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.

[anotherone, BSN, RN]

I reread the original post and it seems like the family doesn't want strong pain meds because they are too sedating and then the pt has even less communication with them. not exactly because their culture doesn't agree with the use of pain meds. Do cultural/family expectations trump everything? Can ethics committees not get involved because then that would be someone imposing their ethics on others? Is the family not doing the same thing to the patient? When you are very healthy it is easy to say, I would never want dilaudid, morphine, fentanyl patches all over etc. When you are dieing in misery,even if you are disoriented, those views might not stay the same. " i know my (insert relative) s/he would want to die in pain as long as s/he could open his eyes to see me a few more times, eve if s/he had no idea who i was".............................................................. maybe,maybe not.

[jt43]

I think it's dangerous to assume that just because a person is a member of an ethnic group or culture that they believe/live consistent with the predominant beliefs of their culture. People are individuals first. Maybe it would help of the meds weren't prn? It doesn't sound like the patient can request anything anyway. Why can't the doc write for pain meds to be administered on an ongoing/regular basis?Also, intentions/wishes can and do change. Without a living will, there is no way to know what this patient thought about if and when pain medication would/wouldn't be acceptable to him. 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?

[wooh, BSN, RN]

It is unethical and illegal to keep information from a patient that has not been deemed incompetent by the state, even then it is unethical... Unfortunately many nurses do not understand this and think POA equals decision maker.

Remember that not all cultures see pain the way Caucasian Americans do. ...

Some people would rather sit in agony than receive pain medications, some of my family members are this way. For personal, spiritual, and cultural reasons many people abstain from narcotic use. Just because you do not understand their ideas does not make them any less valuable or deserving of respect.

So we can withhold pain medication based on their culture but can't withhold their diagnosis based on their culture (because THAT is unethical)????

Keep in mind that even if we do not understand their thinking, it does not make it wrong. ....

If it's pain medication, but if it's giving the patient all the information, then it is wrong?

[CABGx4, ASN, BSN, MSN, CRNA]

I don't know if culture plays a part in these situations or not. Common sense would tell the normal person that a dying person should be comfortable. Unfortunately, a lot of people leave their common sense in the waiting room, right where they should remain. You can try to educate morons all you want; it ain't gonna help. We had this same situation just last week in our ICU. The pulmonary doc said to me "you can't have an intelligent conversation with unintelligent people." So true

[Merlyn]

When I was a young nurse, we didn't have to deal with this directive and that directive. If a patient was dying and in pain. The Doctor would order enough pain killers as was needed. Now in this 'more enlighten age' Nurses, who are some of the most compassionate and caring people on the planet, have to stand by and watch their patients writhing in pain because of some bloody law that says any Hillbilly Hand-fishing expert Knows more about heath care then people that dedicated their lives to Medicine. Do you know why they know more then us? Because Clem never misses the show "House'. He knows all about the Law from Judge Judy. We are terminal from the crush of all the laws. The day that Government came into the healthcare system is the day common sense took a powder.

[NightOwl0624]

When I was a young nurse, we didn't have to deal with this directive and that directive. If a patient was dying and in pain. The Doctor would order enough pain killers as was needed. Now in this 'more enlighten age' Nurses, who are some of the most compassionate and caring people on the planet, have to stand by and watch their patients writhing in pain because of some bloody law that says any Hillbilly Hand-fishing expert Knows more about heath care then people that dedicated their lives to Medicine. Do you know why they know more then us? Because Clem never misses the show "House'. He knows all about the Law from Judge Judy. We are terminal from the crush of all the laws. The day that Government came into the healthcare system is the day common sense took a powder.

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.

[MunoRN, RN]

This comes up occasionally where I work and our answer is "no, we can't do that". Under my state's law a POA cannot refuse palliative care measures including pain control unless the patient has explicitly stated this refusal in Advanced Directives.

A quick google search didn't return the law for my state, but I did find this from North Carolina: "In fact, under North Carolina law, no healthcare agent you appoint has the authority to withhold or discontinue care necessary to provide comfort or alleviate pain."

Medical Care Decisions

[MunoRN, RN]

Another example (Ohio): "Your attorney-in-fact does not have the authority to order the withdrawal of "comfort care." Comfort care is any type of medical or nursing care that would provide you with comfort or relief from pain."

http://www.recorder.co.medina.oh.us/pow_atty.pdf

[mama_d, BSN, RN]

I wish I had an answer for you. I work oncology as well, and hate it when this kind of situation comes up. I'm pretty heated about it at the moment as I just went through a similar shift not long ago, so I'm not going to give any input...no way I could be unbiased right now. Just wanted to say I feel ya, deep breathing, and keep trying. I try to keep in mind that although to us, the patient is the center of what's going on, it's also the most important thing going on in the family's lives, and sometimes they have a hard time separating what they want from what's best for the patient.

Oncology families are like that old rhyme...when they are good (which thankfully is the majority of the time), they are very very good, when they are bad they are horrid.

[rkealy, BSN]

As nurses we do have to understand that the patient is not our family member. If family members feel that they do not want to utilize a treatment for a patient that is unable to decide for themselves that is their right. All we can do as Nurses is educate, utilize the Physician, and then educate some more, then do what we can within our SOP to keep that pt comfortable. After that we have to not take it personally, if I had a family member in the hospital and the nursing staff was judging my requests on how my family wanted to deal with my loved ones death, needless to say there would be a lot of animosity, and consequently your HCAPS scores will drop:)

[MunoRN, RN]

A few more states where it's specifically stated that POA's/family members cannot decline comfort care/pain relief measures for the patient:

Connecticut

Florida

Kentucky

Louisiana

Massachusetts

Nebraska

New Jersey

Oregon

Rhode Island

South Carolina

South Dakota

Texas

Virginia

Wyoming

This site makes it sound as though it applies everywhere (which it probably should):

"Your proxy may not deny comfort measures for you."

FCA: End-of-Life Decision-Making

[wooh, BSN, RN]

I've usually had good luck with going into rooms and just very matter of factly explaining what my plan is to control the pain, with a "she'll probably sleep a lot, but we want to stay on top of the pain, it's so excruciating if we let it get out of control." Not said in a, "How dare you not let me treat her pain" sort of way. More of a, "Here's what I plan to do, and I know you're all on board with it because it only makes sense!" Hit the family with a sensible plan before they have a chance to ask you to do something stupid and cruel. When that doesn't work, who knows what will have to happen, because you can't reason with stupid. (And denying pain relief for someone else is stupid. You don't want pain meds? Fine. But don't refuse them for someone else.

It's great that some states actually have laws on the books saying that proxy can't deny comfort measures. Wish it was all states.