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I've recently admitted my 90 year old mother, who has advancing Alzheimer's, a heart condition, and Type ll diabetes into in-home hospice care run through MediCARE.


I have total, full coverage POA as well as complete control over her health care and decisions through her Advanced Directive, and that includes a WAIVER to her HIPAA Rights.


That having been said, I went through the last bit of her admissions procedure today, after a representative had already come to the house the day before, to complete the process. Mind you that ALL of her information was given to them by me as mom's no longer able to communicate.


While completing the admissions, the rep kept trying to keep the information and additional notes away from me, preventing me from reading them.


I kept wondering WHAT it was they were trying to keep from me or hide! Thus, my question.... do I have the RIGHT to be able to read this information and their additional notes as they pertain to her admissions, or any other information as it pertains to her, for that matter? I would personally think so, but I'm hoping to receive a better, more legally sound answer to my query as opposed to my simply thinking I DO have the RIGHT.


As always, I appreciate any answers that I may receive and I thank you in advance for helping me out!!!

There may have been notes about you, hospice will be helping you too. Or perhaps, there were notes on another family or patient?

You sound paranoid.. maybe because bro dearest one called APS to have you investigated? My twisted sissies also had me investigated so I understand the complete lack of trust in anything or anybody.

If this is really bothering you, call them, tell them you are thinking about switching companies because of this. Maybe they would then tell you what it was.

Completely beside the point, but I once had a fire at my home. Insurance company would never let me see a single photo of the many that they had taken, calling them work products. Just a thought.

I found this article that may be of help
I work Monday through Thursday, 40 hours — on paper. When I come home at night, I start in on the homework. Each admission is two to three hours of paperwork. That’s the killer. I spend the night buried in paperwork.
https://nymag.com/thejob/2017/03/the-nurse-who-admits-patients-to-hospice-care.html


It may be that these are personal notes for intake to use when preparing a care plan. It makes sense to me that these sorts of notes would not be viewed by family in order to keep the opinions expressed unbiased by family input.
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Reply to gladimhere
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Seems you were with the admit nurse and not the nurse that will interact with your loved one on a weekly basis. The admit nurse for my parents made lots and lots of notes (paper-based). However, I was allowed to view and ask questions before signing. The notes included things like appearance of parents from her viewpoint, how many people appeared to live in the home, name of all physicians, what we would like to see happened, etc.

With that being said, I don’t think you have to stick with this company if you don’t trust them. I was told we could change our minds and discontinue or even change companies at any time.
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Reply to answry
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"While completing the admissions, the rep kept trying to keep the information and additional notes away from me, preventing me from reading them."

I'm just trying to picture the scene. So she was sitting next to you, across a table from you, or what? And you were craning your neck trying to look at these documents, or what?

Did you ask to see them? By which I mean, did you say to her "may I read the notes and documentation, please?"

And if not, why not?
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Reply to Countrymouse
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lotsokittycats Apr 11, 2020
She was slightly to the right of me and whenever she wanted to show me something on her tablet but it was on her admissions page instead of the one she wanted me to see, she would very quickly pull the tablet away from me and, on at least two occasions, she actually SAID, "that's not for YOU to see!"

No, I did not ask to see them because, honestly, I felt rather intimidated by her.
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Things are different here but I can't imagine what might have been written during a hospice intake interview that wasn't part of an open medical record - a copy of my mother's paperwork was left in our home as part of her care plan booklet.
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Reply to cwillie
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You are not entitled to review private notes of anyone. You can ask for copies of paperwork you signed during the admission process but at this time that is all you can receive. You have no legal right to her notes.

Are you saying you want to see her actual hospice orders?

As stated below you have a right to view your and mom’s medical records as the POA but not in real time. You can request a copy of the medical records in writing after they are complete.

Why does this worry you so? You are placing your mother in an in house hospice unit. Why do you think the staff person is trying to hide anything from you?
Give her the benefit of the doubt. She could have seen other patients and maybe wrote notes on the same page.

I am not an attorney but a person’s medical records in the moment are the agency’s/hospital’s property, not yours. I managed a dialysis center for 13 years and it was drilled in my head that one is not to give anyone copies of internal documents without a formal request. Those admission papers belong to the company. You get a copy of forms you sign for your mother on admission.

