they always strip him of all of his meds and make him worse, and always say this is because for some reason the doctors orders were not sent to the pharmacy, and I want to insure that never happens again.

She told me to start notifying the hospital at admissions, and to keep calling the ward until there is no doubt everyone has the info and is applying that.

She also told me she is marking all of his records right now to NOT give him another dose in the morning, which is what was keeping me from sleeping tonight. (It's 1:36 am here). So, now I can sleep.

I told her that if he gets a second dose of Celexa, they may find they have 7' of dangerous man, 400 lbs of him, on their hands, and that he could smile one minute and then in 15 seconds ramp from zero to 200. That is very true... I saw that happen with him on Prozac... the worst of all the SSRI's he took, and I believe every news story I've ever read about Prozac... and so I think for their OWN safety no one is going to be in a hurry to give him that in the morning.

He was so out of it this evening that he didn't know what he had had for dinner he had just finished eating 10 minutes before, and that has never, ever happened to him, ever, not in decades of battling this issue. His girlfriend said he just looked totally insane, and he's not been that way...except for SSRI's...and they stripped him of his mood stabilizer that had been so very effective for so long.

But the nurse told me there are no med changes filed by the doctor after he got my message today. When I called at 8pm, the afternoon nurse told me she had advised the doctor of this, but he had been doing rounds and was only just then doing his paperwork. But it is 1:40 am, and nothing. He did NOTHING. I guess I'm driving to Maryland tomorrow.

[CaliforniaPeggy]

3. I am so sorry to hear this. What a mess.

I hope they will listen to you now.

[steve2470]

4. No, this is a very one-off experience

I worked in mental health for 20 years and worked closely with inpatient units during that time. The ONLY time I ever saw medications withdrawn was when a female patient was pregnant, and that was done with great trepidation, weighing the benefits and costs carefully.

Now, if the inpatient psychiatrist is going to start him on a radically different regimen that requires a washout period of his psychotropic meds, then you might see 48 hours without meds, but I never saw that done. To deprive a patient of his medications for 48 hours, unless it's medically necessary and pursuant to a rational plan, is really medical malpractice. Especially if the medications for his high blood pressure were denied.

First, I'd write a letter to the hospital administrator explaining, as briefly as you can, what happened with the denial of medications. Give dates and names of doctors. Don't issue any threats to sue them or go to the state licensing board (you can always do that later on if you wish), or you will get a highly defensive, well-couched response in legalese. You might still get a poor response. Doctors are more or less God in the medical profession, and the hospital will be loathe to piss them off.

If this hospital is your only practical choice, I feel for you. It might be sufficient just to raise awareness with the hospital administrator that things are going badly. If they are intelligent, they don't want to get sued or have you go to the state. They will probably have a talk with the relevant doctors and get to the bottom of it. You will never know what was said or the final outcome. As long as your son gets proper treatment in the future, that's really the most important point.

Best wishes to you and your son.

[DebJ]

8. thank you so much steve

I'm not one for lawsuits, and have no money, anyway. Your advice makes me feel better.

But the biggest thing that always has to be kept in mind is that my son will be dependent on this same hospital for care in the future.

[DebJ]

13. Steve, I'm going to contact hospital admin regarding what I wrote

in my update below, particularly as regards the medicines they don't stock.

And ask them about means they have to determine my son's current meds, in the case he arrives one day in the ER
incapable of communicating this information himself. In other words, can't you call his doctor of record? He is in
a special program in his city, well known there, where all patients are using a very small pool of doctors, so even if
he couldn't give them his own doctor's name, they could look at his prior record, see the notation of that program,
and call the doctor of record when that doctor's office opens.

[steve2470]

14. sounds good

Also, if at all humanly possible, if your son can have the actual pill bottles on his person when he checks in, that would help. I realize many times that is not possible, but if he has the actual pill bottles, that would be perfect.

Again, best wishes to you and your son!

[Tobin S.]

5. That's not been my experience.

I've been hospitalized three times and I went in through the emergency room all three times. They actually gave me something while I was still in the emergency room, and I was started on meds the next day.

