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HIPAA privacy laws and our elderly parents


J-rap
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My mother has short-term memory loss (she is 90), and has completely forgotten how to use certain devices such as her cell phone and computer.  It all happened suddenly, overnight actually, so we believe there could have been a mini stroke.  We haven't been able to convince her to see a doctor -- she has refused to see one,  and my father -- even though he is sharp still -- still respects my mother so much that he doesn't want to push her.  He hasn't wanted us to interfere. 

I finally went ahead and made a doctor appointment for her though this coming week because she needs her toenails clipped and one might be infected.  This was mostly just an excuse for me to convince her to see her doctor.  After I made the appointment, I called up the doctor's nurse to tell her all of our other concerns, such a possible stroke, the memory loss, the fact that she no longer remembers what blood pressure medication she's supposed to take, that she might have a UTI, AND that she is driving still!  The nurse refused to listen to me, and said that because of HIPAA, she cannot hear what I have to say.  I argued it for awhile, saying that I don't believe that's accurate -- that HIPAA doesn't prevent me from telling them my concerns, especially if I believe there is a danger to herself and others, but the nurse told me I was wrong.  She kept telling me that she is not allowed to listen to my concerns.  So I ended up writing the doctor a letter instead, hoping she'll get it and actually read it before my mother's appointment.  (My mother lives several hours away from me, and my sister is taking her to the doctor.  We're certain my mother won't want my sister in the clinic room, and that she won't bring up anything except her toenails!)   I don't know if the doctor will read the letter, but who knows.

How in the world are we supposed to let a doctor know about these problems if HIPAA laws actually prevent us from telling them?  But again, I don't think that's correct.  Sure, doctors can't legally discuss issues with us, but can't we tell them, privately?

Ugh, just don't know how to help my mother!

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To my knowledge you are correct that you can talk to them about your concerns, but they cannot reveal things to you unless your mother has named you in a HIPPA release or you have a medical power of attorney perhaps. 

I am dealing with some sort of similar issues. And I think I have been able to talk to medical personnel without being on HIPPA forms. 

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Yes, you can call and talk to them. With elderly parents, it was my experience that the physicians were very flexible with including us in the information loop. Especially with memory issues, it could get to the point where she cannot consent for the doctor to talk to family from a legal standpoint, yet she can’t get treatment unless the doctor talks to family, so the doctors act in the best interests of their patients and talk to the family. Medical ethics come into play and all of these various laws and standards interact with each other at different times and doctors have to use their judgment. Families that get along and will defer to one member when they disagree go a long way towards helping that co-operation along, too. 

Its ideal if all of the paperwork is in place before difficult times come, but above all I think most doctors are humane and try to include family whenever possible.

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The nurse is misinformed.  I would address it with her supervisor TBH because she shouldn't have been dismissing your information and she should know HIPPA better than she does. 

Can you go with your mom to the appointment?  

My mom signed a release and a health care directive so her various providers could communicate with me.  

ETA:  I see you are far away.  I would call and email the doctor directly.  I would complain about the nurse as well.  

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It's my understanding that unless you are named on paperwork, they cannot divulge info to you but you can certainly share your concerns.

I would call Elder Council in your state or their state - if different from yours - and confirm what the regulations are. Hopefully your mother's doc is better informed than his nurse.

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J-Rap, given what you described I think your mother ought to have gone to a hospital - and yes, her closest relative should've simply made her go. Please do contact the Elder council or adult protective services or whoever is appropriate to find out what the regulations are here, and once you have, raise holy hell about your concerns until somebody listens.

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I think the nurse was totally incorrect.

Like TechWife said, my experience was that health care personnel didn't pay much attention to the HIPPA law when an elderly parent was involved. During my mother's final months neither I nor my brother had any trouble at all discussing her care and condition with any health care provider, and I'm almost positive she hadn't signed a HIPPA form with some of them. And often when she did they knew she was writing exactly what I told her to write, and signing what I told her to sign. Now I did tell most of them that my brother and I were her designated health care POAs (which was absolutely true) but no one ever asked to see a copy of the actual document. Now having said that--I suspect some/most of the trouble here is that from what I'm gathering from your post she's either a new patient or hasn't seen the doctor/been to this practice in a very long time. So they probably have no notes or none that come anywhere close to indicating her current condition. For all the nurse knew your mother is 100 percent competent, physically and mentally, and you're an interfering/controlling busybody. But still -- she was wrong saying that she can't note your concerns.

