Can't Sleep, Might As Well Write...

This is, according to the medical records faxed to me from Florida Hospital on Monday, the reason my aunt was involuntarily committed to a psychiatric hospital by the State of Florida, Orange County:

The patient was transferred from Florida Hospital with complaints of
altered mental status exam. The patient has become paranoid towards other
residents, claiming that they are running into her with their power
wheelchair. Apparently, these allegations were not supported by staff at
the nursing home. The patient has also been picking and choosing which
medications she will accept. Patient appears medication seeking,
according to staff, frequently requesting opiate medications every 2
hours. The patient has refused additional recommendation from medical
attending for additional augmentation medications.

According to the patient, she continues to state that there is a resident who is in a wheelchair who continues to run the power wheelcnair inio her back. The patient minimizes her medication-seeking behavior at the facility, but during the interview was constantly refocusing on pain, although appeared in no acute distress. In fact. she was sitting up at the edge of the bed at the time.

That's right, if you live in a nursing home in the state of Florida and another patient at the nursing home harasses you, whatever you do, don't tell anyone! Because if you do, you run the risk of being involuntarily locked up in a psychiatric ward of the local hospital. And by all means, no matter how much pain you may be in from your myriad documented ailments (including at least two terminal illnesses), do not seek out medications to alleviate your symptoms! Because then you're a potential junkie, and that's even more reason to hospitalize you against your will. (But if you are silly enough to actually ask for medication, for god's sake, don't sit on the edge of your bed when you do it--at least fall on the floor and writhe a bit in agony until the attending physician is convinced that you really are experiencing pain.)

Oh, and there's more...

MENTAL STATUS EXAMINATION: Normal rate of speech. Thoughts are mildly
tangential. Follow for paranoid themes. The patient denies any auditory,
visual hallucinations, She denies any suicidal or homicidal ideation.
Denies any prior suicide attempts. Insight and judgment are fair. Use of
language and fund of knowledge low average. No abnormal movement
appreciated. Immediate, recent, and remote memory appears intact. No
abnormal movements. Affect is constricted. Mood is depressed.

"Mood is depressed"? Gee, do you suppose? I know if someone were trying to commit me to a mental hospital, despite the fact that I showed zero signs of having any acute psychiatric issues, I certainly wouldn't be ecstatic about it. I would feel, if I had to guess, a little down about the situation. Depressed, you might say.

The report then goes on to say (and I've asked someone to translate this axis stuff into English for me--will edit when/if I get a response):

IMPRESSION:

AXIS I:
1. Major depressive disorder, rule out psychotic features.
2. Opiate dependence. rule out withdrawal

AXIS Il: Deferred.

AXIS III: see medical section above.

AXIS IV: Moderate

AXIS V: 30

The risks and benefits of medication were discussed as well as side
effects and alternatives. Start Cymbalta 30 mg p.o, daily. Augment with
Ability 2.5 mg p.o daily. Follow for response. TM patient may benefit
from pain management consult. Additional management as per Dr. Akella.
Obtain parallel history from previous facility. Once stable for
discharge, the patient would benefit from ongoing psychiatric followup care. Estimated length of stay is 7 to 10 days. Rlsks, benefits, and
alternatives of medications were discussed as well as side effect.

And there you have it. All the Florida state government needs to put a person away against her will is a physician who, while admitting the patient has nothing exceptionally compelling about her behavior to suggest that she's a threat to herself or others, nonetheless signs off on a document stating that the person could benefit from a little forced observation.

I am completely appalled that this sort of thing can happen this day and age.

Calling Cathy Again...

7:59 p.m., Tuesday, Dec. 21

A new person whose name I didn't catch answered the phone. I had to give the security code. Waiting now for Cathy to get to the phone.

8:00 p.m. Cathy has answered. Bitching about gowns and gloves, etc. Cathy doesn't remember speaking to Cara. Only remembers talking to Marci.

