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.

[Meriwhen, ASN, BSN, MSN, RN]

See if the PT has an advance directive/living will. If the patient does have one, what's in there trumps the family's wishes.

[Altra, BSN, RN]

I've been where you are, at a former job. I will never, ever forget my anger at a woman who, while standing at the bedside of her 90+ year old family member with lung CA with multiple metastases, febrile, septic, moaning, laboring to breathe, said to me, "I don't know why they give these old people morphine so they're doped up and can't talk to their families."

I proceeded to give the Morphine to ease the patient's symptoms and to give myself a minute to control my anger. I simply stared my iciest stare at her before replying, "the alternative is for someone to die gasping for air and in pain." Had she made a move to stop me physically I would have called for additional staff and security.

After the patient was more comfortable, I got the MD in the room and related what she had said, and suggested that the three of us could certainly have a discussion of appropriate care.

You have a responsibility to implement your patient's plan of care based on your assessment. If x, y, and z are ordered for pain, and your assessment leads you to conclude that z is currently the best choice - give it. Get the MD involved if the family requires more education about what symptoms the patient is experiencing, what the plan of care is to manage these s/s, and what alternative courses of action would mean for the patient.

When I was working full-time in the ICU we regularly had patients whose families had unrealistic expectations for their recovery. Meeting with these families to get them to work toward understanding was a daily task of MDs, nurses, case managers and sometimes clergy.

[CrunchRN, ADN, RN]

Thak goodness you are going the extra mile.

Is there an ethics team or a chaplain or social worker you could call in to try to make the family understand the importance of pain relief and the reality that it will not make him less responsive for that reason?

You are the best kind of nurse - go get em!

[classicdame, MSN, EdD]

the family is not your patient. You may need to get the MD, your supervisor, a spiritual advisor or someone else to talk to them to make them realize that the pain meds are there so the patient does not die in agony. Push this. What would you want done for YOU?

[netglow, ASN, RN]

Educate them. Go ahead be graphic. Tell them that cancer pain can be the worst kind of suffering known to man. It is pure torture to those that are cursed to have cancer, and it is our duty to them to look for any indication of uncontrolled pain and try to help them in every way we can. Then, pull out your physiology stuff and teach them how narcs work. Then say, this is all we have to try and alleviate the suffering. Tell them how the drugs as well as other stuff they can do together with you will help everybody know that they have been at the patient's side, attending to needs. Then say, this is an awful thing to have to understand. That, you wish that you didn't have to have this conversation with them. It's what all nurses and all MDs know from experience with this horrible thing, and wish they would never again have to sit and explain this horrible situation to good people like "you", it's a horrible stressful thing this is. But now that they know, and understand, they can maybe take some comfort that they have been right there for their loved one, and tried to end as much of the suffering as they can for him. Have the MD with you if possible.

[Asystole RN]

the family is not your patient. You may need to get the MD, your supervisor, a spiritual advisor or someone else to talk to them to make them realize that the pain meds are there so the patient does not die in agony. Push this. What would you want done for YOU?

I would want you to respect my culture and wishes.

To say that the family is not also your patient is rather naive.

[loriangel14, RN]

We have a professional practice manager.Her directive is that if a patient is in pain it is unethical of us not to treat the pain.Our responsibility is to the patient, not to the family.

[jt43]

I have a sortof off topic question, please feel free to answer in another thread or by PM. I just wonder how and why it is that family members get to decide to keep a patient's diagnosis and prognosis from them? That's just wrong imo, unless there is some extenuating factor. Isn't the patient, the patient? Don't they have a right to complete information about their diagnosis and prognosis? If this man had known, he might have had a chance to express his wishes. Shouldn't he have been the one to decide if he was DNR? Help me understand.

[Altra, BSN, RN]

I have a sortof off topic question, please feel free to answer in another thread or by PM. I just wonder how and why it is that family members get to decide to keep a patient's diagnosis and prognosis from them? That's just wrong imo, unless there is some extenuating factor. Isn't the patient, the patient? Don't they have a right to complete information about their diagnosis and prognosis? If this man had known, he might have had a chance to express his wishes. Shouldn't he have been the one to decide if he was DNR? Help me understand.

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

[Asystole RN]

I have a sortof off topic question, please feel free to answer in another thread or by PM. I just wonder how and why it is that family members get to decide to keep a patient's diagnosis and prognosis from them? That's just wrong imo, unless there is some extenuating factor. Isn't the patient, the patient? Don't they have a right to complete information about their diagnosis and prognosis? If this man had known, he might have had a chance to express his wishes. Shouldn't he have been the one to decide if he was DNR? Help me understand.

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. I think you may be referring to the power of attorney (POA) who guides the care of the individual. The POA does not go into effect until the patient is either deemed incompetent by the state or is incapacitated. Only at that time should the POA be notified or consulted for information, specific patient requests withstanding. Unfortunately many nurses do not understand this and think POA equals decision maker.

[Asystole RN]

We have a professional practice manager.Her directive is that if a patient is in pain it is unethical of us not to treat the pain.Our responsibility is to the patient, not to the family.

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.