Parents controlling an adult child with chronic/progressive disease

[Magsulfate]

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.

[justiceforjoy]

Her family needs education on how narcotics work. If there is pain that needs to be controlled, there isn't a chance of addiction. They are getting the medicine for pain management, not for the high. What they fear with regards to the LOC is a temporary SE that will eventually level off with the appropriate use of the narcotic.

You did nothing ethically wrong. Her parents have legitimate concerns, but only because they are not educated.

[Magsulfate, BSN, RN]

Thanks everyone for the replies. I tried talking again to the parents, but it is a lost cause. They are the type that have google university master's degrees and know wayyy more than me on any given subject, especially pertaining their daughter.

So,, I have learned to deal with it,,and go the a private closet or something and complain and vent to the wall about how crazy it is. Somehow I managed to get her the pain meds when she needed it,, but I am going to mention it to case management on monday.

THanks :)

[Magsulfate, BSN, RN]

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.

[Jolie, BSN]

Your situation reminds me of a patient I once cared for in labor.

The couple was married and planned their pregnancy. Both were well-educated and well-spoken. The Dad was a chiropractor. I don't remember mom's profession, but it wasn't health care related. They came in with a birth plan, which contained nothing out of the ordinary. Our facility was a low-risk birth center attached to a hospital, but essentially separate from it. Most of our deliveries were managed by CNMs.

Mom was in active labor and getting quite uncomfortable. Her breathing techniques and other planned measures were offering little relief. She had made it clear that she didn't want an epidural, but had voiced no opposition to IV pain meds. Almost as if he read my mind, the husband asked to speak to me in the hall and demanded that I NOT offer his wife any form of pain medication, and if she requested it, I was to refuse to provide it.

I was a relatively new nurse and not the most assertive, so I don't know where I found the gumption to respond to him, but I am proud that I did. I let him know in no uncertain terms that to deny a properly ordered and necessary pain med that a patient requested constituted poor nursing care, something that I would not participate in. It was my legal duty to provide appropriate and necessary nursing care within my scope of practice, something I fully intended to do. Failure to do so would make me subject to BON action, and I was not going to allow him to put me in that position by preventing his wife from obtaining appropriate and necessary care. I further told him that I was quite certain that all of my co-workers would support my position so that requesting another nurse who would fail to advocate for his wife was not an option. If he wanted his wife and baby to recieve substandard care, he was going to have to take them elsewhere. (with her consent, of course.)

Bottom line, if she asked for pain medication, she was going to get it.

He was clearly unhappy, but didn't make any further attempts to interfere with his wife's nursing care.

I suspected that there may have been control and/or abusive issues in that relationship and made a Social Services referral. Mom delivered uneventfully and was DC'd home with baby and Dad because SS was unable to document any evidence of abuse.

I would suggest a few things: 1.) A multi-disciplinary meeting with MD, nursing, pharmacy, Social Services, etc. to get everyone on the same page in providing necessary and requested pain relief regardless of the parents' request. It is crucial that the parents not be able to splinter the staff and intimidate some into complying with their unreasonable demands. Everyone must stand firm together.

2.) A social services and/or adult protective services referral to evaluate the possibility of abuse of a vulnerable adult. Also approach the patient about the importance of putting her requests into a living will or identifying another competent adult (sibling, friend) as her healthcare power of attorney, so that her desires will be followed, both now and when her condition declines to the point that she is unable to communicate her wishes.

3.) An ethics committee referral.

4.) A family meeting with the physician, nursing administration and hospital attorney who will be responsible for informing the parents of their limitations in terms of dictating their daughter's care.

Best of luck and thank you for advocating for this patient.

[BrnEyedGirl, BSN, MSN, RN, APRN]

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 would have a real hard time not telling these parents that I can't discuss details of their adult child's care because of HIPAA. I think I would send them to the Dr for any details and explain that I am there to do the best I can to care for my patient.

