Is telling my mom's longtime friends her diagnosis violating her HIPAA rights?

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Is telling my mom's longtime friends her diagnosis violating her HIPAA rights?

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My 85 yo mom lives alone with her dog. I come over almost daily, but she is lonely. Her friends all live in different cities far away. She rejects going to a senior center for activity and interaction. I suggest that she call or write to her longtime best friends, but she can no longer self-start, and when I offer to help, she says no. I would love to contact a few of her pals and let them know what is going on dementia-wise so they can write snail mail to her without expecting a reply. However, as a former healthcare worker, I am very cognizant of HIPPA. Thoughts?

Alzheimer's & Dementia HIPAA Loneliness Mom

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I think you could contact those friends and let them know you are concerned about Mom as she is lonely and your afraid depressed without actually giving a diagnosis. You can let them know not to take it personally if they don’t hear back from her too as she seems to be having a harder time doing those things these days even when you know hearing from dear friends or family lifts her spirits. You don’t have to discuss any details of her health or diagnosis, if they ask tell them they will have to ask her that and can still let them know she needs them. You need them. You are really just asking them to help you help her because you are concerned. As a side note if you have POA I think you are cleared legally anyway and you aren’t acting as a healthcare professional in this case you are acting as a family member and can legally share whatever you know I think.

The other thing you could do is in the proper moment, maybe after she hears from one of these friends, ask her who she would want contacted should anything happen that lands her in the hospital. That should give you a good idea of who it’s ok to share at least the things you deem appropriate with.

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HIPPA rights ONLY apply in a medical setting. If you think it would be helpful to let her friends know so they can interact with her via "snail mail" and bring a bit of joy to your mom, then so be it.
It will hurt no one and could bring mom much joy and make her feel less lonely.

And I wouldn't give up on trying to get your mom to go to an Adult Daycare Center, as most folks that go there love it.
Most places allow you to bring folks on a trial basis. She won't know if she likes it if she never gives it a try. They do such a great job with those that attend. You couldn't ask for better.

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Your Mom is not going to sue you nor is anyone else. BUT and HOWEVER, her friends are almost certainly aware she is different at this point, and almost certainly aware that--for whatEVER reason--she is no longer capable of being their friend. They will survive that. They are already long distance friends. So, no, I would not reach out to her friends. If they reached out to me I would tell them "I don't know if you are actually able to reach Mom or if you have spoken to her. If you have you may be aware of some difference in her. She is facing some of the aging issues that will come to us all if we live long enough, and I think she is not at this time capable of maintaining long distance relationships. Why don't you just send her some pretty cards; I know she would probably love seeing them." I wouldn't do more. These are, as I said, long distance friends at this point. There is no reason to overshare.

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HIPPA does not apply to a layman in a non-business environment. You will be fine.

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Even my boss a RN with BS degree did not know the HIPPA laws completely. As said it only pertains to health information. One doctor cannot share info with another without ur permission. A Nurse can only share your info with a POA or someone you have stipulated on the HIPPA forms. Not even a spouse if you have not stipulated them or they have POA.

My Mom was very open about her life. So I don't feel she minded me telling her friends how things were. Would ur Mom appreciate you say this? Is Moms birthday near? Maybe do the card thing for that. My Mom hoarded her cards. I got her a box where she kept them. She would take them out and sort them.

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I agree with all of the above, but if you are mom's POA that binds you to keeping any of mom's information private. Anything you do must be as mom would do.

We even see frequent posts here from siblings that are not updated on health information by POA sibling.

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No. It is only for professional caregivers. You can share what you want. You would not believe some photos that family post on social media. Medical staff would frequently remind family if they thought their loved one would want them to share.

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Do as you think she would want you to do.

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If you are the one responsible mainly for your mom's care and well being, and you know her relationship with these friends, there's nothing wrong with reaching out to her friends to inform them of her condition. Especially if your intentions are to try to encourage her friends to spend some time with her. If it were my mom, I'd consider the benefits of telling her friends and the possibility of them coming to see her and it would outweigh my concern about HIPPA. The biggest question is does your mom have a lawyer on standby waiting for you to mess up so he can file a law suit? If not, tell her friends and try to bring her some joy by encouraging them to come visit her. Best of luck, and no matter what, spend as much time with her yourself as possible because that is MOST important!

