Families who refuse pain management for the patient

[NightOwl0624]

I could really use some advise or words of wisdom. I work on an acute oncology floor, and we do handle a lot of end of life patients. Once they become DNRs or Hospice, most of them do receive very good comfort care with pain well managed.

Then we have the patients whose families do not want anything "too strong" for their family members because they will be too sedated. It has happened several times before, now it is happening again.

My patient earlier this week has terminal cancer but the family did not want him to know his diagnosis. Last week, while they were still deciding on whether to make him a DNR, he coded and wound up in the ICU for a few days. He is back on our floor, completely unresponsive now, and a DNR. (That right there upsets me very much - we "saved his life" so he could live a few more months in misery.)

Anyway, the family comes to get me because they think he is in pain because he is moaning. When I tell him what he has available, they refuse it. His family does not want him to have anything stronger than a tylenol because it makes him sleepy. Again, he is unresponsive, but when they yell in his ear, his eyes will flutter, so they think he is improving.

I think it may be a cultural thing, but I have a very hard time being supportive of the family when they are choosing to keep their loved ones in pain. All I can do is keep trying to educate, even though it seems like a waste of time.

I usually don't bring "work stuff" home with me, but I can't stop thinking about this man.

[nelcoy4]

I've had pt's family members tell me that they do not want their family member (the pt) to have pain meds or know about their dx. I let them know if pain meds are ordered and the pt asks for it, I am going to administer it. I find out what is their reason for not wanting the pt to have it and try to explain the importance if it.

When it comes to the family not wanting the pt to know about his/her dx, I tell them I'm not going to lie to the pt if the pt ask me. I then let the Dr, my nurse manager, and consult the ethics committee about the situation.

[rkealy, BSN]

It really comes down to communication....how you communicate, when you communicate, non verbals, 99% of the time I have had little or no problems.....the others well.....you do what you can...for millinea people have died without "comfort care". Pain medication is a very small part of the entirity of what is "comfort care" or End of Life Care in the overall population of dying patients. Many times it seems if the Pain medication is often to make the families feel better, sometimes masking/hiding the dying process. Its all about preemptive education of the whole family and the patient.

[rita359]

Saying the family isn't your patient isn't naive in an instance like this. Your responsibility is to advocate for the patient. If the patient is judged in pain it should be attempted to be relieved. The family may be a hurdle you have to educate, educate, educate but your responsibility is to the patient.

[CrunchRN, ADN, RN]

If the patient cannot communicate and is in obvious pain I feel an ethics consult needs to be done.

I don't think the family has the right to deny them pain relief.

When in doubt (patient cannot speak up) we should err on the side of pain relief.

Family's can do crazy things for many twisted reasons and we should protect the patient.

[leslie :-D]

Personally, the very cynical part of me also thinks that administrators and physicians cater to the family because, well, the patient isn't exactly going to be affecting the press gainy scores.

this is very true, michigan...

that we do cater to family wishes, to the point of pt's needs no longer a consideration.

one time, i was personally assigned to a new hospice pt, per the med'l dir's request.

he 'asked' me (before seeing this pt) to try and honor the dtr's wish for mom/pt to receive little to no analgesia for her metastatic ca pain.

the doc had written sufficient prn orders to address the extreme pain, yet i was being asked to withhold it.

it had nothing to do with culture - more to do with a twisted dynamic of pacifying an ambivalent family member.

here we are, trying to comfort the family as to not ruffle her spastic feathers.

this happens far too often - and as you all know - it happens at the bedside too.

i went to see this pt - the dtr was there, as was the DON.

the pt was alert with clenched teeth.

she admitted to pain - but also deferred to her dtr's wishes.

i turn to the dtr, who reminds her mother, "mom, we discussed this already". (i have no idea what they had discussed.).

so i softly stroke the pt's head, holding her hand while the pt quietly moans.

at that point, the dtr tells me that since i am here and obviously a "comfort" to mom, she is going to leave.

i immediately walked to the dtr, face to face, and told her i cannot stay- and that she needs to stay with mom until i can return...

ending my declaration with, "that's the very least you should be doing for her".

i left the room, 10 minutes later the dtr is hunting me down, asking me to give her something for the pain.