Cathy says Arianna is a "nice lady." Has a problem getting back to the people at Florida Hospital. "They have everything ready except for the prescriptions." Cathy says "people with heart conditions cannot fly." Cathy isn't "leaving her stuff." I would at least have to rent a car.

Who said she had liver cancer? "Another hospital." Orlando Regional Medical Center diagnosed it. Did a CT scan on her liver.

ORMC was the hospital she went to after the rape.

15mg morphine every four hours; xanax 1 mg at least more than once a day; in between xanax atavan (doesn't know what dosage is); 60 mg methadone (not addicted to heroine, for pain management). (Cathy says she was up to 90 mg of xanax and 15 mg of xanax every two hours; morphine every 2 hours; liquid morphine every six hours.)

Sent the Following Email

Sent this email tonight to Carol, Cara, and Andrea (Wake co. social services):

Hi All,

It's 6:30 Tuesday evening and I feel as though I've taken two steps forward and three steps back as far as my goal of getting my aunt to NC in time for Christmas. It seems to me that someone, some time today, decided that because Cathy's "health care guardian advocate" has not approved for any information about Cathy to be given to me (and potentially anyone else interested in helping facilitate her transfer) that the hospital is, at this time, unwilling and/or unable to assist me with the necessary information to get Cathy placed somewhere in NC. I, of course, don't know for sure that this is the case, but it has been intimated. And since no one has given me a "level of care" form, or communicated to me that placement at a facility in NC is possible, or otherwise helped me get the ball rolling today, I can only assume that there is more concern somewhere (court staff? hospital staff? both?) about covering one's behind legally than there is about getting a sick, lonely, indigent woman reunited with her family.

I'm not at all saying that either of you are doing this, either intentionally or unintentionally--in fact I suspect that you are merely pawns at this point--but the bottom line is I have been told that my aunt has less than six months to live and I'd very much like to have her and all of her medication, medical records, social security distributions, and medicaid information transferred to NC so that she can spend what we have been led to believe is her last Christmas on earth with her family. This shouldn't be a difficult task. At least not as difficult as it's proven to be so far.

I need only a few things from you/someone at the hospital:

• A fax to Wake co. Register of Deeds/Dept of Vital Records stating that I need to pick up Cathy's birth certificate due to medical issues (and I need her birth certificate to obtain an ID for her so we can put her on an airplane).
• A level of care document that we can show to potential facilities in our area.
• Proof that Cathy has SSI and Medicaid once she gets to NC (Andrea, this is something you can do for me, I hope.)
• A list of Cathy's current medications, including dosage and frequency, and at least a month's worth of meds to take with her out of Florida.

If her "guardian advocate" (and I keep putting that term in quotes because 1) I firmly believe the court has not followed the law appointing this person and 2) as far as I can tell, there's been zero advocating for my aunt on the part of this person) is what is keeping the process from going forward, well, legal or not according to Florida law, a crime is being committed against my aunt, myself, and the rest of my family. At some point, common sense and human compassion--i.e. what is RIGHT--should override whatever "the rules" are. And that is not happening in this case.

As you can tell, I'm frustrated, I'm angry, and, more than anything, I'm sad. My aunt has, indeed, had a rough life. She is, in fact, not the most pleasant person to deal with. But she's still a human being, with feelings and emotions, and no matter her transgressions, she deserves to be treated with the same dignity, respect, and concern we all are entitled to as human beings. Most of us cannot even begin to imagine the sort of horrid experiences Cathy has had for the entire duration of her life. It's amazing, truly, that she has lived as long as she has and that she's doing as well as she's doing. So please keep in mind, and remind the others on your staff to keep in mind, that Cathy is a real person and they have no idea what her whole story is, so please, be kind to her. And please, please, please, I'm begging you, help me help Cathy get back to NC and to her family.

Many thanks and kindest regards,

Carmen Zepp

Another day of frustration...

It's 5 p.m. Tuesday, 12/21. I've again spent all day accomplishing nothing much more than spinning my wheels.

I called Guardian Care today about placing Cathy there, but never received a return call.