I have a similar problem as your son. My main issue is acute mania. I do take a light dose of lithium, but the medication that has helped me the most is ziprasidone. It is often used to treat acute mania. I have been on those meds for over twelve years now and I have not been hospitalized in that time.

[elleng]

6. Sounds like malpractice to me,

confirmed after reading steve and tobin's posts.

[mopinko]

7. sounds extremely dangerous to me. and as others have said- malpractice.

srsly, they cant get meds from the pharmacy for TWO DAYS? gotta call bs on that. usually the sort of thing a phone call from a pissed off doctor would cure in 5 minutes.

is this unit part of a regular hospital, or is it freestanding? imagine if the medical wards worked like this? they'd be dropping like flies.

assume massive stupidity at work, but gotta wonder. maybe this leads to longer stays=more money.

you are a warrior mom. never stop.

[DebJ]

12. Thanks mopinko. Yep, warrior mom. Someone has to be, because people needing this type

of care are not infrequently unable to speak for themselves.

[Peace Seeker]

9. The hospital took my psych meds

It's hard to recover in the hospital. I am in a hospital for non psych issues and the nurse hasn't even heard lamictil. It's so wrong to take meds away . And then wonder why I am 'acting out' . You and your son are in my thoughts.

- Annette

[DebJ]

10. Same for you Annette.

[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.

[mopinko]

15. on my phone. will write more later, but

sue.

[mopinko]

16. your posts sounds like something from 100 years ago.

i am very spoiled about such things as i live in a big city where people have choices, and also get almost all my medical care through a good university health system. they were all electronic long ago. having to remember drugs and doses is a thing of the past. it is all there in my records for any doc in the system. these days most of the big systems are interconnected to boot.

regardless, this standard of care is just unacceptable. start w a visit, in person, to the hospital admins. a letter is too easy to ignore.
if you can, get an attorney to go with you. preferably one that has successfully sued them in the past.
personally, i would not even bother with that. i would go straight to the state licensing board.

this is just outrageous. do it for your son, but also for all those that dont have a warrior in their corner.
since this place is a 90 minute drive, i am assuming there are no other options where you are. but if there is anywhere else you could conceivably take him, do it.

what they are doing is just stupid, lazy, wrong, and dangerous. they should be called on the carpet for it.

[hunter]

18. ...not 100 years sadly... not even half a century... not even a decade in some places.

... I'm going to have to be a little distant here. Too close to home.



SSRI drugs frequently reveal bipolar disorders; not in positive ways.

[DebJ]

17. Update: Bad news. He went horribly manic, just like I said he would.

He kept taking the Celexa, because he liked the high of it. He went extremely manic. Now he will be in the hospital for several more days.

He is off the Celexa now, and has a different doctor there.

On Saturday, I had called each shift and spoken to his nurses to warn them that he could go from smiling silly to dangerous in 10 seconds flat, and I asked at each shift if the doctor had changed any of his medications. The first shift I called I had advised of the problem with SSRI's and asked them to tell the doctor. At shift change I called, and the doctor hadn't finished his paperwork for the day, no changes. So I called the next shift, to find still no changes, and to warn the nurses again. In the morning, I called again. And yes, I was upset at each call, but I didn't yell at the nurses, who after all have no authority. I expressed my distress over the damage being done to my son's brain while I stood helplessly by.

My last call to them, I said I wanted to know why a doctor would continue to prescribe a class of meds for a patient after he had been told this patient had a prior medical history of extremely bad results that had caused his first hospitalization. I said I wanted to hear the doctor's medical reasons for doing this. The nurse's response was to say the Social "Worker Brian would take care of that (speaking for the Invisible Omnipotent God-Doctor), I presumed.

I spoke to Brian yesterday. Of course he didn't tell me the answer to my question, though I repeated it many times. He said that he was advocating for my son's release from the hospital yesterday, and Brian and my son said he wasn't going to take the Celexa, but only because I was so upset, and that my son wouldn't be seeing his regular psych til Aug 31. That concerned me.

Turns out that right after that he went ballistic manic and so he won't be getting out.

I will be contacting the hospital in the next week.