:angryfire:angryfire:angryfire This stuff infuriates me and I don't understand how the hospital allows it!

[Vito Andolini]

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.

Was your patient sufficiently relieved by Tylenol?

[Vito Andolini]

I would have a real hard time not telling these parents that I can't discuss details of their adult child's care because of HIPAA. I think I would send them to the Dr for any details and explain that I am there to do the best I can to care for my patient.

:angryfire:angryfire:angryfire This stuff infuriates me and I don't understand how the hospital allows it!

Maybe the hospital doesn't know about it.

[Vito Andolini]

Thanks everyone for the replies. I tried talking again to the parents, but it is a lost cause. They are the type that have google university master's degrees and know wayyy more than me on any given subject, especially pertaining their daughter.

So,, I have learned to deal with it,,and go the a private closet or something and complain and vent to the wall about how crazy it is. Somehow I managed to get her the pain meds when she needed it,, but I am going to mention it to case management on monday.

THanks :)

I hope you will not ignore all the other good advice you got here. I hope you will involve not only Case Mgr. but Ethics Committee, her doctor, your supervisor, Social Worker, and so forth. When you said you had learned to live with it, I thought you were not going to talk to anyone.

[Magsulfate, BSN, RN]

I already told my supervisor,, and our ethics committee is a 1-800 number listed on a wall. A co worker told me it is a joke, it's only there because the law requires us to have it. We don't have a 'committee" , that anyone knows of and I've only been at this place for a short time so far.

My biggest problem is holding my tongue and learning to not yell and scream,, I have to be very professional and like I said, she is getting her pain medications. At this point, the father just does not like it AT ALL and makes sure that everyone knows it.

So far I haven't gotten in trouble for giving this ordered pain med,, but it still seems the father wants to be really mad about something/anything.

I will tell my senior nursing supervisor on Monday. The doctors already know and have only winced at the story,, they haven't done much of anything besides order the pain med and stick by the order. The doctor had wanted to order something for agitation but was stopped by the father. I'm not sure why the doctor won't tell this man straight up how it is... I think he is afraid. Or maybe it's because the doc has already tried, like I have, and it didn't work.

[AlabamaBelle]

This is so hard to read. If the parents don't have guardianship, I'm not sure they have any legal standing. They may be caregivers, but as long as your patient is alert, oriented and still judged competent, the parents, as I understand the law, have no standing.

I am my daughter's legal guardian. The hardest thing (besides having to choose to treat or not) was the part of the guardianship in which we had to prove her mental incompetence. I would rather have died a thousand deaths than to prove her incompetence. However, if she were to ever have to go back into the hospital or the end of her road is in site, I could not fathom withholding pain or antianxiolytics.

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

[Batman24]

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.

God bless those doctors. We need more like that. And God bless the nurses who also advocate for their patients at times when they need it most.

[Batman24]

So far I haven't gotten in trouble for giving this ordered pain med,, but it still seems the father wants to be really mad about something/anything.

I will tell my senior nursing supervisor on Monday. The doctors already know and have only winced at the story,, they haven't done much of anything besides order the pain med and stick by the order. The doctor had wanted to order something for agitation but was stopped by the father. I'm not sure why the doctor won't tell this man straight up how it is... I think he is afraid. Or maybe it's because the doc has already tried, like I have, and it didn't work.

You can't get in trouble here. You gave a drug ordered by the MD when the patient said they had pain. The parents have NO say if they don't have POA. If the patient is of sound mind and says they have pain you give them what is ordered or call the doctor for them. Period.

The patient needs help and I hope you are up to the task because if not she is going to die a miserable and painful death and our patients deserve better. You need to get the doctor, your boss, ethics committee, and a social worker involved along with her parents. You can also bring clergy into the mix if that would be appropriate. These people are in a deep denial and need help. In order to help their child you have to help them. Reach out and someone will care. If this doesn't work call APS and they will come.