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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.
I have had this fear from families before when I worked onc. or they will say "I don't want them to get addicted". Okay so seriously, a person is dying of cancer and fear of addiction is their problem? They need education on the matter at hand.
First and foremost, unless they have power of attorney over healthcare then they cannot dictate what medicine you give. You need to do the assessment and give the meds as the doctor has prescribed. Use Wong-Baker or another scale to justify the need.
Also- I have seen where family members don't tell the patient they have cancer. Well here is a perfect example of this patients rights being violated in all sorts of ways.
He didn't know he had cancer, now he is unresponsive and unable to say his last goodbyes. Family members can be so ignorant sometimes. UGH!!! Not only did they deprive this man of saying his last goodbyes (potentially), they are also making him suffer in pain. Hey- whatever makes them feel better I guess.
I would definitely get someone from palliative care, social worker, clergy, physician to talk with them or find the voice of reason in the bunch and see if they can help.
Remember we are patient advocates. You are his voice.
This family should have never been told the patient had cancer before the patient was aware. UNLESS- he signed a DPOA of HEALTHCARE> the patient bill of rights is attached...
http://mhcc.maryland.gov/consumerinfo/hospitalguide/patients/consumer_help/bill_of_rights.htm
I say this with the full and complete understanding that this happens all the time and UGH!! I never understand it and I totally understand and feel your frustration~~ good luck!
We all get into this situation. Especially with the dying patient. I had one the other day whose son had her necrotic leg amputated!! So this poor woman, who was dying anyways, was put in more misery due to the son. Now the woman is in agony and he tells me that it is her "back pain" and she only needs tylenol and NOTHING stronger. Sometimes the nurse knows that no talk will change the family due to what they are going thru. So what do I do? As soon as the family member leaves the room I get in there and give out the goodies. And I pass it along to the next nurse if the family is still there.
There are many subcultures within families that dictate communication and decision making patterns, that is why advance directives or polst are so important. To work with the family they need more education and counseling to increase their understanding of what is happening with the client. Some clients do not want to know if they are terminal or have cancer-taht is part of how they deal with their health, what is difficult is that you do not know what the client actually wanted. Most of the time the client does know anyway. As a hospice nurse I approach the family by saying that if the patient asks I cannot hold that information from them. This family obviously is in denial and do not want the patient to give up hope. They feel they are protecting the client particularly since they feel helpless in not knowing what they can do. The MD managing the client along with the healthcare team need to educate the family as to what is happening (stress response and release of stress hormones with pain, patient's prognosis, what pain looks like, moaning, guarding, furrowing of brow, restlessness, increase respiratory and heart rate,etc). You need to identify the family's pattern of communication-is there one spokesperson for the family that has been either designated by the client or the family. Perhaps this is part of the family's grief reaction with anticipatory grief. I would think that the client would not want this to be a painful experience for their family members either and that they trust family's decision making. The family needs support and education so they can begin to let go and it needs to start with the managing MD sitting down and taking the time to talk to the family. The nurse can help by finding tasks that the family can do to help with the care of the patient without causing pain. If you involve the family in the patient's care, you have them identify when the patient is in pain, give the patient a small dose of pain med and then let the family see the relief that is seen with the patient's pain response. Explain the patient may be more sedated for the first few days but will build up a tolerance and will become less sedated. Tell them it actually will help the patient's breathing and dilate the patient's coronary arteries to help blood flow and oxygenation to the heart as well as stop the stress response. This can be reinforced after the MD has an educational discussion with the family. Death is a family event-not an individual event. It is another rite of passage experienced by all involved. The general public do not have all the education and we are responsible to work with the families-not impose what we feel is right. It is very different being a guest in someones home versus having a patient in OUR home and culture in the hospital where we are in control. This is scary for families and patients.
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."
Good catch.
I think the medication ordered is your call not the family. Tell them this is what is ordered. Do you ok blood pressure meds with the family? Or do you give them? Pain meds are no different. There is a medical need- pain, and an ordered treatment- pain med. I agree this is an ethical issue and you have a duty to care for the patient's pain.
We all get into this situation. Especially with the dying patient. I had one the other day whose son had her necrotic leg amputated!! So this poor woman, who was dying anyways, was put in more misery due to the son. Now the woman is in agony and he tells me that it is her "back pain" and she only needs tylenol and NOTHING stronger. Sometimes the nurse knows that no talk will change the family due to what they are going thru. So what do I do? As soon as the family member leaves the room I get in there and give out the goodies. And I pass it along to the next nurse if the family is still there.
*** I really do not understand why you are waiting for the family to leave!? Why are you withholding pain medication for your patient who is in pain? If the family tries to prevent you order them out until you are finished properly caring for your patient.
I wonder sometimes if this on occasion, is a family member getting control finally over someone who has been cruel and controlling to them at some point in their lives. Pay back is a ***** - jumping at the chance to pay it back and then some.
My intuition has told me in the past and so I've been wary of a few family members. I strongly felt the potential was there...
I'm all for the commando pain relief. You can lay it out and tell the MD what is going on, but it's like pulling teeth to make one go against family, and, the MD can manage not to witness the throws of pain that we do. So, it's up to us to just get the job done for the patient. You just have to know when to stop the debate. IF you go too far with an unwilling family, they will push the MD to work against the patient... then you gotta go get a baseball bat and knock some sense into the MD... goes downhill from there. So best to go commando.
You know as an aside I remember recently my own experience with my mother- different scenario but she was on hospice with end stage COPD. They gave her prn sublingual morphine which was working well with her taking it at night and occasionally when she was not feeling well. She denied any need during the day most of the time. They kept pushing and pushing her to take it. I stayed out of it since she was a retired nurse and I thought she could judge and could speak for herself.
Then they switched her to oxycontin. Big change. She started forgetting her meds, screwing things up. She was out of it and ended up dying because of it. She made a mistake that cost her life. I never wanted her to suffer but I did not like her losing her ability and her cognition because they insisted she be medicated 24/7. There are those times when the family knows the patient better than you do. I remember her telling me how confused she had been once in the hospital on percocet. She could only tolerate certain meds. But morphine is too expensive and that is all hospice cares about sometimes. Not the same situation I know, but they may have thought I was nuts or trying to deprive her too. I just thought if it isn't broken, don't fix it. But they HAD to follow protocol and lower the costs.
I could not do anything about all this, I knew her death was inevitable, but it should not have gone the way it did. She should have had a more comfortable death at home as we wanted. Instead she ended up with major problems, med errors and dying in the hospital.
Unfortunately I work at a hospital that is all about "caring for the patients family". Yes indeed. We are more concerned with our image. When a pt appears to be in pain for the nurse, but does not appear to be in pain for the family the family that is in control often gets it. I do not withhold the med for long......no longer than most pts that ask for pain med and do have to wait a few minutes. I cannot help it that I work at a "hoity toity" hospital.
And don't get me started on Hospice!!! Yes, it is good for some but not for all. Hospice almost killed my mother 3 years ago until I fired them. Mom is fine. She had a fall last month, was put in the hospital and again Hospice (different hospital, different hospice) wanted her out of her misery. Mom is now walking, 100% there mentally, has no incontinence, etc. There is a lot of money to be made by hospice. Sorry folks, again, agree it is good for certain patients.
Merlyn
852 Posts
What ever happen to the line in the oath that reads,"...and dedicate myself to those place within my charge." I guess it was to Un-PC for some Joe Six-Pack. I've been away from Hospital Nursing for some time. Do you mean that Nurse's gets points like a hockey player for nursing care? Such a Business.