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No. That law was made for health care personnel. You send them all a note perhaps saying she's having some medical challenges... Here's her address if you wish to send her a card or note.

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This doesn't make sense to me. If a family member has cancer, or a cold, or a broken leg, we routinely inform family and friends of the family member's condition without regard to HIPAA. Why would Dementia make it any different?

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She is a health care provider herself. If not the direct care provider it does not apply.

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"The Privacy Rule applies to all forms of individuals' protected health information, whether electronic, written, or oral. The Security Rule is a Federal law that requires security for health information in electronic form."

HIPAA only applies to covered entities and their business associates.

It does not pertain to private individuals that I can find.

source: https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html

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I would tell her friends . My Dad Forgot to dial a Phone and use his computer . She is Lucky to have you and a Dog .

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I tried discussing this same situation with mom’s friends out of state. They did not believe me, and unfriended me in social media and blocked my calls. Be prepared in case it does not work.

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I don't know that you have to share the exact diagnosis. You might just let them know she is having a hard time, unable to get out much, would love to hear from them. At our age, we are aware that cognitive issues and depression are often at play.

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You are right re HIPPA; just as you would honor HIPPA for other patients , respect your mother's privacy and, honor her wishes. Also, One should always ask ourselves who we are doing something for, the patient
( In this case your mother) or are we doing it for one's own needs ? We always need to self check our own anxieties and needs vs displacing them onto the patient; sometimes this can be done unknowingly and with good intentions.

What do you really think or know to be what your mother would want? It sounds like she has said " no";. so respect that.

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You made a very good point. When I discussed my mom with one of my doctors, he said; "Maybe your mom doesn't want to do "fill in the blank". He was right. My family and I were assuming because we'd want to have more interaction with people that our mom did too. She seems lonely, even says she's lonely sometimes, so we just thought we'd try to help her be more active. She really just wants to sit in her chair and watch tv, and that's ok. Now we just let her know the option is there if she wants us to help her be more active, but it's ok if she doesn't.

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My mom lost complete contact with so many friends, the last 10 years of her life. They were all busy doing what she was doing: Getting old and not being able to contact others vis the internet or even a phone.

She read the obituaries daily, but when the local paper went online only, she was sunk.

You're simply letting her friends know 'how she is' not giving them private health care descriptions. Big, big difference.

And I agree with janice's comments about us putting our fears and anxieties on our folks. Mom would SAY she wished she could talk to an old friend and then when I made that 'happen' she was never happy about it. Probably b/c she wanted to have good memories about these ladies as HS friends, not illness-ridden old women.

Even the one woman my mom felt was her 'bestie'--she died very unexpectedly and when I inquired how long it had been since she had actually seen or talked to this 'best friend'--it had been close to 10 years.

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Ask your mom! I know she has dementia, but that does not mean she is totally unaware. I think she would love to have people keep in touch with her. If they are true friends, they will understand and be there to help too!

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https://www.cdc.gov/phlp/publications/topic/hipaa.html

Hippo doesn't pertain to you:

Covered Entities:

The following types of individuals and organizations are subject to the Privacy Rule and considered covered entities:
Healthcare providers: Every healthcare provider, regardless of size of practice, who electronically transmits health information in connection with certain transactions. These transactions include:
Claims
Benefit eligibility inquiries
Referral authorization requests
Other transactions for which HHS has established standards under the HIPAA Transactions Rule.
Health plans:
Health plans include:
Health, dental, vision, and prescription drug insurers
Health maintenance organizations (HMOs)
Medicare, Medicaid, Medicare+Choice, and Medicare supplement insurers
Long-term care insurers (excluding nursing home fixed-indemnity policies)
Employer-sponsored group health plans
Government- and church-sponsored health plans
Multi-employer health plans
Exception: A group health plan with fewer than 50 participants that is administered solely by the employer that established and maintains the plan is not a covered entity.

