Parents controlling an adult child with chronic/progressive disease

Nurses General Nursing

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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.

Specializes in Pediatric/Adolescent, Med-Surg.

I work in peds, but I see alot of 18+ pts. It drives me nuts which the pt is a legal adult/A&O x3, and the parents act like they're in charge. Just this week I had an 18 year old girl fully alert and able to make her own decisions, that had to call her mommy at home (assuming mommy wasn't there) to get permission to ask for an Oxycodone!!! I will ask my pts how they feel/if they are having any pain, and it drives me nuts when the pts will look at their parents and ask the parent "Mom, how am I feeling?" :down: What's worse, is IMO, the doctors sometimes encourage this sort of behavior, at least in pediatrics.

Although, as her guardian, I have the final say in her treatment, I always listen to her and how she feels.

Best of thoughts for you in dealing with this situation. I know you're doing the right thing, Magsulfate.

Cindy

I'm sorry your daughter isn't well, Cindy. I'll keep all of you in my thoughts and prayers. The way you handle it is the way we all wish it was handled each and every time. These stories always kill me.

Specializes in ER, TRAUMA, MED-SURG.

Hey - Wow! That's the kind of patient that I HATE to care for, not due to the patient herself, but due to the family members. Usually the patient in this position are very sweet, and appreciate the things you do for them. I don't ever mind doing anything I can for them. The family, on the other hand, well, you know what I'm getting at...

I understand that a lot of parents ect. have a lot of anger, or they are in denial about their family member's prognosis. But, like in the case of this patient, the family member not wanting you to give her narcotics, especially when she really sounded like she needed it and you gave her the relief she needed to get a little rest.

I agree with Firestarter, I'd bring in my nurse manager or someone. That is the kind of situation I would hate to get into - you know the patient is hurting.

I'll get off my soapbox - I hope things get worked out with them.

Anne, RNC

Specializes in ER, TRAUMA, MED-SURG.
Oh yes, and patient is of sound mind, there is NOT a POA filed at the hospital,, and the parents keep treating her like a child, even though she has been an adult for a long time. Like I said, this is a chronic progressive disease that ends in death 100% of the time,, so, narcotics will need to be given or this person will be in a living hell for the rest of her life.

I am glad the patient has someone like you there to help her and try to make her comfortable, or as comfortable as you can. I just can't imagine being in her situation and not have an advocate - someone in her corner to assist her in that. We know we can't change the facts of the case, when will she die, or the fact that she WILL die, but we ought to be able to do some of things we can do - make them as comfortable as possible for the time they have here with us.

Anne, RNC

Specializes in ICU.

I am just sooo tired, I cannot explain it. Having to deal with this for three days throughout the weekend. Let it be known that my documentation was the best that it's ever been this weekend and the powers that be were all notified of this complex situation.

Sooo many other things were going on with this family/patient and I wish that I could explain it all to you all.

I am just so emotionally drained right now. I wouldn't be surprised if my hair turns gray when I wake up in the morning.

I've heard about these kinds of situations before but I've never had to deal with it first hand.

I'm glad that I have four days off now and maybe when I go back they won't be there.

Thanks for all the replies and advice.

Specializes in ER, TRAUMA, MED-SURG.

Mag - That kind of thing will just drain every ounce of energy you have. As if we don't work hard enough and get tired physically, that just adds to it. I hope you do get some rest and can recharge before going back.

You can tell what a good nurse you are, even just in your words here, and a good human being. You try to do everything for all your patients- and that's not something just every nurse has these days.

Get some rest and try to just prop up and relax! Anne

Specializes in ICU.
Mag - That kind of thing will just drain every ounce of energy you have. As if we don't work hard enough and get tired physically, that just adds to it. I hope you do get some rest and can recharge before going back.

You can tell what a good nurse you are, even just in your words here, and a good human being. You try to do everything for all your patients- and that's not something just every nurse has these days.

Get some rest and try to just prop up and relax! Anne

Thank you sooo much Anne :) You are great

Does she get 24/7 home health care or do her parents do all of it?! Just curious.

Specializes in ICU.

She gets daytime care from what I understand. I think the biggest issue that needs to be dealt with is denial.

Denial of this huge decline in health. Denial that his daughter won't gain that health back,, won't ever be able to do the things she was doing ever again. Big denial. BIG.

She gets daytime care from what I understand. I think the biggest issue that needs to be dealt with is denial.

Denial of this huge decline in health. Denial that his daughter won't gain that health back,, won't ever be able to do the things she was doing ever again. Big denial. BIG.

Is she actively dying at present or is it a condition that will just have her continue to deteriorate?! Would you say she has months, a year, etc. left to live?!

I fear that when she's at home they will bully the nurse and this poor thing will die in pain. I hope your manager has a spine and gets on it tomorrow while she's still a patient so perhaps this can be dealt with. Maybe if a group gets together and is firm but kind in that this is going to get worse and she is going to die and says it until they start to get it it would help. Maybe a member of their clergy being there if applicable could help as well. My main concern is them not getting her pain meds and the agony she could face without all of you to help her now.

Specializes in ICU.

Update.... we've got dad forcing tube feeding down her g-tube even after doctor ordered no feeding because of vomiting and aspiration last night. Xray shows worsening of pneumonia. Nurse pulled out 1100 cc's of tube feeding 4 hours after dad fed her yesterday.

We tried to educate the father,, and he yelled... "I KNOW EXACTLY THE CONSEQUENCES AND I WILL FEED HER!! I WILL BE RESPONSIBLE IF SHE SPITS UP!!"....

oh my goodness.. it never ends.... I have told the manager a few weeks ago that I would not be assigned to this patient anymore. I don't want to be placed in this situation and have my license on the line.

As time goes on, the father is getting more and more beligerant and uncooperative with treatment. He doesn't want her to die, he just wants to treat her how HE WANTS to treat her,... he doesn't want the doctors and the nurses to have a say in anything.

I know that he is doing the opposite of what the doctors and nurses teach him,, on purpose.

What do you do with people like this?? Hide in a closet and scream into a pillow?? I don't know what else to do.. the nurses will often come to me for advice. I tell them to make sure and document, in quotes, the education they are doing,, the response from the patient and father,, and follow up with quotes and facts.

Specializes in Maternal - Child Health.

It's time for the hospital attorneys to get a restraining order.

He has progressed from interfering with his daughter receiving necessary and appropriate care (which is bad enough), to actively engaging in behavior that endangers her health and well-being. This amounts to neglect, at best, and abuse, at worst.

He needs to be kept away.

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