Christy at Hospice in Johnston co. called me finally, but I missed her call and she didn't answer the return call. No idea what, if anything, has been worked out between the two Hospice organizations.

Suddenly no one at Florida Hospital can do anything for me until the Guardian Advocate is contacted and gives approval. I've been asking for this Guardian Advocate to call me for three days now and I've received nothing. It's too late to call the office at the courthouse that oversees the guardian advocate program, so I have no choice but to wait and see if this woman gives me a call back.

5:14 p.m. Christy called me back. Told Cara what criteria/guidelines are to meet Hospice requirements. NC medicaid guidelines re: hospice appropriate guidelines. Cathy does not meet those guidelines. Christy gave Cara the guidelines. Ejection/fraction rate of <=20%, Cathy doesn't meet that. If we're looking for L/T placement, easier to do it once they're here in the state and medicaid is established. Because Cathy has SSI, she automatically has medicaid in the state of NC. Christy indicated that the social services/Florida Hospital folks have been contacting people up here in NC. Cara asked Christy if she (Christy) were the person Cara was to be sending the TASSER (sp? PASSER?) score to. Christy said no. Christy said the score is used in some places in order to be deemed appropriate for placement in skilled nursing facilities. Ellen said she'd been trying to contact facilities in NC to find a place for Cathy (Kindred company).

Hospital may not have any choice whether they can prescribe a month's worth of medication--it's up to what medicaid will pay.

Christy said I need to ask social services if Cathy's medicaid in NC going to be automatically in effect, if so, can I get proof of it. Give the proof to Florida Hospital and ask them to contact facilities in NC. May have some stumbling blocks due to guardianship issue, behavioral issues (although she's better with meds).

DDE (direct data entry) is a system that health care companies/personnel can look into to see what the status is of Cathy’s SSI or Medicaid. Once FL2 or level care forms are sent to DDS, DDS is supposed to be changing to another company that won the bid, because level of care can change from month to month. Christy is a nice lady, but bottom line is that she isn’t going to be able to help us. She does, however, have a good point: If Cathy was placed in a facility in Florida, would she be, at that point, declared competent again? If so, and I showed up the same day, would I be able to get the information I need to facilitate getting her to NC? Is SSI disabilitiy? How long has she been disabled? Does she qualify for medicare?

WHY IS THIS SO FUCKING HARD?!?!?!

Notes from today, 12/21

12/21:
Received a call at 9:53 a.m. from an Internal Medicine physician (whose name I did not write down). Notes about that call are on the blog.

Called Florida Hospital at ~2 p.m. to speak with Cathy. Was told by Jessica that Cathy was asleep. Asked Jessica if she could look in Cathy’s file and give me her case number so I could request the documents via this website (http://www.ninthcircuit.org/programs-services/court-reporters/transcript-request.asp?c=1). Jessica said she’d need to transfer me to the social worker. Tina answered the phone (as an aside, it was obvious Tina wasn’t exceptionally happy to speak with me--a fact which I have recorded). Tina said I’d need to contact the court processor (407 403 1504)to obtain transcripts of Cathy’s hearing. Called the court processor’s office and spoke to Val (?). Was asked if I was guardian. I responded that “April” had called to see if I was interested, so I wasn’t sure if I was or wasn’t yet. Val said that she’d have April call me since she was working. I had been, up until then, under the impression that April was another social worker at the hospital, but in fact it would seem that she is a court processor for the Ninth Judicial Circuit Court of Orange County, Florida. I’m awaiting April’s return phone call.

I also need to know where and when Cathy’s rape occurred (the original reason for my call at 2 p.m. to Cathy). I think it’s critical to note that there is absolutely nothing in the records Florida Hospital sent about the rape. I would like to know whether the State of Florida ever provided Cathy with any counseling or other treatment following the incident.

