When do you say enough is enough?

**RosesrReder, BSN, MSN, RN** · Nov 15, 2005

I hope I can get some responses here. I don't know too much about hospice except you try to make the pt. as comfortable as possible. Recently, we admitted an end stage lung cancer on our med/surg floor. She has been in and out of the hospital for a month. Within this month I have seen a BIG decline in her health. At first she would get up to the BSC and eat small meals. She was admitted again 2 days ago with a g-tube. I'm a CNA and when I go in to get her vitals, do her bath, etc. she grabs my hand and asks me to lean close to her mouth. What she asks me makes me cry. She asks "why won't they let me die?" Family is who authorized the g-tube and they are constantly at her bedside, as that's why I have to lean close to hear her. I don't know how to answer her. I can tell when I turn her that she has lost all hope. She is in such extreme pain that I cannot begin to comprehend how she really feels. Family is constantly encouraging her to eat and drink, but she doesn't want to. I can tell that she has given up. She is not receiving hospice care, as her family thinks that would mean definite death. I'm to the point that when I take care of her I don't want to touch her because she screams in pain. I ask her if she is comfortable, if she wants to turn, etc. and she usually refuses. Family jumps in and says I must turn her, even though it's against her wishes. What do I do? I feel that the dr. should have stood up for the PATIENT and NOT the family. I don't want to make family members mad by not following their instructions but I feel that my first duty is to the patient. What do you say to a pt when they ask you 'why won't they let me die?' I feel that as a CNA I can't do anything about it. How do you handle the end of death questions and when do you decide enough is enough?
BTW, the pt. has no advance directive.

I have no advice, but do think this post got buried. Hopefully it will go back to the top and someone will be able to advice. :)

pricklypear · Nov 15, 2005

I think we all come across pts like this, more often than we would like. Your patient sounds like she might be able to make her own decisions regarding her treatment, why isn't she? Unfortunately, it is not up to US to decide when enough is enough. That is either for the patient, or whomever speaks for the patient. It's really tough to watch. As a CNA, there isn't really much you can do, except let the pt's nurse know what she is saying to you. Sometimes social services can get involved and help the family see that the patient is suffering.

A lesson for all of us to have written advance directives, and make our wishes clear to our family as soon as possible. And even that sometimes isn't enough to keep a family from hanging on - living wills can be denied or revoked by the family. I've told my family I will haunt them in the worst way if they ever do anything like that to me.

truern · Nov 15, 2005

Bethin, sweetie I'm so sorry you've had to experience that.

A couple weeks ago I cared for someone who'd gone to the doctor simply because she felt exhausted all the time. She thought maybe she had anemia or needed vitamins. He sent her to our hospital for testing and she was found to have leukemia. She and her family were devastated, needless to say. She went downhill fast, had horrible reactions to the chemo, but her family refused to see it. They insisted that she be a full code, and she didn't want to go against their wishes. Eventually the doctor talked to the family and explained the options....none of which were pleasing. She didn't want to be coded, but the family felt that if they agreed with that it was as if they were giving up hope.

Bless her heart, she passed away that week....with her family close to her.

Please don't think bad of them, Bethin...they just haven't realized that it's letting her go in peace, not giving up on her.

Laurell28 · Nov 15, 2005

Please report what this lady is saying to the nurse and the social worker. What they can do is try to set up a meeting with the patient, the family and hopefully the MD/NP to voice the concerns and offer solutions. Hopices will give informational meetings if asked. Unfortunately you can't control what the family will do with the information. I'm glad that you're there for this lady. You sound very caring.

RNSUEIA · Nov 15, 2005

I would speak to the primary nurse caring for this patient. See if she will intervene with the physician. This family needs to be educated. A good and thoughtful hospice nurse can often bring around a family in denial. This patient deserves better. Please hurry.

sue hospice · Nov 16, 2005

I work as a hospice liason in the hospital setting I run into this situation often. Their are many curcumstances that happen in a persons family and life that cause the reactions we cannot understand. cultures, family dynamics, families acceptance of death. We can only educate and try. A aide once said to a family in this same instance, your mom keeps asking to die..sometimes a small seed can flourish into a rain forest. Keep being the advocate you are.

