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.

[OCNRN63, RN]

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.

This post just made my day.

[RN, MS, PHN]

Again we get back to the topic of family knowing whats best for their family member as stated by needshaldol. It is too bad that you had a terrible experience with hospice. The plan of care for our patients is to control their symptoms at the end of their disease trajectory and to manage a condition for which the treatment has been optimized. I have had many of my hospice clients improve and become discharged from our service. We cannot keep those on service unless they show a continued decline in their disease process. As far as making money, they highest costs of care are at the end of a persons life and the highest cost are those seen in those who are hospitalized with a terminal diagnosis. I am a faculty member at a University and I also have a background in chronic disease management (heart failure, pulmonary disease, diabetes) as well as 10 years as a CV ICU nurse. I utilize all of my knowledge to provide the best care to my clients and their family in hospice care. I have saved many patients from recurrent aspiration pneumonia by intervening and making sure the patient has a safe care plan. Sounds like your mom had a decline in her functional status with probably weight loss. Those who qualify for hospice must meet strict prognostication criteria to be able to receive services. Medicare fraud is not something that any hospice wants to be accused of.

[RN, MS, PHN]

You should have spoken to the clinical supervisor of the hospice. it sounds like you did not have an inexperienced RN Case Manager. Actually, oxycontin cost more than Morphine sulfate so I am not sure why they did that.

[RN, MS, PHN]

Actually I would not trust anyone in health care today. You need to advocate for yourself and your family members. We as nurses should really understand that. With the internet and all of the easily accessible websites (medscape, mayo clinic, webmd, etc) consumers are doing more research and demand that we tell them why we do what we do-they want to know and want us to be accountable for the care they are receiving.

[RN, MS, PHN]

I always tell the patient and family what the patient is receiving. They may know that the patient has had a reaction to a medication that is not documented or reconciled. It also helps in teaching them so discharge is much smoother and you are not trying to educate them about all their meds as they are going out the door. I want my nurse to tell me what she is giving me...it might prevent a medication error.

[Guest372004]

We have to tell the patient what we are giving them but if a family member is present I always ask the pt permission to discuss with other people there. I would not want to be in the hospital with friends/family possibly knowing info that is private. I have no problem asking people to leave the room and "take a break in the waiting room".

[RN, MS, PHN]

That is perfect!

[detomom]

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.

Have you tried Reiki? It means universal life energy. It's a form of energy healing that is non-invasive. It works very well for pain. And for a patient such as yours who is now DNR/DNI and in hospice, it helps the spirit to transition easier. Talk to your administrator and the family to see if it's offered where you work. Reiki can also be done on the family and they can be taught to administer Reiki to their loved one to help at this difficult time.

[Wishinonastar, BSN]

Needshaldol you too might have been one of those family members who was suspect as I was. How could we question pain control? Sometimes families do know the patient best.

[Guest372004]

Are you serious? Reiki? If I talked to supervisor regarding that, all eyes would roll. Yes, do what is helpful for sure. Also when a family member comes to "find me" (which they do) and ask for pain med for their loved one, I do not tell them what is available. I assess the patient and give what I think is best.

[Guest372004]

I do pay attention to family but there is a limit. Sometimes there comes a time when staff knows best esp when the pt has been in hospital long time.