Called at 3:04 p.m. and Diana answered. Recorded call. Diana at first didn’t seem to know who I was talking about, but once she did she said Cathy was in “contact isolation” and wasn’t supposed to be using the phone. According to the Florida statutes:

(5)
COMMUNICATION, ABUSE REPORTING, AND VISITS.—
(a)
Each person receiving services in a facility providing mental health services under this part has the right to communicate freely and privately with persons outside the facility unless it is determined that such communication is likely to be harmful to the person or others. Each facility shall make available as soon as reasonably possible to persons receiving services a telephone that allows for free local calls and access to a long-distance service. A facility is not required to pay the costs of a patient’s long-distance calls. The telephone shall be readily accessible to the patient and shall be placed so that the patient may use it to communicate privately and confidentially. The facility may establish reasonable rules for the use of this telephone, provided that the rules do not interfere with a patient’s access to a telephone to report abuse pursuant to paragraph (e).

Fortunately, Diana managed to get Cathy on the phone; however, the phone Cathy uses is located in the hallway, meaning she has no privacy during her calls.

3:15 p.m.
Spoke with Cathy, recorded conversation. Unsure whether or not she knows what she’s talking about, but supposedly they’ve “all but released” Cathy and have told her that all they’re waiting on is “[me] to be there.” Cathy feels that the hospital is angry enough with me at this point, all they want they do is to get Cathy out of Florida Hospital. “They just don’t want [me] to cause them anymore trouble.” “Everybody has said this” to Cathy. I’m unsure what to believe and what not to believe. I have evidence that the hospital staff (and perhaps the court) have been negligent as far as Cathy’s rights go, and I have personally been lied to/misled during this entire time by those in positions of knowledge and/or authority, but I’ve also been misled by Cathy, so I have no idea who or what to believe after this most recent conversation.

3:45 p.m. received call from attorney Steve Talmage. His advice, write a letter of complaint to the admin of health care association. But this will only serve to get Florida Hospital in trouble with the legal system, wouldn’t do any good to get her out of the hospital. Need to have guardian advocate switch guardianship or sign to give me POA for Cathy.

4:12 p.m. Spoke with Cara (social worker)
Cara has to have consent from guardian advocate for permission to send information out of the hospital. Under Cathy’s current status, “incompetent to consent.” Has to consent for Cathy until she’s discharged. Cara isn’t “familiar to what’s happened prior to [her] getting involved.” Dr. Allen and Carol are trying to get situation with guardian advocate situation resolved. April works for Florida Hospital but is a court processor.

Arianna Johnson is a volunteer with Mental Health Association of Central Florida. Need to speak with someone about volunteer guardian advocates. 407.898.0110. Cara has left a message with Arianna letting her know to call me as soon as possible.

Cara says two Hospices have been speaking to each other. Hospice doesn’t follow same protocol as hospital, so they had permission from Cathy to talk to each other. Ellen was supposed to call me today, according to Cara.

Told Cara about Cathy’s rape and expressed my concerns about Cathy’s treatment, diagnosis, and experience at the hospital.

Received an email from Steve Talmage stating he was working on getting contact info for Adrianna and to give him an hour.

4:50 p.m. Calling SECU Hospice (Christy called earlier while I was on the phone with Cara and I couldn’t answer). Don’t have any ability to record the call right now, though, so I will just have to take notes. Won’t be taking notes, either--Christy didn’t answer, so I left another message.

Received the following email from Steve Talmage a few moments ago:

I talked to the appropriate person in charge of GAs in Orlando. You
should be hearing from Arianna this evening or tommorrow. As I mentioned, I
am going out of town in the morning, and I can't send emails right away and
I can't file papers with the court, but I can sorta READ emails.

Carmen, I hope in the short run this helps. In the long run, if you want
to pursue a complaint with AHCA about Florida Hospital or appeal on the
basis of a violation of the statute, let me know.

Merry Christmas all, even with the "going ons."

Trying to get it all straight...

I received a call this a.m. from an internal med doc whose name I didn't get because I'd just gotten out of bed and hadn't even had any coffee yet. I'd been waiting for this internist to call me since Sunday, so I'm happy that he finally contacted me, I just wish I could have had an opportunity to get things together before I spoke to him. I wasn't even able to record the conversation, I was caught so off guard.