Healthcare clearinghouses:

Entities that process nonstandard information they receive from another entity into a standard (i.e., standard format or data content), or vice versa. In most instances, healthcare clearinghouses will receive individually identifiable health information only when they are providing these processing services to a health plan or healthcare provider as a business associate.

Business associates: A person or organization (other than a member of a covered entity’s workforce) using or disclosing individually identifiable health information to perform or provide functions, activities, or services for a covered entity.These functions, activities, or services include:
Claims processing
Data analysis
Utilization review
Billing

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Hippo is Hipaa! LOL

If you don't tell her friends, they might conclude that she is "ghosting" them

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This is between you/your mother and the friends and family you have. If HIPAA was violated for a child discussing health with others, no one in the family would ever know what's going on with the loved one. HIPAA was designed to allow a person to keep a medical provider from sharing health info with anyone other than those designated by patient. That's why the provider gives you form to state who the info can be shared with. It protects providers and prevents them from telling things you don't them to tell.

Go for it. Contact the friends and request some cards/letters or phone calls. Telling them about the dementia will help them if they call and notice things aren't quite right with her recall or comments.

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I agree with the others it really doesn’t apply in this way.

but I’d also like to caution you not to have any false hopes either. I hope you have a different experience than I have, but my Mr. and Mrs. had very close family within five minutes of driving and in seven years they visited twice. Once when they thought she may be dying, the second time when they were celebrating their 70th wedding anniversary.

I begged people who lived far away to send an email to the son who could then read it to his parents - never once did anyone reply.

good luck and God be with you and your big heart.

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You as her daughter are not subject to HIPPA regulations and you may discuss whatever you wish to disclose to family and friends. As a health care worker you should understand that HIPPA was intended to protect a person's medical information from being shared with those that had no right to that info. Case in point patient A is admitted to the hospital and her neighbor has a daughter who works in the hospital on a different unit from where patient A is. The neighbor asks her daughter to find out what is wrong with patient A. The daughter who is a nurse comes to patient A's unit and asks the nurse caring for patient A what her diagnosis is and also the prognosis. She then calls her mother and tells her about patient A. This would be a violation of patient A's rights. Both nurses are violating HIPPA protocols. Only medical personnel directly involved with the patient may discuss her information amongst themselves. The nurse caring for her violated by revealing the patient's info to someone who was not involved in the patient's care, and the other nurse violated by asking for information and then passing it on to someone. Clearly, you as your mother's caregiver can tell friends and family what you want or feel comfortable with without reprisals. I would say though how about your mother, is she cognizant enough to state her wishes about revealing her diagnosis to friends and family? Base your judgment to tell friends upon her need, the need to let them know why she might not be able to respond or not be exactly as she was before. HIPPA does not apply here.

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Wolfpack: Imho, HIPPA regulations are not applicable in this case.

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Good to know that "HIPAA" rights are still important to some people. But you are not a health care institution! You are a daughter. So this is up to you and your mother to decide.

Sounds like she didn't give you a specific reason NOT to share information with her friends. She may be embarrassed about some things and not realize that she still shares some common difficulties with them. She may not want to seem like she's "needy" and asking for attention.

But if you are aware of people with whom she had enjoyable interactions it might be good to re-ignite the friendship (if she's been out of circulation for a while, they may be wondering about her)
Why not (on one of her better days) bring up a name in casual conversation and check her reaction. "Hey, mom do you remember that lady (or couple) who used to go with you and Dad to the.....?" Whatever happened to that lady that you met at the..... Do you know where she ( or they)went after...?. Then, if she shows any interest, write a short note just to "touch base" and let her help you with the wording. If she objects, don't pursue it.

My mother was the social one in our family. I got her stuffed-full address book when she died. Many names and addresses were there from all over the world. I didn't recognize the majority, but those I knew a bit about, got a note from me to the latest address I could find, telling of my mother's death. I got some lovely notes in return. Some seemed really grateful and full of reminiscence. I wished I had written (or she had) when she was still alive.