You can request a copy of her medical records via a formal request after the event is over.
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lotsokittycats Apr 11, 2020
Frankly, I was concerned that she had included things ABOUT ME that she didn't want me to see. THAT'S the reason WHY I wanted to see them.
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I don't think your entitled to see private notes. They maybe observations. Something you may not be privy to.

This is an interesting question.
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Reply to JoAnn29
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I don't know if something was being 'hidden' from you as much as the rep wanted to keep her own notes and maybe not have you looking over her shoulder? Perhaps she was taking notes about you as well as about your mother, as the care is a family thing....hospice comes in to care for ALL involved. I don't know. I do know that there is sensitive type information involved with hospice, so maybe she's trying to spare you. Who knows? This is not the nurse that will be attending to your mother, but the admissions person, right? I would wait to meet the actual nurse who will be attending to your mother before having any further worries about anything, if it were me. If you like the nurse and feel a rapport with her (or him), THAT is what counts.......not what is being written down on the admission paperwork.

If you don't like the nurse, well that's a different matter entirely and you may need to find a different hospice company altogether. I've had good experiences with Suncrest..........I don't know if that company is available where you live....?

Best of luck!
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Reply to lealonnie1
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lotsokittycats Apr 11, 2020
You hit the nail on the head when you answered, "Perhaps she was taking notes about you as well as about your mother, as the care is a family thing...."
Maybe I'm just being paranoid (because I was once reported to Elder Abuse authorities, by my brother as it turns out), and it was a very upsetting ordeal but one that I was COMPLETELY exonerated of! BUT, that feeling has stayed with me now, for YEARS afterwards, so that's where THAT comes from.
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As a patient I have a legal right to all of my medical records and I believe that applies to my legal representative (POA, health care proxy...) as well but that doesn’t mean it’s always made easy for me to get. I would simply call the organization and ask for a copy of mon’s full file. I think they have to comply unless there are differences by state and if you aren’t inclined to make sure they know why you want this maybe they will ask so you can let them know that the person or method used made you feel uncomfortable and as though something was being hidden. I agree with cwillie, this is not the way any families relationship with Hospice should start.
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lotsokittycats Apr 11, 2020
Thank you and, YES, I will ask for her FULL admissions records and, NO, I don't feel this was handled properly and as you stated correctly, "... you can let them know that the person or method used made you feel uncomfortable and as though something was being hidden." I appreciate your fully understanding and emphasizing with how I felt about the process!!!
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She may have just assumed that you'd have questions about the records/notes and she didn't want to take the time to answer them. Or, it's also possible she lacked experience and worried that she would not know the answers to your questions, so it would then just be easier to stick to the script and not let you see something in the records which might bring forth questions. I would think you'd be able to see her entire file if you really wanted to.
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Reply to Mysteryshopper
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lotsokittycats Apr 11, 2020
Thank you! THAT'S exactly how I feel, though I do feel that she WAS experienced and WAS trying to keep me from seeing notes ABOUT ME.
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BTW... I JUST sent this message to her main nurse (or, at least one of the nurses who did the intake
Let me know what y'all think...

"I'd like you to come back over, at whatever day or time is convenient, so I can look at mom's intake paperwork, since I have POA, advance directive oversight, AND A HIPAA WAIVER. Thank you
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Reply to lotsokittycats
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How weird and annoying that they were trying to hide info from you! Did you call the person on it and ask what they were doing?? Did that person know about your POA, etc.? I would complain to their boss, etc.
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lotsokittycats Apr 10, 2020
No, didn't say anything but out bothered me BIG TIME and it happened several times that she would pull the laptop away from me every time she needed me to read something else! I was SO taken aback and, to be honest, intimidated, that I just let it go! Should I ask for another one on one with her and, if so, what reason would I give her?
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I think the relationship between hospice and patient/family has to be one of total trust and the fact that the intake rep is blatantly hiding something violates that trust, if they can't be upfront now then how can you rely on them to be upfront when making critical care decisions?
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Reply to cwillie
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lotsokittycats Apr 10, 2020
I COMPLETELY AGREE with you! Now l just have to figure out how to get her to come back to our home, bring her tablet, and show me her admission records and notes!!! HOW would I approach this with her and do I have LEGAL standing?
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