Dr. No Name sounds Indian (Eastern, that is) and he has, presumably, seen Cathy at least once. I had asked Dr. Allen, the psychiatrist overseeing Cathy's care in the hospital, to have this physician call me when he (Dr. Allen) couldn't answer the question as to whether or not Cathy actually has liver cancer, as she claims. Unfortunately, Dr. No Name wasn't able to answer the question either. In fact, he asked me whether or not Cathy has cancer! I wish I'd recorded the conversation.

Not only did Dr. NN not know whether or not Cathy has cancer, he then stated that he couldn't just go and do random tests to determine if she has cancer. Excuse me? If a physician at a public hospital can't determine whether a patient has cancer or not WHO IN THE HELL CAN?!!! I said essentially that very thing, in not so many words, to Dr. NN, and he finally agreed, sort of, that he would explore the possibility of ordering some tests if Cathy's primary care physician couldn't be located. (She's been at Florida Hospital since Dec. 4--I would think that her primary care physician would have long ago been located, assuming she had one, and if she didn't have one, I would think that tests would have already been ordered and carried out. But hey, I'm not the one with the medical degree, so what do I know?)

On a happier note, I received a call back from the Citizens Commission on Human Rights Florida (http://www.cchrflorida.org/abuse-florida-involuntary-commitment.html), whom I called yesterday in hopes of getting some assistance regarding potential abuse of the Baker Act, which I strongly feel has occurred in Cathy's case. I'm waiting for an emailed release form and then I plan to turn everything I have about this situation over to them. At this point, "everything" consists of some faxed medical records that Florida Hospital sent yesterday, recorded phone conversations from yesterday (I so wish I'd have thought about recording calls earlier), this blog, and my notes, which I hope to get typed up in some logical, readable fashion today.

Unfortunately, I had an entire list of stuff I wanted to accomplish around my house and with my family while I'm on vacation these next two weeks, and this whole ordeal has thrown a monkey wrench into those plans. So beyond getting all of the info together to send to the CCHR folks, my hope for today is to outline in another email to Carol and Cara (Nurse Manager and Social Worker) what my goals are for the next two days. They are as follows:

• I need Cara or Carol to fax a statement to the NC Dept of Vital Records stating that they can release Cathy's birth certificate to me because, due to medical reasons, Cathy is unable to request and obtain her birth certificate herself. (I need the birth certificate because Cathy doesn't have any form of photo ID, meaning I won't be able to get her on a plane. If I can get her birth certificate, hopefully we can get a Florida ID or simply use the birth certificate to get her on board.)
• I need Cara or Carol and/or Ellen (Florida Hospice Social Worker) to communicate with SECU Hospice in Johnston co., with the goal of ensuring Cathy can, at least temporarily, be placed at SECU Hospice.
• Once those two things are accomplished, I can arrange a flight to Florida, as well as, hopefully, two return flights.

Written out like that, these things don't seem like such insurmountable tasks--but I have my doubts as to whether or not they'll actually happen today, unless, of course, I plan to spend the entire day following up on the phone.

So now off to type up my notes and scan medical records.

Gah, can't leave this out! (Emphasis added.)

(5)

In selecting a guardian advocate, the court shall give preference to a health care surrogate, if one has already been designated by the patient. If the patient has not previously selected a health care surrogate, except for good cause documented in the court record, the selection shall be made from the following list in the order of listing:

(a)

The patient’s spouse.

(b)

An adult child of the patient.

(c)

A parent of the patient.

(d)

The adult next of kin of the patient.

(e)

An adult friend of the patient.

(f)

An adult trained and willing to serve as guardian advocate for the patient.

So the hospital knew that my mother and I were communicating with Cathy and were available to serve as her health care surrogate, yet they went ahead and appointed a guardian advocate. I'm going to be sure to bring this up to...someone. The hospital? Carol, maybe? The physician? Not sure exactly yet who the best person would be to ask about this. Guess I'll start with an email to Carol and go from there.