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Confidentiality Beyond the Agreement Signed at Admission

Privacy the Right That Needs to Be Protected

· Confidentiality,Dementia,Caregiver

Mary was anticipating seeing her husband Gregory who had just moved into the nursing home. Gregory was acclimating well but was struggling to remember where the bathroom was in his room, causing him to have frequent incontinent accidents throughout the day.

When Mary entered the room she noticed a strong odor and realized that Gregory would need help from staff. Mary walked across the hall and asked a nursing assistant for help. When Mary got back to Gregory’s room, she began to prep clean clothing for him while waiting for staff assistance. Just then she overheard a female voice scream down the hall, “Gregory pooped in his pants. Can anyone go help his wife? I’ve got Sharon on the toilet right now!”

Mary was aghast at what she was hearing. How could her husband's privacy be so violated? How could staff call out such a confidential care measure and scream it for the whole unit to hear? Wasn’t there a better way to get help in this situation?

A few days earlier Mary knew she had been labeled a “complainer” by staff when a nursing assistant said, “Oh yeah, you're the one that complained that we were talking too loudly about other residents at the nursing station”. Fearful of retribution, Mary hesitated to address future issue with staff, so she bit her tongue when help finally arrived. She fought back the tears and left immediately after Gregory was cleaned up. In her car, she cried in embarrassment, for herself and for Gregory.

Families sign numerous forms upon move in that pertained to confidentiality, resident rights, privacy issues and the almighty H.I.P.P.A. regulations. Frustrations arise when staff themselves do not abide by them, using excuses such as “all the residents here have dementia and do not understand what is being said anyway.”

When management does not act to protect the privacy of the families that bring legitimate complaints to their attention, labeling them as “complainers” to other staff members, they do not model a value of privacy and confidentiality.

It is imperative for staff to make all of their residents and their families “look good”. This is their most important job as it can ensure that residents rights and privacy are protected, as well as keeping them out of a place of shame and embarrassment. Although people in a particular area of a long term community may be living with dementia, that in no way means that they do not understand what is going on when their privacy is being violated or the emotion that comes hand in hand with the callous remarks of their bodily functions.

Blanket statements used to excuse such behavior by staff perpetuates an environment of discontent and distrust. Families want to feel heard when they question care measures, yet often fear bringing them to the attention of management because they don’t want to be labeled the “complainer” or have retribution taken out on their loved one.
When families make the heart-wrenching decision to place a loved one in care, they must relinquish control and allow for staff to take over. When families visit, they want to feel content by what they see and hear. If they become concerned by things during visits, they must leave doubly concerned about what happens when they are not around.

We must remember that we, the staff, are there to do a job. We have been entrusted by vulnerable people who want to believe that their loved ones are being cared for, provided for and shown the dignity that they deserve. When staff at all levels introduce doubt and fear into a family's mind, they have no one to blame but themselves.

Caregiving is a gift you are given. You have been entrusted with someone's life and all of their private issues. There is no job more precious than the provision of privacy, confidentiality and quality care for those who cannot request this for themselves.

~ Cathy Braxton

We recently did a Facebook Live on this topic. Part of our Dementia Real Life series. The question was sent to us by a caregiver in a long term care community.

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