Patient with Dementia's Right to Refusal

Nurses Safety

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Hello! I have a bit of an issue. There are certain patients I often take care of who have profound dementia--to the point of requiring hand-over-hand assistance for eating, unable to consistently reposition self in bed, etc--in a SNF.

They regularly refuse care, though clearly have no concept of what they are refusing (e.g. attempting to reposition in bed is met with "Go back to sleep before I spank you") Some will become physically violent if this avenue is pursued. Others will protest the action directly, but again only because they think the caregiver is someone they are not, they think they are somewhere they are not, or they don't understand their physical situation.

So here's my dilemma... On the one hand, my staff and I need to care for these people. On the other hand patients have the right to refuse. On yet another hand, they have no idea what they're refusing--I had one patient refuse their medications once because they thought the water cup was the pill they had to swallow and began screaming that staff was attempting to assassinate them by trying to make them choke to death with huge pills. The company regularly reinforces the fact that we cannot force patients to do something they don't want to do. However, sometimes families get upset and say "They don't even know what they're doing. Why can't you just ignore it and roll them/change them/get a medication patch they can't refuse/whatever?" Staff gets frustrated with the situation when they truly want to care for people, yet these dementia patients sometimes lie in their own incontinence for hours on end. We try to medicate them, they refuse so it does nothing. Due to "right to refuse" we cannot give an injectable or topical/patch for the purpose of bypassing their right to refuse. Then they refuse to be repositioned, then develop a pressure sore, and we get blamed for it because "there is never an acceptable reason for a pressure sore." It's a helpless feeling, and then to get blamed, be told our "numbers" are bad, have to do audits, mandatory training, etc to atone for injuries sustained when the only solution is one the patient themselves refuses...it's a horrible feeling.

I guess I'm just frustrated because if this is truly the way it is, perhaps the "right to refuse" pendulum has swung too far.

Does anyone have any constructive advice? Perhaps there are better ways to go about this? Any ideas for increasing compliance? Anyone care to add to my rant? ;)

For the record, I try most standard approaches, and this is geared more for those that you can re-approach over and over in standard ways and will still refuse to be touched for hours. Please help me care for these patients who cannot care for themselves! ...or at least help me find some peace with myself in this situation--a new outlook or something!

thanks

Specializes in Emergency Room.

I give great respect to those who care for patients with advanced dementia. Ideally, I only deal with such patients for a few hours. If we provide meds, usually they are IV/IM. In the ER, when we receive patients with advanced dementia they usually have family or close friends present. There presence are wonders. They keep pt entertained and normally in bed and not pulling on ivs or wires. They can help us identify physical, emotional, and changes in mental status. They influence greatly the demented patients cooperation level.

Kinda off topic...

Few shifts ago we had someone drop off their older relative to the Er lobby without coming in and seeing he gets registered and evaluated in the ER. The cutest older man, when approached he states he was there waiting for his plane to land because he was "going to see family in the old country". When asked, he denied every single complaint besides hunger and thirst. Asked him if he wanted to talk to a doctor - says no. I was able to get him to take me up on the offer of "free blood pressure and blood sugar check while he waited". Everything was WNL. Gave him a boxed lunch and juice and had him go back out to the lobby. I ended up getting our director involved and she called the pd. Then it was shift change, still unsure of his outcome.

Hate to assume someone was trying to use us as an adult sitting service. I'm going to have to follow up with our director.

Specializes in Hospice / Psych / RNAC.

In my area SNFs are for short stay patients (skilled beds). It sounds like yours is long term care with some skilled beds. Is it a facility that houses both?

tewdles was right on with response.

The one LTC place I worked, the first day on the job as charge I'm sitting at the nurses station and suddenly there are 4 CNAs literally dragging this women, who was screaming, to the shower. I stopped everyone and had them take the resident back to her room. Come to find out, the family was insisting that their mother be showered. So I told the CNAs to give her a bed bath prn (it's not like these people are out running a marathon). I called the daughters and had a meeting with them. I dug up lots of research on stuff that would get my message across and in the end the daughters agreed that it was not a positive thing to have their mother dragged to the shower against her will (only 1 daughter even knew they had to do that way). This had been going on for a year. Education people; remember, we are teachers as well.

:yes:

There's a fine line of providing necessary care and right to refuse with dementia pts. I have worked with moderate to severe dementia pts in a lock down unit for 5+ yrs. About 12 out of 30 are incapable of feeding themselves at all if that gives you an idea. We have several that despite every trick in the book, psych intervention, meds, etc still scream, curse, and hit staff during any type of cares. We can't let them sit in bm forever or never get washed bc of their behaviors. That doesn't mean we don't attempt to continue trying to distract, console, comfort, convince, etc. With refusals document document document. Everything you and CNAs tried, what the res did/stated. Ask for advice from your manager/supervisor and find out exactly what they want you to do in these situations.

With constant med refusals find out what the requirements are where you practice to be able to conceal meds or get a Jarvis order. We have several that get their meds concealed in insure, ice cream, or oatmeal. We had one once we had to hide crushed meds under the yolk in a cut hard boiled egg. We have another that gets her one psych med concealed in candy.

I know dementia pts are never easy, it takes special patience to care for them. Best of luck!

I was discussing this with fellow nurses and the unit secretary today about a patient in the hospital who wanted to leave but was so confused she was only oriented to herself, lives alone, and had no ride. It is our responsibility as professionals to provide care and respecting a right to refuse treatment, the patient must have capacity. I believe that to re-approach and also as you have described, but as you point out that sometimes even combative patients must have cares. Ultimately we and the facility are liable for neglect, in my mind, if the patient does not have capacity and we fail to protect and provide care from them. This is not the same as a person of sound mind refusing a treatment or a blood draw or a new IV or a person of sound mind going home AMA. If the patient is alert and oriented X 4 then they have capacity to refuse treatments. Otherwise, the nurse has a responsibility to find a way to provide humane, respectful and legal care. I have not found in my experience that all patients have a right to refuse everything at any time and this lets us off the hook then if we chart it and notify the doctor. The doctor will call me on it every time and we will find a plan to help the patients get the help they need to overcome their acute confusion as well as in long term dementia patients.

If the patient is alert and oriented X 4 then they have capacity to refuse treatments.

Once again, I just want to point out that there is a lot more to mental capacity to make informed decisions than "alert and oriented x 4." It is entirely possible for someone to be fully oriented and yet lack the mental capacity to make an informed decision about medical care/treatment.

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