Dear Barbara, I have a question for you: When one of our residents dies, how should we handle telling other residents? This is what happened this past week:
Resident A and B were very close. They always held hands, liked to sit together and watch the birdcage. They were very good friends. They were on our Alzheimer's/ Dementia unit.
Resident A had a stroke and was confined to her bed and within two days, she died. Resident B seemed lonely and looking for her friend.
According to HIPPA regulations, we are not to tell others on the unit about the person who has passed away. Another staff person (a senior staff person) and I (Chaplain) felt that we should let Resident B know that her friend had died. I took her aside and explained it to her. She was very appreciative that I told her and wished we had told her sooner "so I could have gone in and held her hand and comforted her."
Nursing staff said we should not have done this. I feel there are times when residents have become close to someone on the floor and should be told. What do you suggest? Were we wrong in telling her? What is the right procedure?
What a sad story. Sad in so many ways. One, that we have become so regulated we do not have the discretion to be humane. Another reason is that this woman did not have the opportunity to say goodbye. And yet another that you were reprimanded for good supportive care.
When are we going to stop treating diseases that people have and start treating people that have diseases? When we are treating people, we see and respond, not to a set of rules and regulations, but to suffering — suffering medically, suffering mentally, emotionally, and spiritually. And we address those needs with compassion.
From my above statement, it is obvious that I think you did the correct action by supportively telling the woman of her friend's death. The fact that she has dementia and they were both on an Alzheimer's unit presents another challenge, not insurmountable but still a challenge. We often discount people's humanity when dementia is in the picture (much to our discredit).
Of course each situation needs to be individually addressed but in the case of a lot of people with dementia, tell them about the death of someone close ONCE. Let them feel and express their emotions or lack of and then move on. There is no supportive reason to keep reminding them of the death.
I don’t think you need to make a public announcement to all residents of a nursing facility, (dementia ward or other) that Mr. A. has died. I do think for those residents who were friends, and will know that Mr. A is missing, we, in our humanity, need to tell them their friend has died. We then have the opportunity to support them in their grief.
The HIPPA regulation, if accurate, is so reminiscent of putting a dying person at the end of the hospital corridor, of removing the body when no one can see, of the "don't tell mom" approach so many families and facilities have.
We are such a death-denying society. We don’t accept it. We fight it. We fear it and our medical and regulatory approach often reflects that very denial.
Educate, educate, educate our healthcare professionals, our regulators, and the community on the difference between end of life care and getting well care. Educate not only on the technicalities of running and managing an institution but on the humanity of care, the personhood of care.
Something More... about Humanity in Caring for the Alzheimer's Patient
Hospice is taking on more and more patients with dementia. The dying process with dementia is different than the normal, natural dying process from old age or disease. I wrote a booklet specifically on this process, How Do I Know You? Dementia At End Of Life
5 comments
Christine A. Smith
So … I read through a HIPAA report by the National Institute of Health about “Health Insurance Portability and Accountability Act”.
Is anyone like me? It’s just been an acronym in my mind for years. I thought the words ‘information’ and ‘privacy’ were part of it. So, thank YOU, Barbara Karnes, for giving me an excuse for a tutorial!
Although I practiced what I understood of HIPAA diligently as a caregiver, this is the first time I’ve explored the original intent of this “Health Insurance” Act of 1996. [This entry was updated February of this year.]
Portions refer to NOT revealing health coverage gaps to everyone company or provider that asks. Other parts endeavor to stop fraud and elder abuse.
There are examples, in the NIH article about penalties, re-training, policy reviews, fines, and jail-time for negligent or nefarious incidents. THAT would be off-putting for staff who perceive that a line has been crossed.
The NIH site also lists ways in which compliance to HIPAA has been harmful. Just one example is families desperate to locate loved ones during disasters. Hospital staff will not reveal IF a name has been checked in. I DO understand the harm of telling strangers on the phone if so-n-so is in the building.
All in all: is a memory care a community? or is it a facility?
Community might say: Neighbors should know they have died.
Facility might say: These policies & procedures were put in place to guide & protect the employees & the reputation of this facility, as well as the resident.
Do’s & don’t’s intended to thwart wrong-doing have hand-cuffed those intent upon doing right.
I DID find one bullet-point that could be bullet-proof. [DISCLAIMER: I’M A LEARNER, NOT A LAWYER.] Under the section of “Privacy Rule” are these statements: “any other disclosures of protected health information (PHI) require the covered entity to obtain prior written authorization … make a reasonable effort to share only the minimum necessary information … notify individuals of PHI use … keep track of disclosures … document privacy policies and procedures.”
Does the facility or community have a policy like THIS in place? Obtaining permission from family/friend, making notes of who was present, where they met, what was shared AND attaching a dated-copy of the policy & procedures followed … although tedious … could be the paper-trail to success for benefit all involved.
I did discover one bit that vaguely referred to EOL: wait 50 years, then publicly release insurance or treatment documents. NOT helpful when dearest friends are separated, I know.
I’ll end with evidence that this is not an isolated incident according to NIH: “the US Government Accountability Office found that healthcare providers were uncertain about their legal privacy responsibilities and often responded with an overly-guarded approach to disclosing information.”
Is it fear that rules or is it friendship that overrules?
References excerpted from https://www.ncbi.nlm.nih.gov/books/NBK500019/
———
BK Books replied:
Hi Christine, You did a lot of research. It certainly shows how confusing it is for healthcare providers to “follow the rules”. Thank you and blessings. Barbara
So … I read through a HIPAA report by the National Institute of Health about “Health Insurance Portability and Accountability Act”.
Is anyone like me? It’s just been an acronym in my mind for years. I thought the words ‘information’ and ‘privacy’ were part of it. So, thank YOU, Barbara Karnes, for giving me an excuse for a tutorial!
