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zmchipmunk21 Asked March 2022

Is this a HIPAA violation? Former caregivers visiting after an EOL diagnosis?

My mom who is in a SNF was recently mistakenly(?) diagnosed with KTU. The next day she was diagnosed with "pressure sores." Less than 36 hours later she was visited by 4 former caregivers who no longer work in the SNF Mom is in. Coincidence? Or was her medical information shared by current SNF employees? My brother and I are the only persons listed to receive Mom's medical information.


Today I was informed one of the "former employees" who visited had taken a picture of them with my Mom and posted it to her FB page. I just find this so wrong, am I overreacting again?

NYDaughterInLaw Mar 2022
Sue them? Good grief! What *actual* damage can poster prove in a court of law?

Chipmunk - the caregiver community is typically small with word spreading fast when someone is nearing the end of life. It will be very, very, very expensive and time consuming for you to prove that anyone violated HIPAA and that your mother was damaged by a violation even if it happened.

Forget Facebook! Focus on the fact that four people visited her - showed her warmth and kindness - at her end of life. Thank everyone at your mother's SNF for their care and attention. You will reap what you sow.
zmchipmunk21 Apr 2022
I'm confused? "Sue them"? I don't think I ever stated that, did I? Where did that come from please?
I understand that unless someone would come forward there is no legal standing.
I constantly thank the staff who currently care for Mom at her SNF for the compassion and care they give to Mom. I have no problem with her past caregivers visiting her. My heart breaks that they think they knew the woman she was who would never have wanted a picture of her shared on social media in a nursing home bed, gown, with supplemental oxygen. It is saddening that she may be remembered as such when this is not what she would have wanted. Now I deal with the question from Mom "am I dying?"
It was a possibly an "incorrect diagnosis" initially which may have been the info shared to former caregivers? The call my brother and I received was she had developed a KTU. The following day the wound doctor diagnosed it as a "pressure sore" (bed sore). She still has many other medical conditions but I continue to hope she will improve.
Lymie61 Mar 2022
Before reading the responses below I want to go with my gut here. First I can totally understand your initial concern about the sharing of medical information, you have probably protected that for her for a long time because she didn’t want people knowing she had… But when you think about it at this point she is in a NH and at the end of her life, even if medical professionals are sharing information with other medical professionals no longer attached to her case how can that harm her? These are people she knows, likes, people who have taken care of her and been a part of the knowledgeable professionals about her case.

For me the fact that these big hearted people care enough about your mom to go visit her on their days off is so special and heartwarming I can’t come up with the words. The more people she knows and likes going to visit and especially people who understand any special intricacies of visiting (my mom is very hard of hearing and has aphasia for instance) the better! Filling my moms day with cheer when she is confined to bed and her world has become so small and limited is what I pray for. The staff at this NH obviously loves and cares for your mom it’s just as likely that they remain in touch and current staff knew that these former members wanted to visit and or wanted to stay apprised of how she was doing and either were told in casual conversation that she was having these new painful issues wanted to go cheer her up or simply had planned the visit and timing was just a coincidence. Either way what a blessing for mom to have a welcome distraction from her pain. I wouldn’t want to discourage anyone from visiting unless of course they are unwanted by mom, at this point. In fact when it comes to new medical issues especially things that nurses do the most care for like bed sores the more collective experience the better, I can’t count the times that a nurse has had a new way of doing something based on their knowledge and experience that worked much better than the baseline way of doing it. When they like their patient as much as they apparently like your mom and feel comfortable with and welcomed by the family nurses can be a wealth of knowledge and extra care. Why waste your time and emotions getting worked up about what may or may not have happened, fighting for something that just isn’t as important now over welcoming all the care you can get and letting it warm your heart that mom is being embraced by so many people and isn’t alone when you can’t be there. Take a deep breath and welcome the support for you, your brother and mom.

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PeggySue2020 Mar 2022
It would be common for current employees to share with ex employees what’s going on. As in How’s Betty, she was my favorite. Then being told Betty ain’t doing doing so good even by snf standards. The ex caregivers it seems just paid her a visit because she stood out to them in a positive way.

