When family refuses IV pain meds for cancer pt...?

[BiohazardBetty]

What do you do when a pt's spouse refuses to allow you to administer IV pain medications as ordered? Pt has end stage cancer w/ brain mets. DNR. Confused most of the time. Has not been deemed incompetent, has no power of attorney. Says "no" when you ask her if she's in pain, all the while she's yelling out that she's in pain. Spouse tries to console her if he's in the room, but is often gone... But has an unpredictable schedule.

Spouse said he doesn't want pt "knocked out" & she "isn't herself" after she's had IV pain meds. (Like rolling around in pain IS her??) He will allow PO Percocet 10, but pt has swallowing difficulties r/t confusion. Spouse has been educated many times by many different nurses regarding pain associated w/ pt's type of cancer.

Talked to the doctor during rounds, but he offered no guidance and the spouse wasn't present. Went to the charge nurse who said to talk to the nurse manager who said to address it with the social worker who said to contact the oncologist (again) who said that if the pt can't swallow then "she'll just have to hurt." Seriously??!!??

What would you do?? It feels ABUSIVE to allow her to be in such awful pain for so long, but the spouse will cause a HUGE scene if he thought the pt had received IV pain meds. What are my options to protect my pt & keep her at least reasonably comfortable??

[narcolepticnurse]

These situations are awful when they arise. It's also intensely confusing as to whether or not to treat the patient for pain when they give very mixed messages as you've described. If she was telling you (confused or not) in a definite way that she is in pain and that she would like pain medicine, then I would say it doesn't matter what he wants. However, here... What I would do is, when I heard the patient crying out that she is in pain, I would ask, "Do you want medicine to help the pain?" If the patient says, "yes" then I would give her whatever ordered pain medicine that she can take safely because your obligation to treat her pain would surpass your obligation to make her family happy. If she says, "no" then I would not give it.

If that is not applicable or helpful here, other than what other people have suggested i.e. contacting the ethics committee, there may not be much you can do. Just be sure you're looking after yourself too and that documentation is tight (including the exact words of what the husband tells you regarding him not wanting her to have IV pain meds and all communications with the physicians, management, social worker, etc.) in case there's litigation later over inadequate pain control. You want all of your efforts to prevent her suffering to be recorded.

[R!XTER]

I was thinking about this thread at work yesterday. I had a pancreatic cancer patient yesterday with mets to multiple sites including bone. She came in because PO home meds were not relieving her pain. This poor woman was clearly suffering terribly. Her entire body was shaking from the pain and no matter what I tried to do for her she could not get comfortable. Her pain was barely relieved with Q1h dilaudid. She mentioned to me that her family has been telling her she takes too much pain meds. Luckily she was a&ox3 and able to speak for herself because I just looked at her straight and told her "you tell them that bone cancer is one of the most painful forms of cancer and you take whatever you need to to make yourself feel comfortable" she seemed so relieved after I told her that.

A separate issue is that there seems to be a severe lack of education when it comes to cancer patients. Maybe the docs are nervous to give it to the patients straight but this woman and her family did not seem to know that this was a terminal diagnosis. They had only discovered the cancer a few weeks ago and it had already metastasized everywhere yet she was on very aggressive chemo, the family was telling her to lay off pain meds, and she was telling me she can't wait for summer to be over because by then she'll be done with all these treatments etc. I guess it is possible that they decided to pursue aggressive treatment and try to remain positive by making future plans and all but I got the impression more that they were just clueless and that no one had had a serious conversation with them about likely outcomes. It just made me really sad because her chances of making it to the end of the summer are probably really really slim. My heart went out to her.

[dishes, BSN, RN]

I doubt that no one had a serious conversation with the patient and family about the outcomes. I really believe that when all you've got left is hope, no one should try and take it away from you. If someone loses all hope what do they have left?

[emilee1978]

There's hope and then there's delusion...........

[gcupid]

Easiest thing to do is to decline any future assignment. Switch patients.

[Penelope_Pitstop, BSN, RN]

Easiest thing to do is to decline any future assignment. Switch patients.

And pass the buck to someone else? Niiice...

[nurseprnRN, BSN, RN]

I doubt that no one had a serious conversation with the patient and family about the outcomes. I really believe that when all you've got left is hope, no one should try and take it away from you. If someone loses all hope what do they have left?

The hospice people will tell you that when we can no longer hope for cure, we can still hope for comfort, for someone to listen, for someone to look after your family after you're gone, for being able to live the days you have left in the best way possible. It is perfectly OK to say those words to patients. I have, and more than once, and it is heartwarming to see how it reassures and calms them and gives them permission to talk about what is important to them in their last days. I recommend it.

[dishes, BSN, RN]

In the situation that Rixter described, the patient had been newly diagnosed with pancreatic cancer within the last two weeks, and even though the chances of survival are slim, the patient was offered and accepted chemotherapy treatment. It sounds like standard practice to me, as the chemo may buy the patient a bit more time. Do you think it would be better to not offer chemo and just offer hospice care in newly diagnosed pancreatic CA patients?

[R!XTER]

In the situation that Rixter described the patient had been newly diagnosed with pancreatic cancer within the last two weeks, and even though the chances of survival are slim, the patient was offered and accepted chemotherapy treatment. It sounds like standard practice to me, as the chemo may buy the patient a bit more time. Do you think it would be better to not offer chemo and just offer hospice care in newly diagnosed pancreatic CA patients?[/quote']

No, not at all. I think all options should be offered and the patient should be the one to choose BUT it all has to be with the proper amount of education regarding realistic outcomes and alternatives I.e. comfort care. Like I said, I don't know what was discussed with them previously, it's possible they were given all realistic options and chose chemo, and if so then I support that. I would never take it upon myself to discuss all that with someone I just met, having no knowledge of what happened previously. at that point I was just trying to control her pain and make her comfortable. But from my observation, it did not seem like they were aware of the gravity of the situation. Again, maybe they were. I don't know for sure. I was just making an observation that I've noticed a lot of cancer patients seem under educated. My ER sees a lot cancer patients and I've noticed this trend. It's possible that they are being educated and instead choose to cling to hope, or possible are in denial, which is fine, I'm not going to get in the way of that.

[dishes, BSN, RN]

I understand what you mean about patients seeming under educated when they face of an overwhelming diagnosis. According to adult education theory, an average adult, in a normal learning situation, requires new infromation to be repeated to them at least seven times before they comprehend it. Imagine how many times people who are experiencing the emotional crisis of being given a diagnosis with an extremely poor prognosis need the information repeated.

[R!XTER]

Absolutely. I have seen many situations where patients come in, receive overwhelming diagnoses, or families are told overwhelming news about their loved ones, and when we explain to them what's going on often you can see them just blank out while you're talking to them because it's too much to handle. I completely get that. Just this past week I had 3 end stage cancer PTs who came in for pain control. I try to find out what they know about their diagnosis subtly, but I'm meeting them for the first time and the primary concern at the moment is the pain. The ER is also not a realistic place to provide this type of education. It's the responsibility of their oncology team.

[dishes, BSN, RN]

I agree R!XTER, there should be a better way for recently diagnosed CA patients to reaccess healthcare then through emerg. What happens when these patients come to your emerg department, are they seen by their oncologist in emerg? or strictly the emerg staff?