from that moment on, this pt was sufficiently medicated until she died.

i'm not saying this works for all families, but if you can have a family member sit with a writhing, moaning pt in pain - sometimes they will change their minds, as it's too much to watch.

but for the most part, we need to educate these families- that "SO WHAT" if they get addicted (which they won't), "SO WHAT" if maybe they're a bit sedated...it's not as if you're going to have any meaningful interaction while your loved one is in pain.

yes, in hospice, families are also our pts.

but the pt always always always comes first.

there is nothing gray about it.

you tell those families that you intend to medicate for pain, as you would medicate for them, if they were your pt.

when they see your determination, they will back off.

and even if they don't, this is the pt's pain -this is the pt's death - no one else's.

don't let anyone tell you differently.

yes, families are a consideration, without a doubt.

but they should never, ever be our priority...

lest we forget.

leslie

[PMFB-RN, RN]

fwiw in my experience it is usually the oppisit problem we have. unrelieved pain and the family advocating for more pain control. i work night shift. in my hospital nearly all the physicians on at night are residents. sometimes these residents are simply afraid to order enough pain medication. i have often suggested we tranfer to the patient to step down or even icu if the resident is afraid to order adiquate pain control. if the resident refuses (seldom, most know a good idea when they hear it) the transfer or to order what is needed i simply call their boss. now their boss is not expecting to recieve calls at 0200 at home from nurses (that's why there is a resident assinged) and they are usually ticked off, but never at me, it's the resident they get upset with. whatever i have to do to make sure the patient gets what they need i will do. i know many of you feel the same. as far as i am concerned the primary job of an rn is to advocate for his/her patient. everything else we do is secondary to that.

[canoehead, BSN, RN]

. Before I had my first child, I went into it thinking there is no way I wanted an epidural. I told all my friends/family this. Once I was in labor, far different thoughts and wishes went through my head. Just because I expressed verbally that I didn't want an epidural didn't mean that it was unacceptable to me under certain circumstances. Kwim?

I think this is an excellent example to use with the family.

You do have some indication about how the patient wanted to deal with pain- look at the old charts. When he was alert and in pain did he accept medication? If he refused, what was his reasoning?

[NightOwl0624]

Thanks, everyone, for all comments and suggestions. I will go through this thread again more carefully when I have more time.

In the case I'm referring to, the patient did stop moaning after his family member fell asleep. He really did look more comfortable to me, otherwise I would have given him what was ordered for pain. I was wondering then if he was more irritated at what was happening - if he was conscious enough to know - or if the pain improved on its own.

I think the family was suspicious of me from the start. Maybe it was my body language, or how I attempted to educate them on pain management. Frankly, I was still upset that we had to resuscitate him earlier in the week (and my arms still hurt from doing CPR!) Either way, I take part of the blame and will try to learn from my mistakes. I do feel better that I did get an order for morphine for the patient - he had nothing stronger than tylenol when I started shift - so at least it is there if he needs it in the future.

I do know and feel passionately that the main concern is the patient. It is just in these cases when the patient can no longer speak for himself that you feel helpless.

[PMFB-RN, RN]

Frankly, I was still upset that we had to resuscitate him earlier in the week (and my arms still hurt from doing CPR!).

*** I have refused to code certain patients a number of times. I usually say somthing like (to the residents who always come running) "hey you guys do what you need to do but I can not take part in this code for moral and ethical reason". The first time I did it I fully expected to be fired but I never heard anything about it.

[wooh, BSN, RN]

*** I have refused to code certain patients a number of times. I usually say somthing like (to the residents who always come running) "hey you guys do what you need to do but I can not take part in this code for moral and ethical reason". The first time I did it I fully expected to be fired but I never heard anything about it.

I've never thought of it before, but if nurses can refuse to take part in abortions or refuse to hang blood, we SHOULD be able to refuse to participate in a code. I might have to keep this in mind.

[NightOwl0624]

Update - when I went to work last night I found out the patient had just passed. Peacefully, and painless. I guess the nurse who took over already had a good relationship with the family and was able to implement the pain management better than me.

[jt43]

Don't be down on yourself. It's more likely that the family realized the need for pain control. I'm happy it ended as well as could be expected