Although I practiced what I understood of HIPAA diligently as a caregiver, this is the first time I’ve explored the original intent of this “Health Insurance” Act of 1996. [This entry was updated February of this year.]
Portions refer to NOT revealing health coverage gaps to everyone company or provider that asks. Other parts endeavor to stop fraud and elder abuse.
There are examples, in the NIH article about penalties, re-training, policy reviews, fines, and jail-time for negligent or nefarious incidents. THAT would be off-putting for staff who perceive that a line has been crossed.
The NIH site also lists ways in which compliance to HIPAA has been harmful. Just one example is families desperate to locate loved ones during disasters. Hospital staff will not reveal IF a name has been checked in. I DO understand the harm of telling strangers on the phone if so-n-so is in the building.
All in all: is a memory care a community? or is it a facility?
Community might say: Neighbors should know they have died.
Facility might say: These policies & procedures were put in place to guide & protect the employees & the reputation of this facility, as well as the resident.
Do’s & don’t’s intended to thwart wrong-doing have hand-cuffed those intent upon doing right.
I DID find one bullet-point that could be bullet-proof. [DISCLAIMER: I’M A LEARNER, NOT A LAWYER.] Under the section of “Privacy Rule” are these statements: “any other disclosures of protected health information (PHI) require the covered entity to obtain prior written authorization … make a reasonable effort to share only the minimum necessary information … notify individuals of PHI use … keep track of disclosures … document privacy policies and procedures.”
Does the facility or community have a policy like THIS in place? Obtaining permission from family/friend, making notes of who was present, where they met, what was shared AND attaching a dated-copy of the policy & procedures followed … although tedious … could be the paper-trail to success for benefit all involved.
I did discover one bit that vaguely referred to EOL: wait 50 years, then publicly release insurance or treatment documents. NOT helpful when dearest friends are separated, I know.
I’ll end with evidence that this is not an isolated incident according to NIH: “the US Government Accountability Office found that healthcare providers were uncertain about their legal privacy responsibilities and often responded with an overly-guarded approach to disclosing information.”
Is it fear that rules or is it friendship that overrules?
References excerpted from https://www.ncbi.nlm.nih.gov/books/NBK500019/
———
BK Books replied:
Hi Christine, You did a lot of research. It certainly shows how confusing it is for healthcare providers to “follow the rules”. Thank you and blessings. Barbara
Deborah
I greatly appreciate your emphasis on humanity and compassion in this topic. The regulated, business side of end of life care needs to be reined in, allowing the sacred mystery to be lovingly supported.
You are a blessing!
———
BK Books replied:
Hi Deborah, We tend to put so much emphasis on the disease and how to address it while forgetting to consider the person who has the disease. Let’s hope that people like us speaking out will affect the perspective. Blessings! Barbara
I greatly appreciate your emphasis on humanity and compassion in this topic. The regulated, business side of end of life care needs to be reined in, allowing the sacred mystery to be lovingly supported.
You are a blessing!
———
BK Books replied:
Hi Deborah, We tend to put so much emphasis on the disease and how to address it while forgetting to consider the person who has the disease. Let’s hope that people like us speaking out will affect the perspective. Blessings! Barbara
Barb Schaus
Barbara, I wholeheartedly agree with all you’ve written. I have an Aunt I’m guardian for with dementia. She has a close friend who also has dementia. I think these ladies should definitely be told if the other dies. My Aunt would definitely miss her friend and would be so confused if not given information. It’s a wonderful facility, and I pray they accommodate our wishes. Thanks for your wonderful books. Have used them often. Bless you!
———
BK Books replied:
Hi Barb, thank you for sharing. Blessings to you and your aunt! Barbara
Barbara, I wholeheartedly agree with all you’ve written. I have an Aunt I’m guardian for with dementia. She has a close friend who also has dementia. I think these ladies should definitely be told if the other dies. My Aunt would definitely miss her friend and would be so confused if not given information. It’s a wonderful facility, and I pray they accommodate our wishes. Thanks for your wonderful books. Have used them often. Bless you!
———
BK Books replied:
Hi Barb, thank you for sharing. Blessings to you and your aunt! Barbara
Sandi
Hi, Barbara. I appreciate your sensibility and professionalism so much. I agree with every single comment you made about this sad situation. Regulatory nonsense interferes with the family’s ability to communicate with medical professionals about their loved ones at any stage of life or impending death. It’s more than sad, it’s unjust. I wonder how things will ever get better. You are making a big difference, though. Thank you so much.
———
BK Books replied:
Thank you Sandi. Blessings! Barbara
Hi, Barbara. I appreciate your sensibility and professionalism so much. I agree with every single comment you made about this sad situation. Regulatory nonsense interferes with the family’s ability to communicate with medical professionals about their loved ones at any stage of life or impending death. It’s more than sad, it’s unjust. I wonder how things will ever get better. You are making a big difference, though. Thank you so much.
———
BK Books replied:
Thank you Sandi. Blessings! Barbara
Toni Reitter
Perhaps I misunderstand, but as far as I know HIPAA does not specifically say you cannot inform someone of a person’s death. It does give you leeway to inform family and close friends – just not with the DETAILS of the death, but you should for sure be able to tell a friend and resident of the facility that the person has passed away. How cruel not to do so!
———
BK Books replied:
Thank you for clarification. Blessings! Barbara
Perhaps I misunderstand, but as far as I know HIPAA does not specifically say you cannot inform someone of a person’s death. It does give you leeway to inform family and close friends – just not with the DETAILS of the death, but you should for sure be able to tell a friend and resident of the facility that the person has passed away. How cruel not to do so!
———
BK Books replied:
Thank you for clarification. Blessings! Barbara