I can't do it right now because yesterday my BP was 180/100 and I went to the ER at our hospital (different one) with terrible pain down my left arm, chest tightness, nausea, chills, and just generally feeling hideous. Before we went to the ER I took an extra one of my BP meds (and extra 1/2 days dose)...I had asked my doc about that one other time and she said ok, so I took the risk and did it this time. After sitting in the ER for about 45 minutes, they took my vitals and did an EKG. I noticed that the machine said my BP was down to 132/88. The ER put us back in the waiting room. After sitting there for 4 hours waiting for a doctor to read my EKG, a migraine was starting from the bright lighting, the loud discussions from a group of young girls and from a family trying to calm down a poor elderly woman suffering horribly from dementia and Sundowners syndrome, and a man loudly playing videos on his phone....for four hours of this. One young woman was miscarrying at 13 weeks and she had been sitting in a wheelchair with no attention for 6 hours...why wasn't she upstairs in OB/GYN? Plus a woman near us was vomiting loudly and profusely several times an hour . She left without ever being seen after waiting for hours. We left after four hours. I figured I wasn't dead yet, and if I kept sitting there, my BP was going to escalate again from the migraine that was trying to start. I needed to get into a bed and have some quiet. So we went home and let God roll the dice.

Kind of scary to go to the ER with those symptoms and not be able to see a doctor at all for 4 hours, or get a bed to lie down in at least. It's damn uncomfortable sitting upright in those chairs for hours. I'm not at all comfortable about the status of U.S. medical care at this point.

[hunter]

19. .

Manic sucks.

[mopinko]

20. well, when it takes that long you know your ekg was fine.

if it wasnt, you would have known in minutes. the tech may not read them, but they know bad when they see it.

really, this is a horror story. maybe try to get some help from the nearest nami chapter? assume they would know a lot about the way this place runs. might be helpful.

i would also get ahold of his regular shrink. he may not have privileges there, but the guy that is treating your son would have to take his calls.

[DebJ]

22. He has an appointment with his regular guy the 31st.

They did let him out today. One of the staff did say the Celexa does leave the system rapidly, and I'm sure he is better or his girl friend would not have signed him out.

Thanks for the info on the tech. I go to my doc in the morning.

[steve2470]

21. Something is terribly wrong with this hospital (gross medical malpractice and incompetence)

I looked at their website, and of course it's very slick and says all the right things. They need to be shaken up but good. What you describe about your son is borderline criminal and actionable malpractice.

If you go confront the hospital administrator in person, be sure to document ASAP afterwards what was said. If you can put a very small camera on your person to record it or take a person with you to record, even better. If that confrontation doesn't produce results, then, do the letter.

As I said before, you do NOT want them in a legal-adversary-stance. Once that happens, all really good communication and problem-solving stops and they lawyer up and hunker down. Yes, of course, if you want to sue them, you have every right to do so and also contact the Maryland mental health and hospital boards (unless they are regulated by only one board). You can also contact the Joint Commision which accredits hospitals. Contacting the Joint Commission is really the nuclear bomb in all this. If they lose JC accreditation, they are sunk. They don't want JC nosing around, trust me.

http://www.jointcommission.org/

https://en.wikipedia.org/wiki/Joint_Commission

The JC used to be called JCAH, then JCAHO, now it's just the Joint Commission.

[DebJ]

23. Thanks Steve. I did take some action today, actually.

This is long and detailed, because this is also going to be the basis of the letter I will be sending in a day or two, to the woman to whom I spoke, so that nothing is forgotten, and it is clear I truly experienced this mess and want to see it improved upon.


I called the operator and asked who to speak to about procedural issues on admissions. (I had asked a nurse for the name of who to contact on this, and she refused to tell me.) The operator said she tried to put me through, but it was busy. I said that actually I was writing a letter, and just needed a name other than the only name on the website (CEO and President). Suddenly, I got put through to Patient Relations.

I had a nice long chat with a woman there. I stressed throughout that I simply wanted things to be better the next time that my son needs their services. I said that I am certain there are many in the hospital system who truly are dedicated to the high and difficult ideals of excellent patient service. I said I was a business manager for many decades, and I know that every system is full of humans and full of faulty procedures or missing procedures they should have.