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You will not be violating her HIPAA rights. However, I do caution you against giving too much detail about your Mom's dementia to your Mom's friends. In other words, write to them as a daughter, not as a medical professional. That means, stay general.

My Mom is lonely also. However, she doesn't want to contact her friends and she doesn't want to see them. She used to occasionally talk to them, however, she considered it too much energy. She needed the face-to-face conversation. She didn't like (and still does not like) Zoom and she had a hard time understanding what people wrote primarily because she couldn't relate to them anymore due to her dementia.

She prefers them to remember her, both in looks and in conversation, as when they got together last.

My Mom was willing to go to Senior day care because she knew no one prior to attendance. She refused to go to the Senior Center because she said, all they talk about is their kids and how they are being treated and grumble about their ailments.

When my Mom went to the Senior day care, there were all levels of people. The first one she went to, many of them slept all day and had to be hand fed. The second one that she went to, had a younger crowd so she enjoyed being there. She found the time there, entertaining. She relayed stories about the gal who ran to the door, each time the external door opened, and the guy who brought a loaf of bread everyday. She chuckled about the gal who would collect all the silverware, napkins and whatnot, and put it in her purse because everyone wanted to know what the lady collected by the end of the day.

If there is a Senior day care available to your Mom, I'd look to see if the program is the right fit.

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Hippa does not apply to you in this situation, but consideration for her privacy does. Helping her reach out to friends and family if she wants to or if in your opinion it would benefit her could be a good thing. I just would recommend that you not go into great detail about her medical concerns. There is no point to doing that and it could do harm - especially if posted on sites like Facebook, etc.

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I'm the caregiver for an older relative with dementia. When she moved from independent living to memory care, I cleared out her apartment and took her address book with me. Then I wrote short notes to the friends she'd mentioned most frequently over the years, telling them that I was writing because they'd been so important to her, and I wanted to let them know what was going on. Every one of them told me how much they appreciated it. I'm sure it's tremendously hard for them to know that this is happening to a lifelong friend, but I could see how it would be even harder to not know what had happened to her. None of my relative's friends live close enough to visit her -- the nearest is four states away -- and my relative isn't able to talk on the phone any more, but now that her friends know, they do what they can to support her, sending cards and notes and telling me they keep her in their prayers. In other words, I think your instincts -- i.e., to let them know -- are right on, and the fact that you're reaching out to them in itself lets them know how important they were to your mother. Best wishes -- this is a hard journey, but what you're doing really matters.

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This is personal. You can tell anyone you would like to. To my knowledge only those in the medical field, home care companies or facilities are bound by HIPPA regulations.

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Like everyone else said...doesn't apply.

Funny story, a woman at my church has Alzheimer's and asked her family not to tell anyone. They respected her wishes, but she started posting it on Facebook and even spoke up during a prayer one time about it. Later, I asked her son a question (since my mother has the same) and he got very upset with me..."How do you know that!" he demanded, I wasn't aware that she asked for it to be kept quiet, she told me about it on Facebook. The disease is unpredictable. My mom doesn't believe she has it, she thinks everything is fine and she wants a new car.

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😂

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Just did this at Christmas. Mom is in kidney failure, so dementia symptoms are hit/miss solely due to toxins building in her body.

I let moms friends know hospice had begun, can’t really work phone any longer (conversation lasts about 2 mins anyway)
I asked for Xmas cards to brighten up her day, but not to talk about her situation, I wanted newsy gossipy holiday greetings! Not weepy “thinking of you” that would remind her of her situation. Her friends sent cards and pictures. They helped, they gave her something to look at and hopefully reminisce. She seemed to like them.

couple friends continue to pop cards in the mail, which is nice

I’d give her one or two a day rather than right when they arrived. I’d open the envelope for her so it wasn’t a chore

her friends were all glad they had an update on why she’d gone radio silent

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Is telling my mom's longtime friends her diagnosis violating her HIPAA rights?

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