Parents controlling an adult child with chronic/progressive disease

[Magsulfate, BSN, RN]

I need advice and input, so here I am, at my most favorite place, with my most favorite nurses! :)

OKay, I have this patient and for hippaa reasons I won't get all the way into the dx and everything, but I will describe the situation.

I have a 40 yr old patient who has been taken care of by her parents for several years from a chronic condition. She still has her mind, but needs care 24hrs a day. Well, she's in my ICU for respiratory failure because her condition is progressive and chronic. From our conversations, the mother and father are in denial that this condition is going to eventually kill their daughter, when in fact this condition ALWAYS leads to death.

Now, the other day when the parents were gone, she asked me for pain medication. It was time for pain meds and she truley looked like she needed some. So I gave her a small dose and she slept soundly for a few hours. She much needed that sleep.

A few hours later one of my fellow nurses comes to me and tells me she forgot to tell me earlier that the father told her to tell me not to give ANY narcotics. That the patient would only get used to them and would lay there all drugged up and not get better. This is after I already gave the morphine THAT WAS ORDERED BY THE DOCTOR.

Anyway, I thought, okay, no big deal. The patient was asking for the medication, it is ordered, she looks like she needs it, and it's a small dose. No big deal.

Well, the dad comes to me and tells me I gave her narcotics and was not suppose to! He is very upset with me and wants to turn me in. I tried to tell him that she asked for it, the doctor ordered it,,, and the doctor even told me to give it because I had to call him. The patient's vital signs were indicating that she was in distress and the doctor wanted to give this med to help. I even documented this before I heard about this request from the father.

SO, my deal is,,, I understand they want to be in control of her health care decisions, but how far can they go?? Do they think she has no right to request her own pain medication? I think maybe this goes along with the fact that they are in denial of the chronic progressive aspect of this disease. They think that she will get better when no other person with this disease has EVER gotten better.

I just feel bad, and I don't know why. I know I did the right thing. I was not drugging her up, and she needed this narcotic for more than one reason.

I know that talking to these parents will not help. I tried to do that, but they wouldn't even let me say what I needed to say. They would interrupt me once they seen where I was going with the conversation.

I want to respect the parents, but I also have a duty to my patient. I just don't know what to say to these parents that will help them understand.

[BrnEyedGirl, BSN, MSN, RN, APRN]

Tough situation,...you say the pt is A/O,...is she/he her own quardian? If so in theory the parents have no say so at all!

[wtbcrna, MSN, DNP, CRNA]

Basically, if the patient is still mentally competent I would give the patient whatever she wanted as long as it was ordered. Otherwise, I think this is something the hospital social worker(s) need to be involved in.

[FireStarterRN, BSN, RN]

I think you need to bring in your nurse manager in on this one. What the parents are doing is ethically wrong, in my opinion. Also, the doctors on the case need to be aware of this. The whole team needs to get together on this type of thing.

Sometimes people with DPOA think that they get to make every little healthcare decision along the way. That just isn't true. They don't get to usurp the legitimate patient rights of a person.

[HonestRN]

It is my understanding that the parents would need a healthcare POA and that it is effective only when the patient is unable to make decisions for themselves. In this case if the patient is mentally competent, A&O and she asks for pain meds then by all means give them to her.

[Blee O'Myacin, BSN, RN]

I think this needs to go to ethic committee if your hospital has one. I would also check that you documented that the patient requested the meds, they were given as ordered and that the patient's response is described as well. (I know you probably did this already, but just checking for your peace of mind will help I think). Then kicking this towards the patient's attending phyician, the one that has a relationship with the patient and the parents, may be in order. The ICU resident might write the orders, but the parents will respect "their" doctor. Stand your ground with these family members, provide education and keep giving those PRN meds exactly as you are.

Besides, even if she wasn't her own POA, it doesn't mean that she wasn't suffering, or had the right to pain relief being taken away by a well meaning, yet misinformed POA. It's our ethical responsibility (and by our, I mean all of the medical team, not just the RN) to instruct otherwise. This is a huge education issue for the family and a huge patient advocacy issue. Good luck and I'm interested in knowing how it all turns out.

Blee

[RN1982]

Would it be too bold to just come out and say that the patient is able to make her own decisions? I think I've said something to the family before, similar situation. I basically told the family that it was the patient's choice whether or not to take pain meds as the patient is awake and of sound mind. Someone needs to seriously educate the parents regarding pain relief. Do they really want their daughter to just lay there and suffer? I really feel bad for her.

[RN1982]

Another question, why do they even have to know what type of pain meds the patient is being given? Isn't that between the patient and the nurse/doc? The patient needs to be empowered to participate in her own healthcare.

[Straydandelion]

Do the parents have a healthcare POA for the patient, and if so does it specify that they make ALL healthcare decisions whether she is competent or not? Usually the hospital gets a copy of any POA. The parents should be educated, but need to realize the facillity will respect their daughter's wishes unless there is a POA declaring her incompetent. I would arrange if possible a group meeting with doctor, social services, parents etc. and discuss legal healthcare issues and also prognosis for this illness getting the NM involved. If the parents have no POA they shouldn't even have been told she received pain medicines nor discussed her healthcare so I am assuming they have at least limited? I would have given her pain medicine also under those conditions. Unless the patient is declared incompetent, she has a right to decide her own care.

[Virgo_RN, BSN, RN]

Maybe the patient is the one who told her father that she received the narcotic. Is it possible that the patient is unaware of the parents' request? I'd probably get a social worker involved in this delicate family dynamic, and document my behind off to cover myself in the event the parents make a complaint against my license. I'd certainly discuss it with the charge nurse at the very least.

I've seen this so many times with dying patients, where the family doesn't want them to receive any narcotic pain meds, because they want the person to be "lucid" when they die. In instances like this, the ethics committee is typically involved.

[wooh, BSN, RN]

Yeah, this is a minefield, and you want folks that get delve into the details to advise you. Your best bet is getting ethics committee on board. Maybe also if you have a pain specialist at your hospital, they could come talk to the family. I've watched the pain team in action at my hospital, and while I get annoyed that EVERYONE ends up on dilaudid with them, I am always impressed with their ability to explain pain control issues and narcotics "dependence/abuse/legitimate pain relief" stuff.

[puppytrix]

We actually had an elderly patient (in her 90's) with a hip and pelvis fracture whose daughters would NOT let us give any other pain medication besides tylenol. (basically for the same reasons you listed). The doctors actually put in an order so THEY would be the deciding individuals in the patient's care. I'm not sure exactly how far they went into the LEGAL part of it, but they basically took over power of healthcare.

This patient you are describing is a vulneralble adult by definition, and withholding medication when she obviously needs it can be considered neglect.

The doctor ordered the medication, and YOU do not practice medicine. YOU are following MD ORDERS, as you should. This should not be on you, (and although I know it's difficult) don't take it personally. You were being a PATIENT ADVOCATE, which is exactly what we are supposed to be.