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.

[PMFB-RN, RN]

If my patients family wanted a cancer diagnosis withheld from them I would immediately tell the patient about their diagnosis. Not to do so is highly unethical. Why does it matter what the family wants for pain control? I would give ordered pain medications as ordered and appropriate regardless of what the family wanted. I have done exactly that on many occasions. I am the rapid response nurse for my hospital. Staff RNs frequently call me in cases exactly like described in the OP. I do my best to educate the family and will be graphic and detailed. However if it fails the patient gets the meds anyway. The exception is when one of the family is the power of attorney for health care and is legally able to make such decisions for the patient. In that case if I fail to change their mind I will call in the appropriate Chaplin, physicians, and anyone else I can think of. On time I told a family that we would have to transfer the the patient to another facility as we could not take part in their cruel and unethical choices (used those words). They relented.

[NightOwl0624]

Not off topic at all, and not done anywhere I have worked. It's ... really unthinkable ... for someone who is oriented at all.

I agree... the problem comes with someone who is "somewhat" oriented, who doesn't really qualify for treatment, and comes with very strong family dynamics. I think it is pretty common in certain cultures for the children to try to "protect" their parents from knowing the reality of their illness. AND I also think that often times the children are right - their parent doesn't really want to know.

We are supposed to respect other cultures, but where do you draw the line?

I can tell you, though, it wouldn't happen in my family.

[anotherone, BSN, RN]

The family is NOT your primary patient. Get the MD invovled. Tylenol isn't going to cut it. Educate the family about the SUFFERING they are encouraging. Just because it is someone's "culture" does not make it ethical, by far...............

[NightOwl0624]

Remember that not all cultures see pain the way Caucasian Americans do. When in doubt I would medicate but I would definitely heed the patient’s wishes, if the patient was incapacitated then I would seek advice from the legal appointed guardian of that individual. The only ethical course to take to respect the patient’s wishes, anything less is truly unthinkable. If the patient is unable to tell you their wishes then consult the responsible party.

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.

Yes... I think that is exactly what is happening here. This is a strong ethnic family. The patient can't express himself anymore, the pain meds are PRN, and the family is stating what they think is best. I hope they are speaking for the patient and not their own selfish reasons. I don't know what the patient wants for himself, because he can't tell me. I have in the past ignored the family when I could communicate with a patient and asked privately if he wanted something for the pain - I have no problem whatsoever doing that. This case just makes me really uncomfortable.

I don't get their way of thinking, I would want myself and my loved ones as comfortable as possible.

[anotherone, BSN, RN]

For what it is worth, maybe the patient didn't even agree with his culture's views on in managment. Not everyone int he same culture agrees/follows everything their culture dictates. Also sometimes these things get lumped as a cultural issue when it is really a personality/family issue.

[Asystole RN]

I agree... the problem comes with someone who is "somewhat" oriented, who doesn't really qualify for treatment, and comes with very strong family dynamics. I think it is pretty common in certain cultures for the children to try to "protect" their parents from knowing the reality of their illness. AND I also think that often times the children are right - their parent doesn't really want to know.

We are supposed to respect other cultures, but where do you draw the line?

I can tell you, though, it wouldn't happen in my family.

A definitive decision needs to be made to determine if the patient is able to make their own decisions. Even “somewhat” orientated people are able to make decisions. I would have the primary at least write an order that the patient is no longer able to make decisions, extensive and thorough charting needs to follow.

As to respecting other cultures, remember that you are a servant, an advocate for the patient’s wishes and goals. Your religion, values, and ethics have no place interfering with the patient’s wishes. If you are unable to implement the patient’s wishes then you need to notify your supervisor and step aside.

Dum vivimus, servimus - While we live, we serve.

[Altra, BSN, RN]

I agree... the problem comes with someone who is "somewhat" oriented, who doesn't really qualify for treatment, and comes with very strong family dynamics. I think it is pretty common in certain cultures for the children to try to "protect" their parents from knowing the reality of their illness. AND I also think that often times the children are right - their parent doesn't really want to know.

"Strong family dynamics" are not a reason to alter a plan of care deemed necessary to control a patient's pain and other uncomfortable s/s.

[Asystole RN]

I don't get their way of thinking, I would want myself and my loved ones as comfortable as possible.

Keep in mind that even if we do not understand their thinking, it does not make it wrong. Jehovah’s Witnesses, Christian Scientists, and the Amish to name a few all have very unique views on how health care should work. It is not our place to tell them that they must do XYZ because their religion/culture/values are wrong. It can be heartbreaking to watch someone die of a curable disease or suffer in pain but it is their life and we serve their needs, not ours.

Here locally, many of the Apachean tribes do not believe in DNR/Hospice/Comfort Care so we watch 90 year olds with 0 brain activity suffer on vents for years. I serve their needs and thus respect their wishes.

[Asystole RN]

For what it is worth, maybe the patient didn't even agree with his culture's views on in managment. Not everyone int he same culture agrees/follows everything their culture dictates. Also sometimes these things get lumped as a cultural issue when it is really a personality/family issue.

What if the patient was a time traveling alien?

When the patient’s wishes are unknown we follow the dictates of the legal decision maker and take heed of those who actually knew the patient before becoming incapacitated.

[Altra, BSN, RN]

If my patients family wanted a cancer diagnosis withheld from them I would immediately tell the patient about their diagnosis.

Did just that this past week. A family wanted a diagnosis withheld from a patient -- they said so to me while she was having the CT scan. I probed a bit for their reasoning, and what they related to me was that the patient "tends to be nervous". I noted that the patient was already prescribed meds for anxiety and regardless, would be monitored closely while in the hospital. They persisted.

The CT scan result was even worse than we had anticipated, and the patient is not a surgical candidate. I told the admitting MD what they family had asked and she said, "then let's go tell the patient right now while the family is here, shall we?" And we did.

Families do this out of their own anticipatory grieving. They are entitled to begin their own grieving process, but they are not entitled to deny the actual patient the same time frame to absorb and digest the news psychologically and philosophically. That is equally as cruel as withholding meds to ease suffering.

[anotherone, BSN, RN]

Just another example of families/patients who have no idea what they are doing dictating care................. Sure maybe this fmaily/patient do know, but most of the time they have no idea yet still think they are experts. Do you have palliative care in your facility? Have any of the doctors discussed pain management with the family?

[PMFB-RN, RN]

keep in mind that even if we do not understand their thinking, it does not make it wrong. jehovah's witnesses, christian scientists, and the amish to name a few all have very unique views on how health care should work.

*** we frequently have amish patients in our hospital. many of my neighbors are amish as well. i haven't noticed any unique views on health care from them, except that the hospital and physicians all love them cause they pay their bills in cash and are meticulous about following prescribed treatment plans. what unique views have you noticed from amish?

here locally, many of the apachean tribes do not believe in dnr/hospice/comfort care so we watch 90 year olds with 0 brain activity suffer on vents for years. i serve their needs and thus respect their wishes.

*** i personally find that disgusting. in my view if they want to inflict such things on their family members they should have to foot 100% of the cost themselves. my best guess is that their views would change quickly.