I first discussed the fact that my son in effect is stripped of all his medications for 48 hours anytime he goes in, and not because a doctor has ordered such, for in fact, no doctor has done anything upon admittance. I pointed out that people who enter the hospital for this service are there precisely because they are not in control of all of their mental processes, and so relying upon them to self-report their medications, with an accurate listing of all current drugs, no old drugs, and at proper doses, doesn't seem like a safe and logical procedure. Likewise, if they have a card in their wallet, is it updated? I pointed out that their hospital is very familiar with my son's regular psychiatrist, as he himself was in charge of the Behavioral Health ward just a year or two ago. I pointed out that my son was admitted around 2 pm Thursday, and that they could have picked up the phone and called his doctor anytime Thursday afternoon or all day Friday, but their choice was to never call. I pointed out that my son's girlfriend had located my son's actual prescription bottles (instead of his med strips) Saturday afternoon, but they told her she could not bring them in until Sunday morning, delaying things yet again.

I explained to her that in every visit that he has been there, I have been told on Day 2 "Oops, seems like the doctor's request for medications just didn't make it to the pharmacy, and that the pharmacy takes up to 24 hours to let the ward know that they do not stock something, and so only after 48 hours of no meds, does anyone begin the process of saying "Ok, get his meds in the original bottles and we will dispense those." I said when we KNOW your pharmacy never stocks a certain med, why can't the intake nurse expedite the process? She said the intake nurse should call the pharmacy and get a reply immediately. I explained to her that this particular medication is for both ADHD and blood pressure control, and that they had forced my 425 lb son (he's 7' tall too) be without his blood pressure medication from Thursday through Sunday afternon.

She began to explain to me how the pharmacy can't stock every medicine, but I gently interjected how thoroughly I understand that, how that is completely sensible, how no hospital can stock everything, nor even everything in the psychiatric category. Lord knows there's enough in that category alone...well, I know, after almost 20 years you become intimately familiar with a huge number of them.

But I then re-emphasized that even with meds they do stock (like klonazepam), they still aren't able to give him his normal dose for days.

I again emphasized that I was a manger for several businesses for many years. That I understand mess ups with procedures and that there will always be some employees somewhere who just don't measure up. That I was certain that the hospital overall wants to have an excellent standard of care, and that they would want to know of these things so as to address them, improve patient care and results, and prevent reoccurrences in the future. Then I told her about the nurse, who I had asked to please tell me who at the hospital I should contact, or the department name, so that I might bring some of my concerns about procedures to their attention, and that she refused to give me a name or department. I said that as a manager, I know I would always want to IMMEDIATELY know of any concerns so that these could be immediately addressed, and I am sure that most likely this is hospital policy, to just give your department's name to anyone who asked for it. I said if I was part of your administration, I would want to insure that everyone in that unit was immediately reminded that this is hospital policy and it needs to be adhered to no matter what.

This went quite well, so then I ventured into the more unclear realm of HIPPA, as concerns an adult with bipolar disorder. I explained what happened with the Celexa, and how the doctor assigned to my son 1) did not change the medication after being made aware that his patient had a previous bad experience, 2) no one would even tell me he had decided to not change it; I had to conclude that after 2 days and 6 shift nurses came and went with no change and no explanation, and 3) that I still very much want to know WHY he decided to not remove this medication...there are many other options available to have addressed my son's needs. I said I really, really, want to know.

The woman had been very pleasant with me, at first the almost falsetto phony type of pleasant she must be for her job, but over the course of our speaking, she came to understand and be comfortable with me, and that all I want is for things to be better next time. She began to explain HIPPA, and I said that my son had signed the release form for me. That the nurses did provide me the information as to what medications he was given, and confirmed that he had indeed taken those medications. She said, "Oh". Then I said after many shifts with no changes, I had specifically asked to be advised, to have explained to me, why the doctor had chosen to leave my son on a medication that had previously been quite harmful to him. What decision-making process over-rode a possible choice to changing the meds? I was told that Brian, the 'social worker', would be the liason with the doctor. I asked him many times to answer this question, and he refused to answer it and simply said other things instead each time I asked.