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I think before you call the elder council or whoever it is in your state, you need to think pretty clearly about your dad.  Is it possible he's losing his ability to make decisions for both of them too? if he's not capable of making those decisions, or of overriding her verbal objections to going to the emergency room when she's clearly having emergency neurological symptoms, you may need to decide how far you want to push that.  You can take legal steps for you or your siblings to make those decisions for him, but it will inevitably anger him and alienate him from you, at least temporarily. Legally until some steps are taken your dad has the right to refuse treatment on her behalf.  When she was capable of making those decisions, would she have agreed with him?

We had to push my grandfather into some treatment he initially refused.  Later, when his mind cleared, he was grateful, but it caused some extended family friction for several years because some people thought we should have just left it, and others were all for getting legal authority until his capacity to make those decisions was restored. He definitely had additional years of clear-headed life that he would not have had if no one had intervened.

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You can absolutely tattle. I've done it several times before. Even though I don't have papers signed. The nurse at their clinic will listen and note concerns. One recent instance involved me telling mom needed more physical therapy, the clinic then called her and said they hadn't done a med check in some time and got her scheduled. While she was there they asked about her other (ongling) issues and observed her and low and behold they recommended more PT. Now, she nor my dad would never have gone in to ask about PT since she wasn't doing better yet/declining since she was dismissed from PT several months prior, but they would go in for a routine check in. 

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I haven't read all of the responses, but I have read most of them. In the OP it is stated that the Mother is still driving.  If she has Memory issues with a cell phone and her Medicines and other things, IMO her driving makes her a danger to herself and to others on the road.

These are tricky issues, because elderly people want to keep being independent, but if that puts them and others in danger, it is time to get help for them.

I too hope that you can go with your Mother to her appointment, but also I realize that it is 3 hours each way and that you may not be able to do that and that you might not be able to speak with the doctor, even if you are in the offices of the doctor.

Very complex and a very common problem.

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Yes, it is a very complex problem, and it's aggravated by my father who is a wonderful man and who is actually even working part-time still at age 90!  He has strongly encouraged my mother to see a doctor many times, and offers to take her, but when she tells him no, he leaves it at that because he doesn't want to go against her wishes.  So, there's definitely some disconnectedness there that we don't fully understand and we've been trying to figure out how to address this.

But, I finally made the appointment anyway and my sister (who lives near them) will take my mother.  We've told my mother that it's about her toenails in order to get her there, although I'm sure she won't remember that we even made it.  In any event, she still comes off as doing quite well when you're just in a short, casual conversation with her.  

And yes, she's definitely a danger to herself at least, and possibly to others, which is what I told the nurse before she shut me down.  My mother has been a patient there for over 20 years though, and seen this doctor for probably 10 years, although she goes in as little as possible and the doctor likely does not remember her personally.  

Anyway, you've all confirmed what I believed already about HIPAA  (is it HIPAA or HIPPA?), so I'll call around in order to get an exact legal wording and then call the clinic back again, prepared.

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24 minutes ago, J-rap said:

Yes, it is a very complex problem, and it's aggravated by my father who is a wonderful man and who is actually even working part-time still at age 90!  He has strongly encouraged my mother to see a doctor many times, and offers to take her, but when she tells him no, he leaves it at that because he doesn't want to go against her wishes.  So, there's definitely some disconnectedness there that we don't fully understand and we've been trying to figure out how to address this.

But, I finally made the appointment anyway and my sister (who lives near them) will take my mother.  We've told my mother that it's about her toenails in order to get her there, although I'm sure she won't remember that we even made it.  In any event, she still comes off as doing quite well when you're just in a short, casual conversation with her.  

And yes, she's definitely a danger to herself at least, and possibly to others, which is what I told the nurse before she shut me down.  My mother has been a patient there for over 20 years though, and seen this doctor for probably 10 years, although she goes in as little as possible and the doctor likely does not remember her personally.  

Anyway, you've all confirmed what I believed already about HIPAA  (is it HIPAA or HIPPA?), so I'll call around in order to get an exact legal wording and then call the clinic back again, prepared.

When you contact the doctor tell him/her that your mom “presents well” for casual conversation but actually has trouble with her memory etc. 

Also many doctors will willingly be the authority that will take away car keys for their patients’ and the greater population’s safety. Many elderly will listen to the doctor when they won’t listen to family. 

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