Difficult family member

[darkbeauty]

Hi.

I have a private duty 65yr old quad, Pegtube, trache, catheter, and lives with daughter at home in his own house. Since day 1, daughter has been altering and not following with plan of care by PCP.

The problem is she expects us nurses to do the same. His feeding orders are continuous feeds at a certain rate. She decides to discontinue the formular altogether, and make up her own "food" of home made mashed potatoes,green beans, oatmeal and whatever she feels like adding in a blender and puree' it to be fed via Peg tube. She feels like her father cannot live on this "milk substance" alone and needs real food. Next thing tube is clogged, we're running to the ER to insert a new one. Pt has been loosing weight, his BMI below of what it should be based on his height and weight. He has had s/s of aspiration Pneumonia as said by MD, but refuses to send him to ER for abnormal sudden change of MS (less responsiveness), fever, thick/smelly mucus through trache and mouth. A Levaquin dose was ordered for 14days and she hid it away from nurses so as to not give the pt because as per her words "am sick and itired of him getting antibiotics." She insists it's just a cold. She has also decided to play around with his anticonvulsants, will sometimes give or hold Vimpat on her own discretion, thank God he hasn't had a major grand mal seizure. My agency office is well aware of this, and I document everything that happens in my shift, incl threats of "getting rid of y'all if you can't do what I want you to do", and "my father can't live on milk alone, he gets hungry for real food." This is a patient with a PMH of a CVA that left him aphasic and unable to swallow. She honestly believes her dad is not a quadraplegic, he was misdiagnosed. Her way of ROM for his extremities is to "stretch his left arm till it's straight" despite him being contracted and grimaces and moans when doing it to this extreme.

O and she discontinued his foley and changed it to a texas/condom cath w/o Dr orders.

I know family or POA cando the way they see fit at home, and we ought to respect that, but inorder for us to follow that, we need an MD order, and she feels like we need to stay away from the Drs this is her house/her father.

I'm getting exhausted of explaining the same thing over and over again of how important it is to follow 485, importance of treating Pneum and how vital it is to have him checked out should his VS become abnormal, and not missing a dose of his seizure meds and blood pressure meds. The last 2 shifts Pt's BP was elevated to 180s/100 due to the fact that his med was abruptly stopped by daughter about a month ago. I feel like it's unsafe for this man to be at home despite having skilled nursing because daughter wants to follow her own plan of care which can be dangerous to the Pt.

How would you handle this?

[Red Kryptonite]

Report her for elder abuse/neglect? If she's had this explained to her several times and refuses to abide by it and is causing demonstrable harm, you may be obligated to report.

[CrunchRN, ADN, RN]

That poor poor man. Love gone wrong.

[OrganizedChaos, LVN]

You might have to call Adult Protective Services & even though she's the POA, she's causing him harm & he needs his medications. I think at this point you really need to call APS (or what you call it there) & start a case. What good are you doing if she is hiding his meds & you've explained how important they are to the patient? No one is going to get through to her. Maybe a visit from APS will. Maybe once they show up & tell her they will put him in a nursing home she will stop. Good luck!

[nursel56]

Yes, I really feel for the actual patient/client in the middle of all this. These family situations are so often complex and fraught with emotion exaggerated by his medical situation even more so than average parent/child drama (which can be bad as we all know! ) Going toe to toe with a relative usually doesn't work as you probably also already know!

Bottom line as mentioned if you feel it is not a safe environment for him you must report it to the adult protective services agency for your state.

Then I would consider whether the man is mentally competent despite his medical status and/or whether the daughter has medical POA. If he is competent, he needs to decide for himself after consultation with his PCP.

In the past I have seen the 485 amended to include things the family insists on like an order "may give vitamin or herbal concoction or seaweed milkshake", etc. Perhaps you can consult with the PCP and reach a compromise by allowing pureed food, but educate the daughter on how to flush the tube and on aspiration precautions, etc.

Then, continue to document as you already are. Unfortunately, these things rarely have simple answers so those are just some thoughts on it.

[darkbeauty]

I've seen slight adjustments to 485 too, eg Vitamins, like an Omega 3, something like that. but not total disregard for the whole plan of care. There's obviosly a whole lot of emotions going on with the daughter regarding Pt's condition, and that's understandable, but not to a point where Pt's care is compromised. Will definately talk to the Centre of Aging in my state. What really disappoints me the most is the agency that sends me there. despite being aware, they turn a blind eye. Despite insisting a upervisor really needs to handle the tube feeding issue, and reiterate that as nurses we can not give "home made blended" food through his Pegtube if it's not in the plan of care. It always gets thrown under the rug, meantime daughter is behind your back yelling "you're gonna starve my father."

[caliotter3]

When family members consistently contradict orders, you attempt to get the doctor to add their stuff to the 485. When the doctor adamantly refuses to go along with the circus, it is time to seriously consider leaving the case. There is only so much documentation you can do to cover your back in situations like this. So he aspirates the concocted tube feeds and chokes to death. Or dies when the pneumonia goes untreated. Who gets blamed? You, of course. I would get out of there.

[OrganizedChaos, LVN]

When family members consistently contradict orders, you attempt to get the doctor to add their stuff to the 485. When the doctor adamantly refuses to go along with the circus, it is time to seriously consider leaving the case. There is only so much documentation you can do to cover your back in situations like this. So he aspirates the concocted tube feeds and chokes to death. Or dies when the pneumonia goes untreated. Who gets blamed? You, of course. I would get out of there.

That is very true. I would call APS as well as getting out of there. The daughter will point the finger at the nurses for making her father sick or killing her father. Run far & run fast.

[caliotter3]

Be sure to notify your agency one more time (prior to calling APS) because they will retaliate against you instead of taking any action. I would write up a communication note that says it all and keep a copy. With one exception, every agency I have dealt with when it comes to abuse reporting time, takes the 'bury the head in the sand' approach. But they don't bury their head in the sand when it comes to blaming the reporting nurse for everything and then they stop providing work to her/him. Really nice when they go so far as to bad mouth you to another employer. Think you get what I'm trying to convey here. You have as much to beware of from your employer as you do from the client's family.

[KelRN215, BSN, RN]

As a supervisor, if a field nurse called me and reported what you are reporting, I would IMMEDIATELY call Elder Protective Services (or whatever it's called, I've only ever had to deal with child abuse/neglect). All nurses are mandated reporters of elder abuse/neglect and this is nothing to mess around with. So I'd A) file the report of neglect and B) call the daughter and tell her that we will not be staffing the case any longer if she will not allow the nurses to care for her father. There's no reason for nurses to be in there if the daughter won't let them nurse...

[Here.I.Stand, BSN, RN]

Adding my vote to the report this elder protective services/remove yourself from the case consensus. What a horrible situation for that poor man. I cannot even imagine not treating pneumonia...how cruel. To say nothing of risking it AND starving him w/ this concoction that's clogging the tube and not keeping his weight on...withholding other meds...risking seizures... That poor man. You NEED to report this.

[kbrn2002, ADN, RN]

This sounds like an issue that should be referred to Adult Protective Services, this poor misguided woman is quite obviously doing harm by ignoring the medical plan of care. Just be prepared for repercussions at work if your agency is not in agreement with reporting this dangerous and ongoing issue.