I also told the woman that as the son of a child with this disorder, I am quite aware that it is likely the best thing that the doctors of adult patients do not consult directly with the parent; that there are hereditary factors that might well mean the parents are themselves also unstable, and speaking with a doctor would be unproductive, a waste of time due to lack of real knowledge of all the shades of practice in psychiatry, and could perhaps even be dangerous. I said it is not a face-to-face that I am requesting. I just want an answer to my question. I told her that my own physician has at times recommended things to me, and I've said "WHAT????". Then she explains her reasoning to me, the pros and cons of various choices, and why she made her recommendation, and then I follow it, or sometimes not, and explain to her why I chose not to do so in that case (such as not using a psych med to help me quit smoking, as a psychiatrist told me that with my family history, I should never, ever touch any of those meds at all unless I was under direct and intense supervision of a professional psychiatrist, and that using psychoactive substances could actually trigger a serious case of bipolar that I would otherwise avoid my entire life. I've never needed any meds for this myself, at all. She wanted to scare the poop out of me, and she did! And I am grateful...not that I even take aspirin unless forced.)

So then the woman in Patient Relations said that over the course of her career there, she has received lots of calls from parents about their adult children in the Behavioral Unit. And she said that she usually doesn't wade into this territory with them, but she would with me. She said it could possibly be the case (hedging about we don't know, etc etc but it COULD be), that my son instructed the doctor himself to NOT tell me what was going on, after he signed the HIPPA. My first response was that this wasn't like my son, but yes when patients are manic there is no point at being surprised at anything. But I strongly doubt it. And I said I have easily obtained the information that he was offered the drug, and that he took it, from the nursing staff; there was no hold on that, so that seems odd. Then I came up with an alternate solution.

I said that in a few weeks, after my son's release and seeing his own p-doc and getting stable again, could my son call and find out the doctor's reasoning for this? He would have a right to know, would he not? She said yes, of course. I said okay, I will still put this in my letter, but we might pursue that also. I said maybe we will never find out anything, but I feel that it is urgent and critical that you, the hospital know that a doctor on your staff who deals with people who are in no position to speak for themselves, went against standard medical practice and gave my son a drug that could do him permanent harm, when he was advised of the patient's prior negative history with that drug, when he was told it was precisely SSRI's that would make my son blow up into severe mania, when there were many other choices and such risk was not necessary, and that he offered no explanation for his choice, even though repeated requests were made for that information, so that we could simply understand.

I also explained to her that my son feels like he may have a legal right to refuse a drug, but that this will mean he is noted as uncooperative and then they will retain him longer and keep him even longer from seeing the p-doc that really knows him well. I said part of that is his current mental state and paranoia, but only part, because he has experienced precisely this in past visits. And that the doctor's refusal this visit to explain his choice of medications for my son does not help this situation. That when a doctor is so busy or whatever that he won't speak more than 2 sentences to a patient in this state, this does not help the patient to feel comfortable in speaking up for himself...no matter what a kindly and wonderful nurse says (I also gave her that nurse's name with high thanks.) I said the entire experience leaves me, as well as my son, feeling that you have my child imprisoned there, that we have no say in his treatment, that his prior medical history will not be considered, and that there are no communications as to what is really going on (ie the reason for the doctor's choice post-advisement of the past history), and so what our experience is, is that my son is a helpless prisoner, and that the doctor feels like an Omniscient and Invisible God who can do as he wants, and we have no say.

As a final note, a friend of mine who just got his PA in May called us today. I explained the situation to him. Our friend is one of those extremely brilliant, exceptionally brilliant people, where it takes you like 30 seconds to see that. He went through a special fast-pace training program and graduated in just two demanding years. (He did already have a bachelor's or masters in science). When he heard me begin my story, he interjected "Who the hell prescribes an SSRI for a patient with bipolar?" Now, our friend did not specialize in any way in psychiatrics, his own family, to my knowledge, does not have any members with bipolar. But, somewhere in his crash courses, his trainers obviously took the time to insure that they mention that you don't prescribe an SSRI to a bipolar person generally speaking at least. I was quite surprised to hear him say this. He does have a steel-trap of a mind, but to blow through that training in 2 years...that was a lot to remember, and he did.

Thanks for all your support steve. It really does help.

