Help-family in denial

[CareForYou]

I'm not the case manager for this family ( but I've had to deal with this family while on call) but here's the situation. Pt has benign meningiomas and all treatments are exhausted. Pt has had to be moved to SNF. The family is in denial about pt's condition. The pt is becoming agitated, causing problems for the staff, etc. We get calls routinely from this family. they don't want us to medicate pt because they don't want pt sedated. Only pain meds allowed by family are Tylenol and Ibuprofen. They have allowed Ativan. They want us to boss the staff around at this SNF because they aren't happy. They want us to be there constantly, even though we have told them we do not offer round the clock services. We have talked to the staff about going slow with pt, taking the time to givept meds, taking time to feed pt. Pt is becoming very obstinate and noncooperative. The staff is working with us, yet they also have to do what is best for their staff, and they certainly aren't going to take well to us bossing them, just because the family wants things their way. That's just not acceptable, yet that's what this family is asking us to do.

This family has frustrated me to no end, because it doesn't matter what we say! They are in total denial about pt's condition causing mental changes that affect pt's behavior.

What are we going to do when pt needs some Haldol or something?

I'm new at this hospice nursing, so some advice would be welcome. I spent 2.5hrs last weekend with them, and felt like I got chewed up by the spouse and kids.

[tewdles, RN]

First...understand that this is not uncommon in hospice. Do not be lured into thinking that because the family is struggling that the case nurse is out of touch or not doing his/her job...it may just be this family acting out their anxieties about the changes in their loved one.

Ok...As a case nurse I would be collaborating intensively with the MSW, get that discipline as involved as possible. Given that acceptance issues can sometimes be related to spiritual issues it would be wise to investigate if there is an option for that discipline to also increase contact. A family meeting with hospice, family, and facility staff would be very helpful...the family needs to understand that while hospice is there to care for the patient and family, we are not adversaries of the facility...it is good for the facility to know this also.

Education is the key to families like this...they are obviously going to be very engaged in directing care for your patient, so make sure that as many of them as possible have accurate information. Discussing ways/meds to control agitation and improve their loved one's comfort and safety is crucial in cases like this. Provide them with all written info you have avail about agitation, document like crazy. Bottom line is this...if the family will not allow you to treat the agitation then your hands are tied...as are the facility's. The family may not allow that sort of pharma intervention until something happens to change their minds...a fall, or altercation of some sort perhaps. It is important not to alienate the facility in cases like this...they need your help and support too.

Good luck.

[leslie :-D]

everything that tewdles said.

i would like to add, that a meeting with hospice, the snf and family, would likely be beneficial.

ea could discuss their concerns and all could collaborate for a satisfactory solution...

such as the family being present at the snf, to personally assist in directing care.

it really sounds like it is time to careplan together.

and as tewdles pointed out, it usually takes a catastrophic event before any of the med regimen is changed.

leslie

[Tallcalirn]

The family has forgotten who this is about....the patient... who needs to be kept comfortable and pain free.....

[leslie :-D]

The family has forgotten who this is about....the patient... who needs to be kept comfortable and pain free.....

this is a very common occurrence in hospice.

way too common.

leslie

[CareForYou]

Thanks all for your replies. All of the suggestions given have been tried. The case manager is on top of this case, and she has met weekly, even twice weekly with this family and the SNF. They are occupying all of her time.

I've only come in on this on the weekends when I've been on call. The family wants hospice for the "comfort", but it's really more like a manipulation game now.

Our hospice may eventually get to the point where we have to drop them, especially if the family refuses to allow any meds to calm him down, or provide pain relief. They may just not be ready for hospice.

I'm on call this weekend, so I pray nothing happens because I'm finding myself running out of patience!

[morte, LPN, LVN]

Thanks all for your replies. All of the suggestions given have been tried. The case manager is on top of this case, and she has met weekly, even twice weekly with this family and the SNF. They are occupying all of her time.

I've only come in on this on the weekends when I've been on call. The family wants hospice for the "comfort", but it's really more like a manipulation game now.

Our hospice may eventually get to the point where we have to drop them, especially if the family refuses to allow any meds to calm him down, or provide pain relief. They may just not be ready for hospice.

I'm on call this weekend, so I pray nothing happens because I'm finding myself running out of patience!

sounds like it may be time for some "tough love", either the family sits with patient 24/7 or takes him home.....it isnt fair to the patient nor the SNF staff to have him be combative and belligerent and in pain!

[leslie :-D]

Our hospice may eventually get to the point where we have to drop them, especially if the family refuses to allow any meds to calm him down, or provide pain relief. They may just not be ready for hospice.

it sounds this may truly need to be done- discharging the pt...

which is sad, since the pt will continue to suffer.

sounds like it may be time for some "tough love", either the family sits with patient 24/7 or takes him home.....it isnt fair to the patient nor the SNF staff to have him be combative and belligerent and in pain!

i so agree w/you, morte.

imo, "tough love" is a highly effective intervention for all sorts of situations and people.

i've used it prn...

with good effect.:)

leslie

[tewdles, RN]

Sounds like you work with a top notch team.

One other thing that I have found to be helpful in moving a family along with an effective symptom management POC is to invite them to an IDT meeting. Sometimes, getting them on your turf, with the entire team is a more efficient way to educate several family members at one time. The result is often, IME, that a plan that was muddy and ill focused for weeks becomes patient focused and crystal clear to all involved in less than 1 hour. The family walks away feeling affirmed, listened to, in control, and like they are "doing something" for their loved one. Plan on that meeting taking approx 45 min longer than usual with the family as first order of business.