Parents controlling an adult child with chronic/progressive disease

Nurses General Nursing

Published

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 ICU/Critical Care.

I agree with Jolie. The medical team and social work and risk management, ethics committee all need to get involved as well as the legal department. Why are people just putting up with this man's behavior? If I found him doing that, I would have called security. Seriously, what's up with the co-workers. Doesn't your manager know that this man is a danger to his own daughter?

The next time your co-workers ask you for advice on how to deal with this man, tell them to call security and have him removed. Yes you can do it, you have every right to. Don't be afraid to do it, stand up for your patient.

That poor father needs a counselor. It seems to me that he is trying to control whatever he can, since he has lost control of the most important thing to him (his daughter's life).

Maybe it's easy for me to be on this side of the computer saying this, but I feel terrible for him and hope that he can get the help he needs so he can properly deal with the grief he's likely pushing aside and replacing with these actions.

Specializes in Peds Critical Care, Dialysis, General.

{{{{{Hugs}}}}} Watching things like this situation is what makes nursing so hard sometimes. I truly understand the toll it takes on you, Mag. We've had so many children in our unit kept alive -- the parents won't let go and we are "doing" interventions that are painful and ultimately useless; reasoning with parents is also useless. And on the other hand, we had a set of parents who wanted child to be in ABSOLUTELY NO PAIN OR DISCOMFORT. Mom wanted another 50mg benadryl 1 hour after 50mg given for "itching". If I so much as touched the child's gown, she'd howl in pain. She was on a dilaudid PCA, fentanyl patch and had PRN IV pain meds. Better be quick about it - the mom timed us on when asked and up until delivery of med.

Keep on with the excellent advocacy for this precious one. Dad needs help quick!

Cindy

Specializes in ER, TRAUMA, MED-SURG.
Thank you sooo much Anne :) You are great

Mag - I mean every word of it. Along with my being a nurse in recovery, and thankfully was only using for 3 yrs before only because I "couldn't get my stuff", as my counselor, named "Killer" at the La. state rehab facility that was rec. ---- and for the 19 years of at least once a week getting the "VIP" which at the facility really really meant "PIA" just wears your tail out. I mean OUT!!!!! You have to remember to take care of you the way you take care of the "VIP", AKA "PIA"

You'll be in my thoughts, dear Anne, RNC

I finally got out of the hospoital Friday afternoon, and that's a whole nother cardiac story altogether!! Lets just say one tele nurse will not get an honorable mention on my Press Ganey, and he was horrid!!!

Specializes in ER, TRAUMA, MED-SURG.
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.

Mag - I don't know about all of the TOS but "Daddy Dearest" makes me want to puke!!!!!

Sorry to the mods if that was offensive.

Anne, RNC

Specializes in ICU.

Update........

This is still going on,, and worse than ever.

Upper management and the doctors on the case have gotten a psych consult for the father. Father is feeding daughter through the peg, even though the doctor has written in the chart to have patient NPO. Patient is on TPN. Unable to tolerate any feeding. Body wasted away. Continues to aspirate said feeding... continues to be absolutely rediculous. I can't even stand looking at father.

I refuse to take care of this patient for many reasons. One being the last time I was her nurse, I wrote THREE pages of nurses notes, mostly on the father and the actions of him and his refusals of care. Patient has no pain meds.. and this is a very painful disease. Patient has no meds whatsoever except for vitamins and minerals. This is a progressive and fatal disease.

I don't know what else to do about this. I have talked to the doctors, they are frustrated but feel like they cannot do anything. I have talked to management, and either they cannot or will not do anything. Patient is ventilator dependant now and father still insists that therapy have patient STAND UP because she was standing when they were at home 3 months ago. This is a muscle and nerve wasting disease, she will never stand again. Heck, she can't even hold her head up anymore. She cries in pain all day. I am so frustrated. I know it sounds mean, but I wish they would take her to another hospital, maybe the people there would do something????

Could I report this to the state?? What would happen? would the people from the state even understand what is going on?? I know that this father would have them convinced that he is right and he is not doing anything wrong.

Specializes in ICU/Critical Care.

I don't understand why social work is not involved and WHY the hospital is not going to court to get a restraining order against this man. He's interfering in her care and he should be removed from the hospital and not allowed near her. He's doing more harm than good.

I don't understand why social work is not involved and WHY the hospital is not going to court to get a restraining order against this man. He's interfering in her care and he should be removed from the hospital and not allowed near her. He's doing more harm than good.

exactly....and, though it may seem a role reversal, i would report abuse of vulnerable adult....asap

he is going to kill her, and probably blame the hospital

also, the docs should remove the peg

Specializes in ICU/Critical Care.

Yes, there is adult protective services and they should be notified.

Specializes in ICU, Telemetry.

:yeahthat:

I would run, not walk to the phone and call Adult protective services. He's going to kill her, and you can bet he's going to sue everyone who's name is on the chart.

Specializes in ICU, Telemetry.

The more I think about this, the more worried I am for the original poster. This dad is going to flip out when the daughter does die.

You guys need to go to the head of nursing at your hospital as a group, tell her your concerns that this guy could start shooting when the daughter does die, and that you've left letters with your private attorneys stating your concerns and the date she was notified of your concerns. It's been my experience that while a corporation may not protect you, someone who thinks they may have just become personally liable for injuries or deaths will take steps to secure the workplace.

this is clearly abuse.

i don't understand why the doctors aren't advocating for her, but i would go over their heads, to the chief of staff.

let him/her write the necessary orders.

also get risk mgmt involved...this is a lawsuit waiting to happen.

and yes mag, get feedback from the bon.

someone there should be able to guide you.

this father's dysfunctional grieving/denial, is going to be the tortured death of this poor soul.

there NEEDS to be a restraining order - immediately.

seriously, go to anyone/everyone who will listen.

do not worry about hipaa, since this is a clear case of "need to know".

please, do something...

someone clearly needs to care.

leslie

+ Add a Comment