So yes, it could be a technical violation of hippa, but it’s also a testimony to how much people do care enough personally to show up.
zmchipmunk21 Mar 2022
Thank you, I'm REALLY trying to view it that way. There's really no way to find out who released her medical information to the people outside of Mom's list of contacts. I'm just frustrated that people think it's ok to take pictures of the elderly with the intention of posting on their social media pages...for what reason? I recently had to stop a plan from the facility activities director to use a photo of Mom on their business site so I'm probably more sensitive with this matter. I clearly stated in her admittance packet her photo/likeness was NOT to be used in any advertisement or social media but they were planning to do it anyway.
KPWCSC Mar 2022
I am a private person too and have had heated discussions with family members who think it is ok to post photos of me on their Facebook pages without my permission. I always insist they come down. Taking a photo for a memory is a sweet thought but posting on social media is totally wrong. Possible HIPAA violations are difficult to prove but a photo on social media is a blatant violation within this context that should be brought to the attention of the administration and taken down.
PeggySue2020 Mar 2022
An ex employee put up the fb. They no longer work for the snf, so the snf can’t discipline them.

Id go to the fb pages owner and respectfully request that the images be taken down, as you prefer to see them only in private.
ACaringDaughter Mar 2022
How sad.

Someone who knows your mom and cares about her enough to visit, is accused by you of wrongdoing for a truly petty reason. I bet when you put her there you justified the decision thinking she would have interactions and people around her and she wouldn’t be lonely.

isn’t it possible that the former care workers were there at the facility visiting all their former patients out of kindness? How nice, especially for the people who have only rare visits from family members.

Instead of being grateful for the interaction and entertainment for your mom, you want to sue? How will that help your mom? What are the damages that you expect to recover? How could this help your mom? Are you ready to move her before you file suit?

From whom do you demand this privacy? She is in a nursing home, with a multitude of caregivers all with access to her records. Family and former friends even readers of this forum would expect, without a shred of further information that she is EOL or why would she be in a SNL?
zmchipmunk21 Apr 2022
JoAnn29 Mar 2022
What I see hear is an aide hearing Mom had KTU called former caregivers to tell them "Mrs. S is not doing well" that is not a HIPPA violation. The violation maybe if the person mentioned she had KTU. I agree that you should just let this go. Seems Mom was well loved and it was so nice her former caregivers came to visit her.

My daughter worked at the local Hospital. She got a list of patients every day. Some people I knew but she could not tell me they were there. If I asked, she could confirm they were there.
zmchipmunk21 Apr 2022
Thanks for your response. I am understanding that former caregivers form bonds with their clients. I know there is no legal standing, this makes me sad as there are so many restraints in my state "protecting the elderly" that do not. I'm glad your daughter is ethical and does not release medical information. This has caused a severe reaction to my sibling who now deals with some emotional issues that people who are not family suddenly show up and has Mom asking "am I dying?"
Tandemfun4us Mar 2022
The people who care for my mom all say she is so sweet. The staff in the facility she lives in tell me that mom is well liked. My mom has very little memory of her day, but her face lights up with joy when someone talks to her. She sometimes goes along- assuming she knows the person, but sometimes she will ask “remind me again-who are you?” I am grateful for the people who have thought of her and make their presence known to her with visits. Mom is very private and very much an introvert. She is best with one/one communication and visitors. When I was in my 20’s, I worked in a nursing home and I became very close to some of the residents. Compassion is a gift and the people I cared for responded to my interactions. I heard other caregivers admonish the elderly but not treat them poorly, however, the words took away the joy of the elderly. They. Can. Not. Help. Their. Condition. I also saw wordless care for the elderly and my heart hurt for the quiet faces of those being routinely ignored and not spoken to. I know I was young and not jaded at that time, but compassion and kindness is a beautiful thing and I was glad to have it at that time. Over time My jadedness and busyness has caused me to be short with my mom and I regret it. I am reminded of my mom’s joy with friendly caring people on how to be compassionate and kind again. Additionally, it is also a normal thing to take pictures of those we care for and to remember and honor them. I am grateful that mom has compassionate and kind people around her. I believe you feel differently but remember, she still feels love and care from others -and!- they have expressed it to her personally. That takes effort and time when they could have only known and not shared themselves with her. You and I are blessed and fortunate that other people love and care for our moms. :):)
zmchipmunk21 Apr 2022
Thanks for responding with your experience! I believe my Mom to be a blessing to those she comes in contact with. Mom would not have wanted a photo of her in a nursing home bed, gown and on oxygen being shared on FB. I feel I have failed her. Admittedly I am not a fan of sharing photos on social media....it's just my personal preference. Mom asked me to protect her from such things and I've failed.
lealonnie1 Mar 2022
Yes, you are overreacting, IMO.