Deb


On Edit: I also told her that one possibility that my son's meds weren't changed, is that the doctor had so many patients to deal with, that he never took the time to actually make any kind of decision to change my son's meds. But that the hospital should definitely know about the outcome.

[steve2470]

24. may I ask about the current status ?

If not, I totally understand. to your son and you

[DebJ]

25. Hi Steve. Thanks for asking.

I think only someone with medical experience can understand the implications of what I'll relate below.

Immediately after my son was released from the hospital, I received a call from my sister in North Carolina, where my parents moved two years ago, stating that Mom (age 86) was not expected to live through the next two weeks. I immediately began making preparations to go there (an 8 hour minimum drive from my house in Pa), to be with my Dad. My parents have spent almost every waking minute side-by-side for almost 30 years now, since Mom was hit head-on by a drunk driver just before her 60th birthday and put into a wheel chair for life, with numerous complications. I don't see them as Mom and Dad anymore, but as MomDad; she breathes in; he breathes out. She went into a nursing home in early April with severe dementia, not eating, etc., and Dad spent every day from April through September 1 by her side there, from 730 am until dark, never leaving her side, and saying he went so early in the morning because he wanted to be the first thing she saw when she woke up, as had been the case for over 60 years. He tried to get the nursing home to let him stay there 24/7. Losing Mom will be incredibly difficult for my Dad.

"Making preparations" for a week long trip is a big deal. My husband has chronic kidney disease (at the border line of levels 3 and 4), diabetes type 2, and some heart muscle loss from a prior heart attack, and other associated medical issues. To keep him at level 4 as long as possible and off dialysis, I designed 15 daily menu plans accommodating his many dietary restrictions, and tailored to his own food preferences. I weigh, count, or measure every bite of food that he eats, and he eats 6 meals a day. I can only set up his food for a max of 7 days out, or it spoils. But that is 49 meals/snacks to make for a week, and it is a big deal to accomplish, especially since I do every possible food item from scratch to avoid excess potassium and sodium and to actually KNOW what the ingredients are that he is consuming. A lot of work, but it has been worth it since his nephrologist remains amazed that 3.5 years into this diagnosis, my husband is still stable and not on dialysis....his values have remained at 28-32 all this time, though recently more like 29 percent of kidney function.

I was also trying to time my visit to NC with a best guess, since I'm limited to 7 days, to hopefully be there with my Dad WHEN Mom passed away. But Mom passed away on September 1, before I had left home. (I had just been to visit her a few weeks before, and I have always made it a point to visit as frequently as possible (especially when she lived 3 hours away for all but the last two years), and to call her every day and sometimes even more than that, so I was okay with this.) My sister arranged the funeral to be on Friday the 4th, due to Labor Day weekend complications, and so I had to shift plans and rush to get to West Virginia for the funeral services and burial.

Then I had to return to home in Pa, and re-do the food planning so as to go to NC to be with my Dad for the better part of a week. My siblings #3 and #4 went to NC on the 7th and 8th and were there through the 11th, so I planned to go the following week, after they left, to give Dad a longer time of support. And I needed a week to recover from my son's recent issue, and my Mom's passing.

Our 83 year old Dad was just formally diagnosed with dementia in mid-August, and a few weeks before that, he had totaled his brand-new van, and now, he lost his wife and buried her on the day of their 61st wedding anniversary. My sister that he lives with is handicapped with many complications of Marfan Syndrome, her Mother In Law lives with them too and she has Alzheimers and requires assistance, and my sister has to spend almost the entire afternoon in bed because she has had the majority of her spine fused together to keep it from collapsing on her and crushing her lungs. She's 58 but has been in this situation for some years now. To top it all off, Dad has always been someone who is constantly on the go. Over the past decade, he's just gone to restaurants and Walmart and other odd little places, but the point is he is a person who needs to keep busy; his habit is to be out of the house no less than 4 hours a day every day. In fact, he walks faster than I do and it is literally painful for me to keep up with his walking pace! He can't drive himself anywhere for now (he has to pass a driving test in NC now, post-accident, and he failed it once already); and my sister won't take him much of anywhere, leaving him alone, without Mom, to stare at the lonely walls in her house all day and evening most days, now without Mom's companionship. My sister lives way out of the city limits, at the end of a road with just a few houses and no contact with the few neighbors there, and her house is surrounded on two sides by a forest. No companionship or even chatting available for Dad outside of my sister, who is unavailable from about noon until 6pm and also not available when she has to escort her MIL to doctor visits.