Fortunately we have a pallative care team, and the MD's are very good at explaining to the family the process of dying.. sometimes clergy and the social workers on the floors can be your advocate. I have found that sometimes the docs and nurses may not have the time to listen, so bring it to their attention, I have never seen one ignore the statement.. thanks for sharing

aimeee, BSN, RN · Nov 16, 2005

I echo what others have said, keep telling the nurses what she says, and the social worker on the floor, and anyone else you can find to listen to you. The other thing you can do is keep reporting her symptoms of pain. If she is crying out in pain everytime you touch her, she deserves to be medicated before you do your care. I hope there is someone on the staff there who can work with the family to bring them to a point of peace and acceptance.

req_read · Nov 16, 2005

Great advice all.

I worked ICU for a number of years before switching to hospice... which I think is a common reaction by nurses to this type of situation.

One of the contributing factors is, of course, litigation. The patient is not likely or even capable of suing... after all, she's dying. But the family can and may very well file suit unless the doctors and nurses do as they are told. It takes conviction, skill and guts to stand up to misguided families.

I had an ER director (MD) tell me that even in cases where there is a DNR posted to the patient's wall, when an ambulance arrives and a family member demands a resuscitation effort the ambulance crew should disregard the DNR and resuscitate. Why? Because the family is more likely to sue (or be capable of suing) than the patient.

I have been in a hospice situation where the wife (my patient) died and the husband called an ambulance. He wanted her resuscitated but I ordered the paramedics out and told the husband "No." He did not sue... but I was darned lucky! It was one of those situations that seemed right at the moment but afterwards made me a little weak in the knees... knowing my career had been dangling by a thread.

I do not advocate doing what I did. I was just lucky. All the other advice in this thread is better than mine. But I think this story illustrates how frustrated we all get at times.

andyg · Nov 16, 2005

I've been at this for 15 years and you always run into family members who are not willing to let go or give up, mainly because of guilt issues. First thing as a CNA you have the same responsibility to report to the nurse every time she appears in pain. We are the "patients advocate" no matter who we are and it should be reported to the physician each time. You really don't say why the patient is "ready to die" many times it is because of the pain and discomfort they feel, if you get that more under control then she might have some additional quality and not feel as poorly. Second you don't say what age she is, which a lot of times requires different approaches to how the family could be "guided" through some of their issues. One other thing is to make sure the primary Doctor is aware of all these things so they can also get involved, many times the patient will not verbalize these things because the family is listening . good luck

aimeee, BSN, RN · Nov 17, 2005

another resource: Each hospital has a little different set up but in ours the RN Care Managers are wonderful patient advocates who can set the wheels turning to do what is right. Often it is the Care Manager who suggests to the physician that perhaps its time for a discussion about hospice for the patient when they go home.

bethin · Nov 18, 2005

I've been at this for 15 years and you always run into family members who are not willing to let go or give up, mainly because of guilt issues. First thing as a CNA you have the same responsibility to report to the nurse every time she appears in pain. We are the "patients advocate" no matter who we are and it should be reported to the physician each time. You really don't say why the patient is "ready to die" many times it is because of the pain and discomfort they feel, if you get that more under control then she might have some additional quality and not feel as poorly. Second you don't say what age she is, which a lot of times requires different approaches to how the family could be "guided" through some of their issues. One other thing is to make sure the primary Doctor is aware of all these things so they can also get involved, many times the patient will not verbalize these things because the family is listening . good luck

The pt. is elderly. I don't remember her exact age but she's in her 80's. I tell the nurse each time she asks "why won't they let me die?" She seems so tired and you rarely get a response from her. Not because she's unconcious, but because she is so literally exhasuted. She's getting alot of pain meds but those don't take the pain away completely. She just wants to rest. Refuses to get up anymore and I can understand that.