I have several patients in either skilled nursing or nursing homes. I became involved when families contacted me because they feel their concerns were not being heard or suggestions being acted on. My job is to remove barriers, act as a neutral intermediary and make sure the appropriate care is given.
Part of my work is to speak with medical and case management staff. The family will have explained to me the frustration of asking for medical care or better physical care and not getting any action. When I speak with the staff, I will be told how much is being done and how they have listened to the families concerns. Neither feels heard.
I know I am making in roads when the case manager will confide in me about how pushy the family is or ask me is there something wrong with a specific family member. I have gotten the question asked, does the person have problems? The first time I was asked this question, I was taken back. But now, I read it as frustration and a breakdown in communication. My role is to help in opening the channels to better communication.
The other day , I was asked the question again and I started thinking, how does this question come up? How has this dynamic evolved between families and staff? What is the origin?
So here is my thinking. A person is placed in a facility because they are unable to take care of themselves at home whether it is acute or long term. The family does not feel they are giving up their rights to be involved or make decisions. The facility with its rules and regulations(many medicare based) believe they are the ones guiding the medical and physical care.
There is a nebulous area as to who is in charge of care. The family offers input , expects to be heard but is the facility necessarily obligated to accept the suggestions? I would think ethically yes, but legally and medically the answer is probably no. My observations are the facilities feel it is their responsibility for care. Most facilities want the family input but only to a point.
It is an unusual situation because families are paying a monthly fee, depending on the state anywhere from $4,000-16,000 a month. Who is the customer and what rights are there?
It is very frustrating for families because there is never a conversation about who is in charge of overall care. Nobody says on admission, we are now making the decisions. Some facilities are more user friendly and do listen. In those facilities, what I find is some suggestions are accepted while others fall by the wayside.
In the end, what I tell families is, keep pushing and don’t backdown. I also tell them that sometimes compromise is necessary but not when it comes to medical care or hygiene. In my conversations with the facility staff, I ask to listen to the family’s needs and don’t make promises you aren’t going to keep.