Patient with Dementia's Right to Refusal

[oblivionenigma]

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

[tinks599]

Care plan meeting with the POA, staff, DON and physician. This needs to be care planned. I realize people have the right to refuse, but the family needs to understand what is going on here and the limits of the facility (i.e. you can't hold them down and force them to eat). The big deal is the family needs to be notified. Offer to have the family come up if the patient continues to refuse care. Ask the family in the meeting if there is anything you can do to get them to accept care. Document what you try, be specific. Don't just say you tried "multiple attempts" or "multiple approaches." Don't just write that you talked to the family, adequately document the content of the conversation. Make sure the physician knows. This is an unenviable position, I know but I think the best you can do is to be thorough and make sure everyone has the opportunity know what is going on and make decisions about what kind of care can be skipped or what must be done to get them the care they need.

[oblivionenigma]

Thanks for your reply! I guess I've accepted that I can't "save" everyone, when that "everyone" is someone who can decide what choices to make. I'm still trying to accept that I can't "save" people when they don't understand that's what I'm trying to do.

I just wish that thorough documentation and careplanning--even CPing that family does not wish the patient to be turned, fed, changed if refused, etc--would also eliminate the negative consequences. Regardless of the cause--including a thoroughly documented and accepted cause--we get severely penalized, have to go through months worth of repositioning audits (where we document every time an aide repositions someone, which aide it was, what side they are on), witness every episode of incontinence care and document thoroughly what product was used, did the aide perform care correctly, etc., go through sometimes hours of condescending training about the causes of pressure ulcers or incontinence associated dermatitis and how to prevent them.

After approximately a year without a single pressure ulcer in our facility, we got one, and it was on a hospice patient who had stopped eating for weeks, was absolutely emaciated, was on an air mattress, and basically was the type of patient I described before...the family was totally on board with this, it was documented as such, and even when the patient got the sore their response was basically "Well yeah... we were expecting that. As long as they're comfortable we couldn't be happier with the care." That one pressure sore is when I learned that "there is never an acceptable reason for a pressure sore" and we had to undergo all of the above for several months, not to mention a lengthy investigation, state report of a sentinel event, etc.

Maybe I could accept it better if it weren't thrown at me as a sentinel event when their refusal does result in injury. For the record, the DON is VERY supportive--this comes from above.

[Blackcat99]

I took care of my Mother with moderate alzheimers at home for 8 years. The thing that worked for me when Mom refused to do anything was to say in a strong loud authority sounding voice "The doctor said you have to keep your oxygen on"" The doctor said you have to take a shower" The doctor said you have to take this pill" etc etc etc. If that didn't work, I would pick up the phone and say "OK. I'm calling the doctor right now and I am going to tell him that you are refusing to follow his orders." Talk to the family and see if they have any similiar ideas as to what might work with their loved one. Of course, each patient is different and so what might work for one patient might not work for another patient. Good luck.

[tinks599]

After approximately a year without a single pressure ulcer in our facility, we got one, and it was on a hospice patient who had stopped eating for weeks, was absolutely emaciated, was on an air mattress, and basically was the type of patient I described before...the family was totally on board with this, it was documented as such, and even when the patient got the sore their response was basically "Well yeah... we were expecting that. As long as they're comfortable we couldn't be happier with the care." That one pressure sore is when I learned that "there is never an acceptable reason for a pressure sore" and we had to undergo all of the above for several months, not to mention a lengthy investigation, state report of a sentinel event, etc.

Maybe I could accept it better if it weren't thrown at me as a sentinel event when their refusal does result in injury. For the record, the DON is VERY supportive--this comes from above.

Wouldn't that have more likely been a Kennedy ulcer?

[elkpark]

Um, nobody has the right to refuse healthcare if s/he lacks capacity to make informed healthcare decisions for her/himself, which kind of goes without saying with "profound" dementia. Do these individuals have (legal) guardians or POAs? If not, do they need them? Can the physician document that the individual lacks capacity to make decisions about X? (Any physician can legally make that determination, although, in my experience, the physicians in other specialties get spooky about about and want psych to make the call.)

On the other hand, just because someone doesn't have the right to refuse a procedure/intervention doesn't mean it's necessarily worth doing if the individual is going to fight you tooth and nail every time you try to do it. I agree that working with the famly to come up with a plan everyone agrees with is your best bet.

Best wishes!

[T-Bird78]

If they have been diagnosed with dementia they do not have the mental capacity to refuse.

[elkpark]

If they have been diagnosed with dementia they do not have the mental capacity to refuse.

That's not necessarily true -- there are many degrees of dementia, every individual is different, and capacity is a fairly fluid concept. While many individuals with more severe dementia would be considered to lack capacity to make healthcare decisions for themselves, the diagnosis, by itself, doesn't mean anything in this regard (the same as a diagnosis of a chronic mental illness or mental retardation, by itself, doesn't prove anything about one's capacity or limit anyone's rights).

[oblivionenigma]

Even if they have a POA or even a legal guardian, the legal guardian cannot say "Turn them every 2 hours no matter what" if the patient refuses. We cannot force them to do anything they don't agee to, period--even if they have been declared mentally unfit. I've been told that this is the law and that we would be arrested for battery and have our licenses brought before the board if we did provide care they refused, regardless of mental status. Regardless, it appears to be company policy.

Similarly, there are of course people with advanced dementia without a guardian. We have had the ambulance refuse to take them to the hospital when violent (ie seen as a potential threat to self or others) and/or refusing important treatment because they refused to go...ambulance says "We can't transport without consent," and leaves us to deal with the the problem.

[jadelpn, LPN, EMT-B]

Then the company policy needs to have more than "a patient can't refuse". Because then you could be brought up on neglect charges. Can this be brought to administration with a suggestion that their (or parent company's) legal team give direction, and if it is found that "everyone has the right to refuse" then ask for some sort of plan. ie: If patients declines turning and repostioning more than 2 days, then family meeting will be called to discuss other options for care" or something to that nature. There are lots of other legal guardianship type of things that state a patient can not refuse--but your company's attorney can go into more detail about that. Unfortunetely, when they don't get reimbursed due to pressure ulcers and the like is when they will have to start to address this, and it needs to come from top.

[elkpark]

Is this a SNF-specific thing, like the "no restraints" rule? I work in acute care, on the psych C&L service at a large academic medical center, and a pretty good chunk of what we do all day is evals on individuals to determine whether or not they have capacity to refuse tx. I've never heard anyone suggest that there could be such a thing as a person having the legal right to consent or withhold consent for treatment, or anything else, despite being, let's say, for the sake of discussion, profoundly demented.

I would be v. surprised if this is, in fact, "the law" in whatever state the OP is in. And if it simply company policy, I also would question whether the legal counsel has been sufficiently involved. This is going to come back to bite the facility at some point ...

[tewdles, RN]

I think the OP gets the point that an advanced dementia patient can no more refuse their care than can a 5 year old.

What they often can do, however, is to demonstrate to us those things in our POC which are frightening, unpleasant, or uncomfortable for them as that is often when they act out. The patient may not be able to refuse an intervention but we as professionals can certainly determine when an intervention is more problematic than effective. When we discover those things we can discuss them with the care team and family to devise a new and improved plan for the patients care and comfort.

Good luck.