What is your mother doing living in a SNF to begin with if you don't want her to interact with other people or caregivers who care about her? What's the big deal who knows about her 'medical information' when she's living IN a medical environment, for petesake?

When my folks lived in AL and dad was dying, the caregivers were lined up to come into his room to see him, kiss him, say goodbye to him. Even former employees came back to say goodbye, meaning, yes, someone TOLD them dad was dying! Tears were running down his face out of appreciation for all the love he was being shown. Tears were running down the CGs faces too, for what it's worth. Human beings that work in the care industry wind up having deep rooted feelings for the patients they care for. It's what defines humanity.

Same was true with my mother who lived in the same ALF but in the Memory Care bldg for the past nearly 3 years. The caregivers loved her and spent time after their shifts ended sitting with her! If they were privy to her medical info that they weren't entitled to, for some odd reason, or took a photo of her, WHO CARES? Also, who gives a flying fig if HIPPA violations occurred? The woman was dying; HIPPA and all the rest of the BS flew out her window and all that mattered was love and holding her hand and making sure she was feeling no pain or discomfort. In truth, HIPPA regulations over the years wound up aggravating the snot out of me more often than doing something useful for me.

The 'former employee' who took a picture of them together when visiting your mom and posted it on her FB page was doing something out of LOVE and pride, I think. Not for some sinister reason or as an invasion of your privacy.

Let it go, that's my suggestion, and save your angst for something worthy of it.
zmchipmunk21 Apr 2022
thanks for your response. The problem is the initial diagnosis was an EOL indication which I believe was shared. Then a doctor actually saw Mom and diagnosed as a "pressure wound", not a KTU. (Quite frankly I'm not sure anyone knows but Mom refuses to go to a hospital). End result is now the family is left dealing with questions from Mom if she is dying (which we hope isn't the case) and a former employee posting picture of Mom in bed, gown and on oxygen on social media which Mom would be horrified by. I'm an old soul who believes in respect in asking before I would post such a picture on social media. How long until someone tells Mom such a picture exists and then family needs to deal with those questions as well?
AliBoBali Mar 2022
I think posting pics of clients to their personal social media is over the line. Some professions forbid it through their code of ethics. (I'm currently studying ABA Psych and it's not allowed). I think people just want to create content, a moment from their own lives to share with others, and don't think to ask for permission from all relevant parties. You could message them on Facebook and kindly ask them to remove it. I imagine they would.
zmchipmunk21 Apr 2022
Mom was a former client, the caregivers in this area tend to "jump around" to wherever the pay/benefits are better. It is my belief this former caregiver may have wanted to do just as you mention...create content/a moment of "look at me". It upsets me she chose to use my mother (in a condition Mom would not have wanted shared) to do so. I honestly don't believe this individual would think they did anything wrong. Maybe in time, I can have a civil discussion but that moment is not now.
freqflyer Mar 2022
zmchipmunk21, it could have been a coincidence. The former caregivers could have also visited other residents at the senior nursing facility. Was your Mom able to relate how she felt seeing them? If it had brighten her day, then it was positive.

As for the photo, no you are not overreacting. My Dad's caregiver did the same thing. I kept quiet but on the inside I was livid.
zmchipmunk21 Apr 2022
Thanks for understanding. I do not believe it was a coincidence but I could be wrong. Mom has not mentioned these particular visitors in name. She's received visits and cards from other past caregivers and is now asking me "am I dying?". Thanks also for honestly sharing your feelings about a similar situation happening in your life. Mom would be horrified to learn a picture of her in a nursing home, clothed in a nightgown was shared on social media...at least the Mom I knew 10 years ago.
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