So I wanted to be there with Dad after my other sisters went back home to Md and Illinois. I spent Sunday the 13th on the road all day to get there; then I stayed there until Friday morning, spent Friday morning on the road all day driving home. I had a fender-bender on the way home... no one hurt, no car damage (not even a fender bent, really), but the guy I hit decided he wanted to extort money from me and so he tried to blame my gentle bump in his rear as the cause of clearly ancient damage to his trunk, which would not close. I got home late because he called the police to file a report and we had to wait around. The officer was professional but refused to charge me with a ticket saying it was 'no big deal'. I let into this creep in the gas station parking lot and told him my parents raised me with integrity, and I raised my children the same, and people who try to lie, cheat and steal make life harder and more expensive for everyone, while a group of spectators sniggered at this sad excuse of a human being I was yelling at. That was cathartic, at least. I got home, collapsed in bed, and then had to leave for Virginia the next afternoon into yesterday evening to be with my grandson for his 5th birthday party, and on the way home, drive out of the way to Sister #3's house in Maryland to drop off some of my Mom's possessions that she wanted. While I was in NC, I had helped Dad with the difficult process of removing Mom's clothes and personal articles that he didn't want, and my van was packed floor to ceiling. I didn't get home until 8 pm.

And so here I am this morning, just trying to catch my breath and catch up on sleep. But before I can I have to discuss some things with one of my husband's many specialists for a pending doctor visit tomorrow (he has an oncologist, cardiologist, nephrologist, GP, foot specialist). I have to check up on my Dad by phone regarding his several doctor appointments and driving test this week (and buying another car if he passes his driving test) plus several other issues for Dad. I have to complete my accident report with the insurance company, and our income taxes have to be completed by the extended Oct 15th date. I've been out of town so much the last 8 weeks that the house is a nightmare and the kitchen is bare, and my several vegetable gardens are ghostly dead piles of brown that are an embarrassment to my neighborhood. All the trips out of town for these family emergencies blew our very tight budget out of the water, and so much juggling must be done to get by until November, by which time we hope to be back on track. And I have to follow up with the Frederick hospital about my son's experience. It might be awhile before I can locate my notes with my son's hospital's contact person's name under this stack of accrued mail and other assorted papers that have been pushed aside on my desk for too long while I was running to NC, WV, Va, and Maryland, and getting very little sleep. But I will do it, or there will undoubtedly be a recurrence of this within the next 12 months for my son, and maybe going on right now for other helpless people seeking help at that hospital right now.

I do have an appointment for myself on October 8 with a psychologist to get trained in some stress management techniques, like biofeedback, etc. And to just have an ear as I try to switch gears and get my own life and health back on track after the roller coaster ride of the last few years. Mom used to be my ear, my best friend, and she is gone now. My husband, my son, and my sisters are all too needy, and my own cup needs to get refilled so I can continue to give what they need of me. Our two good friends are themselves in very stressful states, as they are school teachers in a district that has targeted all senior teachers and is harassing them continuously in an attempt to get them to quit so that they can hire new inexperienced teachers for less money (an ongoing hell of the past three years thanks to Governor Gashole Corbett who slashed the education budgets mercilessly here in Pa). Our shared times with these friends need to be fun times, not mourning times, so I'm going to a professional for my outlet. I'm not in bad shape, really, not all sad or down in the dumps or any of that, just very tired, far too busy, and needing an ear. Democratic Underground has been a big help with that, too.

[Act_of_Reparation]

26. Yes and no.

When I was working in pharmacy in California, it was not unusual for patients admitted into long-term care to have their medications confiscated upon arrival. The rationale here is twofold: 1) the patients are not trusted to medicate themselves, and 2) the drugs some patients bring into the hospital might not be what they say they are.

That said, the hospitals would order up a fresh supply of the patient's maintenance meds ASAP, either from their own pharmacy or from a contracted LTC Pharmacy. In either case, the patient should not go without their meds unless ordered by a doctor at the facility.