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
